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jabsdb

Beginning symptoms

9 posts in this topic

My 9 year old has been diagnosed with CREST appx. 4 months ago.  Her symptoms started out with her hands were swollen every day, she was very fatiqued, was having bouts of dizziness and lightheadedness, feeling like she is going to faint and headaches. 

 

She is also a Type 1 diabetic so the doctors wanted to pinpoint everything on that.  After lots of tests her ANA came back positive and it was narrowed down to beginning signs of scleroderma.  At first they didn't want to put her on any medication but we were tired of playing this game so they ended up putting her on plaquenil.

 

After 3 months the swelling in her hands has decreased but she is once again having the feelings of dizziness, feeling of faintness, and lightheadedness.  This last episode, her legs and feet swelled up and she wasn't able to walk and she felt like she was going to collapse.  Her scleroderma doctor says this has nothing to do with this disease. 

 

Has anyone else had episodes like this?  I am considering going for a second opinion on the matter. 

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Hello jabsdb,

 

Sorry to hear that your daughter has symptoms at so young an age.  For myself thinking back over my life, I think I have had Scleroderma since I was 11 or 12,  I am now 71 and a Grandmother so please don't worry too much at this stage.

 

Yes, I have to say that I have experienced symptoms as you describe and of course nobody ever knows what causes it.  

 

If I had known a fraction of what I know now I would have looked for better treatment than I did have and would suggest that it might be helpful to find the best Scleroderma specialist you can find within sensible reach of your home and get another opinion.

 

Of course we are all aware that Type 1 Diabetes is an Auto Immune disorder just as Scleroderma is and many of us have a cohort of different AI disorders.  I myself have Primary Biliary Cirrhosis and  Sjogren's Syndrome as well as Systemic Sclerosis.

 

Best wishes to you and your lovely daughter,

Judyt

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Has she seen a cardiologist? There is also pulmonary hypertension which can be secondary to scleroderma. There are many things that could cause those same symptoms.

 

This must be very difficult for both of you. All kids want to do is be normal. Keep looking for answers and definitely get a second or even more opinions.

 

miocean


ISN Artist

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Judy how did your disease progress? What were your signs when you were younger and where did it go from there?

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Jabsdb I hope your daughter is okay and that whatever it is is slow progressing Hugs!

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Hi Jabsdb,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with CREST and I can understand how worried you must be feeling.

 

Unfortunately, having another autoimmune disease such as diabetes can rather cloud things a little, as it's comparatively easy to blame any symptoms on that, rather than investigating the true cause of your daughter's dizziness and faintness. If the symptoms are persisting, then I would go back to your scleroderma doctor and insist that further tests are done, to ensure that your daughter receives the correct treatment, be it for scleroderma, diabetes or both.

 

Please do update us and let us know how your daughter is faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

 

Just wanted to welcome you aboard.  My son was diagnosed with UCTD at age 18.  There are a couple of other parents on this site whose kids have been diagnosed  with scleroderma.  I hope they chime in.

 

Take care, everyone.

Margaret

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  1. Thank you everyone for your replies.  We are going to push to take her to a pediatric scleroderma specialist in another state.  She describes some of her episodes as having 5 lb bags tied to her arms and legs and just feels like she can't move.  I need to find some relief for her.

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Hi Jabsdb,

 

Welcome to Sclero Forums. I'm sorry that your young daughter has CREST and diabetes, and send my best wishes to both of you.  I just want to add my two cents.  Experts in juvenile scleroderma are very few and far between, however I second the motion that it would be a fantastic idea for your daughter to see one.  It would just be way too easy for your local doctors to pass certain symptoms off as being due to diabetes without thoroughly investigating scleroderma complications or even possibly other overlapping autoimmune diseases.

 

A constant pitfall for anyone diagnosed with any illness is that new symptoms can easily be ascribed to that illness, without being investigated on their own merit. In her situation, you really need to be sure you are treating the right symptoms of the right illness. Particularly, CREST (Limited Systemic Sclerosis) carries a greater risk of pulmonary hypertension. There may also be other causes, too.  I have dizziness and faintness due to orthostatic intolerance and autoimmune ear disease.  Muscle weakness can be caused by myositis, and myositis can make it hard to lift things or even to get up out of a chair. Or, perhaps it could all be due to complications of diabetes.

 

But my goodness, this is nothing to guess about.  You need to be able to make sure-footed decisions to improve her health!  Keep in touch as you pursue a specialist appointment.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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