[ahovis34]

#1059131

Last year my daughter, Taylor, was diagnosed with Graves’ disease…she was two and a half. July 28th will mark the one year anniversary of her diagnosis. It all began when over a period of 8 months she was getting sick every 3 to 4 weeks. We were able to get in to see a pediatric gastroenterologist who diagnosed her with cyclic vomiting syndrome and they also drew blood for labs. The next day I received a phone in the morning saying her thyroid levels were elevated and they made an appointment for us to see the pediatric endocrinologist later that day. They did an exam and after reviewing her labs and her 196 heart rate they concluded she has Graves’ disease hyperthyroidism. It took about 6 months before we didn’t have to hold her down and forcibly give her the Tapazole and propranolol, and around thanksgiving 2011 her levels were finally normal (after about 3 or 4 hospital admissions for dehydration from July to this time). I have not had the opportunity to be able to talk to other parent’s of a child with Graves’ and hope this forum will be able to connect me some. I have a lot of questions for other parents out there in how they are handling things. Right now her levels are still normal, she hasn’t been admitted into the hospital since February (longest hospital free stretch since June 1), but is still dealing with cyclic vomiting syndrome.

[Bobbi]

#1172411

My heart goes out to Taylor — and to you. This has to be a scarey time for her.

We do have parents of children with Graves who contribute to our board from time to time, but it is probablematic as to whether they are following the board with any consistency. People tend to come to boards like this one when there are problems. When life is going smoothly, they tend to let us drop.

I don’t know if the foundation keeps a list of parents willing to talk, as needed, with other parents. That might be a good idea to pursue. Anyway, Kimberly will know more about those types of things, and may be able to help.

I have not heard of cyclical vomiting being associated with children with Graves. That doesn’t obviously rule things out — I’m not a medical professional. But many of us do indeed have other health problems that are not caused by Graves.

Wishing you well, and good days for Taylor.

[Kimberly]

#1172412

Hello – If I have the right person, I think I e-mailed you some info offline yesterday. If the e-mail didn’t arrive, please let me know.

The Facebook group that I mentioned has a lot more parents posting than this site. (I believe that one of the moderators is out this week, so approvals might be a little slower than usual). However, you can also use the “search posts” feature here to search for keywords like “children”, “parent”, “kids”, etc. to read stories from other families.

Take care!

[Carito71]

#1172413

Ahovis34,

Hello. Welcome. I just read your post. I was so sick since June 8 but I’ve started to feel better and therefore I’m reading other people’s posts.

I’m so so sad to read about your daughter. I do hope she feels a lot better soon. I have a cousin who is 30 y/o now. She had to have her thyroid RAI when she was a little girl because of hyperthyroidism. She takes medications now of course to treat her hypothyroidism. I don’t know why she had the RAI. She was just a little girl and for what I have read, they don’t do/don’t recommend RAI on children. I see her once in a while and I haven’t kept in touch with her that much. Finding out that I have GD has made me think about her.

I found several links on line but I’m not sure if I can post them here. What I did was type “cyclic vomiting syndrome” and they came up. There is one that is an association.

PubMed posted something in 2009 that said that they were reporting the first two cases of cyclic vomiting syndrome in Lupus patients. Lupus is an autoimmune disease. GD is too. Maybe there is a relation. I have two other autoimmune problems and my Dr. said yesterday that it made sense b/c I already had two autoimmune problems.

I hope little Taylor gets better soon.

Keep us posted when you can.

Caro

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