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  • what should the next step be?

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    Old 04-11-2006, 05:13 PM   #1
    chrisss
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    what should the next step be?

    Ok-after several calls to pediatrician and no return call---I am wondering what should be the next Dr. for my daughter. I have had several "I am sorry-we do not take children." or "I am sorry-we can not give you advice" Its getting old. I am told her pediatrician is on vacation.

    Also--is there an internet site besides diagnose me, as they do not take children, where you can input abnormal labs and see what could be wrong?

    Thanks for info.
    Chris

     
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    Old 04-12-2006, 01:03 AM   #2
    ellie342
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    Re: what should the next step be?

    In a previous post, you said:
    "We have to really monitor her in the snow because her body welts from the temperature. "

    Hives (urticaria) can be due to autoimmune thyroid disease. In retrospect, one of my first symptoms of my thyroid disease was probably the hives I got from cold exposure on a few occasions. I remember seeing a poster presentation years ago at a medical meeting, about the case of a girl with chronic hives. Finally they tested her thyroid. She had positive antibodies and "normal" thyroid function. They suppressed her thyroid by giving her thyroid hormone, and her hives finally resolved.

    I mention all this just to say that I think it further confirms that she has thyroid disease.

    I also agree with a previous poster that she should be screened for celiac disease - an autoimmune reaction to wheat gluten, treatable with a gluten-free diet, and which may also be connected to other autoimmune diseases. A simple blood test called anti-endomysial antibody can screen for this. It is important because, if she has celiac disease, proper treatment may reduce or reverse other autoimmune diseases like diabetes and thyroid disease.

    I know many people here have had bad experiences with endocrinologists, but I wouldn't completely rule out seeing another one in your child's case - but you need a pediatric endocrinologist specifically. And try pushing them to just "try" her on a little thyroid hormone - sometimes they might agree.

    Otherwise you may have better luck with a primary care physician who is known to treat thyroid disease.
    How is your pediatrician generally?
    Ellie

     
    Old 04-12-2006, 06:52 AM   #3
    chrisss
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    Re: what should the next step be?

    I believe she was tested for celiac when she had her endoscopy done. My daughter does not eat any of the wheat products that they listed besides corn occasionally. She is not a starch eating child. Her primary foods are vegtables and fruits. Meat follows this. Her pediatrician is ok about treating her. she greatly believes in treating a child and not the illness. She would prefer my daughter to not go to a specialist is she can help it. Although she has prescribed my daughter 5 of her medicines, she does not strongly believe in medication either.

     
    Old 04-12-2006, 08:05 AM   #4
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    Re: what should the next step be?

    Quote:
    Although she has prescribed my daughter 5 of her medicines, she does not strongly believe in medication either.
    Well, that's a good thing, I guess, except she must not have been looking too hard for the thyroid problem. It might be she doesn't know much about hypoT in children... You can't assume she does.

    You are going to have to take firm charge of this situation. Your next step should be to have a frank talk with the pedi'n. If she doesn't know about the ANA and Tg antibodies results, be sure she gets a copy of that report. Insist on a TPO test, as well as free T4 and free T3. Tell her that you've discovered that there is every indication that your child has chronic infiltrative thyroiditis... also known as Hashimoto's disease (or H. thyroiditis).

    The presence of antibodies and multiple symptoms means that she should be given a trial of thyroid hormone. There is no danger in a small trial dose. If it helps, it should be steadily increased until the thyroid hormones (T4 and T3) rise to the center of their ranges.
    Improvement of symptoms upon initiation with a small trial dose would positively identify thyroid disease as the root problem to a competent clinician.

    I found some good information about Hashi's in general and Hashi's in children on the Thyroid Canada website. It says in certain terms that symptomatic Hashi's should be treated. You may be able to use this info as ammunition if you keep getting the medical run around. (We can't provide direct links here; you'll have to copy and paste the URLs into your browser address bar.) ~
    http://www.thyroid.ca/Guides/HG05.html#4
    (In children - halfway down the page) http://www.thyroid.ca/Guides/HG09.html#2

    Depending on the doctor's personality, several things are possible:
    1) If she's a truly good doctor, has an open mind, cares about properly treating her patients, and is willing to learn things she hadn't known before, she will cooperate fully in exploring the information you bring her. If she does that, she will undoubtedly provide the correct treatment, even if she has to learn how first.

    2) If she has the big ego common to so many MDs, she will pooh-pooh your research, tell you to stay off the Internet, will declare the tests you ask for as unneccessary, will refuse a trial of hormone, and will allow your child to remain sick.

    3)If she starts avoiding your calls and ignores the info you present as if it will "go away" without comment, she's afraid of censure by her professional organization for prescribing treatment. You won't get anywhere with her on this subject from that point on.
    OR
    4) If her demeanor is as described above, she may have indeed realized that she has been remiss in her diagnosis thus far, and she will become afraid of a malpractice lawsuit.

    A pediatric endo is probably her best bet if the pedi'n continues to flounder. Pedi endos are few and far between though, and you might not be able to find one unless you live in or near a large city. You could contact the MAGIC Foundation for help in locating one, I think. Ideally, your pedi'n should assist you in this as well.

     
    Old 04-12-2006, 08:49 AM   #5
    elmhar
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    Re: what should the next step be?

    I would ck w/nearby research & teaching hospitals. If they don't have pediatric endocrinologists on staff, they may be able to refer you on/give you phone numbers, etc. Many ped endos, like adult endos, are focused on diabetes. Ideally you would find a ped endo who is more of a thyroidologist.

    Best wishes.

     
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