Asperger's...WWYD?
I dont post here nearly as often as I should be but I apologize in advance for the choppy post but it is about as clear as my brain is right now....
Background: DS dx'd with Asperger's, ADHD, OCD and Anxiety and I think dx'd with SPD but maybe not on paper. He currenty takes Vyvanse and Intuniv in the am;s and Melatonin in pm's. He gets APE and OT at school. He also participates in PCIT with me through a private facility.
So......I have another follow up appointment with my DS's psychiatrist this week. We have been seeing her once a month for about 3 or 4 months. So far all she has done is spent the first 30 minutes talking to me about DS's behaviors, improvements and my concerns...then the second 30 minutes she spends with him alone..playing a game or talking etc. Then she gives me the rx for his meds. She has stated that he needs one on one therapy but thinks that we shoould finish our PCIT before adding another therapy on him. OK fine. I tell her that one of my biggest concerns is that he is still chewing his hands and feet. The adjusting of the meds have not improved this one bit. I am also noticing that his behavior is going downhill...now this may be due to us not being in PCIT for the past few weeks due to schedule conflicts. But regardless it will be brought up at his appt.
At our last visit she suggested that we get a Neuropsychological Eval...and had said that she emailed someone at the MIND Institute...but she hadnt heard back and assumed that they contacted me. I told her no...but that I could call DS's pedi and look into one. I have not done so..yet. ( I have been having other issues that have taken my time) She has also stated (as well as her head of her dept) that they are not totally convinced that he has Aspergers.
So my question is....given all the upcoming changes to DXing, testing and treatments out there...what would you ask? I want to fight for my child to get help...and I thought I was doing a good job....but either I am impatiently waiting for results that will take more time than it has been...or not enough is being done.
Please if anyone wants/needs clarifications on anything...please ask
Thank You So Much
Re: Asperger's...WWYD?
Thank you for the response.
DS's dx's came from a neurologist....that we no longer see.
Our history with meds:
Clonidine (rx'd by regular pedi) - Originally given because DS had a hard time falling asleep..as in stayed up til nearly midnight every night. It only worked for a few months then sorta stopped. Also I didnt feel he was getting a "restful" sleep. While he was forced to sleep cause of the meds...he still woke up with dark circles, bags under his eyes and often figited during the night.
Prozac (rx'd by neurologist) No positive changes, in fact one day while chewing his hands he made it bleed and was so upset with himself that he said he wanted to kill himself over it. We stopped that med the next day under doctor's orders.
Risperidal (rx'd by regular pedi) - Given for ADHD. This med made his behavior worse. Also increased chewing.
Concerta (rx'd by regular pedi) This med I believe gave minimal positive changes. No change in chewing
Adderall ( rx'd by regular pedi) This med was off the wall bad behavior.
Vyvanse 30mg (rx'd by regular pedi) This med seemed to work well on the behavior...but we noticed an increase in the chewing again.
At this point I took it upon myself to get an appt with the Psychiatrist. At our 1st appointment I was informed that DS was on too high of a dose of Vyvanse for his size so they lowered it to 20mg. This seemed to still work well for DS but was wearing off about 3pm. DS plays soccer and baseball and we cannot have the bad behaviors during practice and games. The Psychiatrist gave us a rx for Intuniv to be taken at night and she said it would last about 12 hours. This did not make sense to me because I was not having a problem with him during his sleeping hours...I spoke to our pharmacist and he agreed that DS should take it in the morning. I spoke with psychiatrist about this and she said it was fine.
DS is currently on the Vyvanse and Intuniv in the morning and Melatonin at night.
We went to PCIT today and it went well. We have approx 8-12 sessions left before he graduates the program. I do agree that PCIT is to be done at home...and we do. I just dont have an answer for why the behavior is getting worse over the past few weeks. I did speak with the therapist about it...and she said I should check with his Psych or look into a developmental pediatrician...like you suggested.
I honestly just do not know what to say or how to word my thoughts to the Psych when we see her on Thursday. I tend to let my emotions take over and the tears start rolling....I want to be firm in what I am asking..but I dont really know what that is besides...stating...Please Help Me! I dont think the Psych will be able to read between the lines on that one.
Also I do not know how to find a good Dev Pedi in my area....that hopefully takes DS's insurance