Wednesday, September 10, 2008

you think you've got problems....

In my search to find someone dealing with the similar issues as me, I joined an "ecommunity" for people dealing with seizures and epilepsy.
I posted my question about one seizure, abnormal eeg etc, why medication? .....

Some of the responses go something like this....
"Wow! I could have written this myself. I know exactly what you mean...."
Oh wow, I think someone with a similar experience.
And then ominous musics inserted here...

" when I got the EEG report, which states ... "As the day progressed the background became more symmentrical and less of the epileptiform discharges were identified", and the day after the seizure on 7/3 "This slowing may well be seen as a post-ictal finding and has improved from the beginning of the recording."

I know; I can see your eyes crossing from here.

This was written by a mom who's profile reads like this....
Single Mom to L... complex partial with secondary generalization to tonic clonic activity. Stopped Keppra (imagine a 6 year with PMS), failed Trileptal (rash), stopped Depakote (extreme intestinal issues), and back on Clorazepate (Tranxene). Stalling on starting Topomax, since there has been no seizure activity since the first one (knock on wood)

Yikes. She is a lighter version of what people struggle with. Some people cry out on the boards as they take their children in for brain surgery. Kids having big seizures everyday despite numerous medications and/or surgery.

I have just hit a little rough spot in trying to figure out what to do with my kids and our life. Between KC's developmental issues and now K's seizure, it is all I can do to keep us all alive. I've found myself angrier than normal, and I take it out on the four guys I love most in the world.

Friday, September 05, 2008

mean and nice ladies that answer phones

Someone sent me a prayer she said/written specifically for K.
Somehow made me feel better.

I cancelled my Cleveland appointment to get a second opinion. Even though the appointment was with the Ped. Neurology Division Chief, and those nice ladies that answered the phone got me squeezed in before the end of this month.

I've realized that on the other side of town is Emory and their pediatric neurology folks. Though I can't get in until JANUARY.

We still have to follow up with our nurse practitioner at Child Neurology Associates in the meantime. I called to schedule his next appointment and asked if I could see a real doctor this time instead of a nurse practitioner. Not that s/he would be any better, smarter, kinder. I would just feel better if a second set of eyes looked at his info. A not so nice lady that answers the phone was very inconvenienced by me because it would require her to fill out a form for it and I'd have to state my reason. You know how sometimes you get luck of the draw with your call....well I got the a rotten one. She indicated that they may deny my request to switch doctors. So much for partnering with us in the care of our son.

In the meantime, I have this book written by the the Johns Hopkins folks. It has educated me on a ton of stuff. After reading it, I feel more confident in our decision to hold off on the meds.

Baby KC will be cycling into the county school system soon to begin more therapy. The developmental pediatrician confirms he does have Apraxia. We will have to continue to monitor him during his school years because many kids have learning disabilities.

He has the comprehension of a 3.5 year old, but the expressive language skills of a 21 month old to a 2 year old, which really, I knew he was about a year or more behind on his speech.

He also took another hearing test yesterday. The audiologist passed him through on the main part but will have to see him back for more testing since he either can't hear the softer sounds or his attention span is short.

ugh....this is the short version of the update.
maybe a more creative blog entry another day.

By the way, our middle son makes us proud. Let me just say this loud, Q has no medical or developmental issues. The teacher's assistant says he eats every piece of food on his lunch tray. We are so very proud. Every little bit of joy helps.

Tuesday, September 02, 2008


Should I get a second opinion on K?
Does he really have epilepsy?
Does he really have to take the medicine?

I made an appointment with a doctor at Rainbow Babies in Cleveland.

Hunka and I agreed we are not giving him the meds unless he has more seizures.

He can move on. I can't.
I still wonder if it is the right thing to do. Is there anything I/they are missing?

My brain is overloaded.