Hi there, my 26month old son has been diagnosed with GDD, but we believe that he actually may have either PDD or PDD-NOS. He has been to a neurologist, had an MRI (came back fine), BAER Hearing Test (normal), has had metabolic testing (all normal), has been evaluated by 2 Developmental Pediatricians and both say GDD but he is completely delayed across the board. He has also been diagnosed as a Sensory Child. We have issues with gross, fine, speech, etc. and everyone says he is a question child. A friend of mine, her son is a year old than mine and has the same exact issues and was diagnosed with PDD-NOS. She also lives in another state. I do receive services for my son every day. He has a Speech Therapist, OT, PT, EIA & Special Education Teacher. Can someone please give me any other ideas as to where I should go, do, etc.
We also just had our first appointment with a genetics doctor & at this time she is holding off on ordering any blood work until she receives all of the copies regarding the metabolic work up. She's looking for something particular. Has to do with cholesterol(?)
Any ideas, help, etc. would be greatly appreciated. Thank you soo much in advance.
Will the therapies differ between having a different diagnosis? Sounds like they at least know what his delays are, and that he has sensory issues. And it's not like you couldn't get a third opinion, but personally if it was my son, I'd wait a little while like another year or so before getting another doctor, unless having a diagnosis of PDD at the present time means you get more services. If your insurance will cover a doctor visit in another state, could you take your son to your friend's state if it isn't too far away? Won't a diagnosis of global development delay get your son into a developmental preschool or additional therapy after he turns 3 anyways? Did you address your concerns of PDD with the doctors? Sometimes I find that if you talk to them (try to be nonconfrontational), they will address your issues and explain why they thought it was GDD instead of PDD or maybe they think it is too early to give a diagnosis of PDD or not as obvious a case, so GDD is better? I am just throwing out suggestions here, so take what you want to hear and leave the rest. You are your son's best advocate, which you probably already know, and getting the doctors to listen to you and what your gut instinct is telling you is important. Sometimes it is right. Sometimes the doctors are right. Sometimes they don't know and it takes time to observe how things are exactly and it might take another year or two. My husband's boss has an autistic son. He was diagnosed at age 5. They knew he had delays when he was younger, but it wasn't obvious enough, that they waited for a diagnosis until he was older. He still was able to take advantage of therapies and developmental preschool. I guess ABA (applied behavioral ... some other A word) would be available as a therapy if he was diagnosed with autism. I am not sure what it is yet, only that I'm on a year wait list for my daughter for it.
Having a PDD diagnosis would yes, get us more services. We are actually going to be going into the school system at 3, but we are unsure at this time what "room" they believe he should go in to. We are attempting to us ABA at home, but because he does not always like to give us that eye contact it's difficult. My niece who is thirteen was diagnosed at 2yrs and she is non-verbal. The doctors say my son has "autistic traits" but not enough to fall under the umbrella. And we have even asked them if that meant no to PDD, PDD-NOS and the developmental pedi said correct. Our PCP for Ryan was shocked that he didn't receive any diagnosis yet. We go back to our neurologist & developmental pedi in June so we are hoping they may have some more answers for us. Hubby & I have been throwing around the idea of going out of state to Boston Children's which is were my friends son was diagnosed, but as of right now, insurance is being a pain in the butt. Our Birth to 3 group is planning on doing another M-Chat along with another evaluation because of the new Autism Program that is starting up in April '08. Figure it doesn't hurt to see what they say.
Thank you so much for your info. It helped me to see if I may have missed anything we are doing. I'll keep ya updated.
We've already had the testing for Downs Syndrome (negative), Fragile X (also negative). I know I don't want to "rush" into a diagnosis. It just truly sucks that we're in a limbo due to not having any diagnosis besides GDD. We've been doing therapy since 11 months.
How true regarding the school system. They go by the "educational relm" of things. That is why we don't know what program at this time he will benefit from.
It is just sooo frustrating. We have made some very small improvement with therapy which I am soo thankful for. I just wish we knew what was making Ryan "tick" so we could get a better handle on things.
Thanks for the info. Again, I truly appreciate everyones thoughts on this matter.
Bear in mind, the school uses the IDEA definition of autism whichnis more general and not as specific as a psychology definition. Whatever "room" or "program" he is in, the plan should be taylored for his INDIVIDUAL needs. The "program" he is in, by federal law must meet his individual needs... You as parents have a say in it. That's what an IEP is for.
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