Discussions By Condition: I cannot get a diagnosis.

My daughter needs a diagnosis desperately

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: aubreysmom
  • July 31, 2008
  • 04:59 PM

I have an 8 year old daughter who has been showing symptoms of something since birth.

First, it was the wandering eyes. The lack of focus, the inability to smile or laugh or interact until after 5-6 months of age. Then it was the despondent infant who didn't care if I was there or not. Didn't cry for me, except regarding food.

Later, it was her inability to understand and use language at a normal rate. She didn't respond to her name until after the age of 2. I brought her to an opthomolagist who corrected her strabismus (it was so bad all you could see most of the time was the whites of her eyes). He did a wonderful job and her eye function was almost normal and she apparently had normal vision.

Then we began to notice something else. She began to gain weight, in an abnormally fast rate, and would always want to eat. We kept telling the doctors something was wrong and they at first blamed it on bad parenting. She would scream for food and eat whatever she could find. Her only consistent language development up til the age of 2.5 was regarding obtaining food. It was as if I was starving her.

So, at about 3 years of age we had her tested for autism. She tested with 80% probability that she did indeed have autism. We also took her to a pediatric endocrinologist, who tested her for prader-willi and thyroid disease. She also had an MRI to rule out any tumors in her hypothalamus.

Once these tests were all negative, I was again blamed for her condition, being told "letting your child sit in front of the tv and eat chips all day will cause her to be overweight." I'd like that doctor to see her now. We began a diet and a "play" exercise regimen. We locked the cabinets. With her limited understanding of the world, it was very traumatic and she would often beat herself because she was so hungry and would steal food from others. She was called the "human vaccuum cleaner" at her daycare. Meanwhile, she had packed on over 75 pounds. She was barely 3 years old.

This somewhat changed around the age of 5. Her "social norms" began to develop and her language slowly improved. She began to want to have relationships and did sometimes realize the implications of her actions. She wanted a friend or two. So when she entered kindergarten, weighing over 100 pounds, that was very difficult. The school "tested" her for autism again, and found that she was not autistic by their guidelines. This test was an assessment done by an LCSW. So she could not qualify for special ed, even though a child could see she needed help. She could not even wipe herself. We still followed a stricter diet, fast food only on special occasions, honestly... like the celebration of her graduation from kindergarten she got to have a piece of cake and 2 slices of pizza. We tried gluten-free, and it did nothing to stem the gain. We tried sugar free, as well.

I will also say that the rest of us are well within healthy weight ranges. I am 5'5 and I weigh about 150 pounds. Her father (not in our life) was about 5'10 and weighed 160 pounds. Her sister, was always on the 50% for weight and height. My parents, siblings, everyone was pretty much normal. My brother was a little obese, but he truly did eat too much and is very lazy. He is 6'3 and weighs about 270. He is a big guy.

Aubrey is now 8 years old. She finally got an IEP for the 2nd grade. She weighs 160 pounds now. She weighed 140 at the beginning of her 2nd grade year. She has gained approx 20-30 pounds a year since her birth. That is so abnormal, even for a child who has a problem "sitting on the couch eating potato chips." She does not however steal food anymore and always asks permission to eat (98% of the time) and is allowed sugar free snacks only and mostly things like cauliflower and edamame is what she snacks on. She has begun to show preference for certain foods, where as before she would eat whatever you put in front of her (even dog and cat food). We buy no sodas with sugar, she mainly drinks water and the occasional sprite zero and she is allowed only 3 glasses of sunny d a week and one glass of skim milk a day. Once a week she is allowed the sugar free chocolate syrup to be added to her milk. She consumes generally between 1100-1300 calories a day. We give her very small plates of food so she is allowed the "idea" of seconds. She eats grilled shrimp over rice with a side of green beans... things like that. Healthy eating.

She is still recognized as an autistic child by her medical staff. Although, I feel when they retest her next year she will not be. Her social skills are about in the range of a 6 year old. For instance, she still cannot share her toys and if she wants a toy someone else has she just snatches it. Even with CONSTANT reprimands.

So, to sum it up. Severe developmental delays, Excessive weight gain, autistic like behavior, Not Prader-Willi, not a tumor, not a thyroid condition. (as of testing at the age of 3 and 5.) She also is hypersensitive to touch, noise, sights and sounds. She gets staph infections constantly. Mainly because she is a skin picker and she doesn't wash her hands as often as she should (as any 8 year old would). I have attached a webpage that has some pictures of her up to about the age of 4. I will try to attach some more recent ones on there now.

Any ideas? theories? Help?


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2 Replies:

  • First off, it's not the school to decide if the child has autism. It is a category which identifies her as a special education student, given by a medical doctor. You show them the medical report that states she has autism and it should be her primary disability, with whatever they gave her as the secondary. I also wonder if she is really autistic; most of them are usually very picky eaters. There could be something else going on and you need to request a comprehensive evaluation to be done by a licensed school psychologist for a more accurate evaluation of the situation. I would not put much credit to the report done by a LCSW; acutally none. It sounds like she has a lot of health issues and needs to be under the care of a good endocrinologist and nutritionist. Her weight would suggest that her diet needs even more strict guidelines, which the nutritionist would give. She should not eat school lunches, either..You should probably find a child developmental doctor to work with for the duration of her childhood.
    Monsterlove 2,921 Replies Flag this Response
  • sounds like it; you are correct...but I would suggest mom consult with a nutritionist and I'm surprised that a doctor has not linked them up. I would also keep a diary of everything and not let her eat school lunches. She's getting something somewhere and we don't know where or what it is.
    Monsterlove 2,921 Replies Flag this Response
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