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beaty71

2 Of My Boys Show A Few Signs

5 posts in this topic

When I was first diagnosis with scleroderma the one thing I found comfort in was the dr. telling that this was not hereditary. I now have my doubts,last year my now 8 yr old son had pnuemonia,it could have been easily diagnosis with a chest x-ray. Instead his ped. ran blood tests knowing my diagnosis because he didn't normal symptoms of pnuemonia. In the meantime we found the pnuemoia witha ct scan. I wasn't worried about the blood work after that, then several days later she called withresults and he has a very high positive ANA. My RA is pos his is neg. I took him to the rheumatologist right away,he says no signs of active disease but may or may not develop later try not to worry. :blink:

I know this a long story,but I need to tell someone and maybe get some input.I have 3 very active boys 15,11,& 8.They are very involved in baseball,basketball,football, and golf. The last thing I ever want for them is for them to go thru what I have. A couple of weeks ago my 15 yr old told me during baseball practice his hands were freezing and his fingers turned white. It scared me but I haven't seen any changes. Well when he was at school on his lunch he said it happened again so he took a pic withhis phone. Two of his fingers were as white as a ghost. When mine are white they are very painful. Should I take him to the dr. and have him go thru all of these tests or wait and see what happens? My 8 yr old went thru so much during that time withall of those tests. :(

I can deal with me being sick, I'm not so sure I can handle the idea of them going thru this.

Diana


Diana

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Hi Diana,

I can understand the stress this can cause on you. My little 6 yr old just had surgery on her spinal cord last month. You worry so much for your kids and you just want them to be fine and not have to deal with the stuff that we have to go through. For peace of mind you may want to take your older son to the dr. He may have primary raynaud's and not secondary to something else. If it is just some blood they may want then I would do it. Otherwise you are always going to have that worry on your mind. Kids are resilient. While my daughter was in the diagnosis stage, through the past two years she has had, 5 Mri's, 2 CAT scans, 5 xrays, a urodynamic test, blood tests and then, spinal cord surgery. She doesn't resent me, she is thankful she is feeling better.

 

Please let us know what you decide. Hugs, from one mom to another....

 

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi,

I'm so sorry to hear what you're going through! These autoimmune diseases are so scary because we know so little. My sister started experiencing Raynaud's when she was a teenager and is now about to turn 38 and while she still has it now and then, she's healthy as a horse. She recently moved to Hawaii and due to the nice warm weather she has "fits" (as she calls them) even less, but again, she's had them now for over 20 years. My uncle also had Raynaud's starting in his early 20's and never had any major complications until he got much older (in his 60s) and years and years of smoking caught up with him (as well as poor self care). So while sclero certainly seems to come hand in hand (pardon the pun) with Raynaud's, it doesn't appear to be the other way around.

Obviously though, you probably want to discuss this isse with your rheumatologist. My heart goes out to you--like you, I've been relieved to know that sclero is not really a heritable disease because I can't bear the idea of my daughter getting it someday.

 

Warm wishes and know that you and your family are in my thoughts,

ErinF

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Hi Diana,

 

I'm with Lisa, go for the blood tests and try to ease your mind. I know that even though doctors say it's not hereditary, I always have that worry in the back of my mind. As moms we always will.

 

Take Care,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Diana,

 

As I understand it, it's quite common for relatives of people with autoimmune disease to also have one or two symptoms of it themselves, without developing full blown disease. Even if a blood test was positive for something, it wouldn't "prove" that he had the illness, since relatives often have some positive antibodies without it ever developing further, too.

 

So, although I certainly understand the worry of it all, perhaps you can find some slight reassurance in the idea that Raynaud's is very common in the general population, but scleroderma is very rare; and scleroderma is even much more rare among males.

 

Do take him to the doctor for evaluation, diagnosis and possible treatment. He should at least learn how to avoid and minimize attacks and to respond to them promptly and properly. But blood tests wouldn't prove anything at all, in the absence of other telling symptoms. So you may want to consider just advising him to always have an annual physical, to report any new symptoms to his doctor, and to always report his full family medical history. They figure scleroderma is hereditary in about 2% of cases, I believe -- and even then, it's rare in families even where there is a hereditary predisposition.

 

So, somewhat of a balanced approach to it all -- a middle ground between just avoiding it or shrugging it off, or total panic over the worst possible outcome.

 

His doctor may not do any tests at all. Many of them will simply diagnose it based on the description of the attacks, and then take the treatment plan from there. Just having the diagnosis is half the battle, since then you can teach him ways to avoid attacks. For teenagers, that often involves changing hobby and sports activities, such as selecting summertime or indoor sports instead of rugged outdoor winter sports.

 

I'm sorry he has Raynaud's. But odds are in his favor that will be all he has, thank goodness.


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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