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Forum: Autoimmune Diseases and Disorders

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  #1  
June 10th, 2010, 09:38 PM
WishingStar's Avatar Platinum Supermommy
Join Date: May 2007
Location: TX
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I'm hoping somebody here can help me. It's actually one of my daughter's that I am worried about right now.

But, first, some background info...

I'm Talia, SAHM to 5 girls. I've also had 5 miscarriages. After the 4th one (11/2008), my doctor did some testing and found that I was ANA+ and had MTHFR. They gave me folic acid and aspirin for the MTHFR and sent me to some specialists. They did SO many tests and could not find anything else. I do not have any other symptoms of autoimmune type disorders. My ANA results was 1:1280 and it was speckled. They finally said I must be positive because my mother has RA and some people have +ANAs if they are related to someone with an autoimmune problem (not sure how true that is, that's just what they told me).

I went on to have another miscarriage and then a happy, healthy 9 month long pregnancy.

About 2 months ago, my 6 year old daughter and my dh got new bikes and they (along with my 12 & 9 year old) entered a virtual race type thing. They started going out on bike rides for 20-30 minutes a few times a week. When they would get back, my dh would tell me that Jaedyn cried the whole time. Then she started crying when she was told to go up the stairs to her room. And I found out she was going to the nurse's office at school at least once a week.

I wasn't sure what was going on. Was it growing pains? Was it attention (the baby was born in January)? or was there really something going on?

When I brought the baby in for her check up, I asked the doctor about it and she said to bring her in when school was over (the next week). I went ahead and did that, telling Jaedyn that she'd probably get blood drawn (thinking that she might be scared and if it was an attention thing, she'd back out - she didn't).

The exam was fine. No swelling, no weird findings. They did do blood work. I got called today, the only thing abnormal in her blood work is the ANA. It was positive (1:640) and speckled. Everything else was fine.

The doctor called the pediatric rheumatology people with the children's hospital here and put her on a cancellation list. There are 12 people ahead of her, but they said they have an average of 2 cancellations per day. So, I'm hoping for an appointment within the next 2 weeks.

In the meantime, I worry... so she has the +ANAs, like I do, but she also has pain in her legs, but no swelling. She doesn't seem to fit a lot of the big name diseases (JA or Lupus).

Does anyone have any advice on what I should be looking for (symptoms) or what questions I should ask? Should I push for certain tests or stay away from certain ones? Should I keep her active (bike riding, tumbling, etc) or let her do what she's comfortable doing or cut it all out?

Her birthday is in a few weeks and when I asked her what she wanted for her birthday, she told me, "I want my legs to stop hurting." Broke my heart.

Thanks ladies.
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  #2  
June 25th, 2010, 08:37 PM
Celena's Avatar Proud JM hostess
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I'm so sorry to hear about the scary times you're going thru with your 6yr old DD!

Have they called with an appt date for you yet?

I'm not even sure where to begin as far as suggestions because there is so many different things it could be or not be, and I'm not dealing with a pediatric AD so I'm sorry that I wouldn't be of much help. I do want you to know that we're out here and support for you when you need it.

there has to be a juvenile autoimmune association out there that can give reliable information along with helpful questions to ask

Autoimmune Disorders Center - Everyday Health

I googled it and this was the first site that came up

(here is what popped up when I searched)
juvenile autoimmune diseases - Google Search

There are some good websites out there that tell you what certain tests mean and what the results are...
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  #3  
July 14th, 2010, 09:24 PM
WishingStar's Avatar Platinum Supermommy
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Thank you. I'll check those out. Right now, we have an appointment scheduled for Aug 4th. She's supposed to be on a cancellation list, but no calls yet.
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  #4  
July 15th, 2010, 07:35 AM
mmllhh's Avatar Mega Super Mommy
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Does your DD get rashes on her face? unexplained fevers? Chest pain? These are some of the questions that they will ask you.
I hope that it is nothing and it's just growing pains. Good luck and keep us posted.
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  #5  
July 15th, 2010, 07:22 PM
WishingStar's Avatar Platinum Supermommy
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No rashes or chest pains, but she will get a temperature for a day or two and then it goes away. Also, she runs a little warm... ever since I first checked her temp, it was 99+. At the doctor's office when she got her blood drawn, it was 99.8 and she said she felt fine. Not sure if that's anything or not. Thanks for bringing it up!
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