A few weeks ago, we all caught the H1N1 virus. Oh, the misery! I was especially worried for Jake because he has asthma. I was able to control his cough pretty well with nebulizer treatments. In fact, his lungs managed this flu better than many simple colds he has had in the past. But there was a complication to this flu that I definitely never would have imagined...
Like all of us, Jake lost his appetite when his flu symptoms began. He wouldn't eat anything at all and refused all drinks except for water. The rest of us regained our appetites within a day or two, but not Jake. I couldn't get his supplements into him and his autism just took over. After a couple of days, he even began refusing water. He wound up not eating at all for 2 weeks and had an 8 day hospital stay.
We tried everything to get him to eat or drink. I brought all of his favorites from home and the hospital was kind enough to keep a steady supply of his beloved chips and french fries delivered to his room, but he only got more upset when offered anything. We turned his IV off for a day, hoping it would make him thirsty, but that didn't work. He was put on medication to relax him, but that didn't help. We started him on Risperdal to increase his appetite, but he still refused to eat or drink.
The situation was desperate. Jake had lost 25% of his body weight. He has always been a skinny kid, but at this point he was wasting away to nothing. The next option would be to insert an NG tube and keep him restrained (so he wouldn't pull it out). I wanted to avoid that if at all possible, because it would just be so horrible for him.
Throughout his hospital stay, I had focused on keeping him calm with the hope that his appetite would return and he would begin to eat. Clearly, this strategy was not working. So it was time to up the ante a bit. I let the nurse know that I was going to try something different and she would probably hear Jake having a meltdown. She gave me the okay to do what I had to do.
In the past, when Jake was uncooperative, I would offer him a choice. One option is the thing I really need him to do and the other is a far less desirable option for him. This doesn't always work, but I felt like it was worth a shot. One of the things that Jake hates most in the world is taking medicine. I filled a syringe with apple juice (which he doesn't like, so it might as well have been yucky medicine). I sat next him on the hospital bed and gave him a choice of taking one bite of a french fry or having 'medicine'. He had a major meltdown and refused both choices. I had to follow through with this, so I held him down and syringed the juice into his mouth.
I continued to offer these choices to him and eventually he willingly accepted the syringed juice. It wasn't ideal, but I hoped that having something in his stomach would stimulate his appetite. I continued to syringe juice, milk substitutes and protein shakes. By the next night, he agreed to eat again but would only do so if I fed him.
He was allowed to come home from the hospital, with me as his human IV. He refused to self-feed or drink, so I continued syringing liquids and feeding him his solids. Over the course of several days, I coached him on eating and drinking and eventually he was able to do it himself.
The Risperdal has dramatically increased his appetite, but his other autism symptoms were better managed with the supplement protocol. He has regained the weight he lost so I will begin weaning him off of the Risperdal soon and I am slowly resuming the supplements.
That's what I've been up to for the last month. Things are finally beginning to get back to normal around here, but I am still playing catch up with work. I have some giveaways planned in the coming weeks...so watch for new posts!
I was happy to receive a copy of Cowboy & Wills by Monica Holloway to review. On the surface, the book appears to be a classic tale of a boy and his dog. But in reality, it is the true story of a boy with autism (Wills) and the dog (Cowboy) that changed the trajectory of his life.
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