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 Elite Veteran
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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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 Expert
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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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Expert
Posts: 3815
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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