I wrote a few months ago about the option of putting Jack on medication for his ADHD like symptoms. As his pediatrician stated, these symptoms are very common in children with Asperger's- she was supportive of us either way. Jack's teacher has had the very frustrating task of trying to help him focus in class- and not hyper focus on things like airplanes. She was supportive of a medication trial as well. So we took the plunge- hesitantly- so more like we dipped our toes in and have now yanked our frozen feet out of the water and decided to go another route.
There are a bazillion ADHD medications on the market. 99% of them are stimulants, which has always seemed counterintuitive to me. Our first attempt with medication was to try one of these- focalin. We started with a low dose and gradually increased. And here is where the issue lies for kids like Jack- he has major sensory issues right? These stimulants take these issues and multiply them for these poor kids- my baby wore headphones all day every day at school for nearly a month because of this medication. And he was sleepy most of the time. I called the pediatrician and said "NEXT!". So then we tried the medication in the other 1%- intuniv- a non-stimulant ADHD medication that originally was prescribed for hypertension in adults. This medication has for the most part been used to enhance the effects of the stimulant drugs, but our pediatrician and others have had some success using this agent alone in Asperger's kids. One caveat- Jack had to learn how to swallow a pill.
Mommy tried everything (I thought) to aid in this process- we tried pudding, applesauce, ice cream, chocolate sauce, etc. And mommy also sat and stared at Jack for hours after he had accidentally chewed these slow release pills- checking capillary refill and level of arousal as I was afraid he would have a hypotensive episode. Guess what worked? JUICE. Gulp, gone. He can take 2 and 3 pills at a time, who knew?
The result of this medication- you have been watching me live it, you just haven't known the reason. First, Jack has been falling asleep in school multiple times a day. Second, his OT was in tears at one point because he just wasn't "Jack" anymore (and I agreed). Third and most disturbingly- the sleep issue. Jack's anxiety at night was through the roof- waking 10-15 times a night. I have slept at the foot of his bed more nights than I care to admit out of desperation for a little rest. And if I so much as shifted like I might get out of bed, Jack woke up and called out for me. He had other side effects as well, although we can't be sure if it was truly the meds or if it was lack of sleep- he was being mean to the whole family, using bad language, just not himself. Although when at school and AWAKE he was supposedly focusing a bit better on his work. I doubt this was actually the case, although I am sure he was quieter because he was exhausted. I cried UNCLE about 2 weeks ago now and we started weaning him down, and giving him clonidine for sleep. His doctor warned me to give him only half a tablet initially which would probably knock him out- try 2 full tablets, and then he would stay asleep for about 2.5 hours.
Last night I finally saw a light at the end of the tunnel. He only woke up twice. Granted I fell asleep at the foot of his bed and stayed there- but he didn't wake up this morning until 7:30. I cried.
So if you are wondering why I am being so diligent and adding so many different biomedical interventions it is because I want to avoid medications unless absolutely necessary. They are too rough on Jack. And frankly, how can I be sure that these ADHD "symptoms" are really that? It's more likely that his sensory issues, lack of over all core strength and hyperfocus on his areas of interest are what is causing these issues. Medication is not the answer for that- school intervention is. Enter IEP advocate.....
There are a bazillion ADHD medications on the market. 99% of them are stimulants, which has always seemed counterintuitive to me. Our first attempt with medication was to try one of these- focalin. We started with a low dose and gradually increased. And here is where the issue lies for kids like Jack- he has major sensory issues right? These stimulants take these issues and multiply them for these poor kids- my baby wore headphones all day every day at school for nearly a month because of this medication. And he was sleepy most of the time. I called the pediatrician and said "NEXT!". So then we tried the medication in the other 1%- intuniv- a non-stimulant ADHD medication that originally was prescribed for hypertension in adults. This medication has for the most part been used to enhance the effects of the stimulant drugs, but our pediatrician and others have had some success using this agent alone in Asperger's kids. One caveat- Jack had to learn how to swallow a pill.
Mommy tried everything (I thought) to aid in this process- we tried pudding, applesauce, ice cream, chocolate sauce, etc. And mommy also sat and stared at Jack for hours after he had accidentally chewed these slow release pills- checking capillary refill and level of arousal as I was afraid he would have a hypotensive episode. Guess what worked? JUICE. Gulp, gone. He can take 2 and 3 pills at a time, who knew?
The result of this medication- you have been watching me live it, you just haven't known the reason. First, Jack has been falling asleep in school multiple times a day. Second, his OT was in tears at one point because he just wasn't "Jack" anymore (and I agreed). Third and most disturbingly- the sleep issue. Jack's anxiety at night was through the roof- waking 10-15 times a night. I have slept at the foot of his bed more nights than I care to admit out of desperation for a little rest. And if I so much as shifted like I might get out of bed, Jack woke up and called out for me. He had other side effects as well, although we can't be sure if it was truly the meds or if it was lack of sleep- he was being mean to the whole family, using bad language, just not himself. Although when at school and AWAKE he was supposedly focusing a bit better on his work. I doubt this was actually the case, although I am sure he was quieter because he was exhausted. I cried UNCLE about 2 weeks ago now and we started weaning him down, and giving him clonidine for sleep. His doctor warned me to give him only half a tablet initially which would probably knock him out- try 2 full tablets, and then he would stay asleep for about 2.5 hours.
Last night I finally saw a light at the end of the tunnel. He only woke up twice. Granted I fell asleep at the foot of his bed and stayed there- but he didn't wake up this morning until 7:30. I cried.
So if you are wondering why I am being so diligent and adding so many different biomedical interventions it is because I want to avoid medications unless absolutely necessary. They are too rough on Jack. And frankly, how can I be sure that these ADHD "symptoms" are really that? It's more likely that his sensory issues, lack of over all core strength and hyperfocus on his areas of interest are what is causing these issues. Medication is not the answer for that- school intervention is. Enter IEP advocate.....
My kids started out on clonidine. Just be careful... it's easy for a kiddo to get used to it to the point where it doesnt work anymore. Hang in there! Good luck!
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