Hi, I need to know if I am on the right track with getting my son help. Terry is 27 months. He has signs of PDD. However the doctor my Pediatrician recommended will not be able to see him until Dec.This doctor will be a Developmental Pediatrician.I have had him evaluated with hearing,speech and O.T and he is getting speech twice a week and O.T once a week.I asked the Speech Therapist if I should take hime to a Pediatric Neurologist and she said that all they would do just like the Developmental Pediatrician is give Terry his diagnosis. I have him in therapies that they would have him do anyhow.Should I wait or try to get another doctor. This one is highly recommended that is why there is such a wait. Does this sound right? Also,
Terry also has alot of bowel problems. He will move his bowels sometimes 15 to 20 times a day. Most of the time a little only comes out and it's runny. We told this doctor that we don't have a diagnosis for Terry yet.But he told us it is very common for children with developmental problems to also have this. He has Terry on Miralax and now he's gonna start taking milk of magnesia with it to try to make more productive bowel movements instead of a little at a time.It seems to me that some kind of tests would have been ran instead of just a physical exam to prescribe a treatment. But this doctor is so sure that his disorder is causing this. Does this sound right? I feel like everything is out of control. This is all new to us and I feel so frustrated and inadequate.I am trying to find out all I can on PDD's. I hope you have advice to share and thankyou for your time.

Sincerely,
Kim

Hi!! Welcome to the group. You really do have a long road ahead of you. I have not been going through this as long as some of the other parents here, but I have some experience. Forst, let me introduce you to my son. His name is Ryan, he is 4 years old, and he is PDD-NOS. You are already ahead of the game in my opinion. It took me a year to accept the fact that my son was autistic. I spent my time trying to prove that he wasn't.
The second thing I want to do is give you some very good advice. Your doctors are not always right. You are the only one who knows your child. They spend fifteen minutes with them and then they forget him. Doctors are in the business of "practicing" medicine. I love my pediatrician and my pediatric neurologist. They have been very supportive of my decisions. They do not have a choice. I am the final decision maker, not them. I pay them. I do a lot of research on line and listen to the parents of autistic children more than my doctors. Trust me when I tell you, parents of children with autism often know so much more than doctors.
As for the bowel movement issues. My son had 4-5 bowel movements a day. It was horrible. They smelled bad and were never solid. Always runny. Almost always coming out of his diaper. When I put Ryan on the GFCF diet, it cleared right up. He now has one bowel movement a day and is potty trained. Since your child has no diagnosis yet, I would take him to a GI doctor and find out what they think. DO NOT tell them his developmental background. It is not normal for a child to go to the bathroom that much. It is a medical condition. It is a problem.
As for the neurologist, my answer to the question of whether or not your son should go is absolutly. Some children with the diagnosis of autism, PDD, asperger's, ext. actually are having very mild seizures. My neurologist sent Ryan for an MRI and EEG. He also sent blood for genetis disorders such as Fragile X. My neurologist has not found any way to help Ryan. He has found some interesting results in Ryan's blood work though. If you decide to go this route, get a copy of everything. You should always get copies of the medical records, blood work, and lab work they do. Don't tkae the word of the doctor. Even they make mistakes. The first neurologist I had wasn't concerned about Ryan's level of CK. I looked it up on the internet and found Ryan's to be high. My old neurologist left Johns Hopkins and Ryan was refered to someone else. He seemed to think it was very important. I am still in the process of finding out why.
They most important thing you can do is educate your self. If you ever need anything, we are always hear. I could go on, but I feel I have rambled enough. You can always email me. Hang in there. If I can help again, please let me know.
Joanne

Hi Kim,

I also think that you are on the right track. My son is seven now, but I could have written your post five years ago. I would try taking him off all dairy products ( soy milk or goats milk ) but nothing made from cows milk. You can see if this makes any difference while your deciding how far you want to go with diatery interventions... dairy allergies are VERY common cause of frequent, runny stools and it is VERY, VERY, common for ASD ( autism spectrum disorder) people to have dairy allergies. I also would add some sugar free citrucil daily ( If you mix it with a little *warm* water it does not get lumpy. you don't have to use much water if your son does not like the tast, a couple of ounces to get it down, and then he can drink plain water) The fiber will help with bulk and the dairy-free helps with frequent stools.
I think that a developmental Ped. is exactly the person to see ( even if you see others in the mean time ) they will make appointments with the appropriate others ie.. Pediatric GI's and Neurologist's as well as medical Genetics ( for ruling out genetic disorders ) They are an excellent place to start if you son has GI and/or muscular involvment.. GREAT pointer from Joanne, ASK FOR COPIES OF EVERYTHING !!! You really have to keep your own records...you will need them again someday, for somone. Educating yourself if THE best thing that you can do for your son. Joanna is sooo right, doctors are not always right ( especially when it comes to ASD, which they actually know so little about.) If your son does have ASD, then a diagnosis is very good. Early education and thearpys can be picked up by the school system starting at three years old ( that's a whole thread by itself). It can be tough getting a diagnosis sometimes, but If your son does have ASD, the sooner the better .
Don't be afraid to get pushy if you have to.... The squeeky wheel gets greased. Best wishes to you, God bless
Julie

Kim,
I just noticed that you were in Toledo, after I sent my post. That is where we first started taking Tyler to the doctors. For all their reputation, did not find good help at Medical College of Ohio. I did hear that their is a very good childrens hospital in Toledo. Riley Childrens Hospital in Indianapolis is EXCELLENT medical care, but their autism clinic stinks. I think it was at the Toledo hospital that we got thearpy ? The University of Toledo has a AWSOME swim thearpy class for kids with special needs ( it was only a nominal charge) plus their library is a great place to do research while your son is swimming. I highly recommend it.
Good Luck
Julie