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Is my LO the only one? Kait. 3 kids; Iowa 2345 posts
4th Apr '13

We find out tomorrow for sure, but her first set of blood tests came back positive for juvenile rheumatoid arthritis. I have this as well and so does my mom, grandparents, and two of my aunts. They sent her on Monday for repeat tests and a couple extra ones that they didn't do Friday.



IF it is confirmed, what should I expect? She's 19 months, will be 20 months on the 11th. It kills me to think about it. I struggle with everyday tasks because of my RA. I have to take an NSAID 99% of the time and it usually doesn't work. Would she have to do the same? X-rays are the next step and that's all I know...



I've posted about this once before and got no replies. I feel like there's nobody that can give me advice (besides the pedi)...



She already holds her knees and says ouch more and more each day the past week and she points to her hands and says ouch multiple times a day. That's why they're finally doing the testing.
Anybody...?

lolajessup 3 kids; 1 angel baby; Beaverton, Michigan 44070 posts
4th Apr '13

I'm sorry Hun. Idk anything about it. How'd u know she had it?!

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting lolajessup:" I'm sorry Hun. Idk anything about it. How'd u know she had it?!"


I just updated my post but:
She already holds her knees and says ouch more and more each day the past week and she points to her hands and says ouch multiple times a day. That's why they're finally doing the testing.



It's been going on since December but it's more frequent now. At her 15 month checkup the doctor was sure to write down that her knees popped and cracked.

lolajessup 3 kids; 1 angel baby; Beaverton, Michigan 44070 posts
4th Apr '13

<blockquote><b>Quoting Kait.:</b>" I just updated my post but: She already holds her knees and says ouch more and more each day the past ... [snip!] ... but it's more frequent now. At her 15 month checkup the doctor was sure to write down that her knees popped and cracked. "</blockquote>




Poor baby. I hope she feels better :(

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting lolajessup:" <blockquote><b>Quoting Kait.:</b>" I just updated my post but: She already holds her ... [snip!] ... doctor was sure to write down that her knees popped and cracked. "</blockquote> Poor baby. I hope she feels better :("


Thanks! Me too. RA is a terrible disease.

Ravey Candyass 2 kids; 1 angel baby; Boston, Massachusetts 104065 posts
4th Apr '13

You'll probably be giving her cortisone shots. Along with the daily meds for the pain. Warm baths when doing the shots help loosen the muscles.

lolajessup 3 kids; 1 angel baby; Beaverton, Michigan 44070 posts
4th Apr '13

<blockquote><b>Quoting Kait.:</b>" Thanks! Me too. RA is a terrible disease. "</blockquote>




Hopefully you can find someone who's also dealin with this. It really helps to have people who understand :( I only have one friend in here who had te same preg complication as me. And I found her by random chance.

Jessica X 2 kids; Colorado 51 posts
4th Apr '13

My 20 year old sister was diagnosed with RA when she was 15, she struggles everyday.
I hope they help your baby!

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting Ravey Candyass:" You'll probably be giving her cortisone shots. Along with the daily meds for the pain. Warm baths when doing the shots help loosen the muscles."


We would give them ourselves? I have to go to my rheumatologist for mine.

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting lolajessup:" <blockquote><b>Quoting Kait.:</b>" Thanks! Me too. RA is a terrible disease. "</blockquote> ... [snip!] ... who understand :( I only have one friend in here who had te same preg complication as me. And I found her by random chance."


I know. I go through it myself, but I'd feel better knowing what the future holds for my daughter... like what to expect. I was diagnosed at 19 so it's completely different.

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting Jessica X:" My 20 year old sister was diagnosed with RA when she was 15, she struggles everyday. I hope they help your baby!"


I do too. I was diagnosed at 19 during a flareup and was doing well... I started having pain this year and went back and had more x-rays and the RA caused one of my kneecaps to turn to the side. I have had terrible pain every single day for over 2 months. I don't want this for my daughter at all :(

Ravey Candyass 2 kids; 1 angel baby; Boston, Massachusetts 104065 posts
4th Apr '13

<blockquote><b>Quoting Kait.:</b>" We would give them ourselves? I have to go to my rheumatologist for mine. "</blockquote>




My stepmom always have them herself. My stepsister has it.

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting Ravey Candyass:" <blockquote><b>Quoting Kait.:</b>" We would give them ourselves? I have to go to my ... [snip!] ... I have to go to my rheumatologist for mine. "</blockquote> My stepmom always have them herself. My stepsister has it."


The closest pedi rheumatologist is 2.5 hours away (5 hours round-trip with no stops). It wouldn't be too bad though because we already go there for her pulmonary doc, surgeries,and neurologist. We trust them, just wish it was closer.

Ravey Candyass 2 kids; 1 angel baby; Boston, Massachusetts 104065 posts
4th Apr '13

<blockquote><b>Quoting Kait.:</b>" The closest pedi rheumatologist is 2.5 hours away (5 hours round-trip with no stops). It wouldn't be ... [snip!] ... though because we already go there for her pulmonary doc, surgeries,and neurologist. We trust them, just wish it was closer."</blockquote>




Ouch that's sucky. We got lucky. We're 30 minutes for Boston's children's. thank god because we pretty much livetherex

Kait. 3 kids; Iowa 2345 posts
4th Apr '13
Quoting Ravey Candyass:" <blockquote><b>Quoting Kait.:</b>" The closest pedi rheumatologist is 2.5 hours away ... [snip!] ... Ouch that's sucky. We got lucky. We're 30 minutes for Boston's children's. thank god because we pretty much livetherex"


We go to Iowa City. University of Iowa Children's Hospital. That's where all the pedi specialists are. The ENT specialist is the only local ped specialist.