Tuesday, March 3, 2009

No Rest for the Weary


When my sister and I were kids, my dad always used to say "sleep fast" when we'd go to sleep late at night and have to wake up early in the morning. Unfortunately, I am now 30 and still don't know how to do that! Sleep is not easy to come by these days. Kendall has started to have seizures in her sleep. I thought this was uncommon for Infantile Spasms, but like everything else with Kendall, unlikely things seem to always happen!

I picked up copies of Kendall's past 5 EEG's. The last one shows that the "study does not rise to the level of a modified hypsarrhythmia, but is consistent with an epileptic encephalopathy." If anybody knows what that means, please let me know. Also, the last video EEG (done before the one I just asked about) states that she had "multiple tonic spasms, hemihypsarrhythmia, and diffuse slowing and disorganized." So, does that mean she has IS on only one side? I don't understand!

Her seizures are disturbingly increasing in frequency and force. This morning at PT she had several, but her head control was great! We have officially added OT to our list of services now too. The new OT gave us some great things to do with Kendall to promote more reaching and grabbing. It's just really frustrating to me because her seizures rudely interrupt pretty much everything we do in the morning. I'm really ready to move on to the next medication. Our hematologist appt. is on Thursday, so hopefully we will make new decisions soon after.

Please continue to keep us in your prayers this week.

3 comments:

Jessica said...

Praying and sending love your way!!

Cindy said...

Sweet photo!!
Cindy

Cjengo said...

Hey girl. Couple of things....this may be a novel..lol. The doctor's at Cooks and Dr M are wonderful, BUT the biggest difference I found in getting this second opinion was the explanation of everything. Dr R took us step by step through Jude's Seizures, where they started from (right side), and what they meant. He told us in his experience IS is more common in sleep, and when going to sleep. We watched while Jude was fast asleep when the seizure started building on the right side until it woke him up, and lasted 17 mins. He then took us step by step through the MRI pointing out every part of the brain and explaining everything in detail. We then went through every medication tellins us each side effect, and the percentage. Last night Jude had his FIRST (nearly) seizure free night in months! He had one little twitch episode but for us that's nothing. All we have done is add the vitamin B6 at 200 mg a day with the topamax. You might consider a second opinion 972-769-9000 Dr Riela. I was so hestiant at getting one, and going through more testing. It was our pediatrician that finally talked us into it because he wasn't happy with what Cooks was saying. So you might go talk to them. So far this Dr has been pretty right on. I never even knew Jude's stroke was worse on the right side because no one bothered to tell me. I kind of felt like they thought Jude was so messed up that it wasn't worth taking the time to explain anything. They felt like all I needed to know was there were brain problems. That may be my assumptions but still........
hope this helps.