saw the dev ped today...

iVillage Member
Registered: 03-31-2003
saw the dev ped today...
5
Tue, 11-08-2005 - 3:35pm

After waiting 6 months, we had our appointment with a developmental pediatrician this morning. Sylvie's already getting services -- she attends a special ed preschool and receives OT and ST, and will probably be approved for PT soon as well -- but we wanted a dx so that a) we could clarify for ourselves exactly what was going on, and b) perhaps we could be referred to other services, find out if there's anything else we should be doing, etc. I suppose that, given our reasons for seeing the pediatrician, we got out of it everything we'd hoped to. The appointment was MUCH shorter than I had expected it to be... we were in and out of there in under an hour. Plus they neglected to send us the paperwork ahead of time (even though I called THREE TIMES) so quite a bit of time during the appointment was taken up with the pediatrician taking Sylvia's history right there in the office, asking me questions, etc. The eval itself was more of a physical exam than I thought it would be -- he didn't really spend any time watching her play, and the exam itself was in a regular "doctor's office," with no toys or anything. He did ask her some questions, and I think he was satisfied very quickly that she didn't have autism (he told me, without equivocation, "She's definitely not autistic.") -- because she looked directly at him, was able to answer his questions, etc.

He said that PDD-NOS would be a reasonable dx for Sylvia, which is what we'd expected to hear. He also said that he wouldn't recommend medications for her at this point, since she doesn't have any truly disruptive behaviors. So, basically, we're doing the right things for her already, in terms of her school and services. He did recommend that, when she gets older (she's not yet 4 now) we think about signing her up for social skills classes, which I agree will be a necessity.

He did suggest that we get an MRI of her brain... Sylvia was born with a hemangioma on her nose; a hemangioma is a birthmark that can grow and swell -- Sylvia's nose was pretty deformed by the time she was 4 months old, and she had to take a course of Prednisone as well as undergo repeated bouts of laser therapy in order to shrink it down. The birthmark is still a bit visible, but not if you're not really looking for it. But the doctor said that there's a possiblity that she has another hemangioma IN HER BRAIN!!! But basically, even if that were the case (or if there were another structural anomaly in her brain) it wouldn't affect her prognosis and it wouldn't affect her treatment. So DH and I feel that, if there's nothing in it for Sylvia, why put her through the MRI? So I think we'll opt out of that -- it seems an extreme measure to take when the only possible benefit is that we'll be able to say, "Oh, so that's why she is the way she is."

So, Sylvia is absolutely exhausted, I'M absolutely exhausted, and I can't believe it's only Tuesday... But I'm relieved we made it through with no major surprises. I suppose that this dx doesn't really make a huge difference in our lives, since she's already getting the services she needs, but it might come in handy in the future. Plus we were given names and phone numbers of people who can put us in contact with parent support group, services in our area, etc. And, perhaps worth the entire price of admission, a pamphlet on potty training the ASD child!!! Whoo hoo!!! ;-)

Wish I could grab myself a bottle of wine and some leftover Halloween candy right now... But the kids have already woken up from their naps... Guess the wine and chocolate will have to wait until later this evening. *sigh*

Jennifer

iVillage Member
Registered: 03-26-2003
Wed, 11-09-2005 - 1:35pm

Hi Jennifer,

Sending out some quick hugs. I remember diagnosis day so well. You are doing better than I was. Even though I expected it I was still in shock. It took awhile to realize to totally realize how much shock. I guess up to that point I knew there was ASD going on, but since it wasn't official I could still have a little denial. I guess what I hoped for was a thorough evaluation then a "No worries, Mrs. B, you are nights s/he is fine". Not what I got, oh well.

Have that wine and chocolates tonight. You will need them. Take care of yourself for the next few days. Even if you were expecting it, I have found that it is still a bit of a shock to the system to finally be an "official" member of the club no one wants to join. But hey, it is a pretty cool club with lots of neat, wonderful people.

Renee

Photobucket
iVillage Member
Registered: 03-31-2003
Wed, 11-09-2005 - 2:08pm

Thanks so much, Renee... I did kind of lose it last night. I think I had to hold it together during the day since I was home with the kids, but after they went to bed things hit me hard. The wine and chocolate helped -- as did a big cry.

The thing that kind of annoys me, now that I've had a day to think about it, is that I thought the appointment would be a way for me to really learn about Sylvia's strengths and weaknesses, how to address them, etc. But all this guy wanted to focus on was probable causes for her PDD. (Besides requesting the MRI, he asked lots of genetics-type questions, drilled me about things I might have done while pregnant, etc.) I have to say that I don't waste much time wondering why Sylvia is the way she is -- I'm more interested in helping her. The doctor pretty much relied on the information from Sylvia's ST and OT evaluations done through the school district, and everything he had to tell me about her strengths and weaknesses was gleaned from the reports from those previous evaluations. So I basically didn't learn anything new (other than the pamphlet on potty training) -- I just left there with the label of PDD-NOS. My MIL, who works at the hospital where we saw the dev ped, said that lots of times these doctors are woking on their own research projects, and when they order tests it's less for the patient's benefit than it is for their own research. So maybe that's what was going on, I don't know. I guess the good thing is that I learned that the school district's evaluation was very thorough and accurate, and that her teacher and therapists are doing all the right things for her in school. So I guess it's good that I can trust them -- I was just kind of hoping for a "team leader," I guess...

iVillage Member
Registered: 03-26-2003
Wed, 11-09-2005 - 2:50pm

jenny,

i think the dev ped you saw is pretty new here. dr. sulkes is another one, but is better versed in ADD. dr. hyman is the one who is highly regarded for autism diagnosis. she spent alot of time observing both boys when they were diagnosed. she also did cognitive tests, etc. she did not push too far for a reason, but did offer genetic testing. she offered her opinion on what program, ABA or DIR, would be best for them.

i might be tempted to get a second opinion. dr. hyman or dr. yost (child psych) are great and i left knowing that they did a good job. i have had a disagreement with dr. hyman, but that was not for an eval, and i think she is top notch at what diagnosing.

just for peace of mind that someone did a full eval of your child and the dignosis is correct...just my thoughts...

v

~Valerie
iVillage Member
Registered: 03-31-2003
Wed, 11-09-2005 - 3:13pm

So what's *really* annoying about this is that Sylvia had originally had an appointment with Dr. Hyman, scheduled for December. But I got a call around a month ago informing me that they'd double-booked the appointment, and would I mind rescheduling. Since they were willing to take me in November rather than December, I said sure. But now I'm wishing we'd seen Dr. Hyman instead. For now, I don't want to put Sylvia through anything else... She's been such a champ through all of these evals, but you can see it's starting to wear her down, all these visits to doctors/evaluators. I feel at this point as though she's getting the services she needs, and that the dx fits her, so there's nothing huge pushing me to get another eval right now. But I would definitely consider it for the future, since like I said I don't think Dr. Liptak told me anything I didn't already know.

I guess it was naive of me, too, to think that this one doctor would be able to provide me with all the "answers," right?

iVillage Member
Registered: 03-26-2003
Wed, 11-09-2005 - 4:02pm

HI again,

Well, you can always wait and keep in the back of your mind another eval down the road. If you feel the school distict has done a complete one and you have a good grasp of her strengths and needs AND she is making progress in her current program, then you may want to keep it at that.

I have rarely found a good "team leader" and honestly, honey, you are the team leader. When Cait was little I did find a neurologist who I respected her oppinions highly. I did have to get a 2nd oppinion to get her but she really did help guide me in the beginning. Currently we have a pscyhologist that my go to person for all of us. Mike's teacher is his team leader but the therapist knows the whole family, the dynamic and autism. I respect her oppinions highly.

Is there someone in your current group who you feel has the best handle on the situation? With Mike I think it is his teacher and it is her I run by all the stuff. If not, maybe you will want to see about seeing one of those others so you will have that go to person.

Me and my husband are the team leaders, but it is nice to have that one objective outside oppinion that I really value. Keeps my head screwed on straight

Renee

Photobucket