Need expanded dx--who do I take her too?

[Mayzoo]

My 5 yr old daughter was dx by her neurosurgeon has having autism h/f, but he did not pursue any other testing other than clinical observation and talking with us. I took the online exam (yeah I know--not really accurate) from childbrain.com. My daughter scored a 158.

Now the question--who do I take her to for the further testing--a child pyschiatrist, a pediatric neurologist or someone else entirely? She has seen a pyschiatrist and neurologist many times in the past (years ago).

Thanks for any replies--I want to take her where she can get the best eval.

[LIZARD]

Wow...I wish I knew the answer to this! :( The more I see of kids who have both autism and ACM, the more I wanna scream at anyone in the med field to find the dang connection and help us!

The only thing I can suggest (and I should do this, too) is to see a team of specialists, including (but not limited to) a ped neuro, a ped nsg, a ped OT, and a ped psych. You'd also want to be sure to find a nsg who is well-versed in ACM, because not all of them are. (ASAP might know...?? I think I'll head over there and ask, too. www.ASAP.org.

Good luck with this, and please let me know what you find out. I think more of us are in this boat than any of us realize. :(


LIZARD :)

P.S. I re-read this and realized you said her nsg dx'ed the autism. What info was he able to give you? How long ago was it? Has she ever been eval'ed by any other professionals?

[Mayzoo]

Dr. Frim is her NSG. He dx'd her in Nov. She saw a pedi pyschiatrist 2 years ago, and Neurologist about 6mo ago. The dx from pyschiatrist at age 3 was "autistic tendencies", and the Neurologist was an idiot, so I don't his dx to much....but he said she basically has tantrums and her behavior was not even related to pain :eek: . but again he was an idiot---she used to about once a week scream for up to 8 hours and bang her head in pain until she literally passed out from exhaustion.....that to him was a temper tantrum, not pain. And yes, she had already been dx'd with ACM and AC at that time. He was a pain management neurologist too :mad: .

[snapdragon928]

What are these diagnosis?

[Mayzoo]

ACM=Arnold chiari malformation=(very basic answer) part of the brain distends into the spinal column

AC=Arachnoid Cyst=cyst in the brain

[tgrimes]

Well I guess this is going to sound like a silly question, but with three diagnosis already why would you want more?

[LIZARD]

AC=Arachnoid Cyst=cyst in the brain

Whoa...did I miss this??!! Does she have hydrocephalus, too? That could acct for some of the autistic-like behavior. Many of us (yeah, me, too :o ) exhibited behaviors similar to autism as young kids (i.e. sensory issues, obsessive fixations). Time helps, as it did with me, but sensory OT can help, too. (I wish I'd had some! :( )


LIZARD :)

[Isabelle]

any problem with brain dysfunction sudden agonizing pain with SIB..check with a gastroenterologist. Rule out first any problems in the intestines. If the guts is not absorbing, processing nutrients you have seizures, ADHD, autistic like behaviours, and a host of all problems, also look at metabolic, mytochondrial disorders, parasites infestation, vitamins, enzymes deficiencies