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Someone help me understand

Michelle - posted on 08/12/2009 ( 3 moms have responded )

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Hi. My name is Michelle. My husband and I are raising my great nephew ( we consider him our son and he only knows us as his parents). Anyhow, he is diagnosed PDD-NOS. I am a bit confused as to whether this is part autism or not. Some say it is, while others say it isn't.

Right now, my biggest concern is his behavior and lack of sleep. The doctor has him on a liquid sleep medince along with melatonin. But this is not working. I don't know how much more I can take from lack of sleep :(

As for his behavior, I am not even sure where to begin. He bites himself. We got him a set of teething rings, but he still continues to bite himself. He's constantly throwing "fits", screaming at the top of his lungs, stomping his feet, and the list goes on. This is so bad that we pretty much confine ourselves to the house, unless we really have to go out.

He loses toys and privelges(?) when he "acts" up, which usually makes the "fits" worse, but he eventually does settle down.

Is his behavior part of the PDD-NOS or is it a possibility that there is more to it?

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Tia - posted on 08/15/2009

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GF is a Gluten Free diet. This means all wheat, literally anything with even a little bit of wheat on it, like even breading on chicken nuggets. My son, who is eight, i took him off of wheat when he was four, and in less than a month called me mom and said chocolate. He could not slow down enough before that to be understood much; it was just gibberish. Another one is also milk that is a big one. Trying rice milk or goats milk is much better for us and our kids any how. But back to Gluten Free. Fred Meyers has many gluten free stuff in their natural aisles, and there are gluten free stuff at Coops, and also a gluten free store here in Tumwater, WA, called GF Joe's. Not sure where you are, but i definitely reccommend you try this for at least a month. You should notice a difference in less than two weeks. another thing...is he really thin? Does his tongue look like it has actual continent like formations that look like thrush? If he at least has both of those, he is definitely gluten intolerant. Especially if he wants to continually eat every two hours. This is because he is not getting the nutrients he needs. The wheat is actually hurting his intestines, a very indepth info, that you probably do not really want to hear, but definitely look up info on it at gluten free sites, and they will give you more info and other signs of this. Please let me know!! Will be praying for you!!!

Michelle - posted on 08/13/2009

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Thanks Jennie,
No one has ever mentioned about the food :( Therefore, I am not sure what the GF/CF diet or the IGG/IGE blood test is? Is this something I should be questioning the doctor about? Also, what is a DAN doctor?

Jennie - posted on 08/13/2009

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Hi Michelle,

Yes PDD-NOS is a form of Autism. Many times when these kids have these types of behavior is because they are reacting to how they physically feel. Think about how you feel when you have the flu. You don't want to do anything. Most of these kids feel this way all the time. They physically hurt and can not tell you. Also they may be having a reaction to a certain food they ate. Think about how you feel during PMS. They feel this way after eating different foods and they can not communicate that.

The things that made a difference for us is the GF/CF diet and the IGG/IGE blood test. We had huge behavioral changes with in days of removing gluten and the foods the test showed they were sensitive to. Also try to locate a DAN doctor close to you. They will help you get your son on the supplements that he needs. We could list different supplements for you, but different ones help different kids. I love the saying If you met one autistic kid, you met one autistic kid.

Good luck, this phase does not last forever.

Jennie

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