Thursday, May 20, 2010

Autism and taking pills

For months before Stephen's most recent Neurology appointment he was taking longer and longer to take his seizure meds.

He has never taken pills, ever. When he was really little and still liked juice boxes, I would pop up the flap on side without the straw and cut a little bit of the tip off and either put in crushed pills or pour in liquid medicine. Luckily, for him and us, he has only had to take antibiotics a couple times in his life. He has had to suffer through a few very high fevers, the last one we resorted to suppository acetaminophen, and the body aches, headaches, etc. that go along with flus because he wouldn't even eat chewable medicine : ( When he was diagnosed with Epilepsy about 3 years ago we were lucky that he liked to eat bread with jelly on it. He doesn't drink anything but water. He does not eat yogurt, apple sauce, pudding, jello or any of the usual things you can hide meds in.

So for 3 years, twice a day, every day, he has eaten a piece of bread with his liquid seizure meds on it and covered with grape jam. He would watch a movie in the morning while he ate it. At night he would watch a movie on his computer, once he got a new one, while he ate. The average time it would take him to eat it would be about a half an hour max. Until about 6 months ago. He took longer and longer over the months. The last month he was on the liquid meds he was taking about 1 1/2 hours TWICE A DAY and we had to constantly nag him to eat it. He was telling us, very clearly, in a non-verbal way that he was not liking it anymore. We were starting to worry that one day, very soon, he would refuse it outright and start having seizures.

I tried getting him to swallow small vitamin tablets to see if there was a snow ball's chance in hell that he would take pills. He hated it and kept spitting the pill and a mouth full of water at me. My worry that he was going to stop taking his liquid meds and not be able to take pills was increasing. When we went to his Neurology appointment we discussed giving him pills. Our two choices were Trileptal pills (that is the liquid he was currently taking) and something else that could develop a life threatening rash. We went with the Trileptal pills. I told her how our practice sessions went with the vitamins and asked if he chewed the pills if that was ok because a facebook friend said her child chews his seizure meds and it doesn't affect it's effectiveness. She said it probably wasn't ok for him to chew them. I was not feeling very positive about trying to get him to swallow these new meds and feeling we were on the verge of disaster.

The doctor suggested giving him a candy reward to motivate him to take the pills. We never use food rewards but this was a critical, medically necessary, task that he needed to do. We went shopping with Stephen and picked up a bag of Smarties. That night we showed him the 3 tablets he needed to take and the told him he could have the candy after he took them. He chewed the first one. I thought, oh crap, he's chewing them and the doctor said he shouldn't. I gave him one Smartie after he ate each pill. I was happy he took them but feeling a little freaked out that he chewed them. So I called CVS pharmacy and they said they couldn't find any info that said not to chew them. They gave me number for a local compounding pharmacy and they also told me that there was no info saying that it wasn't ok to chew them. I was sooooo excited!!

I called the Neurologist after the weekend and told her he was chewing them and that I had made some phone calls and was told that it was fine for him to chew them. She said that the price was so high for the liquid that people had been crushing the pills and taking it that way without problems. Why the crap hadn't she told me that at the appointment? I was too happy that he was taking the pills and that he was happy taking them to point out her omission of important info at his appointment.

He has been taking the pills for over a month and it takes a couple minutes instead of over an hour. Once the Smarties ran out he kept taking them without the reward. He did have a break through seizure, a little one, a few weeks ago. We briefly increased his dose and need to get his levels checked tomorrow. He is now also taking chewable vitamins but only if we watch him otherwise he will throw it away. I don't like the idea of gummies because they look like candy. Do any of you know of a chewable vitamin that tastes really good but not so good they will nag you to eat more?

Do any of your kids have issues with taking oral meds? What have you tried? What has worked/not worked?

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