Neurologist? | Autism PDD

I am the father of an almost 4 year old son who was dx with PDD-NOS at 22 months.  He was in the Early Intervention Program and has been in a special ed pre-school class for the last year.  There has been some marginal improvements but he still is almost completely non-verbal, no imaginative play, doesn't point, doesn't really greet me when I come home, no understanding of concepts(birthdays, Christmas), limited diet, hand flapping, luckily no tantrums or sleeping problems.

Since the special ed programs don't seem to helping as much as it seems to with other PDD kids, I am wondering where else to turn.  It's amazing to me that with something so serious you don't bring him to a doctor for the problem.  Does anyone bring their child to a neurologist on a regular basis for their child's PDD?  Is there any reason to?

Thank you,

Father of Matthew (3 1/2 PDD-NOS)

 

 

 

 

in my experience, the neurologist was a complete waste of time. i got a referral for "a really great pediatric neurologist!" ha, what a joke.

the first sign of how bad it was going to be was when the receptionist called me to set up an appointment. i answered the phone and she asked to speak to "C's mother" so i said "this is her mother." and she said "no, honey. can i talk to her mother? is that your mommy too?" and i tried to explain to her that I WAS THE MOTHER, but she didnt believe me! she said i sounded like a young child. i know i look and sound young, but i didnt think i sounded THAT young!

anyways, i took my daughter in for the appointment. the neurologist would not look me in the eye. she asked for family medical history. when i tried to explain it to her, she kept cutting me off mid-sentence. i couldnt even finish it because she wouldnt let me. she had the attitude like i had no idea what on earth i was talking about.

then she told me to strip my daughter down to nothing but her diaper. she was around 19 months at the time. she made me put her on a table, and had her play with some blocks. then she sat and watched my daughter for about two minutes. so my poor baby was sitting on a table, naked, playing with blocks. i was so confused as to what this was going to prove! after that was over, she told me to get her dressed, then said, without looking me in the eye, "well i guess if you say she's autistic, then she must be. you can leave now." and walked out of the office. that was it! no conversation, no explanation, no help, nothing.

all in all, it was a waste of time and gasoline driving all the way to that stupid clinic. maybe if i had gotten a referral to a GOOD neurologist, i might have a different opinion.

but i do know that a lot of parents in my area have taken their children to neurologists at the Children's Hospital and have had good experiences. unfortunately, i couldnt get a referral for Children's.
Our neurologist just did a lot of tests to rule out everything else, so we would know for sure if it was autism. They ruled out seizures, hearing loss, and other things. Once we ruled out everything else, that was it. It was at a Children's hospital. I don't know what a neurologist  is SUPPOSED to do for autism, but that is what ours did.

And Sunny, I get the same thing on the phone all the time. It stinks.

our neurologist is fantastic. he is a ped neurol. and he did quite extensive testing w/ my son. initially, he was being treated for adhd, and said that it might be more complicated than just adhd, but that it was the lesser of the evils, so we began treating that first. after 7 months of maintainence with the pediatric specialist, we needed 2 go back 2 the neurol. to investigate autism, per the peds suggestion.  the ped wanted the neurol. second opinion on the autism. between the 7 months, my son had a sleep study, found 2 have sleep apnea, had a ent specialist and tonsils and adenoids removed, and went through all of the initial iep exams.  i feel that the ped did not want to label or trap my son in a glass box of autism, without being reassured by the neurologist. i appreciate that. my son will continue to have check ups with the neurol once a year, and is maintained by the pediatrician, for meds and normal health checks.

kate

 

Hi all,

First off, welcome to the board.  My son who is 26 months was dx autistic in June.  We just started ABA at home 10hrs per week and I have seen a dramatic improvement.  We are moving him to a center based program in 3 weeks but from all that I have read, ABA is really great.  Within the first week of therapy, we started signing with all the therapist.  Really simple things like "give me", "more", "up" and "ball".  Considering he had no language whatsoever, this was remarkable.  I would find out if the school has ABA.  If not, find a school that does.  If you find a school that caters to Autism, ABA is normally mandatory throughout the day.

 

Tamika

 

We took our son to a nuerologist and all he did was look over the paperwork that our ST sent with us, talked to jacob for about 5 minutes and then said, yup he is autistic... uh DUH! we Knew that already..

We had been told the nuerologist would do more then just talk to us and jacob and might even be able to tell us if everything was caused by injury or not (which i assumed involved him having an MRI done) we were Very disappointed in the whole visit.. he didnt tell us anymore then what we have been told by our ST and have read online, and i really dont think he was in tune with any of the latest information etc.. we want to do the childrens hospital thing out here but the wait list is 6+ months so it will be awhile

hey sets, first of all welcome to the board. my son sees a neruo doc for a seizure disorder and his cp with diplgia. but they were able to help me get him in to see a great physc doc. so that he will get therapy that he needs that the schhol won't give him. so i don't think it would hurt any. take care mom2carloMy son, too, doesn't understand birthdays or Christmas.  He never opens up his presents ... it's really sad. As you said, breaks our hearts to see.

Anyway, your son getting any other therapy in addition to the preschool?  Have you continued with speech and OT privately?  They may help a bit, as well as involving him in things like Kindermusik or a social skills class with his peers (all of which must be paid out of pocket).

Actually, your son sounds very much like mine with the autistic signs he shows.  No tantrums or sleeping problems, like yours, but hand flapping, minimal greeting, etc.  We are trying to initiate ABA in the coming months (this area has no good resources for it, unfortunately, so it's like trying to reinvent the wheel getting tutors, etc.).  I'm hoping ABA will be able to teach him how to learn and appropriate ways to interact.  It seems almost all his therapists employ play-based learning and they've helped a little, but not a whole lot.  (Then again, we've only had the diagnosis for 3 mos.)

Good luck.
Kellie

In my experience and that of my friends with kids on the spectrum it isn't the specialty as much as it the person.  See if you can find out among local parents who they have found helpful and whether it sounds like that dr. is a good fit for you and Matthew.  I finally found a ped who has a son with Asperger's and a psychiatrist for meds who doesn't work with that population very much (that's just the way his practice developed--he's young) but that was his training and he is fabulous.  We travel 3 hours to see him and I'm in a big city with lots of other choices but I want him for my Paul. 

The specialty is secondary to whether they "get it" and are up on the latest developments.

Good Luck.  You are not alone!!

We took our son 4yrs and PPD-NOS to a neurologist. He did a MRI and found out that our son has delayed myelination in the brain.

We are waiting for the  blood work to come back that can tell if he has a enzyme defiency that can cause this. He said he is about a 10% chance he will have that.

Other than that...there is not much that he said to us. Just that we should she a ped. bahaviorist to help us somewhat be able to control him we he gets out of control like he was the day we went to the appt. He also said we have  50% chance of ever finding out what is truely wrong with him and why he is this way.

My son sounds alot like your. He also has no idea what birthdays and Christmas are (breaks our hearts)

He just started today back at pk (developmentally delay class room) we too have not seen results, that we were hoping to see with that. We are in the process of trying to get him tested with the school system to see if they will put him in the ASD program they offer at another school.

So...with that said..No I don't think the neurologist was that big of a help.

 

Kelly

 

Hi Matthew's Dad,

I take my sons (14-Autistic & 8-ADHD) to a Ped Neurologist and I have to say he
and his staff are definitely angels on earth.  I just went to an appointment last week with my son and by the time I left I was feeling wonderful about my son's (oldest) progress. 

I remember back when my 14-year was doing a lot of the things you and some of the other parents mention at the toddler age.  I thought things would always be that way, but because of the wonderful school system, and support I receive from our neurologist my son has made some tremendous leaps and bounds.  To most it may not seem like a lot, but when you have a son who at the age of 4 didn't make eye contact, would not give you a hug (but would hug other mothers), only grunted and pointed when he wanted something or was upset, to a young man who over the last couple of years makes eye contact with you when he wants something, came up and gave me a hug the other day (doesn't do it often, but when he does it's a special treat), when I ask him a yes or no question instead of his grunt (that means "no") he looks me in the eye and says "no". 

My husband and I have noticed some wonderful changes over the years.  I pray that you too will see those changes come.  I know it's hard but there were times I kept looking for the big changes like my son to walk in the kitchen one day and say "Hey Mom, can we go to McDonalds", but instead he says "Donalds" or "Burger King" I take those small steps and celebrate over them and they keep coming.

I don't think it would hurt to see a ped neurologist it just might end up being a good appointment. 

God Bless!

you know, another thing to consider is that SSI, and other agencies will not give funding (IMO, what i have found) unless, you have a neurologist dxsis. B/c the dx is so on the rise lately, so many agencies are wanting proof that everything else has been ruled out as possible dxsis.....just something to consider if you hope to get SSI or Medicaid for the addition programs.

hth

kate

 

Hi there!  We see a great pediatric neurologist about every 6 months.  She is very nice and helpful because her words can usually sway the school to do what I want them to do! LOL  I think a dx and follow ups with the neuro are important.  She did blood work and took a urine sample to rule out other possibilities.  She also did EEGs as well.  Our pediatrician just ignored our questions so I told him up front:  I WANT A REFFERAL NOW!"  So far so good...

Rachelle

I've been working very hard with Zach to see what results we are getting.  Parents are the first advocate for their children so if we don't help with treatment and services nothing get's done. 

I have had a wonderful peds. neuro. doc. for my children for years.  She has my dd's epilepsy under control now for 22 mo. !!!  wooo hoooo Zach's autism though is a whole different story.  There is no magic pill, no easy route, no short cut to a cure.  I work every day with my son talking to him, playing with him, repeating things over and over to see a little progress.  Figureing out triggers and how to cope with melt downs, I'm not giving up though.  I did notice that when we went a couple of weeks without servcies because of circumstances Zachary regressed almost imediately.  With weekly services ST & OT he at least keeps information better and continues to use it.  Add's a new word or skill here and there.  It's not like turning on a light switch there is no instand gratification with therapy.  My suggestion is for you to video tape your son, often, then in a few mo. go back and start re watching them.  Look for changes and improvements in not only speech, but behavior, and comprehension.  That will help you tailor his therapy's to his needs. 

WELL, WE live in the suburbs and when my son was dx'd in MAY03 we got the papers sayin what next to do,.one recomendation was get a appt. with   a pediatric nuero. so I asked his peds. and they gave me a ref. to ST.CHRIS'S hosp.for child..in philadelphi,pa.Well the first time we went in Christian was just learnin to speak n very frustrated bein in a small room.He broke the EAR CHECK THINGY OFF THE WALL WHERE it was attached...oh well they need to see what n why a child like this is doing so its good when they have a EPISODE ..but was there 4hours..wahhhhhhhhhhh...saw mostly residents who couldnt speak english..rrrrrrr...then BIGWIG NUERO..CAME IN my son kicked,spit, n tried biting him my god he was PISSED.LOL..but he was right to the point and read all info. prior n from the residents..before comin into the room..he was concerned b/c Christian ran for them n only did toewalkin n runnin,n had a small head..that was a concern for them n confirmed the AUTISM DX..but ordered frag.x also 24hr. eeg,n genetic tests.LIKE I WOULD HAVE ANOTHER CHILD...Mine is like having 10kids in one.lol..when he was OH ALSO A mri WAS ORDERED..BUT WHEN HE FOUND THE SEIZURES in feb04, he did wanna rule out other stuff.,but then I really loved this nuero..and he is the chief nuero. at this hosp.I hated his bedside manners but the last few times down there HE WAS GREAT!!!! LAST aug. he recommended seein a child.pyschiatrist for the ODD and wat meds to ask about, risperdal,so im thankful to this dr. nuero, for helping my son and me.any school issues hes right there writing a letter to them no questions asked.His nurse whose his side partner always returns my calls bout the seizures n so on..we just were there yesterday n they upped his meds. for seizures b/c hes still showin signs of it w/the depakote..so if you want a second opinion and more intense help call around or check with a childrens hosp..ALSO, THIS NUERO.N HIS WHOLE TEAM ARE FAMILIAR WITH my sons pysch. b/c his speciality is AUTISM/PDD-NOS situations..and they all know each other...but its always safe then sorry..if you not like a DOCTOR get a new one...til you find one ...THE RIGHT ONE.I would make a chief complaint to medical board n insurance if ones rude or out of place with patients ..I mean these are supp. to b CHILDREN DRS.they need to b more compassionate n thoughtful with parents.
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