jeffreys mom
02-01-2005, 08:50 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?
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?
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BetsyAnn
02-02-2005, 12:55 AM
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.
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, 12:16 PM
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!
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, 01:42 PM
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, 01:49 PM
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
Joey'smom
02-02-2005, 02:16 PM
Most Peds will tell you that there is no link between the change of his diet and autism. My son has made remarkable progress in the last 9 months that he has been dairy free. When I told my Ped he was dairy free, his only sugestion was to make sure that he got calcium from other sources.
jeffreys mom
02-02-2005, 03:11 PM
Is your son officially diagnosed, how old is he, and does he sound like my son?
Joey'smom
02-02-2005, 03:55 PM
My son was officially diagnosed at the age of 5. He started early childhood at 4 and received speech and occupational therapy. Up to that point he was classified as being developementally delayed. He was diagnosed by a neurologist.
I would continue keeping him dairy free and to trust your instincts.
I would continue keeping him dairy free and to trust your instincts.
BetsyAnn
02-02-2005, 10:25 PM
Jeffrey's Mom, you may want to visit a DAN doctor if that is possible. I don't know if you are familiar with the term DAN doctor. In case you are not I will tell you a little about it. DAN stands for defeat autism now. These doctors treat autism as a physical illness and use biomedical interventions such as diet, supplements. and detoxification. The treatment is based on the needs of each patient and alot of tests are usually ordered. The doctors that follow this protocal are having alot of success treating autism. A great many of them have been "converted" after having their own child or grandchild diagnosed with autism. When being the one faced with this problem you tend to not worry so much about "double-blind cross over studies" and "scientific evidence" you try things and if it works you keep doing it.
If you have not yet read the book "Children with Starving Brains," I would highly recommend it.
About the pediatricians . . . we have keep our pediatrician even though he does not buy into any of the biomedical interverntions we are using. He also mde sure we were giving him calcuim supplements since he was off milk. We see him for pinkeye or step throught but we see the DAN doctor for help with the autism. I think it is hard to find a pediatrician who finds the diet or other biomedical interventions credible. It goes against everything they are taught. I do think things will change in the future. The mainstream medical community is really pushing for omega-3-fatty acids to help prevent and treat heart problems-I find that a positive step
Trust you mother instincts. You know your son better than anyone. You see all of the different aspects of his personality, others just see a glimps.
If you have not yet read the book "Children with Starving Brains," I would highly recommend it.
About the pediatricians . . . we have keep our pediatrician even though he does not buy into any of the biomedical interverntions we are using. He also mde sure we were giving him calcuim supplements since he was off milk. We see him for pinkeye or step throught but we see the DAN doctor for help with the autism. I think it is hard to find a pediatrician who finds the diet or other biomedical interventions credible. It goes against everything they are taught. I do think things will change in the future. The mainstream medical community is really pushing for omega-3-fatty acids to help prevent and treat heart problems-I find that a positive step
Trust you mother instincts. You know your son better than anyone. You see all of the different aspects of his personality, others just see a glimps.
jeffreys mom
02-02-2005, 11:36 PM
Betsy ann, Thank you for that information. I have done some research about DAN and have spoken with the office of the only DAN Dr. in my area. Unfortunately this particular office does not accept my insurance and the fee was $500.00 an hour with a minimum 2 hour visit. We felt that was alittle out of reach for something we weren't sure would be right for us. I am lucky though, because there is a DAN conference being held in my City this April and I plan on attending. Based on what I learn at this conference we will make a decision then as to whether to pursue this DAN Doctor.
What confused me though when I called this office, he was not a medical doctor . He was a psychiatrist ?? Is that the case with all DAN Doctors? Thanks for the info. I will look into that book.
What confused me though when I called this office, he was not a medical doctor . He was a psychiatrist ?? Is that the case with all DAN Doctors? Thanks for the info. I will look into that book.
BetsyAnn
02-03-2005, 12:59 AM
That is a steep price. Our DAN doctor's current prices are $350 for an initial consultation which takes about 2 hours, $175 for 1 hour follow-up visits, and $87 for 1/2 follow-up visits. He advises you to study all of the literature you are given you so the appointment time is well spent answering specific questions and making a plan. Our doctor is an emergency room physician. He works at his DAN clinic once a week. He is one of the doctors who did not buy into the protocal initially. After his son was diagnosed with autism his wife did hours of research and insisted they try some of the biomedical interventions. After seeing the changes in his own son he changed his position. He then set up the clinic to help other families.
I think all types of Doctors are signed up as DAN doctors. But there is a specific protocal they should be following. Seeing a psychiatrist could be a plus since he is qualified to give an official diagnosis.
Most of the DAN protocal can be followed without seeing a doctor. I am excited that you are able to attend a conference. I would love to go to one.
I think all types of Doctors are signed up as DAN doctors. But there is a specific protocal they should be following. Seeing a psychiatrist could be a plus since he is qualified to give an official diagnosis.
Most of the DAN protocal can be followed without seeing a doctor. I am excited that you are able to attend a conference. I would love to go to one.