aniwallar

Can I Pass It To My Children?

7 posts in this topic

Hi:

 

I haven't been in the forum for a long time. I'm 43 years old and I was diagnosis with scleroderma 3 years ago. I think I'm doing OK even though every time I ge a test done it always comes back funny and that means I need more and more test.

A couple od months ago my 13 year old son sarted complaining about his fingers on his right hand. He said it was painfull to move them sometimes.

at the time he was playing baseball and also guitar so I thought that was the reason.

A couple of months later he is still colpmaining so I took him to the doctor. They did many test and one of them was the ANA. A lot of his test were not normal and his ANA was elevated.

The doctor diagnosed him with rheumatoid arthritis. Hi is also having some raynauds problems with those fingers.

I cannot explain how I feel. I never thought my kids could have something like this. I know what it is to have pain and I can't imagine my having something like this.

I guess what I'm trying to ask is if anyone know anything about a connection between scl. and ra.

Thanks and have a great day

Ani

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Hi, Ani. I am so sorry to hear about your son's recent diagnosis, but I am glad you found us. Welcome back to the Forums. It is not uncommon for members of the same family to have different autoimmune diseases, though I wouldn't think of it is having passed it to him. It is too negative to look at it that way. Juvenile rheumatoid arthritis can present in several ways. The fewer joints involved at the beginning, the better the prognosis. You are lucky to have found it early. It is important for him to continue exercising and doing as many normal things as a boy his age will want to do. Do not stress about it too much, as it will only add to your own difficulties. Hopefully this will be a bonding point between you and you can give each other support.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Ani, I'm really sorry to hear about your sons diagnosis. I understand a little about how you might be feeling as 3 years ago my son was diagnosed with renal failure due to autoimmune disease. Although you are probably feeling pretty devastated at the moment ( I kept bursting into tears for several weeks after his diagnosis) it does get better. My main advice is to try not to focus too much about what might happen. We were told that his kidneys would probably fail within 6 months and would then need dialysis and I spent much of my time worrying it how he would be. Three years later he still does not require dialysis. Your worst fears may not be realised. My other advice is try not to be too overprotective - think I drove my son mad initially with my constant questioning about whether he had taken his tablets, how he was feeling etc etc! I think Jefa is right about it being a bonding experience- It certainly has brought my son and I closer.

Lizzie

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Hi Ani,

 

I was diagnosed with RA at 17 years old and it started with one knuckle and over several months spread to all of my joints. I started 200mg of plaquenil and 500mg of naprosyn everyday. Three years later I went into remission. I had a positive ANA and positive RA at that point. Ten years. later I find out I also had the rnp antibody which indicates mixed connective tissue disease (which can be RA, scleroderma, lupus etc). My disease has been manageable but I regularly see a rheumatologist. After the birth of my first child I started to get some scleroderma skin issues and lupus related rashes. I am 7 mths pregnant with another healthy child on the way and taking plaquenil to control my disease.

 

My advice to you is accept "what is" and make sure your son is followed periodically so that you can slow the progress of anything that may be brewing. I try not to think about whether my children will inherit 'my issues' one day but I feel confident I will be able to help them through anything since I have been there as well.

 

I wish you and your son the best. Reese

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Hi:

 

Thanks to Jefa and Lizzie for writing. Lizzie, my heart goes out to you and your son.

I went to the site Jefa sent me and I found out one of the things my son needs is an examination of his eyes. As it turns out, children with elevated ANA have a higher risk of developing eye problems.

My son was never refered to an ophtalmologist. I feel like now I have to call the doctor to tell him what to do. This makes so very angry because an eye exam is the first thing a kid with elevated ANA should have.

 

We really have to be on top of our own health. Sometimes I feel like letting the doctor take control but then I realized this could be "hazardous to my or my son's health"

 

Again, thanks for your kind words,

 

Ani

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Hi Ani,

 

Sorry about your son's diagnosis. I believe from what I have read autoimmune diseases run in families. They say that scleroderma is not usually passed to children. My 13 yr old has mild dermatomyositis. My 14 yr daughter has fibromyalgia. She previously had a mildly elevated ana. One rheumatologist thought she had lupus, but her current rheumatologist thinks its juvenile fibromyalgia. My youngest has gi issues (they previously thought crohns, colitis) and he has aspergers (mild autism). My mother's side of the family has a lot of autoimmune disease. I have sine scleroderma. I really believe that auto-imune disease run in families. Please don't think that you gave your son RA. You cannot control what runs in your family. All of the medical conditions with my kids happened over the last few years. They are all doing fine. I believe kids do better than adults. It is very scary and stressful at first. It does get better. I hope all goes well with your son. Please feel free to e-mail me if you would like to talk. Take care

 

E


ANN

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Ani

I'm so sorry to hear about your son's diagnosis. You asked if there was a connection between RA and scleroderma. Yes, there is. They are both connective tissue diseases along with lupus and polymysitis/dermatomyositis. Autoimmune disease can run in families (I have 3 siblings with 3 different ones). Unfortunately, no one really knows what causes these crazy things, but catching them early is so important. I hope you both have great rheumatologist with lots of knowledge on both diseases.

 

Right after my diagnosis, my mother was depressed thinking that she had passed it on to me; however after sending her information on ALL the possible causes I think she realized that it happened due to a variety of factors and triggers. So please, Darlin' - concentrate for good care for both of you.

 

I'm glad you're back posting. Please stay in touch.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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