[karenbrzez]

#1019868

Hello!

I have looked for years for information on Grave’s Disease online but have never found anything. I have had to do all the research since the endocrinologist does not exactly know what to do. Thankfully, we moved and found a great one locally!

I have twin girls that are now 6. Brooke was 2 when she was diagnosed with Grave’s disease. She had a heart rate of 240 and was full of energy and losing weight. Her heart rate stayed the same when she was sleeping and she did not have a fever. Sure enough, she had Grave’s and she does have the very large protruding eyes. Relatives kept telling me something was wrong with her eyes, but I just ignored it before this. Well, she was treated with PTU for a short period, ended up in liver failure, was very sick. The doctors gave up on hope for her. They told me to take her home and love her (I have heard this before for her, she was premature and I was told twice she would not make it), they did not have anything to offer. I found my own Dr. who gave her "cold iodine" and that was just enough to get the levels so that they would do a thyroidectomy. Today, she is a active, happy 6 year old. They think she suffered some "damage" due to her Grave’s and the toxic high thyroid levels. She has to have her thyroid levels check every 6 weeks because she is "hyperthryoid" again…

Her twin sister, Alli was diagnosed at 4. I noticed an enlarge "bump" on her neck and asked them to do a thyroid test. I was not going to go through what I did with Brooke! They told me nothing was wrong but finally ordered in. Sure enough, the call came in that she had hyperthyroidism and Grave’s disease. We saw an endocrinologist who said there was nothing to do since I would not put her on PTU. She continued with abnormal levels and an increase in the bump for about 6 months and then her thyroid levels went to normal. The bump kept growing and so I changed endocrinologists and asked that a CT Scan or Ultrasound be done to evaluate the "bump" that was now causing serious problems with her breathing, talking, speech. Well, she was now "hypothyroid" and had a Thyroid Glossal Duct Cyst that ended up being removed this past October. She also is having abnormal thyroid levels again and has to go back in a few weeks for more blood draws! She also has the eye disease too, but not as bad as her twin. Plus, Alli had a stroke at birth and suffers from a mild Cerebral Palsy! But, she has recovered for all her diseases nicely!

Thanks for letting me ramble on. I have been through just about everything. I have been an Emergency Room Registered Nurse for over 12 years too so I hate to see any child go through this. I have to know what will happen as they age. Luckily, my son has been spared from this disease as has myself and my husband. Not sure where it came from, but I was very sick during my pregnancy and they are speculating a virus that occurred during my pregnancy may have caused this. I would love to help others and speak with parents of children with Graves too!

Thanks! Karen

[Bobbi]

#1074668

It sounds like you have been a superb advocate for your daughters with their doctors. And, they are undoubtedly a lot healthier now than they would have been had you not been able to move through the medical morass you found yourself in originally.

You commented that you would like to known what might lie ahead as they age. Obviously, the most important factor is that they not be at hyperthyroid levels for long periods of time. If their thyroid hormone levels can be kept normal, as far as I know the prognosis is good. Unlike diabetics the replacement hormone we take seems to work like the normal hormone does. The synthroid-like replacement hormones are chemically identical to T4 which is a type of "pro-hormone" in that it must be converted to T3 to be used in the cells. It has a rather long biological life span (something like a half-life of six and three-quarters days), and it is converted, and used as the body needs it (not just when you take it, like insulin). So we typically do not yo-yo hormonally which is something that is extremely hard on bodies. What is hard on our bodies is being hyperthyroid, which is why it is so important to have that controlled.

There is a bulletin from the NGDF that discusses educational issues as they might relate to children with Graves. If you can navigate the home page of the NGDF as well as you did the ins and outs of medical treatment for your girls, you should be able to find it. (I have not located it on this new board as yet! )

Wishing you and your daughters well.

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