Any advice for first Dev. Ped appointment? UPDATE

[Thing1Thing2]

We suspect my DS (who will be 4 in June) has Aspergers. We have our first appointment with the developmental pediatrician on Wednesday. Just wondering what you brought or mentioned to your Dev. ped on your first visit. Also what sort of things can we expect that would make it a "good" visit?

We waited almost 9 months for this visit and I want to make sure we get the most out of it for DS.

Edited by Thing1Thing2 - 5/9/12 at 6:26pm

[SpottedFoxx]

I'd write up a list of the reasons you suspect aspergher's syndrome.  Behaviors exhibited - even positive ones like if your child read at an incredibly young age or is talented in sports.  Write up your child's medical history now so you don't forget something.  Also, if your child is biological - write details of your pregnancy (full term vs. early, vaginal birth, pre-natal care, etc.).  Then write up a list of questions for the doctor  such as....

1.  Based on your observations and what I've told you, what therapies would you recommend.

2.  Are there any nutritional supplements or dietary changes you'd recommend.

3.  Is there any support systems you'd recommend in the school setting.

4.  Does the doc know of any support you can receive from the state or local.  Sometimes, they doctors know about some really cool programs for kids with special needs.

5.  Is it possible that there is a genetic component.  If so, would he/she consider ordering a micro array to rule in/out that possibility (make sure your insurance covers it as they are incredibly expensive - ours was $3k).

6.  Can he/she recommend a therapist for family counseling.  I've found this was the best question we ever asked.  Parenting our son is not what we expected and with the help of a behavioral therapist, we have been able to change our parenting style to better help our son be successful.

Good luck!  I hope you get the answers you need.

[Thing1Thing2]

Ooh thanks spotted fox. I especially agree with the family counseling.

[Thing1Thing2]

Spotted fox, do you think we should expect a diagnosis from the appointment? Just wondering if anyone got thier DX at the first visit? Sorry, but Im clueless!

[SpottedFoxx]

The first time we saw a developmental pediatrician we were given a tentative diagnosis because my son presents as being on the spectrum when you first meet him and then, after about 15-20 minutes, you realize that he may not be on the spectrum (we only recently ruled it out - after seeing a DP from the time he was 3.5 till 6.5).  

Depending on how your son presents and if it's obvious or if they want to do, say ADOS (comprehensive autism screening) testing they may say he's "at risk" or showing characteristics of something.

[goobergrl6]

Our first visit we did not get a dx. We were told to go get a neuropsychological eval. We sat and talked with his asst ( I think she was an intern or something) for a little over an hour. Then she went and talked to him for a bit then they both came in. He talked to ma about what William might have and why but told us how he really seems like he fits in a bunch of different boxes and not just one so that is why he wanted us to get the neuropsych eval. I would also bring any videos of things your child might do like vocal ticks, flapping, whatever you notice in him that has made you think he might have aspergers. 

[Thing1Thing2]

Thanks - I do have videos of him flapping, vocal stimming, banging, laughing very loudly. I was going to bring them but they are so long and Im not sure she will get the right idea from them. Alot of times when he flaps or bangs his body into something it's because I did something to upset him such as not let him be in control of everything - or not play the way he wants me to.  Wow - that sound so silly to me having typed it out! But its a fear of mine to be judged as a bad parent because I cant keep my child happy.

Thanks again for the advice. I think I will edit out the parts where he is triggered and just show the stimming and such.

Spotted fox, unlike your child, my DS does not present as autistic at first glance. In new places he is like a little professor. Greeting everyone. Saying "my pleasure" or "glad to have helped" and such things. But once he starts getting bored or in need of attention all the autistic behavior comes out. So I am glad to find out that the appointment will most likely be a long one.

[FarmerBeth]

I'd also make sure to have info and observations from any other adults in his life (school, daycare, sports, etc) and ask if there are any other professionals he or she feels it may be good for you to be referred to to help make the evaluation more clear.  Our developmental ped used a lot of info from the OT and a developmental psychologist and didn't make a final decision until all the info was in.
 

[fizgig]

I think everyone has great advice.  I think the key is to make sure you have everything written down so you don't forget.  Write down all the concerns, questions, issues, etc.  I would also try to write down your own observations about your DS (include the things that you are worried about as well as things he is good at, make you perhaps doubt that dx). 

I think showing some key videos are REALLY important since your DS will most likely not display all his behaviors during an eval.  You should totally not worry about the dev ped judging your parenting!  I had similar worries and the dev ped we saw actually talked to me a lot about the need to challenge our DS and encourage him to meet me half way sometimes even if he fussed out about it. 

The evaluation with our son happened over 4 different meetings and the doctor wouldn't venture a tentative dx until she had a chance to think things over and look at all her notes to write up her report for us.  Our DS was a confusing case and she actually asked us to come in an extra time so she could watch him play with me more. 

I hope you have a good experience and get some answers!

[Linda on the move]

Originally Posted by SpottedFoxx 

I'd write up a list of the reasons you suspect aspergher's syndrome.  Behaviors exhibited -  .

I did this and the doctor LOVED it. I tried to keep it to one page. At the top I put her name and birthday. Then I grouped things by topic -- motor issues, social issues, etc. In each section I made a bullet  list.

I steered away from saying that I thought my child's dx should be, and instead focused on what I observed, *why* I was concerned. For example, I didn't say I think my kids has Asperger's, but instead said things like "I'm very concerned because she becomes overwhelmed by things that aren't stressful for other kids her age, and then acts out in unusual ways, such as banging her head into a wall over and over."

There are a zillion different labels, and some we are all more familiar with because they are more common. But it's quite possible that what ever is going on with your child is something less well known.   My DD has had evals at different ages with different results. At her first eval (age 3) they listed her delays and added "autism like behaviors."  We went for therapies related to the specific delays. She was eventually diagnosed with PDD-NOS, and later with Asperger's.

I feel like getting an eval is like taking a picture. It shows where your child is now compared certain benchmarks and a guess as to what that means. It would be nice if it told you more -- like what it means for their future. But an evaluation is no better at that than a photo of your child right now tells you what they will look like as an adult.

Good luck.

[Cyllya]

Originally Posted by Linda on the move 

I steered away from saying that I thought my child's dx should be, and instead focused on what I observed, *why* I was concerned. For example, I didn't say I think my kids has Asperger's, but instead said things like "I'm very concerned because she becomes overwhelmed by things that aren't stressful for other kids her age, and then acts out in unusual ways, such as banging her head into a wall over and over."

Yeah, this is a good idea. It seems like some doctors stop taking you seriously as soon as you mention the name of a condition.

[Thing1Thing2]

Thank you everyone. Farmer Beth, I don't have any others who can testify to his behavior - but I do have his school district evaluation. Do you think I should bring that?

I will be working on the list tomorrow morning before we go. We had written down a huge long list,but it's not grouped in categories yet. Great idea Linda!

[Eloisa]

I don't have any advice to offer, other than echoing what others have said (particularly about steering away from saying 'I think my child has x').
But I just wanted to say that I hope it al goes smoothly, and that it sheds some new light on your situation.

[SpottedFoxx]

Originally Posted by Thing1Thing2 

Thank you everyone. Farmer Beth, I don't have any others who can testify to his behavior - but I do have his school district evaluation. Do you think I should bring that?

I will be working on the list tomorrow morning before we go. We had written down a huge long list,but it's not grouped in categories yet. Great idea Linda!

Bring everything you have - medical reports, school reports, the videos (don't edit - they may want to see it from start to finish).  Even well child visit reports if you have them (don't go out of your way to get them, they can request them from your pediatrician.  

Better you give them too much than not enough.  

[Thing1Thing2]

Ok - thanks Farmer Beth! I'm getting everything together right now. The appointment is at 1 - so nervous! I'll keep you all updated!

[SpottedFoxx]

Good Luck!

[Thing1Thing2]

We had our visit and I am so disappointed. We waited almost 9 months for this visit and all we got (initially) was that DS's problems were discipline problems!

Yes, the stimming and vocal stimming is because he wants attention. The reason he screams when we try to wash his hair is because no child likes getting their hair washed and "there are two of us and one of him, we should hold him down and force him to wash his hair". He should be forced to sit for 3 minutes and "yelled and and roughly placed down on the chair even if it hurts him a little" or be locked in his room for 3 minutes if he can't control himself. Oh and also this is our first child so we don't know how to discipline him.

I am so upset I've been crying all day. I can't believe I sat here for 3 hours this morning putting together lists and videos and then we walk in and she doesn't even look at them before deciding that we are just bad parents. Then when I tried to argue this point, she says "Well, let's see you only get an hour and I've been here with you for an hour and 15 minutes". Oh and of course - "I've been a developmental ped for 40 years, so I know better than you".

Why is every doctor visit I go to just like this? Why can't I get a doctor who cares? Is it just a New York thing? Ugggh I am so disgusted right now. I'm disgusted because somewhere deep down inside of me, I always wonder if we should be harder on him. But I just can't let him cry like that. This is so confusing for me.

[Bokonon]

OMG, how awful!  I'm so sorry you had that experience.  

I hope you find someone with compassion soon who will give you some answers!

[Emmeline II]

Is this doctor in private practice or through a hospital? If the latter, perhaps you could complain to the hospital specifically that you did not receive the services you paid for.

As I've said too many times, a good evaluator will listen to your concerns, be eager to read your notes, appreciative of video, and patiently explain their opinion--in detail and in writing along with (at minimum) the names and results of the appropriate evaluations. It's time for this doctor to retire.

I don't know if you happened to read my post about my ds, but he had some extreme behavior problems in school (and unbelievable public and home tantrums), sensory issues, and pragmatics problems--his school basically told me that since he's smart and doesn't have a speech problem that he's fine; the family therapist pushed us to wait to step up to a psychiatrist. Ds was later diagnosed with severe ADHD by a psychiatrist and possible Asperger's by the hospital (his current school classifies him as Autistic for his IEP).

These evaluations should include hearing and lead exposure tests as well as an autism-specific screening tool such as the M-CHAT. Among these screening tools are several geared to older children and/or specific autism spectrum disorders.

http://www.autismspeaks.org/what-autism/diagnosis

[SpottedFoxx]

OMG I am so very very sorry!  Please don't give up!  If this was private practice and he's a sole practitioner then let it go and find another one.  If he's in a group or hospital - get the administrator on the phone and raise holy hell and demand another appointment with a doctor who actually practices medicine instead of judging a parent.   I am so angry for you right now I could spit nails!