Re: Re: med decisions/teresa

December 14, 2004

That is an awesome report about and the party. It's days like that that

make it worthwhile. I think of you two often, and pray all is going well for

you. I too do the checklists for Dr. Capone, but they vary so much with Gavin's

moods that it is hard to be accurate. And this medication game does drive you

nuts sometimes. If it were not for the weight gain I would have kept Gavin on

the Risperdal. That took care of most of the sensory issues and OCD behaviors.

Now I have even more sensory issues... like we need more... as well as new OCD

behaviors and tics. Since being off the Risperdal I haven't seen a weight

" decrease " so I'm wondering if his weight wouldn't have plateaued and we would

have been fine. Who knows.

I can relate to what your husband said about the party. You never know what is

going to happen, and allot of times I just plan for the worst scenario. It

wasn't so bad for me before because my sister Traci used to always come along to

everything, and between the two of us we were able to handle any situation. She

recently has gotten a new job that is so demanding and we only get to see her

once a week if we're lucky. Without her I feel like a fish out of water allot of

the time! At 46 years old I question my sanity to what the outside world deems

" normal " .... then I come on here and find out I am just fine!!

It was good to hear from you! I hope you all have a fantastic Christmas!! Take

care.

Re: med decisions/teresa

,

Go with your gut. Do you do the behavioral checklists for Dr.

Capone? I do it prior to each visit, but I should do it whenever we

are changing meds, too.

is followed by a local psychiatrist - but he depends on Dr.

Capone's evaluation reports. I think I give too much information at

times and then the doctors have too much to read to make decisions.

It took several emails, drop off packets and finally grabbing the

psychiatrist as he was walking off the elevator (we work in the same

building) to get the adderall discontinued and a new prescription

(medadate CR) started for impulse control. It's too early to see a

difference and I'm going to bump up the dose next week while I am

home to see how responds.

I HATE this medication roulette game - I do feel ok with depakote

(despite the weight gain) and the adderall helped with the

impulsivity to some degree - but then the weight gained on depakote

came off quickly and the compulsive behaviors increased. Anything

more than 5 mg of adderall brought about numerous tics, too. An

increase in depakote brought about an increase in physical

aggression. For the most part, things are about 50% better - the

structure the school provides helps, too. I didn't see any major

changes with abilify and only small changes with respirdal (

does not have PDD or ASD- but a mood disorder, OCD and ADHD along

with sensory issues (overstimulation). We've also tried strattera

with minimal results (maybe minimal dose??) and SSRI medications are

not recommended by the psychiatrist.

had one of those days on Sunday where everything was good -

he went to a party with me and did very well playing with other

children (as long as no one took away his beanie babies). When it

came time to eat, he chose to sit with the other children and not me -

he did glance over from time to time and did a small wave...lol.

Prior to leaving for this party, my husband kept saying " You'll be

sorry " - I never, ever give up trying because sometimes, like Sunday,

all is well.

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December 15, 2004

I am so relieved to hear of other families out there wrestling with this

medication issue. We just recently took our son (13) off of Ritalin which

he has been on since he was 8. It was never perfect, but seemed to be an

improvement until this year (puberty perhaps?). For whatever reason, all good

behavior went out the window, and Pete was consumed ... literally ... with

wagging a sock on his hand and just watching it while he mumbled stuff over and

over to himself. I'm wondering if this sounds familiar to anyone? Has anyone

seen the autism traits get worse as the child has gotten older? It's heart

breaking to see a boy who was outgoing and social become so withdrawn and angry

most of the time.

Anyway, we couldn't take it anymore, so we took him off of his Ritalin. His

psych. prescribed Welbutrin 150mg and that seemed to help with the OCD stuff a

little, but when he raised it to 300mg, Pete was bouncing off the walls, and

COULD NOT stop vocalizing. This still is a problem, especially in school. Does

this sound familiar to anyone?

Any experience you have had with drugs that seem to have worked would be

welcome. We also have a HUGE weight gain problem ... from skinny as a rail a

year ago, to round as a beach ball, even while he was still on the Ritalin!!??

Thanks for any input!

Bo, mom to Pete

December 15, 2004

Bo

That is what happened to my son. He gained 28 pounds in 10 months on Risperdal

and had to be taken off. Gavin has had a " Woody " doll from " Toy Story " that he

has held and dangled its legs and " stimmed " out on for years. He would make lots

of sounds while doing this too. In the past year and a half the sounds he would

make have now stopped, but he still finds dangly objects to shake in front of

his eyes for long periods of time. When he does this I try to " redirect " him to

something else.

My older son was on Ritalin, but we took him off because of adverse side

effects. He would sit like a zombie for hours. One day he sat and picked his

fingernails until they bled. That was the last we kept him on that drug.

Sometimes it is hard to find the right combination, so that when you do it's

good to keep them on it until you don't get the results you're looking for. Good

luck to you.