Doctor surveys
Moms View Message Board: Parenting Children with Special Needs: Doctor surveys
So out of curiosity, what type of doctors have you been to? How did you get your diagnosis?
My son doesn't officially have a diagnosis, mainly because we've never really looked. He is normal in so many ways, the quirks just didn't bother us. Well now they are catching up to us, he needs help and the school isn't really providing as much as they should. So I made an appt with my ped to discuss my baby.
I simply said, you know we've been at this since he was 2, but now his quirks are affecting our lives more and more. So medically, how do we find out what is wrong with our boy, IF there is sometime diagnosable.
SOOO I have an appointment in a little over a week with a Biological Geneticist. Sounds cool to me, I have no idea what he will do, or if he will look at me like I have 3 heads. Anyway, this is where we are starting.
Where did you start?
Kaye, I highly recommend a developmental pediatrician (a pediatrician who specializes in learning disabilities and other "special needs") or a pediatric neurologist. I have sent several kids to a geneticist before and it is amazing at how many kids who look like they have a syndrome, but the doctor can't come up with a definitive diagnosis. (I have had several kids get a dx too though). Developmental peds are sometimes hard to find. We only have 1 in BR and she does not have a good bedside manner, but there should be some in the Houston area. That's where I would suggest starting.
I question the biological geneticist, too. I'm not sure what you're looking for, but I don't understand why a geneticist would be your first diagnostic step.
I would start with, as Pam says, a developmental pediatrician, or a pediatric pschologist/ psychiatrist. I'd find them either through your own pediatrician, or through a medical school or one of the major hospitals in the Houston area.
We went to a neuro psychologist for a full evaluation when John was 5 and a half. I (test can be done on much younger child he said) We had a developmental evaulation by a psychologist when ds was two too.
Neuropsychologist can do brain mapping also and see if child has pdd or aspergers... I am not sure about adhd or add... too... Seems people with aspergers or pdd or austim have a specific pattern in the brain that can be identified with brain mapping. Weakness in certain areas..... Brain mapping requires no sedation and is painless. electodes on brain hooked up to computer to measure or something like that .
Neuro psychologist also have a treatment that has scientific studies. It is like biofeedback. (Like 4-6 months twice a week computer biofeedback in office.) Helps brain... No idea. It should be covered by your insurance. Treats different things...
I called for a neurologist at schneiders hospital and they said that was for very sick kids like kids with seizures. So again we didn't see a neurologist. Not sure what they do... I took ds to a neurologist when John was two years old and he wanted to give ds sedation and give him a test to measure brain stem. (We didn't do it) I don't even know what that means... measure brain stem.
Children's hospitals have developmental pediatricians and neurologist and developmental psychologist that your insurance pays for covers. Double check if they take your insurance. Else tests cost $2000 dolllars or more. Yikes..
This time it was four days of testing like iq and other tests.... Nothing was wrong. Everyone is different like a garden of flowers. Kids grow out of this stuff. He is even growing out of the speech therapy now. Psychologist at school said most kids grow out of needing ot and speech by beginning of first grade except for articulation problems or if a child has very serious problems. I had no idea about this. Maybe I wouldn't have worried so much if I knew that. Maybe I would have worried more... who knows...
I specifically asked my insurance company that I wanted ds tested for aspergers. They gave me like 10 names to call to see if they did the full testing.( We found out he doesn't have it. He has a totally differnt brain.)
This is a explanation of the neurobiofeedback.
http://www.eegspectrum.com/IntroToNeuro/
We started with our regular pediatrician. Luckily, she was pretty familiar with autism since her nurse has a son with autism that she treats. She referred us to an audiologist as a screening process and then sent us to the nearest regional center. They did a full evaluation with a child psychologist, speech pathologist, two ABA therapists, and we were offered genetic testing. We turned down the genetic testing (we can take them up on it at anytime) because his autism won't show up in genetics anyway and DH and I are done having children. We didn't pursue any of the brainscans or heavy metal testing because he was responding so well to the therapy we'd chosen for him.
I'm afraid I'm not much help at all, Kaye. We've just been incredibly blessed and lucky to have everything fall into place. I really hope that you're able to get some kind of consensus. Even if it doesn't change how you cope with your ds, having some kind of conclusion made a huge difference in how I accepted my ds.
Your ped would have made that referral probably because of some physical characteristics, or perhaps some mannerisms that are consistent with something genetic or chromosomal. One of my kids was diagnosed that way, because there would be no other way to make a diagnosis of that type.
Another one of my kids should see a genetecist, and possibly did as an infant, but I have no parental DNA to compare to. I don't think that's absolutely necessary, but it would be helpful when trying to figure out the likelihood of it being passed down to her own kids.
A couple of my kids have been seen by pediatric neurologists, and he's my favourite doctor. Three of them go to him for yearly follow-ups - one for migraines, 2 for behaviour, and Sonja went to him for seizures.
I would go to the genetic counselling meeting if it's what your ped. recommended. I'm sure he/she had a good reason to start there.
I am not sure why we started there, but I am going to go. My entire family has several autoimmune disorders and so I know that is part of it. We have already been to psychiatrist, psychologist and done all the school testing. They claim he isn't adhd, autistic, or dyslexic, but he has several tendencies of each of these it wouldn't take much to swing it the other way. I need to find a pic to post of him. I don't think he has any syndrome look to him. He is a small guy though, and defintely looks young for his age, so who knows?!?!
I took my son to a developmental pedi for ADHD eval and to a private LD school for the dyslexia eval. The developmental pedi closed her practice so meds are maintained by the regular pedi now. I'm thinking about a brain scan at the Amen Clinic though. That would be cool. I have never heard of the kind of doctor you're going to, but it sounds interesting.
We have been to LOTS of drs!  Here's the list:
1) We started with psychologists. (MANY) Most were terrible and led us down the path of "it's our parenting." When that started, we would find a new one.
2) I tried the pediatrician, too. He told me he'd "grow out of it." HA!
3) pediatric neurologist was next. There we got dx of Tourette's, ADHD and possible OCD.
4) psychologist (who we still see). She confirmed the Tourette's, ADHD, OCD and aslo dx with Generalized Anxiety disorder (that is now "downgraded to anxiety) and depression (he was suicidal). She has recently added PDD-NOS.
5) child psychiatrist (after the suicidal ideation).
6) report from the Yale Child Study Center (Tourette's/OCD Specialty clinic)
7) school reports (they stink in comparison!)
8) The latest is the school is hiring an autism expert to figure out the PDD-NOS piece. Either Fred Volkmar from Yale Child Study or Dr. Greenstein. They are also hiring someone to do a functional behavioral assessment.
Oh- we also did OT for awhile as well in Kindergarten.
Like I said, LOTS of doctors!
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