New DX...Aspergers

[mom2ck]

Almost a year ago, I thought my son was Aspergers. Then he was dx as PDD by a child psych. This past month a team from the Autism Program has dx my son as Aspergers. It was a great relief to know what I had been thinking for sometime was finally confirmed. It was also nice to get a good explanation of the disorders on the Autism Spectrum and how they are different from Tourette's.

 

I am happy to say the Dr's said we were on the right track with the services he is currently getting at school: speech therapist, social worker, and occupational therapist. They only had a few suggestions for us. They referred us back to our child psych to discuss medication issues and treatments.

 

Today, we saw the child psych and am now searching for meds/treatments again. Son has been on risperdal for the last 9 months. After playing with dosage and the past use of magnesium, he is finally doing well. His temper tantrums have lessened, his sensory issues have improved immensely, and he is doing better in school with completing assigments and starting to play more with other kids. His tics have subsided in the last month. Everything seems great, right? Well they are so much better, but he has gained an enormous amount of weight and continues to gain. In the last year, he has went from 60 lbs. to now 85 lbs. When we first began the medicine, there was little difference. Then the weight started to come on with most of the gain in the last 4-6 months. So, we are looking for another alternative. Dr. first talked about a new med. that hasn't yet been approved for children so therefore the dosage is too great. Dr. recommends Abilify, but it is over $500 for a 1 month supply. So, her only other idea is molindone. But, then she tells me it can cause tardive diskinesia but at the low dose he would be taking it is not likely.

 

I don't like those odds. I can't spend the $ to try Abilify. Clondine caused anger and extreme tiredness. Risperdal caused weight gain. So, what is next? He is finally to a point where he is functioning well and not ticcing. He is experiencing bedwetting and problems with defecating or not making it to the bathroom in time. But, overall he is so much better. Hate to start over again!!! Thinking it may be time to call it quits on the meds but without them he gets very angry easily and concentration is low.

 

I looked into a DAN dr. that is 90 minutes away but found her prices to be very high. However, now wondering if this is the path we should start.

Suggestions?

[faith]

mom2ck,

Is the med for the tics? or other issues as well? How old is your son? I don't know, is 85 lbs. too much for his age? I really don't have any experience with medication, but since you are saying things are finally so much better, I guess you have to weigh the pros and the cons. perhaps the weight gain will taper off at some point, and then maybe you'll be able to control the diet better?

 

Could I ask you re the clonodine, you say it made him have anger and sleepiness? what dose and what time of day did you give it? was anger something new from the med, or he always had that anyway sometimes? what are/were his tics?

 

thanks,

Faith

[CSP]

Hi,

 

I forgot that my son did gain some weight when he was on risperdal, but my son was such a rail that we welcomed the weight. It was not high, just enough to keep his pants up without a belt. He was on it for 7 months.

 

 

 

CP

[mom2ck]

When Cade was on Clonidine, he took it of a night if I remember right and it was a very low dose...smallest they could give him at the time. He had anger issues previously, but during this time, they escalated. He also was falling asleep in the middle of the afternoon which he had never done before.

As for his height, he is overweight now. For his waist, he would be in size 14 jeans. We were able to find 10 Huskies in one style of Old Navy to fit him. His karate clothes I bought in May that were big on him at the time, now 3 months later don't fit. His shirt and pants are too tight to get on. So, yes, the weight gain is a huge issue. He is only 8 years old.

 

Risperdal was to lessen the anger issues and the tics. He continued to tic throughout the time, but it lessened greatly. He has had all kinds of tics. First that we noticed at 5 1/2 was an arm extension, then lip licking, head from side to side, mouth opening, other facial grimaces, eye blinking, smelling fingers, flapping arms, throat clearing, grunting, sniffing, coughing, spitting and possibly punching/kicking (could have been karate moves). Pre-K teachers first noticed a rocking motion when he was 5. About the same time he also went through a 3 month stuttering phase which we now think was a tic as it came and went like all the rest have. He has also had a bowel issue for sometime which some say can be a tic.

 

We have about 10 days of meds left and weaning him off of it. Need to figure out something quickly to not revert backwards.

[faith]

mom2ck,

So you are going to wean off the Risperdal? you think the weight gain is too much? because 85 doesn't sound overweight, I guess it just may be a vast difference from what you are used to. My son is 10 and is about 51 lbs, way too skinny compared to his friends, they are at least 15 lbs more than him and they don't look overweight to me. but I guess if he gained that weight in a matter of months, it may seem like too much. Does he look chubby? or just like many of the other boys in his grade?

 

You said you give the mag taurate....do you use the natural calm magnesium? I always give that, but it doesn't seem to really keep tics down in any dramatic way, but recently I stopped giving it for about 5 days or so to see how it would go tic wise, because my son was saying maybe it was that vitamin that was making him tic more, so I just figured I'd see. I didn't notice anything one way or another re the tics (and we are not doing good these days with a big vocal waxing and still some head movements), but what I did note was that he gave me some 3 year old tantrumy behavior that I havn't seen in a while. could have been just coincidence, but when he didn't get something his way and I threatened some form of punishment, he jumped up and down and cried "no, no", etc. like a two or three year old does. I've seen that in him before, but he is 10, so not recently, altho he could be a real pain, but mostly after I lose my cool. I just thought this was weird that he did this two days in a row, so I figured maybe the Natural Calm magnesium does keep him a little more even tempered in the behavior department, ... so of course I started giving it again, and he hasn't jumped up and down again. just an observation. So why don't you try some of that. Give him the max dose for his weight, and see how it goes. nothing to lose. it really may help with his termperement. ......Anyone else note this type thing?

 

Oh, and the bowel problem, are you familiar with "encopresis"? it sounds like that, you could search it out.

 

Faith

[guy123]

Abilify can cause TD, too.

 

So can Risperdal.

 

What dose of Clonidine was he on? I weigh 150 now and I take 0.025mg per night (1/4 of a 0.1mg pill).

[mom2ck]

I believe he was on .025 if I recall correctly. I would have to look back at his medicals to be sure. I know it was aweful for about 3 or 4 days and I couldn't handle it any longer so I took him off of it.

 

Thanks for the info on Encopresis. I looked at it and think it could be the case. He does have a hard time when he goes to the bathroom. But, then again, I notice when he eats a greasy meal, he usually has to go to the bathroom within minutes. When he gets McDonalds (which is rare), chicken mcnuggets are the worst. Usually before we get out of the restaurant or shortly thereafter he has to go to the bathroom. So, maybe trying a stool softener might help.