Discussions By Condition: I cannot get a diagnosis.

small child

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: answers please
  • November 13, 2008
  • 02:07 PM

I have a 9 year old son who was born with a clubfoot. Had casting until he was 9 months old then had surgery. Found out he was missing a whole muscle in his calf that caused the curvature. Had another surgery at 9 and a half months. At 18 months had mmr immunizations and stopped talking. At 3 was diagnosed with strabismus (lazy eyes). At 4 had first eye surgery. At 6 developed asthma. At 7 has another lazy eye surgery. At 8 was diagnosed with adhd. At 8 had a cyst removed from his eye brow. At 9 (age now) was finally diagnosed with autism. He has very small stature. He is 49 inches and 51 pounds. He is in the 3rd % for weight and under the 3rd% for height. He also has developed anemia, leukopenia (low white blood cell count). He had been on boost and flinstone vitamins for 4 months straight. The white blood cell count is back to normal, but still anemic.
He has averaged 1 lb and 1 inch per year growth for the last 5 years. He hasn't gotten any taller this year. He has gained 2 lbs due to the boost. He used to be in the 75th and 50th % up until age 3-4. Cant get the doctor to do anything about it. He doesnt sleep well. Has been a restless sleeper for years. Had a sleep study done this summer, came back with nothing. Said his sleep problems were due to his autism. We also saw a geneticist this summer, everything was normal there too. He has now started thinning out hair, has had a stuffy nose for 4 months straight. Have tried everything from benadryl to advair, to singulair. I need some serious help. I dont know what else to do. Doctor wants to wait on the growth hormone study until next month. I am so frustrated I could scream!! I just want to know what is wrong. He eats great. Has high energy. Sorry this is so long. Had alot of stuff to add.

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6 Replies:

  • You say he eat great, but what does he eat ? Do you have him on any special diet ?
    gungwane 62 Replies
    • November 13, 2008
    • 05:14 PM
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  • eats fresh fruit and veggies, steak, chicken, any meat what so ever. Has feeding issues, wont eat anything soft, as in no ice cream, pudding, mashed potatoes, applesauce, etc... Eats a very well balanced meal with extra protein
    answers please 4 Replies
    • November 14, 2008
    • 01:12 AM
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  • I've posted a reply to your earlier inquiry on the same subject. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • November 14, 2008
    • 01:21 AM
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  • Ok I must day diet sounds good, and that was my only thought. Good luck, and I''m sorry for the hardship you must be going through.
    gungwane 62 Replies
    • November 14, 2008
    • 04:37 AM
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  • I venture this with some trepidation, but there are anecdotal reports of successful treatment of allergic associated autism with TSO: http://www.usautism.org/USAAA_Newsletter/usaaa_newsletter_110407.htm http://autismtso.com/research/the_science/
    aquila 1263 Replies
    • November 14, 2008
    • 09:02 PM
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  • You might try mitochondrial testing and chromosal testing, I've heard about mitochondrial testing but don't have much knowledge about it, here is a link to a chromosomal disorder that causes short stature clubfoot, etc Here's a link about mitochondrial testing http://www.cdc.gov/ncbddd/autism/mitochondrial_faqs.htm#what_are I thought this seemed really interesting... "We know that sometimes children with mitochondrial diseases seem to be developing as they should, but around toddler or preschool age, they regress. The disease was there all the time, but something happens that “sets it off”. This could be something like malnutrition, an illness such as flu, a high fever, dehydration, or it could be something else." Maybe for your son it was the mmr vaccine that set it off? Just a theory. I just finished actually reading the article and was suprised to see the mention of vaccines. Maybe this is why so many parents say it seems as if the autism starts after a vaccine, maybe the kids actually have an underlying mitochondrial disorder???
    qwertyuiop123 453 Replies
    • November 14, 2008
    • 11:23 PM
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