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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
Posts: 3815
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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Expert
Posts: 3815
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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Expert
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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Expert
Posts: 3815
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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Expert
Posts: 3815
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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Expert
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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Expert
Posts: 3815
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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Folks on-line