School and Seizures

Thanks everyone for keeping Jack in your thoughts.

I believe it's safe to say at this point it was not his shunt -- he's been totally fine, thank goodness! He's eating well and very happy -- not whining and crying like he was.

As for the seizure -- our plan right now is to get more labs and get different levels (he called it a trough level?) and see if we should give Jack his meds 3 times a day instead of twice a day (he gets 7 ml twice a day -- but we could go to 4, 4, and 6). We'll see after we get the lab results. We just got back from the lab and the results should be faxed over tomorrow for the neuro to read on Monday.

I spoke to Jack's teacher and while she couldn't tell me what to do -- she told me all of my "options" so to speak. We could get a private duty nurse for Jack for 2.5 hours while at school through our insurance. We could do home based therapy, I could come to school with him, or we could train the staff how to administer diastat. I told her I would discuss these things with Jason and with Jack's neuro.

The neuro said not to train the staff to use diastat and if he were to have a seizure at school they should call 911 right away. He said he feels this is best since Jack is such a "little fellow" -- and with older kids he may suggest something different. I would sit with Jack in school -- but I am going to have a baby in two months and I think Jack does benefit from going without me! Home based therapy seems like a temporary solution, and again he loves school and I would not want to pull him out unless it was really, really necessary. DH and I think we'll get nursing for Jack while in school. Jack's little friend has a nurse due to seizures, and another little guy has a nurse for his g-tube and there's another little girl with a nurse for I believe seizures and a g-tube. So he won't be the only one. That way the nurse can administer diastat if needed and watch his breathing, etc. while they call 911. Also, a nurse would be able to give him Motrin at the first sign of a fever and therefore potentially avoid a febrile seizure.

I spoke to a local nursing agency yesterday and they checked with our insurance -- we are approved for 240 hours of nursing per calendar year -- then medical assisance should pick up the rest. The woman I spoke to on the phone said when it comes time for MA to pay they may require a letter of medical necessity. They may only pay for an LPN which would not be able to administer meds which would make it pointless. But I calculated coverage for an RN would last 96 school days (240 hours, 2.5 hour days)...so we'd be covered for quite some time. They are supposed to call back today to set up an intake on Monday. So far they've been nice and helpful.

The nurses are in the classroom and they keep an eye out for their assigned kiddo. They aren't right on top of them and the kids don't realize that they are there for them. To them it's just another adult in the room. The teachers can then concentrate on teaching and not worry so much about looking for seizures.

I HATE that this happened but we have to go on from here. I never expected Jack to need nursing for seizures. I hope he never has another, but at least now if he does have one at school there will be someone medically trained there to help him.

He's doing great today -- he's napping now and we'll probably take it easy this weekend (no date like I had originally thought, but that's absolutely fine by me). We'll be working in the bean's room too -- 7.5 weeks to go!!!