Wondering if my 2 year old is pdd/nos - Autism Spectrum Message Board

jeffreys mom · 02-01-2005, 05:50 PM

Hi, I am a new member and new to using a computer as well. I have like many of you had an uncomfortable feeling about my son's development. I got involved with Early Intervention in August when my son was 20 months old and showed many many autistic symptoms. When he was assessed the OT said she thought he may get diagnosed as PDD/NOS. I had been reading about the link of Milk Allergy to Autism and it had caught my interest because I had a milk allergy as a baby. The day Jeff was assessed I removed all dairy from his diet and he began to improve at an incredible pace.
I mentioned this to his pediatrician who told me there was nothing to that theory it was just coincidence. He was also seen by a neurologist for a 25 minute appointment who said he was too young to think about Autism and to stay involved with Early Intervention. His case worker is always honest with me and says that there are still delays in expressive and receptive language domains as well as flapping , food issues, and some eye contact issues although that has improved and he also responds more now when his name is called. He is also much more social than he was prior to dairy removal. For the most part he is doing great and if I hadn't read so much about autism I maybe would be that concerned. I just don't want to be blind sided down the road. His language skills are still a big concern to me. He is talking and beginning to put words together, but sometimes I feel he doesn't understand basic things with regard to communication. He can count to 20, knows colors, shapes, but when asked to " give me the fire engine" just doesn't get it. Does this sound familiar to anyone?

BetsyAnn · 02-01-2005, 09:55 PM

Most of your post sounds very familiar. The milk thing is huge. My son lost alot of his stereo-typical autistic behaviors after removing all milk from his diet. His speech improved and his comprehension greatly improved. He has had no asthma symptoms since starting the diet and we have been able to discontinue his asthma medicine. Sleep was the most significant change. His sleep improvement was so immediate and dramatic that there is no way it was coincidental contrary to our pediatricians opinion. I wish we would have start him on the diet as young as your son. My son was 36 months.

When you describe his behaviors he sounds very much like my son. In my son's case alot of the "autistic behaviors" are subtle, but there none the less. Until he actually got his diagnosis, PDD/NOS, at 32 months most people could not see him as autistic--unless they had studied the topic in depth. He's pediatrician sugguested autism at 18 months and after just 1 night of internet surfing I knew that he was on the spectrum.

I felt very desperate to get an official diagnosis but got the run around when trying to set-up appointments. We also got the "he is too young to diagnose." In retrospect getting an official diagnosis wasn't as urgent as it felt at the time. With or without the diagnosis we had to work on the area's that were a problem for him. And that's what we tried to do. I do have to mention, however, that I was actually very relived when he was finally diagnosed. (I was worried that I might freak out.) The diagnosis seemed to make the problem real. Also since the diagnosis I have not head "He just doesn't need to speak. He has older brothers to speak for him." This is good because I don't think I could controll myself if I were still hearing that statement from people.

It sounds like your son is doing great and you are getting his the help he needs. This board is a great place for information and a moral boost, I am glad you joined.

KathleenW · 02-02-2005, 09:16 AM

My son's change was very dramatic when we took him off milk. We also started B6, magnesium and DMG daily. One month after my son was diagnosed with PDD we saw the top neurologist in the area. His exact words were I am shocked that they would give you that diagnosis. Your son looks like a completely normal child to me. I also had a milk allergy as a baby and to this day can not even tolerate 1 bit of milk. I break out in hives and my throat closes up.

Is your son in speech therapy? I would start immediately. Start working with your son at home. My son had problems with following directions also. You need to show him how to follow directions. I would say pick up the blanket and put it on the table. He would walk over pick up the blanket and then put it down on the floor. I would show him with a hand over hand prompt. When he picked up the blanket I would take his other hand and walk with him to the table and place his hand with the blanket on the table. In the beginning our kids need a lot of help, but once they start to make the connections progress comes very quickly. Good Luck!

jeffreys mom · 02-02-2005, 10:42 AM

Hi ... As I stated, I am new at this computer thing and I'm not sure if I am answering Betsy ann or Kathleen or both. In any event I appreciate the support. I have questioned time and again about the Milk thing. There just has to be something to it regardless of what the Doctors say. I really have a hard time with the wondering if something is wrong. According to his pediatrician he's young, according to the Neurologist, he's young. Obviously, I don't want there to be any thing wrong, but I'd rather know for sure one way or another. I get very anxious whenever I see other kids that are age appropriate or when Jeff starts doing some other odd thing or a previous odd behaviour surfaces again. I feel like I am always scrutenizing him and it's not fair to him after all he is only two and they are odd beings in their own rite. I just don't want to be in denial either. Also, the fact that two Doctors have torn the milk theory to pieces when I know and his early intervention worker knows the improvement since coming off milk makes me question whether I should seek out another Pediatrician and Neurologist for a second opinion. Thanks to both of you !!

jeffreys mom · 02-02-2005, 10:49 AM

I forgot to answer about the speech therapy. He was seen by a speech therapist who suggested services. This is going to begin with in the next month. Thanks