TS Specialist, Medicine Changes, & Seizures

Joel had an EEG the first week we were in Ohio. He cried while the electrodes were placed on his head (as he usually does),.. but thankfully Jeremy and I were both able to be in the room (SCH would only let one of us be with him during EEGs) and I was able to lay beside him. He calmed down once the techs were done touching his head. At the end he was excited and kept saying "done.. mama, dada.. done.." and would also do the sign for "all done."

{Seeing him like this breaks my heart. I thought it would get easier as he gets older, but it hasn't. I worry about how I will explain all this to him when he is older and starts to question why he needs these tests. I pray God will give me wisdom on how to explain it when that time comes.}


We met with a neurologist after the EEG. The neurologist is a tuberous sclerosis specialist. It was amazing to talk to someone that actually understands TS and was able to answer all of our questions. The neurologist in Seattle was nice, but it was obvious she didn't know much about TS.. We would leave appointments feeling more confused than we did when we went in! It was frustrating. Anyway, the TS specialist said he couldn't believe Joel has only been on one seizure medicine because most TS children have to try multiple meds before finding one that will work. He also said he couldn't believe the notes and the test results from Seattle because Joel's EEG from that day looked great. He said the first EEG Joel had (without meds at 7 months old) showed abnormal activity all over his brain.. and the current EEG showed a tiny bit of abnormal in the front left (where most of his tubers are) but it was so small that you would miss it if you weren't looking hard enough. All I could think was GOD IS SO GOOD!

One thing we have been concerned about for a while though is Joel's appetite. His seizure medicine has a long list of side effects and appetite loss is one of them. Seattle doctors usually brushed it off, telling us it was probably just a toddler phase and not to worry because he was still gaining weight. But I knew in my heart that wasn't true. So before sending us home the doctor sent us to the lab for Joel to get blood drawn to check his medicine levels. (Seattle doctors never checked his levels!) His levels were a high normal so the doctor decided to lower the meds to 2 pills {we open the pills and sprinkle the powder into food~in case you are wondering how we give a two y/o pills} in the morning and 3 at night. We noticed right away he was eating more! But.. we also noticed the seizures again. He would randomly stare off and no matter how loud we said his name or clapped our hands in his face he wouldn't respond. Within a week they were coming more often so I called the neurologist and he said to increase the meds back to 3 and 3. The seizures went away and so did his appetite once again. =\ I'm worried his medicine will need to be changed to help with his appetite. Why does that make me worry you ask.. Well because what if the next medicine doesn't work as fast or as well as the current. I don't like to think about it. At all.

In the end, I still believe God is good--and I know He will give us and doctors wisdom on how to keep our sweet boy healthy!