Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
    Posts
  • cosgrovejulia
    Participant
    April 17, 2012 at 5:06 pm
    Post count: 1
    #1058966

    Hello everyone, I am new to this forum and in need of some help. My now 5 year old son was diagnosed with Graves Disease in October 2010. He was barely over 4 years old at the time and all the research we have done only shows how uncommon his situation is. Not only is his young age and gender a factor but he also has other symptoms which are most common in adults. One of these symptoms is the bulging eyes. We have been treating him with methimazole for the last year and a half. The dr. has been trying to ween him for the last year due the effects the medication will have on his liver. Unfortunately every time we reduce him his levels go out of control. He is such a bright loving boy but we are now at a point where his behavior is out of control, he can’t sit still, he can’t write neatly, can’t concentrate/focus for any length of time. the list goes on and on. This is really hard for me as his mother because people just do not understand the disease and want to label him ADD/ADHD and only see this new behavior. He also has heart problems due to the disease. His sitting rate was 160 at diagnosis which they said was pre-tachycardia. He was on propanolol for over a year to lower his heart rate but this was also stopped because his levels came down some. Unfortunately his sitting rate is back up to 130-145 again. I feel like the current treatment method may not be working and i do not know how to approach this with the dr. He is at a crucial point in his life with school as this age is where they literally learn more than any other time. Thank you for listening even if you cannot help. i think i needed to put my feelings out there to ease some of the pressure.

    Kimberly
    Keymaster
    April 18, 2012 at 8:48 am
    Post count: 4294
    #1171253

    Hello and welcome – I’m sorry to hear about your son’s difficulties. Unfortunately, there are no easy answers regarding treatment options. This article below does a nice job of going through the pros and cons of each option. (If the link doesn’t work, you can e-mail the Foundation at info@gdatf.org)

    (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).

    http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=320028&Ausgabe=254650&ProduktNr=224036

    If you don’t think your current doctor is providing the very best care for your son, a second opinion might be helpful. Here are a couple of good referral sites:

    American Association of Clinical Endocrinologists
    http://www.aace.com/

    American Thyroid Association
    http://www.thyroid.org/

    On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. (You might have to scroll down a bit to see it). There is an option for “pediatrics” on this site, but you will want to call the office and confirm that the doc has expertise with Graves’ vs. diabetes. On the thyroid.org site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.”

    Also, there is a Facebook group that was started by some fellow parents. This is not an official group 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.

    Wishing you and your family all the best!

    adenure
    Participant
    April 18, 2012 at 1:35 pm
    Post count: 491
    #1171254

    Hi!

    I am not in your situation, as it is me (the mom) who has Graves and not my children, but the idea crossed my mind about his school. I used to be a school teacher (I homeschool my boys now), but you might want to look into an IEP for him until you are able to find a treatment plan that works for your son and gets things stabilized for him. Graves Disease does alter the way we can think and handle what life brings us. For a child in school, especially starting out, I can only imagine how difficult it can be. If it were my child, I would definitely talk with his teacher and the principal- helping them to understand what Graves is and how it effects your son. Graves is a disability and if your son has a difficult time handling the daily routine of a classroom, you can look into having an IEP developed for him. These years are so important and children (although resilient) are vulnerable and little sponges. Look into getting his teacher and the principal on board with you and establishing a good relationship before the school year begins. :)

    Alexis

  • Author
    Posts
Viewing 3 posts - 1 through 3 (of 3 total)
  • You must be logged in to reply to this topic.