Sunday, July 24, 2005

Medication update

As many of you know, several months ago we made the difficult decision that it was time to try medication for Bud. As we have moved through this maze of trial and error I've been combing the blogs looking for some stories of actual people with actual children with ASD and their actual experiences with these medications. There is very little out there. So, for the sake of those who will someday google their way into this blog, here is a run-down of our experiences so far.

Our first trial was with Ritalin - first 5 mg, then 7.5 mg, then 10 mg. It had no effect whatsoever.

Next we tried Adderall - again a steady increase from 5 to 7.5 to 10. Adderall was a mixed bag. We saw great results - much less scripted language and more conversational language, greater focus, more pretend play. But the negative effects were significant: agitation and constant chatter or humming (not scripted language, but definitely not normal), sleeplessness, a major "crash" when the medication wore off - uncharacteristic temper and tears, accompanied by hitting his head (a behavior we hadn't seen in a long time), heightened anxiety, and loss of appetite. He also looked terrible - pale, drawn, with dark circles under his eyes. It was clearly not working.

Our most recent trial has been with a combination of 7.5 mg of Adderall and 10 mg of Strattera. Bud's doctor said it would take about two weeks to see the effects of Strattera. We saw them on day 1. Bud has been focused, calm, and engaged. On day 1, he participated in the group movement games at school - something they'd never seen before. They said that he usually looks like he's not paying attention to them and they had no idea that he'd been learning the songs and movements all along. He's using a lot less scripted language and much more conversational language. He's less obsessive about tv and computer time and is focused on pretend play. He's sleeping well and his appetite is back. And he looks like himself again - robust and healthy. We're feeling very optimistic.

Here's something I couldn't find on blogs, though I searched high and low: just how does one administer medication to a child with a limited diet whose sensory integration issues make texture and color of paramount importance? Here's what we did:

Ritalin: Ritalin comes in a white pill that can be crushed. Mixing it with ice cream was not successful, because the ice cream was too smooth to mask the powder. As Bud said "It's seeds. I want regular." Mixing it with applesauce worked well.

Adderall: Adderall comes in blue pills that can be crushed. However, it turns applesauce blue which was not acceptable. ("I want regular.") Adderall powder, however, dissolves (no seeds) so it can be mixed into juice. It also dissolves into yogurt, turning Rockin' Raspberry from a dark pink to a light purple, which was acceptable.

Strattera: Strattera only comes in capsules, which cannot be opened. This fact sent me into a panic, but as it turns out this has been the easiest medication to administer. I created a sticker chart with a big pay-off: 5 stickers yields the Boobah video he's been wanting for ages and I've been refusing to buy. Each time he takes his medication he gets one sticker. I put the capsule in jello, and he washes it down with juice. Easy way to earn a Boobah movie. (We're now on sticker chart 2: 9 doses earns a Teletubbies book. I find the sticker charts work best when the pay-off is something he knows he's not going to get any other way.) One other important step in the process: we practiced with mini M&M's before we moved up to the actual capsules. First I gave him a couple of M&M's to eat, to remind him that he liked them. Then he got to earn his first sticker by swallowing the M&M in jello without chewing. Once he mastered that, we moved on to the capsule. It worked like a charm.

There's our story. I'm still interested in hearing other people's experiences with medication, so if you've got a story to tell, please comment away!

14 comments:

Kristina Chew said...

Charlie has been taking Zoloft since April 2003 (as much as 50 mg and now 25 mg). Since March 5 (there's a reason for my remembering the date), he's been on Risperdal (.25mg and then .375mg in the past few weeks). We started the Zoloft because of head-banging which had gotten extremely bad (occuring as much as 20+ times in one day). Zoloft was prescribed for anxiety, which was one chief cause of the SIB. It helped--plus more language, happy spirits, more focus--but the side effect was bed-wetting. We switched to Paxil which was a disaster--terrible stomach problems (the memorable ones occurring in transit in our car). Then we tried Prozac which upped Charlie's aggressiveness (as in biting). We said the effect of "uncle" and went back to Zoloft (by now it was late August) and have stuck with it ever since.
In December 2004 we tried Ritalin to help with focus and attention. It helped with those but also made Charlie terribly tense and skittish, plus he developed eye-blinking and scrunching up his face behaviors. And the tenseness started to increase his SIB. So we went off that after a few weeks at the end of December.
The head-banging got very bad in February-March--Charlie basically had a big regression and that is why we started Risperdal. It has helped immensely--again, we see more focus, more calmness, more alertess. Most of all, Charlie's SIB had been accompanied by minimum 30 minute tantrums that had seizure-like features. On Risperdal, the tantrums usually only last 5-10 minutes.
The side-effect of the Risperdal is weight gain, and Charlie definitely has more of a stomach than he ever has--I've heard of kids gaining 30 pounds (that would mean Charlie would weight as much as me, almost). We make sure Charlie gets at least one long bout of exercise--swimming, biking, walking--and that he has a lot of vegetables and fruits in his diet (he's not one for candy, as it is). And, because of the Zoloft, he still is incontinent at night but getting him up is a small, small price when what you're getting under control is head-banging (which we're also addressing through behavioral teaching).
Thanks for sharing about Bud's medication--someday I may write more eloquently about all this.
kc

Anonymous said...

A mortar and pestle is a must for crushing pills and not losing the med to the inside of the bowl.For us a splash of warm liquid usually means an easy dissolve- we use juice, gatorade etc, with syringes.
I have also used chocolate syrup( it really helps mask the texture) my doc recommended it.CHeck and see if you have a compounding pharmacy where you live.Ask other pharmacys or look online you can use out of state ones with insurance sometimes. My daughter takes seizure medicine I had compounded into a flavored suspension formula ( grape) works awesome! We also do supplements I had compounded into an oral suspension flavor...Hope this helps. enjoy your blog. www.specialneedsmom.com

MOM-NOS said...

This is all great information! Incidentally, I looked into compounding when I was panicking about Strattera. There has not been any reliable testing done with Strattera in any form other than the capsule, so although the flavoring company has a recipe for flavored liquid Strattera, the pharmaceutical company that makes Strattera recommends against it. Incidentally, more info on compounding is available at http://www.flavorx.com.

Moi ;) said...

Bug takes Strattera. He's up to 40 mg, we had gone as high as 60 mg but it made him dizzy. Evidently kids on the spectrum really don't need as high a dosage as kids with, say, ADD.

I am not surprised you didn't have results with Ritalin. Doctors think for some reason our kids have ADD. @@ They don't. And the attention issues our kids have don't come from the same place as the ADD kids, so why should the meds be the same?

Have you tried masking the capsule in applesauce? We taught him how to swallow pills IN the applesauce. If you can do that, it's your best bet!!! I mean, these kids swallow a chicken nugget whole, ya know?! LOL good luck....

Moi ;) said...

OK, DUH, Jello, LOL. Same thing! Can you put the Adderall in the jello, too? Or is the pill too big?

Kim Howell said...

After much searching and family stress in trying to get Strattera into my 8 year old son who has a feeding disorder and ADHD, I have found an alternative solution. He can't swallow a pill and eats only an extremely limited selection of foods. (Only two of his foods are possibilities for putting medication in.) Since Strattera is extremely bitter when opened, I pretty much couldn't disguise it enough to get it past him in any food. At the 25mg and 40mg dosages, I could sort of hide it, but we absolutely could not get 60mg into him in any food! It seemed that he was tolerating the medicine well and been having more good days at school so I was extremely dissapointed that our program was being derailed because we couldn't get the medication into him. The pharmacy we use said they couldn't make it a flavored liquid unless it was already in that form from the manufacturer. So I found a compounding pharmacy and discussed my problem with them. At first they said they could make it into a liquid and I asked could they make it into a patch because I didn't have much hope in any flavoring being able to disguise the bitter taste. The compounding pharmacy lab then said they had made it into a transdermal gel for some of their clients. I immediately felt a renewed since of hope! My son is currently on 60 mg transdermally. He has been on it for over a year and a half and we are convinced we are seeing much improvement in his behavior. Our compounding pharmacy also makes the mood stabilizer Valproic Acid he takes in conjunction with Strattera into a suppository since we couldn't get that in him by oral routes either. So for you parents out there that need an alternative form of this medication, a transdermal gel might be the answer. This is a new frontier as far as the transdermal delivery of this particular medication as not much information is out there on it.
And I think, of course the maker of Strattera is going only say what has been tried and tested for them. However, since my son has been on it transdermally for a while now, I can say it works for him in this form. (We had to step him down off of it twice due to having general anesthetic procedures and boy, could we tell the difference in his behavior!)

Julie said...

I'm trying to reach Kim Howell who left a note in November of last year. I just got a prescription for Strattera and like you have a child who will in no way shape of form take this med in a capsule.
I just called a compounding place and they are dragging their feet. Could you give me the name and or number of the pharmacist you found.
I would be forever grateful!
Julie

Jen said...

Julie,
I found our compounding pharmacist at this website and they made up our liquid Strattera in one business day.

http://www.iacprx.org/site/PageServer?pagename=lookup_survey

Anonymous said...

I really want to thank you Jen for your response to my posting. I found another compounding specialist that was closer to my home from this site. Its great! Plus they are cheaper too. We had it made into a transdermal gel from all the postings on this site. Its been a life saver!
Is the Strattera still bitter when taken in liquid form? That's why we chose not to do it that way.
Thanks!
Julie

Anonymous said...

Julie,
I don't know if it tastes bitter but my son is not enjoying the cherry flavor that the pharmacist added so I'm going to see if he can make it grape next time. We put it in his OJ which doesn't help much. I'm thinking that if I can get grape flavor and then put it in a little bit of grape juice maybe that will make it a little easier for him.

Anonymous said...

Jen,
Hi, please keep me updated on how the liquid is going. Just in case we have to switch some day.
I will tell you, if the transdermal will work, it takes all the stress out of it. It is $30.00 above the cost of the co-pay for the strattera.
Julie

Tina said...

hi
I just found this site today and was reading your list of meds your son bud was on. my son been on all that and then some. the list is long and hard cause some med made it worse and some are good. depending on the dr you see. My son was 3 years old when I found out that he was autism and now he 14 years old i will try and get a list of med he has tried
hope this helps some
tina

George said...

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claire said...

oh my oh my!
we are on day 9 of Strattera. I've run out of ways to hide it in food at the 60mg amount...interesting thing is, our doc said it was okay to open the capsule...as did the pharmacist...but it is SUPER bitter and burns the throat. I am going to try the sticker chart AND the jello AND the m and m tester. Thanks for writing about it!
Claire