Total Ignorance

As mentioned, Tyler was started on an anti-seizure medicine, Trileptal, 2 weeks ago. After the first week we noticed a definite interruption of his sleep during the night and also some issues with going to the bathroom. I read all the side effects, including on line where there were personal testimonies and these 2 are side effects experienced by many people on this medication. So I called the doctor on Monday. His nurse was out but asked for a full detailed message, of which I gave her.

Yesterday I receive the return phone call from the nurse. I am fully expecting to be sent in for blood work as this medication can lower sodium levels. She says to me that she wasn’t familiar with either the interrupted sleep or the digestive issues being side effects but she did say that wasn’t to say they weren’t. She continues to say it sounded more like an intestinal bug and that we should call the pediatrician rather than the neurologist. Hope your all seated as this is the best part of the conversation:

Nurse: ” As for the interrupted sleep, you should keep him on his normal routine no naps and lots of exercise.”

Me: “Well naps are part of his routine. He doesn’t take them daily but he does take them when he is tired.”

Nurse: “What 5 year old takes a nap? That is only asking for behavioral issues. Have him ride his bike or run around, with a buddy of course to make sure he doesn’t get hurt.”

ME: “If I could have him do those things I would but you see he doesn’t walk, let alone run so that will make it difficult.”

Nurse: “Oh. Call your pediatrician for the virus and I will ask the on call doctor if she has heard of these 2 things being side effects. If she thinks differently, I will call you but please call back with the recommendation from the pediatrician.”

ME: “Sure” with a COMPLETE hint of sarcasm in my voice.

Ok, so this is the first time I have spoken with the nurse, since we just switched to this neurologist in May. BUT, shouldn’t she scan his chart quickly before calling back?? She claimed to have had it in front of her and that she was reading the doctors note. Well if she read the first paragraph of the doctor’s note, she would have had his FULL description of his medical history including the fact that he is non verbal, non ambulatory, legally blind, etc etc.

I just can’t believe that was the converstation I had yesterday. I still can’t wrap my mind around this. So in 3 months, I have encountered 2 bothersome situations from one of the best hospitals in the country. Not making me very happy AT ALL!

Last night was no different with Tyler tossing and turning around 4AM. So this morning as he happily ate his english muffin, I said he needed to ride his bike more today so he along with Mumma could get a full nights sleep…too which he laughed and gave me a big smile that always melts my heart! If only his smile could make everything right!