Any advice for first Dev. Ped appointment? UPDATE - Page 2

[Thing1Thing2]

The Dr. is through Stonybrook hospital. You prob know where that is, Emmeline. I didn't get to read your thread, but I would like to try and find it.

After arguing with the Dr. for 15 minutes, she finally made known that DS has many ADHD issues and gave us the number to a psychologist. But this was after me breaking down and crying.

When I asked her why she didn't tell us that initially, or refer us to a psych originally, she said that the treatment is the same whether they are diagnosed or not. And she said the treatment is behavior modification. So basically, more discipline is the treatment for ADHD?

She did not do an M-CHAT, but with much compelling by me - looked at his school evaluation forms. She said - Oh he passed the ADOS. He's fine - and that was that! She didn't read the page where it says "he passes the intellectual part of the ADOS, but did not do well on the Social part."

I just wonder how long it is going to take to get DS help.

[Thing1Thing2]

And heres what the results of the M-CHAT score that I just took online were:

My son isn't a toddler anymore (he will be 4 in June), but the results do place him at risk.

 

M-CHAT (Modified Checklist for Autism in Toddlers)

M-CHAT Risk Score: 6

This score suggests that your toddler may be at elevated risk for a developmental disorder such as autism. Importantly, most children identified as “at risk” by the M-CHAT do not go on to develop autism. This score simply indicates higher than average risk. It warrants an “M-CHAT Follow-up Interview” conducted by your child's pediatrician or other specialist.

For resources in your area, see our website's list of Autism Treatment Network clinics and state-by-state Resource Guide. You can also call or email our Autism Response Team: 888-AUTISM2 (288-4762); [e-mail].

This questionnaire is designed to screen for autism, not other developmental issues. If you have concerns about any area of your child's development or behavior, please discuss these concerns with your child's doctor.

[Emmeline II]

Originally Posted by Thing1Thing2 

The Dr. is through Stonybrook hospital. You prob know where that is, Emmeline. I didn't get to read your thread, but I would like to try and find it.

After arguing with the Dr. for 15 minutes, she finally made known that DS has many ADHD issues and gave us the number to a psychologist. But this was after me breaking down and crying.

When I asked her why she didn't tell us that initially, or refer us to a psych originally, she said that the treatment is the same whether they are diagnosed or not. And she said the treatment is behavior modification. So basically, more discipline is the treatment for ADHD?

She did not do an M-CHAT, but with much compelling by me - looked at his school evaluation forms. She said - Oh he passed the ADOS. He's fine - and that was that! She didn't read the page where it says "he passes the intellectual part of the ADOS, but did not do well on the Social part."

I just wonder how long it is going to take to get DS help.

Yes, I know StonyBrook; I grew-up nearby--I sooo miss the beach ...and the trees.

I posted that bit for the "this is what an evaluation entails" part, though I should have added that the M-CHAT wasn't for his age group. I would have expected the DP to conduct an evaluation similar to what you had through the school; you wanted a new/separate evaluation, not an opinion on the old one (that was just for reference). A DP of 40 years should understand that in six months a young child can change a lot or their abilities/behavior may increasingly deviate from the norm and become more apparent.

It can be very difficult to get appropriate help on the mild end of the spectrum. I don't agree with the "it doesn't matter what you call it the treatment's the same" attitude; the symptoms of SPD, ASD, and ADHD may overlap but the causes can be different. For ex: with ADHD social issues are more related to developmental immaturity and impulse control -- so they are capable (eventually) but are unable to currently "perform" (immaturity) and/or will be able to perform when they are chemically balanced (medication). Wheras with Asperger's it's more of a social "blindness" and they're not likely to acquire social skills as typical children do--by "osmosis." My ds has all that going on; maturity and medication have helped the ADHD symptoms but he still needs a lot more help on social reciprocity and pragmatics (which is attributed to the Asperger's).

You can proceed the best you can on your own with the information you have; as he ages his symtoms will likely become more apparent as the range of "normal" narrows. Ds' DP told us that we didn't need the diagnosis (which was borderline for Aspger's) to use therapies we thought would be helpful to ds. It seems like OT for the sensory and ST for pragmatics may be the most useful right now. I'm not a particular fan of psychologists for ADHD and Asperger's; they usually aren't helpful in providing useful therapies for these diagnoses, and can't prescribe medication if necessary.

Legislation & Policy | LD OnLine

NY State Agencies

NY Department of Education-SpEd

I think I mentioned "From Emotions to Advocacy awhile back; if you haven't started on it yet I think now would be a good time to do your "master file: at least writing the dates on the bottom right in pencil (of all evalations, medical reports, etc.) and sticking them in date order in a binder (that's not too overwhelming ); if you're feeling ambitious you could also start an index in a simple word table with the date and document title in it.

I'd also consider posting "The recommendation they gave was to enroll him into an integrated NT/ special ed preschool at least 2 days a week. They think he will do well there." issue on Wrightslaw's parent hotline blog. The school district is required to provide FAPE (free and appropriate education), if they are recommending a special ed preschool then they should be paying for it. I have a thread to send you from another forum that is many pages of discussion of SpEd services in Suffolk districts which may offer something useful--maybe you can get a lead on a more competent DP.

One of yours:What happened at your pediatric neurologist evaluation? possible DX

One of mine: http://www.mothering.com/community/t/1252302/going-to-the-child-psychiatrist-tomorrow

[Thing1Thing2]

Yes, it sure is beautiful this time of year.

And I agree that she should have done more of an evaluation. I kind of went in there expecting it. Boy was I in for a shock. DS's behavior has changed alot in the last 6 months. Apparently he has picked up more ADHD traits that are overshadowing our original concerns of ASD. But the ASD traits are still there. For goodness sake - DS started vocalizing "Baouw Baouw Baouw" fairly loudly while she was speaking to us. I can't believe that wouldn't raise any red flags. Yes, maybe she does need to retire - lol!

Reading about your son's experience, I can see how things are interwoven. For me, this is confusing. With sleep deprivation lately, I don't have much of a brain for trying to figure out which of his problems are related to Asp. and which are related to ADHD. I think he may be more like your son where there is a little of both on the social end. I feel that he has problems relating to and reading other children (ASP), and in frustration, this makes him more likely to approach them aggressively. (ADHD)

Not sure I understand this : I'd also consider posting "The recommendation they gave was to enroll him into an integrated NT/ special ed preschool at least 2 days a week. They think he will do well there." issue on Wrightslaw's parent hotline blog.

Thank you for the wealth of info - as usual!

[Smithie]

I am so, so sorry. Do not give up. All that work you did to prepare for the visit WILL be appreciated when you get in with a decent dev ped or neuropsych.

I got my recommendation for our dev ped from the local agency that handles therapies for disabled children under 5. There is some place near you that fulfills the same function (often affiliated with the hospital system). They will know the name of the best dev ped in the region. 

[FarmerBeth]

I am so sorry you are having such a rough time with this evaluator.  I had difficulty with the first pediatrician we had evaluate my son (she assumed it his behavior was caused by my husband, as the stay at home Dad, being a poor parent but never met him).  I went back to the GP about it and she decided we were best to go straight to a child psychiatrist, as he didn't have any delays that weren't social.  For us it worked, even though we didn't get to the diagnoses we now have right away.  At least he was getting more thorough evaluations and access to treatment for anxiety, obsessive behavior and social skills.  Don't settle for less, keep trying for another developmental pediatrician, hopefully with a whole collaborative team, and if that doesn't work, psychiatry can be a good bet as at least they are MDs and can diagnose and prescribe if necessary.  In our location, both Tourette's and ASD can go through the mental health intake if a GP deems it appropriate.  It might get you past the over focusing on the cognitive end of things.
 

[andromedajulie]

I am so sorry for you. I have been following this post because we are also waiting... and my DD presents as though there's not much wrong but behavioral problems, too. So I have worried about this. Of course, all children, especially ones who are not being understood and helped, have behavioral problems, but if you know in your gut as his mother that it's not right, don't let go. That is what I am telling myself. I am so sorry for your wait and all the money. Don't give up. Maybe someone here can recommend someone who would be worth traveling to? Big hugs, mama. You will find that person.

[Thing1Thing2]

Thank you everyone for the comments. I have found another Dev. Pediatrician who came recommended to me by an acquaintance who's son was recently diagnosed. This Dr. is within a different health care system and I was told she did a very thorough evaluation on the child. The appointment is a surprisingly short wait! So June 1st is the day! I plan on getting all the info to her ahead of time - the videos and previous evaluations... the list and so on.

Farmer Beth, if this Dr. doesn't help us I think I will go with your advice to seek out a Psychiatrist next.

I'll update you all after the appointment!

[SpottedFoxx]

Awesome news!