new to the board

iVillage Member
Registered: 03-25-2008
new to the board
7
Tue, 03-25-2008 - 10:13pm

Hi everyone.

I'm new to the board. I have an 11 yr old Son w/ AS. He was diagnosed around 5-6 but started showing signs of it from the very beginning. We have had an extremely difficult time with him. He has been on lots and lots of meds. You name it, he's probably been on it. Not much has helped. Currently, he's on abilify, topomax, and propanol (8 pills per day). To me this is way to much medication and we haven't noticed a difference. I was wondering if anyone has had any success with detox, cranial sacral therapy, or anything beyond the norm. I am looking for an Asperger's specialist in the Tampa Bay, FL area for therapy.

Our biggest issue with him is his aggression. He is very violent and has attacked me on several occasions. He has tics. He also cannot deal with disruption of routine. He also has no friends because he has such a hard time making any, which breaks my heart. He has all of the normal AS symptoms but these are the most problematic.

Any advice and suggestions are greatly appreciated. If you found something that works for you I'm eager to hear it.

Avatar for betz67
iVillage Member
Registered: 03-26-2003
In reply to: clr1146
Tue, 03-25-2008 - 10:52pm

I just wanted to say Welcome! I don't have any advice, but there are lots of moms here that have experience w/ meds and therapies that work well for their kiddos. Pull up a chair and grab your beverage of choice... I'm passing the warm from the oven fudgie cyber brownies.

My ASD son is 11 and in the 6th grade. He however has never been violent or aggressive. He's just the opposite he retreats within himself and won't come back if he's having a hard time. He has no friends, but really doesn't seek having friends or ask for having someone over. He's pretty happy w/ just his siblings, church youth kids and the few neighborhood kids he plays w/ occasionally.

Betsy

iVillage Member
Registered: 05-16-2006
In reply to: clr1146
Wed, 03-26-2008 - 1:21am

Welcome to our board. My child is almost five with PDD and I'm just in this "world" for two years myself. I don't have experience on that level BUT this is a incredible support/message board and one of these women will be able to help you more that I could.


I just wanted to say hello and welcome. I do the med thing and agree with you about a detox since you are not seeing results. I'm swithching my childs meds and it is a nightmare over here and going back to our Adderall cuz the other stuff is making him and I crazy.


Hope you stick around. This is a great group of gals.


Nora

iVillage Member
Registered: 03-26-2003
In reply to: clr1146
Wed, 03-26-2008 - 11:55am

Welcome,

That sounds too familiar. My son exactly. He is now 12. He became so violent (on lots of meds) at 9 that we nearly had to hospitalize him or put him residential. I was sick of it and the meds by that point. In nearly 5 years we had tried everything.

I took him off all meds, (fired all his docs) changed his diet (no sugar/organic/no addititives), changed his school placement to a more restrictive one (special ed classroom and now a non-public school for kids with special needs), and reduced his outside stress a lot by reducing the demands and activities he did outside school to nearly zero for a time. We took him to a psychologist that specialized in autism and play skills who was wonderful and we also tried music therapy which also was wonderful for him. He definitely has a love of music.

And lots of trial and error on other things. (incredible 5 point scale, head phones, sensory stuff, etc) And it worked.

As friends who have been with us through it all know we have been very very blessed. He is still autistic but he is sooooooo much better. I haven't had to restrain him in over 2 years. I haven't been hit in over a year and that last one was kind of a weird out of the norm occurance. Since about 3 years ago when we made all those changes I can count on one hand the number of times he has been restrained or so aggressive that it is dangerous.

He still has a problem with self control that can come out in yelling but he is really trying very very hard. Mostly we just accepted that he needed some major modifications in life combined with the fact that medications seemed to hurt him more than help. That they weren't the answer for him or going to "fix" him. We had to accept him as is (autism wise) and focus on how we could make him functional.

Anyway, that is my story. I think I shall post a recent picture here of me with this son. I also have a daughter with AS but her behaviors were never to his level at all.

My son is now a lead in a play put on by a local theater group. He is in youth group and going on a retreat with them. He is a green belt in karate and very good at it. And mostly he is happy and a son I am proud to be around and take out (who also tends to flap).

http://img.photobucket.com/albums/v714/FMichaels/100_0245.jpg

Disney08

APOV on Autism
Photobucket
iVillage Member
Registered: 06-25-2003
In reply to: clr1146
Wed, 03-26-2008 - 5:37pm

Hello and welcome to the board. I am glad you posted.

I am Paula, My kids are both on or near the Spectrum. Peter is 9½ and Siobhan (DD) is almost 8. We have been lucky thus far in that we have not needed to medicate either kid. Pete was very behavioral when younger but a small Special Ed environment and lots of OT helped him through the worst of it. I also think he just plain outgrew some of his problems. We have been very lucky.

I read your story and wow! That is a lot of medication for a child to be taking. I do agree that if medication isn't working, there is no point in taking it. However I think he may need to be weaned off some of these meds and indeed things may get worse before they get better if there are any withdrawal symptoms. He may need close medical supervision through all of this.

Do you have a doctor you can trust to go though this process with you?

Also stick around, there are some other moms who have been through a lot of the medication "stuff" so they may chime in with some ideas.

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-25-2008
In reply to: clr1146
Wed, 03-26-2008 - 8:37pm

Thank you all for your messages. It is comforting to know I'm not alone in this. I can certainly sympathize with those of you having issues with the meds. I feel like Dylan (my Son) has been used as a guinea pig for years. He's been on soooo many different meds. In fact, at one point his Dr. told me that we had pretty much tried everything and now all we could do is adjust the dosage. It seems like even when a medication seems to be making a little difference, the side effects out way the benefits. I am looking into hyperbaric oxygen therapy, detox, biocranial therapy, and the gfcf diet. The problem I am facing is that my insurance doesn't cover any of those therapies. And because Dylan won't stray from routine he won't try any new foods. It has to be the same thing day in and day out. He knows if you switch the brand too.

Also, my son has had tics since he was 3. His Dr. had been prescribing meds for yrs to control them. At our last visit he asked me "who diagnosed him with tics"? I thought he had to be kidding. Then he tells me that Dylan has habits not tics. My son will jerk his head from side to side, snap his fingers, and then make a sound with his mouth. His neck is constantly sore from doing this. Am I wrong in assuming that this is a tic?

iVillage Member
Registered: 11-15-2006
In reply to: clr1146
Wed, 04-02-2008 - 11:22pm

I am so sorry for what you are going through. We are dealing with the exact same thing with my soon to be 9 year old DD.

- Christina mom to-

Chloe (10)    Aiden(8)   

iVillage Member
Registered: 11-28-2006
In reply to: clr1146
Sat, 04-05-2008 - 12:50am

Hi and Welcome!


I understand about the meds.