Today's Appointment

[katiekat]

I cannot begin to relay how angry, disappointed, frustrated, and fed-up I am right now. I specifically asked when I made this appointment if the doctor would be able to either give Sean or rule out a diagnosis of Aspergers. I was told yes.
However when I flat out asked "does he or does he not have Aspergers?" the answer was "He may, Im pretty sure he does but not 100% certain." Then I asked if he thought he had RAD and he said absolutely not. So he thinks he MAY have Aspergers. Well I think he MAY too and I didnt need to charge anybody $475 to make that guess! He said he will need further testing with another doctor there and also some other tests which I have not even looked at yet because I am so angry. This other doctor will do the testing which I thought we were there for today. Oh, he also said we should send him to some Lego therapy and get him off the Abilify. Fat chance, thats the only thing that gave us positive results so far. My husband did make another appt. to start the testing as I had to walk outside at this point before I had an aneurysm.

[misty]

Lego therapy?? I never heard of that. Geesh, Shannon was an avid lego builder from ages 6-about 12. Maybe that actually helped her. And here I thought she was just having fun!

It stinks that you didn't get a diagnosis yet or all the testing. I think most Drs have an initial appointment that just takes the history & get to know the patient a bit before doing the tests so at least you are on the right track, frustrating as it might be.

Did this Dr seem more willing to see you as a parent? Did you get a good feeling from the Dr at all? You think he's any better than the other one?

[lcdc1]

sorry you are frustrated with this, Some docs are hard to deal with and have a bad bedside manner! Maybe it will be alright,, maybe it won't cost much more money. I think your hubby should ask the doc some questions about it all and see what the plan is. I know as an adult, it takes forever to get a diagnosis, maybe that is good, maybe bad, so many things seem to be sypmtoms of so many spectrums, not even all docs agree on stuff when it has to do with mental health or the brain! Hang in there.

[jill]

For that kind of money hope insurance helps. That is scary when a specialist does not have the answers. I hope it gets better for you and you get the answers you need.

[puzzled]

Chase STILL loves legos, the duplo preschool ones and he will be 12 in July. Everytime I think I can put the dumb things away or sell them or whatever (remember how much those HURT to step on barefooted?), he sits and builds some grand creation with them and I don't have the heart.

[charliegirl]

I was afraid that would happen. Its so easy to misdiagnose that the other testing is necessary. With you, I was hoping they could do it all in one day. Possibly with the question of whether it is aspergers or RAD, they weren't able to schedule it until they had a better idea of what to gear the testing for. Its very probably that there is a difference in the testing they need to do for a definitive diagnosis.

I know its frustrating but remember, you have gone a long way just to get this far and the end is in site. When they get done you can be certain you have the correct diagnosis and can start to move forward.

Since aspergers isn't treated with meds, I think the dr is quite certain Sean has aspergers and that is why he wants him off the abilify. The little bit of difference the abilify is making may cause the testing to be skewed.

You're getting there, KK. Hang on to that. The psych isn't trying to soak you for more money. He really does have a reason for wanting another psych to test Sean. With both of them agreeing it is aspergers and the testing showing that it is plus whether there are any ld's, you can know and you can finally move forward.

(((HUGS)))

[carol]

The Dr might really suspect the Aspberger's because there are some articles online tying together autism to lego therapy.

I am sorry this is such a long process. When the correct answer is found, things can be put in place for him. Hang in there.

[katiekat]

Now that I am not so angry I can give some more details.
The doctor was very nice and did not make an issue of the fact at all that I am not Sean's biological mother. He was very willing to talk to me as if I were. It did not matter to him one bit, so that was good. That is the usual response I have received with the exception of the psychiatrist.
The tests he wants him to have are to first go back to the neuropsych. for further testing. That is scheduled for June 3rd. After that he wants him to have a Routine EEG and also a Digital Analysis, which I have no idea what it is but I will be googling it shortly.
My h was given a paper with a DX on it and for his primary DX it says encephalopathy, which I am confused by because I DID google that and it seems to be brain damage or disease of the brain. The secondary DX is PDD-Asperger.
As far as stopping the meds that will not happen. There is no way I will do that. His behavior in school is so much better and yesterday we went to my friends house and there were 6 other kids there and Sean played with them without hitting anyone! It was a first and truly amazing, he did not even beat up the babies which is his usual M.O. My friend has known him for years and could not believe the difference. I just think that even if he does have Aspergers he also is BP and needs to be medicated for that. Looking at his "mother" I see what unmedicated BP looks like and it's not pretty.
Lego therapy-don't know about that at this point. I am going to look more into it on their website.
I guess I have waited this long, another 6 weeks will not kill me.
Oh, I did get a bit of joy out of today's appt. Sean's school counselor(who I'd like to punch) was thrilled beyond belief when she heard I got him an appt with this Dr. and could not wait to hear what he had to say. She said he is the best in the field. She thinks there is NO WAY Sean has Aspergers and has said this on many occasions. She is also extremely pro-meds. When I told her that her that he said it IS most likely Aspergers she was flabbergasted! And then when I told her what he said about stopping the meds she started huffing and puffing. That was soooo satisfying. The silver lining in my cloud! ;D

[rakuflames]

Apr 21, 2008 21:04:48 GMT -5 katiekat said:

Now that I am not so angry I can give some more details.
The doctor was very nice and did not make an issue of the fact at all that I am not Sean's biological mother. He was very willing to talk to me as if I were. It did not matter to him one bit, so that was good. That is the usual response I have received with the exception of the psychiatrist.
The tests he wants him to have are to first go back to the neuropsych. for further testing. That is scheduled for June 3rd. After that he wants him to have a Routine EEG and also a Digital Analysis, which I have no idea what it is but I will be googling it shortly.
My h was given a paper with a DX on it and for his primary DX it says encephalopathy, which I am confused by because I DID google that and it seems to be brain damage or disease of the brain. The secondary DX is PDD-Asperger.
As far as stopping the meds that will not happen. There is no way I will do that. His behavior in school is so much better and yesterday we went to my friends house and there were 6 other kids there and Sean played with them without hitting anyone! It was a first and truly amazing, he did not even beat up the babies which is his usual M.O. My friend has known him for years and could not believe the difference. I just think that even if he does have Aspergers he also is BP and needs to be medicated for that. Looking at his "mother" I see what unmedicated BP looks like and it's not pretty.
Lego therapy-don't know about that at this point. I am going to look more into it on their website.
I guess I have waited this long, another 6 weeks will not kill me.
Oh, I did get a bit of joy out of today's appt. Sean's school counselor(who I'd like to punch) was thrilled beyond belief when she heard I got him an appt with this Dr. and could not wait to hear what he had to say. She said he is the best in the field. She thinks there is NO WAY Sean has Aspergers and has said this on many occasions. She is also extremely pro-meds. When I told her that her that he said it IS most likely Aspergers she was flabbergasted! And then when I told her what he said about stopping the meds she started huffing and puffing. That was soooo satisfying. The silver lining in my cloud! ;D

Not much worse than a bad school counselor.

I'm so glad you're finally getting some answers.

Have you seen Tony Atwood's book on Asperger's? You should also look at Papalos and Papolos' book, THE BIPOLAR CHILD.

[dimples74]

;D
Chin up. You have to keep going. It is frustrating. I have been doing this for 2 1/2 years and still, there is no definitive diagnosis for Noah. Part of it is age, and part of it is that he has characteristics of Autism, OCD, Touretts and bi-polar. I had to learn to accept that at his age, he is unable to understand his emotions, thus, the diagnosis is irrelevant. You treat the symptoms, not the diagnosis. It took 2 years for that to sink in my pea brain......If you have insurance, check to see what they will help with financially. I know about the deductible thing all too well also..........In NC there is Child Development Services who provide testing and early intervention at no charge or a sliding scale. If money is an issue, call your local health department and see if they have a child advocacy program. They are great at guiding you through things like this. They aren't there just for people who are on public assistance. They are there to help whenever-------at least, once again, that is my experience here.
The more testing they do, the more they can do for Sean. I still go through many days of "What's wrong with my baby?" Face it, he's your child so it doesn't really matter. There are usually things an autistic spectrum child can do that a "normal" child can't. It is interesting when you learn what that is and testing will often identify that. Good luck. Keep us posted!