Tuesday, October 27, 2009

Blogging from the road...

This is a long one so pull up a chair, grab a glass of your favorite something, and get ready.

Loved Dr Chugani (aka Dr Rockstar)!  
The hospital was nice.  The nurses were great and patient with Noah's helicopter mom. Overall, we had a pleasant experience.  Noah probably doesn't agree but he hung in there like a champ.  He didn't sleep well or eat well (SURPRISED?) but now that he's back in his carseat, he's sleeping away despite what's going on in his brain.  

I can't read EEGs but I do recognize chaos when I see it and his is very chaotic.  Poor little guy doesn't ever really get a break from massive electrical activity (confirmed by Dr V).  

So, what can we do?

Since Noah's EEG is such a mess they can't really see the area of origination of the seizures with absolute certainty.  So Dr. C would like Noah's EEG to mature (clean 'er up a little bit).  His suggestion was to start the keto diet and if that doesn't help then a round of ACTH.  So, not exactly what we'd hoped (I really wanted to go straight to the OR and get on with it) but it's not a "No".  There was a spot on the PET Scan that indicated an area where the seizures start but he wants the EEG to support that to make sure that's THE one and there aren't more.  

Looks as if some of Noah's brain cells didn't quite make it to their destination and started a little party a little south of where they should have which caused him to develop seizures.

Next, and this is what I didn't expect, Noah got a diagnosis of Choreoathetoid Cerebral Palsy.   Say that three times really fast!  Argh!  Cause:  Noah's second surgery (removed the tumor from his spinal canal) caused a lot of blood loss.  He actually got 2 Units of blood in the OR and two more in the NICU later that day.  When that happened he sustained brain damage.   His basal ganglia and thalamus don't metabolize sugar like they should, but it's a gross motor/muscle issue.  Good news, his cerebral cortex showed pretty good metabolism, so there's cognitive potential there (if we stop seizures).  

So our little man has been hit with a double WHAMMY!  We got the "your son is an interesting case", again.  

We did hear from Dr L and he said we were FINALLY cleared for the keto diet (starts on Nov 9th) and we get to start weaning another med.  So it's not all bad news!

We are tired and worried and... I could go on and on with adjectives, but you get the picture.  So, I'll post more as I remember and as I process a ton of information through my exhausted brain!

Thank you so much for the prayers and support.  :)  


  1. Bless your heart! I am in awe of you, your strength and your ability to comprehend all the medical terms ! I read your posts and am constantly googling to better understand. Thing is, after I google, I can't retain the info to make any type of intelligent statement to you to let you know I'm trying to follow and understand! It is encouraging that the doctor didn't say no. Any idea how long he wants to wait to see if it will "clean up"?
    Ashton and I pray so hard for you guys every night. We will continue to pray that Noah will get some relief from his busy little brain, that the diet will help, and that Dr. Rockstar will be able to pin point the area very soon!!!
    Big hugs and lots of love to you, your hubby, and precious baby boy!!!

  2. Ok. So - diet will begin and keeping fingers crossed that doc can see eeg better in due time. Two steps forward, one step back. We are thinking of you every day and love you all. I'm sure you are all so exhausted!!

  3. Yea for the diet to start. Have to keep a hold of the positives. And he didn't say no for the surgery. so that is good too. I'm glad you guys have been and are on your way home. Love you so much. Sending Noah lots of quiet brain.

  4. Dr. Rockstar is the right guy to go to with interesting IS cases! You did the right thing! And now you have a plan...which is good. Something to aim at.



  5. Trisha,
    My name is Candy Beebe and I live in Lake City. Karen Hooper told me about your blog. I haven't read it all, but a lot and will be reading it hopefully everyday when I can be near a computer.
    I am praying for Noah and for you and your husband. You are not alone in what you are going through.