Thursday, June 28, 2012

Josh's Neurology Day

This is how I bribe him these days down at the hospital....he gets to throw in pennies on our way into the hospital and then again on the way out. Works good for now:)

So Josh had a big neurology appointment on monday. He had an EEG followed by an appointment with a PA since it was more of an emergency appointment and his neurologist is booked for months.

Josh's neurological function has had an obvious decline since April when everything went downhill for him. He had his balance issues back, his twitching and odd movements back, and was having all the GI issues, ect. Plus he began doing what I was pretty sure was absence seizures... where he would zone off and be out of it for a few seconds (they are ususally harmless so I wasn't panicking). His GI doc wanted me to call his neurologist after his hospital stay to see if he wanted to increase Josh's meds.

Now let me explain that it has never been definitive if Josh has seizures. His neurologist didn't know. Since his EEG came back normal 2 1/2 years ago, but he was having seizure-like symptoms that weren't happening during the test, he started him on Neurontin anyway, which is an anti-seizure med. Things got better. Rather than drag out more inpatient testing, we opted to just keep him on the meds. Everything has been stable since then.

So we went to the hospital to have his EEG done. I had to sleep deprive him since they wanted him to be asleep for some of the test. I honestly didn't think he would fall asleep since he was so upset about the 28 probes being pasted to his head. But he did fall asleep for 18 minutes of the 45 he was recorded. Since he didn't do any of the absence seizures, I figured we would once again have a normal EEG and not really get anywhere.

We had our appointment 2 hours after the EEG. I was surprised when she pulled up the results of his EEG and she read to me that he had 2 seizures while sleeping. I wasn't even worried about when he was asleep! I honestly felt a little blindsided by that. She also told me she is sure he has absence seizures as well.... it comes with the territory. The other thing the report said was the background waves.... like his brain electricity for lack of a better way to explain.... was abnormal. But she also said that with his microcephaly and now seizures.... it would be expected. So now we officially have the scientific proof that Josh's micro is more severe than we might have originally thought.

Now began the problem. How to treat him. We discussed a couple different meds to add for the seizures, but it didn't feel right either. Keppra is one of the ones we talked about, but the side effects are behavioral issues. With his ADHD and Autism Spectrum Disorder, she felt that would be a really big mistake. The other med we talked about was Topomax. But that med had bad constipation and appetite suppression as a side effect. That would really not be good for him with all his GI problems right now. So after she talked to another neurologist, we decided to max him out on Neurontin....which he is already on. So we added a 3rd dose to put him getting it every 8 hours now. We will increase each week for 3 weeks to get him up to his max amount. If this works.... it would be the best thing. If it doesn't work then we have to decided what to start and what side effects we can deal with. He will repeat the EEG in 3-4 months (when hopefully his GI issues are finally taken care of) and we'll see if what we are doing is working. She thinks if we notice a difference in the daytime seizures....the nighttime ones should be getting better as well.

We had to talk about what this means for Josh. We need to keep a closer eye on him, especially in situations when he could get hurt... such as climbing on things, around water, in the bath, ect. She told me that he could always have grand mal seizures now so keeping an eye on him at night would be good.

I don't think I have slept well since monday. I check on him several times a night. I just ordered one of those baby moniters with a video screen so I can see him all night long. I had to do something to ease my mind at night. Sleep is over rated right?

So that is our newest adventure. Other than that Josh is stable right now. We are doing enema's several nights a week and it's keeping him comfortable. July 20th can't come fast enough. (that is when we go to the Colorectal clinic). I am so done with this living in limbo:)

Wednesday, June 6, 2012

Emails for Josh

After Josh's last hospital stay I had several people tell me how surprised they were he ended up down at Primary Children's Medical Center. During the whole process leading up to his inpatient stay... I did do brief posts on Facebook about him. I didn't think about the fact that not everyone is on Facebook and therefore left out of the loop.

So I decided to do make a group email list and send out periodic updates that way. This way I can use my phone or the iPad as well.... depending on what I have at the moment.

If you would like to be added to my list and don't think I have or know I don't have your email addy... please leave me a comment with your email address or email me directly at and I will get you added.

Thanks! Josh can always use all the people praying for him that he can get!!