Max Update

 I recently posted about Max's epilepsy and how we were waiting for the appointment with his new neurologist. Well, that happened on his birthday. Only one parent could attend and so I drove us to downtown Phoenix to meet his new neurologist and get a new plan for Max.

Our new doctor only works with epileptic children and he has many, many years of experience. I felt really good about him very early on in the appointment. He read all of Max's files ahead of time so he was prepared for the meeting. It was nice not to have to repeat everything.

He's pretty confident the epilepsy is not due to Max being a premie since his MRI is normal. He's pretty confident this is due to genetics. That our genetics combined produced an epileptic kid. Since we don't have another child to compare this theory he is not for sure. So, the doctor ordered a genetics test on all three of us to determine if it truly is genetics. He really wants to get to the bottom of what is causing the seizures. There's a 50% chance the genetics testing will help us determine a plan of action. It will help the doctor make decisions on how to treat Max. He did warn me though that there's a 50% chance the genetics testing will not help at all. Also, genetics testing is so controversial though that we had to sign paperwork giving our consent. The hospital does not keep the genetics testing in a database nor do they sell the information. It's strictly used for diagnosing Max. Anything to help Max overcome this we are on board with and I signed the paperwork. 

In the meantime, while we wait for the genetics testing to come back the doctor changed up Max's medicine slightly. He increased the dosage and changed the format of how he gets his medicine. It used to be in liquid format, but the doctor changed it to a pill format. He said the liquid format has a high peak and a low valley which the low valley could be a cause in his increase in seizures. This and the fact that he's grown so much since he was four years old and originally prescribed his medicine. He definitely outgrew the dosage. The pill format provides more of an even keel all day long. The problem is that he can't swallow pills yet. Until he learns to swallow the pills we have to open each pill and pour it into applesauce or pudding in a spoon each time. 

He also discussed possibly seeing an epileptic therapist as well to help Max with his anxiety. He said that could be an option too, but first, he wants to see what the genetics test will tell him. 

I asked him about Max growing out of this since his brain is normal and he said that many children do grow out of it and if they do grow out of it kids tend to grow out of it between the ages of 11 and 13. Since he is a new doctor to Max he couldn't say his professional opinion on if he thinks Max will grow out of it. Only time will tell though.

I will keep everyone updated on Max's epileptic journey.