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Location: The best kept secret in TX | In the last year of Google Searches I have NEVER found this study. I happened on it by chance actually. My little girl is only 21 pounds and is 2 years old. She has not gained a pound since she was 1 year old. She isn't very tall but still looks like she is lacking in nutrition: ribby, small waist, and small cheeks. In fact, I know she is lacking. I was looking for information on how to up her fat intake without dairy since she is allergic. I just can't get my percentages right for her to gain weight. I have worked with her nutritionist and she also cannot put weight on my child. It is very important that she gains weight in case she gets sick and is hospitalized again. Her body will deteriorate faster without much fat to live off of. Her immune system is compromised and when she gets sick, she gets very sick very fast.
Bear: I know back on the AntiVaxx Thread and my original Scleroderma Thread we were having a chat about her medications/Vaccines that she was given and procedures on how to diagnose, treat, and maintain her health with Scleroderma. I wanted to share this with you and get your thoughts on the study. She is currently not on any medication to control her symptoms. She was rpeviously on a vasodialator (SP?) to control Ray's symptom's. THe side effects were too much for her. We have been waiting to see a specialist but keep getting pushed back. None of her doctors have any idea on where to go from here.
As a refresher to you Bear: She was diagnosed by blood draw when she was a little over a year old and the ACL-70 Antibodies were overly present in her body. This lead the doctor to believe Scleroderma to be the proper formal diagnosis. Chest X-Rays were given earlier last month and do not indicate impaired Lung function or impaired growth. Calcinosis of the Lungs was also ruled out via X-Ray (Don;t ask me how). MRI and CAT were not performed after Lungs passed for proper growth clearance via X-Ray. She has the Limited Systemic form of Scleroderma with every symptom of C.R.E.S.T. Syndrome present.
The goal is to keep her internal organs as helathy as possible... My thinking was to do this through nutrition and supplements first with the help of Medicinal Backup later on. Calcinosis of any organ is a major obstacle for a 2 year old to overcome. It is inevitable however, I would like to prolong the inevitable. Thoughts from a Medical point of view on my way of thinking ? Do you think the information in the study is good info to follow ?
I googled "Nutritional Supplements for Children with Scleroderma." This is what I found instead: http://www.umm.edu/health/medical/altmed/condition/scleroderma |
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 BHW Resident Surgeon
Posts: 25352
 
Location: Bastrop, Texas | I sort of remember the thread from a few months back. I think we were focusing on her Reynaud's symptoms and whether a good wet suit would minimize those symptoms.
I did look at that Univ of Maryland link.
As far as nutrition, those suggestions could apply to all of us, so those seem sensible.
I have never seen a child with scleroderma..only adults.
It couldn't hurt to try the turmeric, but I can't tell you that it's been shown to be helpful for kids with autoimmune diseases. If you are going to try turmeric, then I'd suggest using the paste with coconut oil and fresh ground pepper.
Those meds like plaquenil can be pretty rough to tolerate.
Bottom line for me is I can't emphasize enough the importance of her being evaluated by a good pediatric rheumatologist.
I wish I could be more helpful. |
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 My Heart Be Happy
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Location: Arkansas | Just wanted to send a little prayer for your daughter. . . |
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Location: The best kept secret in TX | Bear - 2017-09-14 8:31 PM I sort of remember the thread from a few months back. I think we were focusing on her Reynaud's symptoms and whether a good wet suit would minimize those symptoms. I did look at that Univ of Maryland link. As far as nutrition, those suggestions could apply to all of us, so those seem sensible. I have never seen a child with scleroderma..only adults. It couldn't hurt to try the turmeric, but I can't tell you that it's been shown to be helpful for kids with autoimmune diseases. If you are going to try turmeric, then I'd suggest using the paste with coconut oil and fresh ground pepper. Those meds like plaquenil can be pretty rough to tolerate. Bottom line for me is I can't emphasize enough the importance of her being evaluated by a good pediatric rheumatologist. I wish I could be more helpful.
Thanks Bear! You've been very helpful.
As far as the good Pediatric Rheum evaluation goes she has been evaluated by a few now here in North Texas and no one seems to have any experience with pediatric Scleroderma.
I've been looking at other states now to try and see if anyone else close has any openings or any experience with it in young children... I thought I found her a doctor in Dallas with experience but I keep getting calls to push the appointment back. |
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Expert
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Location: The best kept secret in TX | Chandler's Mom - 2017-09-14 8:58 PM Just wanted to send a little prayer for your daughter. . .
Thank you dear.
I am still sending prayers up for you as well. |
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 Elite Veteran
Posts: 725
| I have had autoimmune issues, and after being misdiagnosed by all the doctors around me, we went Mayo Clinic and they are amazing. If one doctor doesn't have the answers they will refer you to other doctors within Mayo until they figure it out. The doctors are determined and will fight for you. I believe there is a clinic in the south but Minnesota is where the main one was. |
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 Go Your Own Way
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Location: SE KS | IRunon Faith - did you try the dr. in Kansas City? I know that is a aways... |
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Location: The best kept secret in TX | Dinero10 - 2017-09-15 9:16 AM IRunon Faith - did you try the dr. in Kansas City? I know that is a aways...
I have the doctor you recommended down on my list! I think you were the one who was telling me about your friend or family member having experience with them?
I have all the doctors organized by experience on one list, location on another list, and I also have any publications they have on Pediatric Scleroderma downloaded onto my computer to reference when I need too. (I like lists... lol)
I am hoping that I can get a clear answer from the specialist we were refered to in Dallas soon. That way I can move to the next Doctor on my list if they aren't interested in helping me soon.
I finally got new insurance approved for her (they were trying to say she was disabled but I got it approved since she's not officially been deemed disabled by SSA. People with Raynaud's Phenom can automatically be deemed disabled by the SSA but they have to have open sores, loss of movement, or ulcers on their fingertips that bleed when they touch objects such as pens. She doesn't have this... yet of course but that's how I got her insurance approved. I don't want to limit her to being disabled for the rest of her life if she truly isn't disabled quite yet.) and it covers more doctors in our area so that has opened doors as well. Unfortunately it's closed a lot of door to doctors who aren't in Texas. BUT if I make it through the list for Texas I will figure something out to get her to another docotr in a different State.  |
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Expert
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Location: The best kept secret in TX | IowaCanChaser - 2017-09-15 9:01 AM I have had autoimmune issues, and after being misdiagnosed by all the doctors around me, we went Mayo Clinic and they are amazing. If one doctor doesn't have the answers they will refer you to other doctors within Mayo until they figure it out. The doctors are determined and will fight for you. I believe there is a clinic in the south but Minnesota is where the main one was.
I have heard many great things about Mayo.
I believe one of the doctors on my list is part of the Mayo Clinic. |
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Location: The best kept secret in TX | Thanks for listening to me ramble guys.  |
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  Fact Checker
Posts: 16575
Location: Displaced Iowegian | IRunOnFaith - 2017-09-15 9:30 AM IowaCanChaser - 2017-09-15 9:01 AM I have had autoimmune issues, and after being misdiagnosed by all the doctors around me, we went Mayo Clinic and they are amazing. If one doctor doesn't have the answers they will refer you to other doctors within Mayo until they figure it out. The doctors are determined and will fight for you. I believe there is a clinic in the south but Minnesota is where the main one was. I have heard many great things about Mayo.
I believe one of the doctors on my list is part of the Mayo Clinic.
First, hugs to you for trying your VERY best to help that sweet child ..... and continued prayers that you find answers to your questions!
Second ..... please try the Mayo Clinic. I would start trying to get an appointment there. They are rated the best in the world for most any disease or issue. I know that it is a long trip. You can always cancel an appointment if one of the TX Drs. comes through.
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Location: The best kept secret in TX | NJJ - 2017-09-15 9:47 AM IRunOnFaith - 2017-09-15 9:30 AM IowaCanChaser - 2017-09-15 9:01 AM I have had autoimmune issues, and after being misdiagnosed by all the doctors around me, we went Mayo Clinic and they are amazing. If one doctor doesn't have the answers they will refer you to other doctors within Mayo until they figure it out. The doctors are determined and will fight for you. I believe there is a clinic in the south but Minnesota is where the main one was. I have heard many great things about Mayo.
I believe one of the doctors on my list is part of the Mayo Clinic.
Second ..... please try the Mayo Clinic. I would start trying to get an appointment there. They are rated the best in the world for most any disease or issue. I know that it is a long trip. You can always cancel an appointment if one of the TX Drs. comes through.
Good idea NJJ.
Thank you very much !  |
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