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Special Needs
Dev Pedi Appt -- still no official label
We just finished having Z evaluated by a dev pedi. It involved a parental interview as well as eval/testing of Z. He also reviewed all of his medical records, school testing, and treatment notes, and had his school teacher fill out a questionnaire. Bottom line -- Zach displays some characteristics/behaviors of autism/PDD-NOS, and has some other characteristics/behaviors that are inconsistent with a diagnosis of autism/PDD-NOS. He agreed with the apraxia diagnosis, and noted the motor planning/sensory issues, but was not comfortable with giving him a PDD-NOS diagnosis at this point. He's going to write up a report noting the issues, behaviors, and strengths, and we have to see him again in 6 months. I mentioned Dr. Coplan's book and his chart with autism "borderland", and he agreed that is probably where Z is right now.
I was preparing myself for PDD-NOS. Now I'm a little frustrated to still be in the diagnosis neverland. He did say that we are doing all the right things for therapy, though, and gave us some recommendations for potty training and other behavior issues.
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Re: Dev Pedi Appt -- still no official label
I know that feeling. You'd never wish a DX on your child, but at the same time you would like to know what exactly is going on. We live in DX neverland and there is a good chance it is a permanent stay. Some docs lean one way, some lean the other. I just try to frame it positively-- that means there are no limitations on DS because no-one can assume he will or won't do anything.
Hugs to you.
This. I was hoping to get some answers at our BIG 6 month appt, and nothing. Some days its easier than others to accept it.
Our UCLA dev pedi refused to dx DS twice (at 2 1/2 and again at 3 years old), even after she had had him in her 4-month EI program that she was overseeing. So, she had a ton of data on him to form a pretty solid opinion.
DS didn't get his ASD dx until the school district child psych observed him for school purposes.
Yes, it's very frustrating when you have your child seen by multiple professionals and it always seems like a 50/50 chance. It's like - take your pick, parents!
FWIW, our pedi and dev pedi said no way it's ASD, the district psych and the regional ctr child psych both said yes it is.
We're in diagnosis neverland as well! DD1 has "signs of autism" but not autism according to the dev. pediatrician. He's thought about pdd-nos but is now leaning towards adhd, which we don't really agree with. She also has apraxia and sensory integration disorder.
We just saw genetics last week and they want to run a microarray to test for genetic issues that could explain the signs of autism thing but we're waiting for insurance to approve.
Good luck!
That sounds just like DS. The doc did mention the possibility of a microarray showing something. The big catch is that, according to him, while the medical community considers it the standard of care, insurance companies don't and often won't cover it.
Quite a few kids with Apraxia also SID, so it isn't totally uncommon. I do think that she has something more serious going on. As an infant she had a seziure disorder and she also has a congential birth defect regarding her tooth enamel (ameliogenesis imperfecta) so we feel that no one kid can be that unlucky without some overriding umbrella.
Is he hyperflexible? Lydia just got this one thrown on while also having hypotonia. My thought was "Great, kid has poor muscle tone and her joints are much too easily flexed/popped. Whoo-hoo! Now I know why she can't walk 20 feet without falling down!"
Oh, and she's extremely farsighted. Because she needed one more thing to make her different!
Actually, he did comment on his flexibility (called him a little gymnast on that front). And he has low tone to boot, which may explain why he spends most of his time lying on the floor. I didn't think much of the flexibility thing at the time, because I myself am hyper-flexible (I once had an ortho tell me I am in the top 1% of all people he has ever seen in terms of flexibility).
My nephew has the enamel issue, as well as autistic behaviors and other things (palate issues, dual eyelids, fused fingers) all attributed to a spontaneous genetic mutation (ODDD). Z's teeth are fine and they do no suspect a similar syndrome.