Viewing 6 posts - 1 through 6 (of 6 total)
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  • fbkspeach
    Participant
    April 10, 2012 at 6:09 pm
    Post count: 3
    #1058954

    Hi all! My name is Kacey and I have a 5 year old daughter named Ella. Ella was diagnosed back in September 2011 with Graves Disease, she also has Down syndrome. Kids with Down syndrome have an increased risk of having HYPO-thyroid levels and so they are screened every year. Ella’s came back hyper. We went to the Endo and after testing she was diagnosed with Graves. Her TSH was 0.01, her T4 was 18.8 and her TSI was 488%. I have yet to find another child with Down syndrome that has Graves. I am having a really hard time figuring out what is a symptom of her huge thyroid swings or what is a Down syndrome thing. Basically the last 7 months, every 4 weeks, her thyroid has gone from hyper, to hypo, hyper, hopo. Huge swings. Like TSH of 11.3 and then 4 weeks later TSH of 0.03. Currently she is taking 5mg of methimazole and .5mcg of levothyroxine. I guess my big question is how long should I expect it to take for her to level out? Are these huge swings normal? Also she has lost a lot of hair, is this normal and if so does it ever come back????? Thank you for any help!!

    keesephoto
    Participant
    April 11, 2012 at 9:38 am
    Post count: 15
    #1171174

    Hi Kacey! Welcome!
    First off let me give you virtual hugs because I know this is very challenging for you. She’s only 5 so to begin with she cannot understand her body or what is going on with it and then you had the gift of down syndrome and I know you both struggle.

    Let me say first I’ve had this disease 6 years now and still do not know much so take what I say with a grain of salt and continue to do your own research ok?! I may or may not be correct but I’m gonna try. ;)

    -From what I know of Downs, they are usually very happy children and I call it a gift because not only are they amazing kiddos but gifted in so many ways we are not. For example, they usually don’t have the capability of getting very angry, or if they do it’s temporary (they have so much to teach us!).
    So to answer one question I would say any rage she has is due to the Graves disease or the fact that these huge hormonal swings are REALLY REALLY TOUGH and make her feel like crap.

    I would ask her Dr about whether her thyroid might be trying to die, because if it is it *might* be better to remove it or have RAI (when and if they can to kiddos). Treating a thyroid that is dying with meds is very difficult and is always a challenge. This from my own experience.
    One way to know it’s dying it the continual up and down of levels without ever being able to reach stability.

    Losing hair IS normal and yes it will grow back once she is stable, however as with all hormonal changes it might grow back different (thinner/thicker/it varies).

    Again, hugs. I’m sorry you are both having more challenges to go thru!
    ~Deanna Keese

    Kimberly
    Keymaster
    April 11, 2012 at 9:39 am
    Post count: 4294
    #1171175

    Hello and welcome!

    I can’t comment specifically on Graves’ and Down syndrome, but most patients do find a “sweet spot” with anti-thyroid drugs within the first few months.

    I do know of one other mom of a Graves’ patient with Down Syndrome. We actually ran a story on her daughter in the Summer 2011 issue of the Foundation’s print newsletter; if you’d like a copy, you can send your street address to info@gdatf.org.

    This mom also co-founded a group for Graves’ parents on Facebook, if you’d like to check that out. (The group is not moderated or controlled by the Graves’ Disease and Thyroid Foundation, but includes many parents who have come together to share their personal experiences.) They are located at http://www.facebook.com/groups/265484340175004/. It’s a closed group, but you can request to join, and the organizers will approve you if you let them know you are a parent of a Graves’ patient.

    (Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

    Take care!

    fbkspeach
    Participant
    April 11, 2012 at 7:04 pm
    Post count: 3
    #1171176

    Thank you! Yes Down syndrome is a gift, we are all truly blessed to have this little girl in our lives that is for sure!!! However, the happy thing lol, not so much. Ella is the most sassy, fiercly independant child you could ever meet : ) She can be sweet…..but only when it is her idea. She pretty much busts every stereotype about Down syndrome there is! It is SO frustrating to add Graves Disease to her list of issues. I just feel like we really were at a good place with all the services she was receiving and school and then we add this to it. Isn’t Down syndrome enough???? I have talked to a few doctors about the RIA (I think that is what the intials are) and removing her thyroid all together since we seem to not be able to control it at all but everyone agrees that she is too young and too small (she is about the size of a typical 3 year old) for either option so we have to figure out the meds I guess. I do wonder if I should get another opinion with another doctor? Her pediatric endo is very nice and explains everything to me and really takes his time with us but he has said he just doesn’t have kids this young with Graves nor with Down syndrome. Anyhow, thank you so very much for your response!!!!!!!!

    fbkspeach
    Participant
    April 11, 2012 at 7:05 pm
    Post count: 3
    #1171177

    Thank you so much! I will for sure be sending my street address to you and looking for that other group too!!!!

    Kimberly
    Keymaster
    April 12, 2012 at 5:24 pm
    Post count: 4294
    #1171178

    Hello – We did receive the e-mail…the newsletter should be on its way to you. (Shipping from the Boston, MA area).

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