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Location: The best kept secret in TX | I've tried to post to the boards of the Scleroderma Foundation but feel so out of place.... Hoping I can find someone here...
Has anyone on the boards been diagnosed with Scleroderma or CREST Syndrome?
My two year old daughter has been diagnosed with both Limited & Systemic Scleroderma with CREST Syndrome. She is on a medication that may or may not help with her blood circulation. (sop far it has not and we are almost finished with one bottle with 4 refills left....) Since I know Bear will ask the medication is compounded into a liquid form and is given orally 2x daily with a 5mL dose. Pentoxifylline I think is how the medication is spelled. I was told it would open up her vessels to allow for more blood flow to keep her warmer. This raises her BP and makes her extremely dizzy, clumsy, and exhausted...
My question is: How in the world do you keep warm when you swim?? The daycare called me to say my little one played outside for maybe 10 minutes in 90 degree weather with a sprinkler and had a Raynaud's attack and had to come inside to warm up... She was wearing a surf suit. Long sleeves, water shoes, long pants.... She's going to miss out on a lot if I can't keep her warm this summer while playing outside with water....
Anyone have any suggestions.... I'm at a loss... everything made to keep people warm is either not water proof or doesn't come in toddler sizes....  |
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 A Somebody to Everybody
Posts: 41354
 
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-05-17 5:03 PM I've tried to post to the boards of the Scleroderma Foundation but feel so out of place.... Hoping I can find someone here...
Has anyone on the boards been diagnosed with Scleroderma or CREST Syndrome?
My two year old daughter has been diagnosed with both Limited & Systemic Scleroderma with CREST Syndrome. She is on a medication that may or may not help with her blood circulation. (sop far it has not and we are almost finished with one bottle with 4 refills left....) Since I know Bear will ask the medication is compounded into a liquid form and is given orally 2x daily with a 5mL dose. Pentoxifylline I think is how the medication is spelled. I was told it would open up her vessels to allow for more blood flow to keep her warmer. This raises her BP and makes her extremely dizzy, clumsy, and exhausted...
My question is: How in the world do you keep warm when you swim?? The daycare called me to say my little one played outside for maybe 10 minutes in 90 degree weather with a sprinkler and had a Raynaud's attack and had to come inside to warm up... She was wearing a surf suit. Long sleeves, water shoes, long pants.... She's going to miss out on a lot if I can't keep her warm this summer while playing outside with water....
Anyone have any suggestions.... I'm at a loss... everything made to keep people warm is either not water proof or doesn't come in toddler sizes....
I dont know anything about this, but just wanted to offer you and your little girl a bunch of hugs and prayers that this is fixed..   |
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Expert
Posts: 3815
Location: The best kept secret in TX |
Thank you Roxie! Currently, to my knowledge, there is no cure for Scleroderma, or CREST. I have been raising donations for research tho. I have Faith in my God that his plans for her are greater than any I could imagine. I have Hope that God has already started healing her. And I pray daily for a cure. . |
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  Fact Checker
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Location: Displaced Iowegian | I am totally ignorant regarding this syndrome but pray that you get the answers and help that you need.....it sounds like it is going to be a challenge. Hopefully, Scott will see this thread and respond if he has any suggestions. |
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 Extreme Veteran
Posts: 336
Location: Missouri | I have no answers, but prayers. A friend of mine's sister had Scleroderma. If you would like I can pass along your email to her. She might have some insight or helpful sites, groups, etc. Feel free to pm me. |
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Location: Oklahoma | WoW! that's so sad! Praying for your little Girl!!! |
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Extreme Veteran
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Location: Lost in the swamps | I have good little barreling friend that her dad has scleroderma, thickening of the skin and organs.
look up friends of the marquettes in FB. They can get you contact info to the family.
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 BHW Resident Surgeon
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Location: Bastrop, Texas | I just barely caught a glimpse of this. This is a very rare condition in kids. In fact, I really haven't seen all that many adults with Scleroderma or its variants. As the OP knows, this disease has potential effects on virtually every organ system. I'm not going to go through a detailed discussion about this, because there is a lot of information available....like that support group on FB.
As far as the pentoxifylline goes, my experience goes back over 30 years when the drug was first introduced as a pill for patients with peripheral vascular disease. It was supposed to be particularly good for diabetics with small vessel disease and non healing ulcers. Anyway, it was used for a wide range of vascular diseases, and the results were not really very good at all, in my opinion. As I recall, the way it worked was that it basically made red blood cells more supple and malleable, thus improving their ability to "squeeze by" tiny blockages in arterioles. Great idea.....didn't make much difference, clinically. Now in the cases of Raynaud's phenomenon associated with CREST, that's different. It supposedly works reasonably well for that.
You need to understand that your child's condition is something that 99% of docs will never see. I'm know I haven't. I also know that many patients with Raynaud's disease, either alone or as part of a disease complex like CREST syndrome, often do benefit from a class of drugs called "calcium channel blockers". They basically cause vasodilation, so this is one possibly useful suggestion you might want to look into. The commonest calcium channel blocker used for this is a drug called. "Nifedipine". Another class of vasodilator drugs includes a drug that operates by a different mechanism, "iloprost".
Ask her rheumatologist about those two drugs: nifedipine, and iloprost.
As you know, cold temperatures and emotions can precipitate the painful vasospastic episodes. This might sound extreme, but a wet suit, including gloves, might be options to consider. The combination of a different drug and wet suit just might enable her to enjoy swimming. Some of those wet suits are very cool looking!
Wish I could help more!
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BHW Resident Surgeon
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Location: Bastrop, Texas | I was talking about a REAL wet suit. I'll betcha anything if you look hard enough, you can have one made for a toddler, including the gloves. Those things also improve buoyancy and they are designed to keep divers warm in freezing water. |
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Blessed 
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 My Heart Be Happy
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Fact Checker
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Location: Displaced Iowegian | I came back to this thread this morning to bump it up. Hopefully, you will connect with some patients or parents of children afflicted with this same syndrome. Praying for you and your sweet child ......
Edited by NJJ 2017-05-18 9:37 AM
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Expert
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Location: The best kept secret in TX | Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down. 
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys....  |
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 Shelter Dog Lover
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| Many prayers, seeing our children suffer is so hard. I don't know anything about this disease but my niece was born with a very severe debilitating seizure disorder. My sister became a warrior for her daughter and fought any obstacle to give her the best life she could and my niece lived a wonderful life that even the doctors never thought was possible. Over time she became a walking encyclopedia about her daughters condition, she had copies of every medical exam, X-ray. You sound like the same kind of mom and your daughter is going to do better because of it. Hugs and prayers.
Edited by rodeomom3 2017-05-18 9:11 AM
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BHW Resident Surgeon
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Location: Bastrop, Texas | IRunOnFaith - 2017-05-18 8:51 AM
Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down. Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys....
I don't like to use the term "dumbing down" when explaining things to people, but I suppose we all need to have things "dumbed down" for us at some point or another. Diesel mechanics and electricians always have to dumb things down for me, because I know so little about those things. If some people seem to enjoy talking over your head, then you are better served by avoiding them. One good thing about the internet is things like support groups that can link people with one thing in common, even if it's rare, and it can be an enormous source of ideas and information, as well as emotional support.
As to those medications, I think you should ask your daughter's doctor about adding nifedipine. That might help with her Raynaud's symptoms. You probably already know there are a lot of strategies used to control those awful symptoms. |
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Extreme Veteran
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Location: Missouri | IRunOnFaith - 2017-05-18 8:51 AM
Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down. Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys....
I'm sure you've already started looking, but I just did a quick search on ebay...there are tons of really awesome full body wetsuits in toddler sizes! And not as expensive as I expected. There do seem to be different thicknesses..the couple I looked at talked about level of warmth provided. Lots of hugs momma! |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | rodeomom3 - 2017-05-18 8:58 AM Many prayers, seeing our children suffer is so hard. I don't know anything about this disease but my niece was born with a very severe debilitating seizure disorder. My sister became a warrior for her daughter and fought any obstacle to give her the best life she could and my niece lived a wonderful life that even the doctors never thought was possible. Over time she became a walking encyclopedia about her daughters condition, she had copies of every medical exam, X-ray. You sound like the same kind of mom and your daughter is going to do better because of it. Hugs and prayers.
Oh I bet she will be the mom that fights any obstacle that gets put out there just like your sister, Tess will be our Warrior Mom for sure for her baby girl.. |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | dianea - 2017-05-18 10:18 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys.... I'm sure you've already started looking, but I just did a quick search on ebay...there are tons of really awesome full body wetsuits in toddler sizes! And not as expensive as I expected. There do seem to be different thicknesses..the couple I looked at talked about level of warmth provided. Lots of hugs momma!
I just went there too, theres alot on there for the kidos and good prices too...  |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian |
^^^^^ THIS ...... most of us here know that we can't help you with anything except prayers and good thoughts! There is nothing more heartbreaking than having a sick child and trying to find answers! Just know that you can come here to get whatever support you might need anytime! |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas |
All what Norma said |
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Shelter Dog Lover
Posts: 10277
| IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys....
I just wanted to add my sister started offf where you are, overwhelmed and not having enough knowledge to even know what questions to ask. She realized after seeing the many different doctors that she was going to have to be very pro active. |
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 Born not Made
Posts: 2937
Location: North Dakota | I can't offer you any advice but a HUG. Lots and lots of hugs.
My aunt passed away from scleroderma a few years ago so I know what it does to people. I can't imagine a child having it. Prayers for you and your little one.
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Expert
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Location: The best kept secret in TX | rodeomom3 - 2017-05-18 8:58 AM
Many prayers, seeing our children suffer is so hard. I don't know anything about this disease but my niece was born with a very severe debilitating seizure disorder. My sister became a warrior for her daughter and fought any obstacle to give her the best life she could and my niece lived a wonderful life that even the doctors never thought was possible. Over time she became a walking encyclopedia about her daughters condition, she had copies of every medical exam, X-ray. You sound like the same kind of mom and your daughter is going to do better because of it. Hugs and prayers.
Thank you so much rodeomom3.
I actually ordered business cards to pass out for when people ask me about the disease/disorders so I don't have to spend 5 hours explaining. I have what Scleroderma is, in a condensed version on the front and what the Scleroderma Foundation is on the back. And when they ask me how they can help, I flip the card over to the website for the foundation and I say: "you can make a donation in her name, or you can help me by researching and learning with me."
I have a meeting to get too but will reply to everyone else when I get finished. Thank you all so much. |
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Shelter Dog Lover
Posts: 10277
| IRunOnFaith - 2017-05-18 12:54 PM rodeomom3 - 2017-05-18 8:58 AM Many prayers, seeing our children suffer is so hard. I don't know anything about this disease but my niece was born with a very severe debilitating seizure disorder. My sister became a warrior for her daughter and fought any obstacle to give her the best life she could and my niece lived a wonderful life that even the doctors never thought was possible. Over time she became a walking encyclopedia about her daughters condition, she had copies of every medical exam, X-ray. You sound like the same kind of mom and your daughter is going to do better because of it. Hugs and prayers. Thank you so much rodeomom3. I actually ordered business cards to pass out for when people ask me about the disease/disorders so I don't have to spend 5 hours explaining. I have what Scleroderma is, in a condensed version on the front and what the Scleroderma Foundation is on the back. And when they ask me how they can help, I flip the card over to the website for the foundation and I say: "you can make a donation in her name, or you can help me by researching and learning with me." I have a meeting to get too but will reply to everyone else when I get finished. Thank you all so much.
What a great idea!! |
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Expert
Posts: 3815
Location: The best kept secret in TX | Bear - 2017-05-18 10:15 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys.... I don't like to use the term "dumbing down" when explaining things to people, but I suppose we all need to have things "dumbed down" for us at some point or another. Diesel mechanics and electricians always have to dumb things down for me, because I know so little about those things. If some people seem to enjoy talking over your head, then you are better served by avoiding them. One good thing about the internet is things like support groups that can link people with one thing in common, even if it's rare, and it can be an enormous source of ideas and information, as well as emotional support. As to those medications, I think you should ask your daughter's doctor about adding nifedipine. That might help with her Raynaud's symptoms. You probably already know there are a lot of strategies used to control those awful symptoms.
I agree there are a lot of Strategies.
She has two pair of gloves at school (daycare), one cotton pair, one wool pair. She wears double socks to school unless I by chance find wool and I haven't been able to find any for a toddler, YET. She has a light jacket and a winter parka at school. She has a beanie and a hat that ties over her ears.
She wears long sleeve shirts and pants if it is below 80 degrees and wears pants and a short sleeved shirt or one piece jumpsuit with legs if it's above 80. She wears shorts occasionally but we keep a large quilt and multiple small wool and fleece blankets in the car.
She sleeps on flannel sheets year round and has a flat sheet, wool blanket, comforter, and a blanket I crocheted for her on top. She gets too cold with a ceiling fan and freezes if the house is below 70.
We always carry in blankets with us wherever we go and we always carry a breathing machine as well in case she gets too short of breath at a playground or etc from her Esophegeal Dysmotility.
It's a lot to remember but we stick with it and it helps her symptoms.
I get weird looks when she's in long sleeves or wrapped in a blanket here in the texas heat. But it helps. So who cares. |
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Location: The best kept secret in TX | dianea - 2017-05-18 10:18 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys.... I'm sure you've already started looking, but I just did a quick search on ebay...there are tons of really awesome full body wetsuits in toddler sizes! And not as expensive as I expected. There do seem to be different thicknesses..the couple I looked at talked about level of warmth provided. Lots of hugs momma!
Thank you so much! I've been Googling like crazy and checking out old fashioned medical journals and resource books from the Library at Cook Children's Hospital.
I didn't even think of eBay until roxie Messged me and was like: What about eBay?? lol
Silly me. |
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Posts: 3815
Location: The best kept secret in TX |
Awe Roxie and Norma!!!!! You made me cry!!!!
I've been debating psoting here for a while but after the contact I've had on the Scleroderma Forums I felt like I had to keep everything to myself until I knew answers.
I still don't think I've found the answers those people were wanting me to know but I am so glad I have you guys.
When I posted on Facebook for the first time after her diagnosis I posted this promise and told every one of my friends to keep me accountable. Here is my promise to my little Izzy so that you all can keep me accountable to it as well:
" I promise to help her in her every day life by researching treatments and tricks until my computer is fried.
By reading the latest medical journal for hope that we are one step closer to a cure.
I promise to always be open to new therapies, new products, and new ways of thinking for her and her health.
I promise to always enjoy the small victories with her. No matter how insignificant they may seem.
I promise to continue to appeal when Insurance tells us no.
I promise to fight for her, love her, and give her every tool possible to beat this; to find a cure and to keep her going. Even when I want to give up. Even when we're both crying on the floor together from hitting a dead end. When the pain is too much. When the diagnosis is too heavy to bear, I promise to bear it for her. To pick her up and brush her off when she gets knocked down by life.
I promise to always question her doctors; to never assume anything.
I promise to always believe her when she feels something isn't right.
I promise to listen, to educate, and to always be inspired by her strength and tenacity.
I promise to protect her now, tomorrow and forever." |
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Location: The best kept secret in TX | rodeomom3 - 2017-05-18 10:40 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys....
I have many women in my family and extended family and in my circle of friends who are very proactive with their child's doctors, their specialists and anyone who may be in charge of their child or play a role in their child's life. I think by being mentored by these women it's helped me be very proactive for her and her needs.
While I am the one who can hire or fire a doctor from her care I also know that I need to be humble and listen to the doctor and what they are suggesting. Not blindly listening but listening none the less. I need to ask questions if I don't know the answers and I need to do my research from both sides before saying okay to any medication or treatment. I am the only thing standing between her and a disaster or wrong medication/treatment/therapy/etc.
I think all parents should be proactive in their child's life.  |
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Extreme Veteran
Posts: 336
Location: Missouri | IRunOnFaith - 2017-05-18 2:26 PM
dianea - 2017-05-18 10:18 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys.... I'm sure you've already started looking, but I just did a quick search on ebay...there are tons of really awesome full body wetsuits in toddler sizes! And not as expensive as I expected. There do seem to be different thicknesses..the couple I looked at talked about level of warmth provided. Lots of hugs momma!
I didn't even think of eBay until roxie Messged me and was like: What about eBay?? lol
Silly me.
They also have LOTS of toddler wool socks on ebay! Just jumped on and did a search. One stop shopping for you!!
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Location: The best kept secret in TX | dianea - 2017-05-18 2:49 PM IRunOnFaith - 2017-05-18 2:26 PM dianea - 2017-05-18 10:18 AM IRunOnFaith - 2017-05-18 8:51 AM Thank you all so much for all the replies and prayers. I feel so out of place and uneducated on those Medical forums.... It makes people not believe you when you can't explain something correctly or can't produce every answer to every question correctly...
Bear, thank you for again, dumbing everything down for me to understand. I had asked a similar question on a forum I was directed to for Scleroderma and was very much confused when trying to read their responses. I got all sorts of questions like: What percentage was this protein, or that antibody, or did they test for this, what test did they use, what did this test read, can you post results, was it a false positive, could it be this or that and honestly.... I have no idea what most of those people were talking about. All I know is the doctor pulled 8 vials of blood and tested her for every auto immune disease you can think of and then repulled blood once she got a positive for Scleroderma and retested. That's all I know. All the symptoms fit. All the things her doctor explained to me fit. My research fits her to a T and I truly believe this is her right diagnosis as much as I don't want it to be. But again, without knowing the process or what exactly the doctor did to get a positive I can't answer most questions on that board. And when I can't people tell me it's a false positive and too go get this test for this disease or that syndrome or this. I don't need that. I just need my question answered lol and apparently I need the answer dumbed down.
Her Rheumatologist has one other case with a 13 year old girl that is under her care that has Limited Scleroderma. She's never had a patient as young as my little one with both limited symptoms and systemic symptoms.
As far as the suit goes, I thought what I bought her from the store would work since it looked very similar to a wet suit: long sleeves, long pants, soft shell material and shoes. Makes sense she got cold because it wasn't a "real" wetsuit now that you say that Bear. I was a little worried if a "wet suit" wasn't going to keep her warm. Guess I'll be using my sweet google skills to find her a real wetsuit.
I honestly feel like a sitting duck on this medication. I can't find anyone on the boards who takes this and I couldn't find anyone with any other suggestions. I'll have to call her doctor and ask about the two mentioned. She loses her insurance in June so I'm trying to get her in to see the doctor before her plan expires. I am trying to get her on my insurance but I can't afford it and her Rheum doesn't accept my insurance so I will either have to find a Scleroderma specialist who accepts my insurance or pay out of pocket for her current Rheum.
I feel like her doctor gave her so many refills so that she doesn't have to see her as often. I also feel like a sitting duck just waiting for another symptom to show up. It's like Roulette adn I hate it. So far she has the Raynaud's associated with CREST, shortness of breath while playing, esophegeal dysmotility (She chokes a lot when she tries to swollow, no matter how little the bites are), and she has many gastrointestinal problems. I caught her hands the other day on the table and she couldn't stretch her fingers out all the way and cried when I tried to help her. She looked like her hands were arched ready to play a piano. I think I still have a picture. They were red because the blood was starting to return to her hands. She had just had a Ray's attack because she dropped her sandwhich on the floor and Dad wasn't fast enough to get her another....
Thanks for letting me vent guys.... I'm sure you've already started looking, but I just did a quick search on ebay...there are tons of really awesome full body wetsuits in toddler sizes! And not as expensive as I expected. There do seem to be different thicknesses..the couple I looked at talked about level of warmth provided. Lots of hugs momma!
I didn't even think of eBay until roxie Messged me and was like: What about eBay?? lol
Silly me. They also have LOTS of toddler wool socks on ebay! Just jumped on and did a search. One stop shopping for you!!
How exciting!!!! |
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Expert
Posts: 3815
Location: The best kept secret in TX | Wanted to update.
I emailed the brand O'neill and gave them a little info on my little one and asked what thickness of suit they would recommend. They actually told me that they didn't feel their suits were thick enough and gavce me the contact info for a Rep from Xcel wetsuits! How cool is that?
I found one on sale and have an email in to the Rep to see if I chose the correct thickness. We shall see! |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-05-19 2:50 PM Wanted to update.
I emailed the brand O'neill and gave them a little info on my little one and asked what thickness of suit they would recommend. They actually told me that they didn't feel their suits were thick enough and gavce me the contact info for a Rep from Xcel wetsuits! How cool is that?
I found one on sale and have an email in to the Rep to see if I chose the correct thickness. We shall see!
How cool that they are wanting to help you out, I love people like this always so willing to help..  |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian |
When you get it....take a picture.....I will bet she is a cutie! |
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 Angel in a Sorrel Coat
Posts: 16030
Location: In a happy place |
I know we all wish we could help you and your daughter. I agree with all of the above. All I can offer is hugs and prayers for your daughter and you. |
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 I Prefer to Live in Fantasy Land
Posts: 64864
Location: In the Hills of Texas | Sending prayers and positive thoughts. |
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 Go Your Own Way
Posts: 4947
Location: SE KS | Irunonfaith - I work with a friend that has scleroderma - she goes to a dr. in Kansas City, MO that work with this disease. If you are interested, I can
get his name for you. Let me know.
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Posts: 3815
Location: The best kept secret in TX | I will for sure send you guys a pm with a picture.
Dinero10 I have sent you a PM.
All of the support means the world to me.
I have yet to finish my order with Xcel. I am waiting for an email back from them to confirm that I am buying the right thickness for her.
Here is a link to the suit I found. I am thinking she needs a size 2 because of her height but I am also waiting for the email back to confirm sizing as well. http://www.xcelwetsuits.com/shop/product/surf/toddlers-3mm?color=LIP |
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Member
Posts: 9
| Yes! I have this, was just diagnosed last year after a lengthy struggle with finding a doctor that could actually tell me exactly what was wrong. I have systemic/CREST also and have found a good combination of medication that has helped me and I finally feel better. Do you have a facebook or email we could talk on? |
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Location: The best kept secret in TX | SweetT - 2017-05-22 11:43 AM Yes! I have this, was just diagnosed last year after a lengthy struggle with finding a doctor that could actually tell me exactly what was wrong. I have systemic/CREST also and have found a good combination of medication that has helped me and I finally feel better. Do you have a facebook or email we could talk on?
I will send you a Pm!! |
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 Elite Veteran
Posts: 878
Location: "...way down south in the Everglades..." | r_beau - 2017-05-18 1:40 PM I can't offer you any advice but a HUG. Lots and lots of hugs.
My aunt passed away from scleroderma a few years ago so I know what it does to people. I can't imagine a child having it. Prayers for you and your little one.
I had never heard of it until my aunt was diagnosed with it as well a couple years back. Sounds like I can releate 100% to you r_beau.
But I couldn't imagine my child having it. It is definitely tough on the person and the family. I don't have any advice but just want to say hugs and prayers to you and your daughter and I truly hope they find a cure and you can get the best doctors out there to help you and your family through this! |
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Location: The best kept secret in TX | Speedy Buckeye Girl - 2017-05-22 3:18 PM r_beau - 2017-05-18 1:40 PM I can't offer you any advice but a HUG. Lots and lots of hugs.
My aunt passed away from scleroderma a few years ago so I know what it does to people. I can't imagine a child having it. Prayers for you and your little one.
But I couldn't imagine my child having it. It is definitely tough on the person and the family. I don't have any advice but just want to say hugs and prayers to you and your daughter and I truly hope they find a cure and you can get the best doctors out there to help you and your family through this!
Thanks Speedy.
I take it day by day. RIght now we are just waiting on another symptom to show itself. Seems that's what everyone with this disease is doing...
I did order some books from the foundation on research and what others have learned so far about finding a cure. Hoping that gives me a place to start.
So until then I'll keep googling and reading. That's all I can do.
I'm almost positive my family is tired of hearing me preach about it by now.
In fact when we went to visit my parents this weekend my Dad actually looked me dead in the face and said: "I really don't want to talk about it anymore today, Lucy (The Little Lucy Show cartoon). I just really want to believe that God is already healing her. So that's what I'm going to believe." |
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 Knowledge is Power
Posts: 4051
Location: wherever my daughter's running | I was diagnoised or I should say mis-diagnoised with this about 15 years ago, I had never heard of it and was scared and a nervous wreck after researching. After the shock wore off and I was able to think clearly I found that the Medical University of South Carolina - located in Charleston, SC was at that time one of the leaders in the country for Scleroderma reserach and treatment. I requested my Dr. make me an appointment with them - because I wanted a second (actually 3rd) opinion. After a battery ot test there it was determined I did not have Scleroderma. I do still have the Raynoids (sp?) in my hands like when I pick up a frozen turkey or handle something cold. I would suggest you reserch the Medical University of SC and see if they are still leaders on this. If so, I would contact them. This is a teaching university and they were so very helpful. It may be a wonderful resource for you.
http://www.sclero.org/scleroderma/experts/united-states/south-carolina/charleston/a-to-z.html
http://academicdepartments.musc.edu/medicine/Divisions/Rheumatology/index.htm
Edited by cruise 2017-05-22 3:57 PM
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Location: The best kept secret in TX | cruise - 2017-05-22 3:47 PM I was diagnoised or I should say mis-diagnoised with this about 15 years ago, I had never heard of it and was scared and a nervous wreck after researching. After the shock wore off and I was able to think clearly I found that the Medical University of South Carolina - located in Charleston, SC was at that time one of the leaders in the country for Scleroderma reserach and treatment. I requested my Dr. make me an appointment with them - because I wanted a second (actually 3rd) opinion. After a battery ot test there it was determined I did not have Scleroderma. I do still have the Raynoids (sp?) in my hands like when I pick up a frozen turkey or handle something cold. I would suggest you reserch the Medical University of SC and see if they are still leaders on this. If so, I would contact them. This is a teaching university and they were so very helpful. It may be a wonderful resource for you.
http://www.sclero.org/scleroderma/experts/united-states/south-carolina/charleston/a-to-z.html
http://academicdepartments.musc.edu/medicine/Divisions/Rheumatology/index.htm
Thank you Cruise |
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Knowledge is Power
Posts: 4051
Location: wherever my daughter's running | You are very welcome. I am praying for you and your daughter. I'm a good listener if you need a ear to bend and my shoulders are pretty strong if you need one to cry on. While I was told it did not have it I remember so well how over whelmed I was. Hugs to you. |
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Expert
Posts: 3815
Location: The best kept secret in TX | cruise - 2017-05-22 5:11 PM You are very welcome. I am praying for you and your daughter. I'm a good listener if you need a ear to bend and my shoulders are pretty strong if you need one to cry on. While I was told it did not have it I remember so well how over whelmed I was. Hugs to you.
Thank you cruise.
People keep telling me that God never gives you more than you can handle. I am slowly realizing just how big a mothers shoulders have to be in order to carry the weight of a diagnosis like this for their child.
I can't imagine what other parents have to be going through when I pass them in the hospital with their sick children. I truly think that if God thinks my 2 year old is strong enough for this disease, then she's going to be strong enough to beat it.
We will find a cure. In my lifetime, we will find a cure. I can promise you that.  |
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Expert
Posts: 3815
Location: The best kept secret in TX | Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie |
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Expert
Posts: 3815
Location: The best kept secret in TX | Southtxponygirl - 2017-05-25 3:08 PM IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie
Thanks Roxie.
Specialists are too expensive for out of pocket and the only insurance I can find that we qualify for is too expensive.
If I quit my job, lost my car and our truck and did nothing all day but stare at a wall..... We would still make too much money to qualify for any programs or any discounted medical services or insurance. lol
Hubby can't add her to his insuance until February and to add her to my insurance I would pay over 700 per month for her and I insurance. It's ridiculous. Makes finding a doctor even harder.
I called a specialist last week to ask what the out of pocket cost was for a consult/appointment and he said $1500. That's without bloodwork and labs. 
It sucks for lack of better words lol |
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Elite Veteran
Posts: 672
| I am really sorry! I have Raynauds in my fingers and toes/feet during cold weather or handling cold things. It's mostly a nuisance for me; I can't imagine how things are for your daughter :( Hoping you can get some answers and will keep your family in my prayers! |
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Expert
Posts: 3815
Location: The best kept secret in TX | veintiocho - 2017-05-26 10:20 AM I am really sorry! I have Raynauds in my fingers and toes/feet during cold weather or handling cold things. It's mostly a nuisance for me; I can't imagine how things are for your daughter :( Hoping you can get some answers and will keep your family in my prayers!
Thank you so much! |
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Go Get Em!
Posts: 13503
Location: OH. IO | IRunOnFaith - 2017-05-26 10:58 AM
Southtxponygirl - 2017-05-25 3:08 PM IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie
Specialists are too expensive for out of pocket and the only insurance I can find that we qualify for is too expensive.
If I quit my job, lost my car and our truck and did nothing all day but stare at a wall..... We would still make too much money to qualify for any programs or any discounted medical services or insurance. lol
Hubby can't add her to his insuance until February and to add her to my insurance I would pay over 700 per month for her and I insurance. It's ridiculous. Makes finding a doctor even harder.
I called a specialist last week to ask what the out of pocket cost was for a consult/appointment and he said $1500. That's without bloodwork and labs.
It sucks for lack of better words lol
Is hubby's open enrollment in February?was there a reason she wasn't on his insurance since birth?IM SO SORRY FOR WHAT YOU ARE GOING THOUGH.I CANT IMAGINE HAVING TO WATCH YOUR BABY GO THIS.You are a great momma.my prayers are with you all. |
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Expert
Posts: 3815
Location: The best kept secret in TX | jake16 - 2017-05-30 9:09 PM IRunOnFaith - 2017-05-26 10:58 AM Southtxponygirl - 2017-05-25 3:08 PM IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie
Specialists are too expensive for out of pocket and the only insurance I can find that we qualify for is too expensive.
If I quit my job, lost my car and our truck and did nothing all day but stare at a wall..... We would still make too much money to qualify for any programs or any discounted medical services or insurance. lol
Hubby can't add her to his insuance until February and to add her to my insurance I would pay over 700 per month for her and I insurance. It's ridiculous. Makes finding a doctor even harder.
I called a specialist last week to ask what the out of pocket cost was for a consult/appointment and he said $1500. That's without bloodwork and labs.
It sucks for lack of better words lol Is hubby's open enrollment in February?was there a reason she wasn't on his insurance since birth?IM SO SORRY FOR WHAT YOU ARE GOING THOUGH.I CANT IMAGINE HAVING TO WATCH YOUR BABY GO THIS.You are a great momma.my prayers are with you all.
WE FOUND AFFORDABLE INSURANCE! 
Jake16: Little one was not on Hubby's insurance because he just started this job a little over a year ago. He climbs towers and does tower maint. and construction for an internet company. He was a mechanic with multiple other odd jobs before that and has never had insurance until this job. Hubby and I were not married when I had little one so even if he did have insurance through work it wouldn't have been an option. We just recently got married.
We are still waiting for a few doctors to call us back about information on a consult. Trying to get the ball rolling seems like it takes longer than the actual roll. lol
We are trying to get in to see a private doctor in Dallas and we've also put feelers out to a few hospitals like UT Southwestern, The Scottish Rites Hospital, and Dallas Children's Hospital. It's a drive but I hear that they have a few doctors at each hospital that have experience with Pediatric Scleroderma. Hoping we get her in to one soon.
Edited by IRunOnFaith 2017-06-07 2:25 PM
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-06-07 12:45 PM jake16 - 2017-05-30 9:09 PM IRunOnFaith - 2017-05-26 10:58 AM Southtxponygirl - 2017-05-25 3:08 PM IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie
Specialists are too expensive for out of pocket and the only insurance I can find that we qualify for is too expensive.
If I quit my job, lost my car and our truck and did nothing all day but stare at a wall..... We would still make too much money to qualify for any programs or any discounted medical services or insurance. lol
Hubby can't add her to his insuance until February and to add her to my insurance I would pay over 700 per month for her and I insurance. It's ridiculous. Makes finding a doctor even harder.
I called a specialist last week to ask what the out of pocket cost was for a consult/appointment and he said $1500. That's without bloodwork and labs.
It sucks for lack of better words lol Is hubby's open enrollment in February?was there a reason she wasn't on his insurance since birth?IM SO SORRY FOR WHAT YOU ARE GOING THOUGH.I CANT IMAGINE HAVING TO WATCH YOUR BABY GO THIS.You are a great momma.my prayers are with you all.
WE FOUND AFFORDABLE INSURANCE!
Jake16: Little one was not on Hubby's insurance because he just started this job a little over a year ago. He climbs towers and does tower maint. and construction for an internet company. He was a mechanic with multiple other odd jobs before that and has never had insurance until this job. Hubby and I were not married when I had little one so even if he did have insurance through work it wouldn't have been an option. We just recently got married.
We are still waiting for a few doctors to call us back about information on a consult. Trying to get the ball rolling seems like it takes longer than the actual roll. lol
We are trying to get in to see a private doctor in Dallas and we've also put feelers out to a few hospitals like UT Southwestern, The Scottish Rites Hospital, and Dallas Children's Hospital. It's a drive but I hear that they have a few doctors at each hospital that have experience with Scleroderma. Hoping we get her in to one soon.
Prayers that one of these doctors are all of them can give you more answers and help this sweet little girl.. |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | IRunOnFaith - 2017-06-07 12:45 PM jake16 - 2017-05-30 9:09 PM IRunOnFaith - 2017-05-26 10:58 AM Southtxponygirl - 2017-05-25 3:08 PM IRunOnFaith - 2017-05-25 3:03 PM Little update:
My little has been having joint pain in her arms yesterday aqnd today. She woke up crying this morning and holding her elbow. She started scratching at it, almost like she was trying to get something off her. I even checked her for a bug bite to see if maybe that was it. Her elbow was swollen and she continued to cry on the way to daycare. I gave her some motrin and I'm hoping everything is better when I pick her up.
Today was also water day at daycare again. Hoping all went well with that too....
I guess I'm going to have to find a doctor faster than I find insurance. Broke my heart that I couldn't kiss that pain away like all other boo-boos.
Anyone have any suggestions on a pain reliever? I thought about Doterra's Deep Blue Rub but I can't seem to think of anything else.
Poor baby, I hate it when the little one's hurt.. Hope that you can find a Doctor sooner then yesterday for her I know that this is really hard on you mommie
Specialists are too expensive for out of pocket and the only insurance I can find that we qualify for is too expensive.
If I quit my job, lost my car and our truck and did nothing all day but stare at a wall..... We would still make too much money to qualify for any programs or any discounted medical services or insurance. lol
Hubby can't add her to his insuance until February and to add her to my insurance I would pay over 700 per month for her and I insurance. It's ridiculous. Makes finding a doctor even harder.
I called a specialist last week to ask what the out of pocket cost was for a consult/appointment and he said $1500. That's without bloodwork and labs.
It sucks for lack of better words lol Is hubby's open enrollment in February?was there a reason she wasn't on his insurance since birth?IM SO SORRY FOR WHAT YOU ARE GOING THOUGH.I CANT IMAGINE HAVING TO WATCH YOUR BABY GO THIS.You are a great momma.my prayers are with you all.
WE FOUND AFFORDABLE INSURANCE!
Jake16: Little one was not on Hubby's insurance because he just started this job a little over a year ago. He climbs towers and does tower maint. and construction for an internet company. He was a mechanic with multiple other odd jobs before that and has never had insurance until this job. Hubby and I were not married when I had little one so even if he did have insurance through work it wouldn't have been an option. We just recently got married.
We are still waiting for a few doctors to call us back about information on a consult. Trying to get the ball rolling seems like it takes longer than the actual roll. lol
We are trying to get in to see a private doctor in Dallas and we've also put feelers out to a few hospitals like UT Southwestern, The Scottish Rites Hospital, and Dallas Children's Hospital. It's a drive but I hear that they have a few doctors at each hospital that have experience with Scleroderma. Hoping we get her in to one soon.
Happy that you are able, now, to get her to a Dr. ..... |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | Hey did her wetsuit come in yet? Been thinking about her this past weekend while all the grandkids were here playing in the pool/horse water tank  |
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Knowledge is Power
Posts: 4051
Location: wherever my daughter's running | What a great update. Continued prayers. |
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Expert
Posts: 3815
Location: The best kept secret in TX | Southtxponygirl - 2017-06-07 1:58 PM Hey did her wetsuit come in yet? Been thinking about her this past weekend while all the grandkids were here playing in the pool/horse water tank
Her wetsuit I bought on sale and their website is down for inventory so it won't be shipping out for a while until their website is back up... At least that's how I took it. Not sure when I will get it... I didn't think it would take this long. i figured I would have it in a few days.
Speaking of pools, She found her a pool at Walmart the other day. It's an inflatable unicorn. She has NEVER yelled in public until she saw that dang pool... Then it was all over but the siging.
"Mum! Horse! Horrssse!!! Mum!!!!! NNNAAAAAAAYYYY! I buy it Mum I buy it! "
Everyone we passed in the store laughed at us lol |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-06-07 2:23 PM Southtxponygirl - 2017-06-07 1:58 PM Hey did her wetsuit come in yet? Been thinking about her this past weekend while all the grandkids were here playing in the pool/horse water tank
Speaking of pools, She found her a pool at Walmart the other day. It's an inflatable unicorn. She has NEVER yelled in public until she saw that dang pool... Then it was all over but the siging.
"Mum! Horse! Horrssse!!! Mum!!!!! NNNAAAAAAAYYYY! I buy it Mum I buy it! "
Everyone we passed in the store laughed at us lol
Awwww so cute, this just made my heart swell .. She sounds like shes full of energy  |
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Expert
Posts: 3815
Location: The best kept secret in TX |
Like a wound up jack russell puppy with no where to go  |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-06-07 3:22 PM Like a wound up jack russell puppy with no where to go
LOL...  |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | Southtxponygirl - 2017-06-07 3:28 PM IRunOnFaith - 2017-06-07 3:22 PM Like a wound up jack russell puppy with no where to go
^^^^^ This made me really belly laugh !!!!!! |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | NJJ - 2017-06-07 3:36 PM Southtxponygirl - 2017-06-07 3:28 PM IRunOnFaith - 2017-06-07 3:22 PM Like a wound up jack russell puppy with no where to go
Me too, now I need to find me some MEME's of a jack russell pup.. |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | Oh my gosh there is so many cute MeMe's
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Expert
Posts: 3815
Location: The best kept secret in TX | Southtxponygirl - 2017-06-07 3:42 PM Oh my gosh there is so many cute MeMe's
I wish I could video her in the morning's. She wakes up and literally jumps on the bed until I get her held down long enough to get regular clothes on her.
She walks circles around me at stores or at people's houses when I'm just standing talking to people. One hand on my legs while she walks around like a newborn foal. She sings the whole time she's walking around me.
I think I still have the video of the first time she ever had sweet tea in her system... That was fun:
She was RUNNING around a phone display in the Verizon store and was saying "Hurry! Hurry! Hurry!" She had one hand pulled up like she was actually running and was huffing and puffing like she was actually running. It was pretty funny. I told her to come stand by me and behave and she says: "Okay, I stand." And then started walking around me like a newborn foal humming a song. She got in a lot of trouble that day... We order unsweet now... We learned our lesson.
Never stops moving.
Edited by IRunOnFaith 2017-06-07 3:59 PM
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I just read the headlines
Posts: 4483
| Have you contacted a Shriner's Hospital? I don't know what they cover, but a friend had a son with a bone disease and they were tremendously helpful, financially and were very supportive. |
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Go Get Em!
Posts: 13503
Location: OH. IO | SO HAPPY ABOUT THE INSURANCE!!!!!!YOUR BABY GIRL SOUNDS LIKE A REAL HAPPY GIRL!!!! |
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Expert
Posts: 3815
Location: The best kept secret in TX | GLP - 2017-06-07 4:54 PM Have you contacted a Shriner's Hospital? I don't know what they cover, but a friend had a son with a bone disease and they were tremendously helpful, financially and were very supportive.
Yes. The Scottish Rites Hospital is part of the Shriners. My Daddy is a Mason but is on the other side of it so he isn't a Shriner. He has many friends who can refer me to the Hospital. The Scottish Rites Hospital has to have a written referal from an active Shriner on your behalf before they accept you.
Still waiting to hear back, |
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 Elite Veteran
Posts: 670
Location: Running my kids somewhere. | Hoping you receive your referral soon. They are very good about their willingness to help. |
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Expert
Posts: 3815
Location: The best kept secret in TX | flyingcolors - 2017-06-09 10:59 AM Hoping you receive your referral soon. They are very good about their willingness to help.
Thank you so much. I agree. This won't be the first time the Masons/Shriners have helped me and it won't be the last. I don't know everything about them but I know that if my Daddy is a memeber there is a good reason as to why he's a member. |
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