Busy Busy mommy

Wow, mommy has been busy the last couple of days. I have been researching pediatric neurologists and epileptologists non-stop for three days now. I have really been contemplating our recent medicine changes and the current course of treatment. I talked to Dr. Toth and asked if/what I had to do to get a second opinion. I was so happy when he gave me the ok and said he would get the ball rolling on a referral. There are just so many different decisions to make now.

I was told about a doctor here in Omaha who is seeing some friend's kids. He came highly recommended. When we tried to book an appointment with him we were told he doesn't see pediatric patients. I was a little disappointed. Our second and third options are the Mayo clinic and the Minnesota Epilepsy Group. After meeting with Dr. Toth today he is going to do a little checking on both to see who has a slight edge on Infantile Spasms. It looks like we are going to be headed to Minnesota. (As long as insurance accepts our request!) We are saying prayers that we will be lead in the right direction and that everything goes smooth.

Still having seizures so upping meds. Jayen is currently take 4 Topamax pills twice a day, 2 Depakote twice a day, Lamictal is a very slow progression to 4 pills twice a day, and now we upped the Klonopin to 2mL 3 times a day. Jayen is going to be very sleepy from all these meds. I wish he was his happy self again. I don't like seeing him all "drugged" up.

What a year

One year ago our crazy journey with Infantile Spasms began. I was laying on the couch with my 4 month old baby when suddenly his arms started twitching. You are one strong little man Jayen. If I could take it all away I would do it in an instant. Love you!!!

"Too early to say"

Well, meet with Dr. Pavkovic today but didn't get any answers. Jayen's lab results came back and we decided to up the depakote too. Jayen is now taking 4 topamax and 2 depakote pills every morning and night.
I really didn't get any questions answered. Every time I would ask something I would get the response, "It is really just too early to tell." The only thing I was given is a possible name. I was told if I had to have a name for it it would be called secondary generalized epilepsy. We are mainly focusing on controlling the seizures right now and will work more on the causes later.
I really wish Matt was here to help me through this. I think part of me dies every time I see Jayen having another seizure.

Things have been crazy around here. This crazy journey is no where near over.

Jayen continues to have seizures. We have increased his Topamax twice now and just aren't sure where to go from here. We called the after hours line yesterday and the doctor didn't want to do any more increases until we get some results back from lab. Jayen had some labs drawn today, so we will hopefully hear back from the doctor soon. The medicines can cause problems with his kidney and liver functions so we have to keep a close eye on it. We see Doctor Pavkovic (neurologist) on Wednesday and I have so many questions to ask. I hope I don't forget any of them!!