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Old 04-12-2008, 07:19 PM   #1
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jen9803 HB User
Pediatric Grave's Disease...help!

My daughter is 4.5 yrs old and recently diagnosed with Grave's. Her thyroid antibodies were off the charts, with super suppressed (not even measurable) TSH, only slightly elevated Total T3 and Total T4. Our pediatric endocrinologist has been a pain at best. Getting answers is like pulling teeth.

She has a LONG, complicated health history, former 25 wk preemie, had a trach, still has some airway issues, lots of pulm issues (but no definite dx, aside from the lingering preemie lung disease and asthma), a mild valve issue and GERD. Her body temp is consistently low, averaging around 96.0 deg F, which is what prompted me to push for thyroid labs, thinking she was hypo not hyper.

Anyway, if anyone out there is hyperthyroid or has Grave's, I'd love to hear from you. My daughter's speech is still significantly delayed, plus she's not quite 5, so trying to discern any issues with her health can be very hard.

I was also wondering if anyone with Grave's has been tested for other autoimmune disorders. I've read several places that one autoimmune and there's a good chance for more. I still have that nagging feeling that we are missing something.

She is currently taking methimazole as she is too young for the RAI. My other question, for anyone on methimazole, did you experience blood clotting issues? We have reason to believe that the methimazole is impacting her clotting time, but the endocrinologist is blowing me off (as usual). I don't care for this MD, but I guess I need a pediatric endocrinologist and the only ones here are in the same group and I don't think that switching to another in the group is an option. (Her thyroid labs sat out there for 3+ wks with the antibody info and I only found out about it on an unrelated call to the pediatrician, and it took several more phone calls, an email to the MD, and then the director of the dept to get any kind of follow up. Let's just say I don't have a lot of faith in her). I am willing to travel, but am trying to get more information before it comes to that.

So, any other hyperthyroids, Grave's...I'd love to hear from you. Share any info you have that could help me get the best possible care for my little girl.

Thanks,
Jen

 
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Old 04-12-2008, 08:39 PM   #2
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LisaBob HB User
Re: Pediatric Grave's Disease...help!

Jen,

I just read your post. My heart goes out to your little girl - and to you. I'm so sorry she's had to go through so much.

My twins were preemies and have had ongoing health issues - 12 years. It takes a lot out of you.

I hope you decide to find her another doctor. It's just unacceptable that her current doc has so little apparent time or interest in something so critical.

We'll keep you in our thoughts and prayers. Let us know how her treatment goes in any case.

Lisa

 
Old 04-13-2008, 06:12 AM   #3
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jen9803 HB User
Re: Pediatric Grave's Disease...help!

Lisa,

Your prayers are appreciated. My older daugther, now 10, was a 24 weeker. She suffered no long term issues. Still on the petite side, but no other complaints.

Jen

 
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