Jul 1, 2010

Back in the hospital

We're back in the hospital ... this time for tests. 

Lately, Manny has been having more and more of these "episodes".  They're coming closer together, lasting longer and are much harder on him/us. 

It's not quite retching, not quite choking.  One nurse called it "retracting".  And every medical professional who has seen it, calls it's a seizure.

Tuesday we had a 20 minute EEG and it seemed to be normal with no seizure activity ... which is GREAT news.  We then went to the Neurologist and he said that 2 genetic tests came back ... he doesn't have Canavan's or Alexander's.  But he doesn't have a clue what Manny DOES have then.  He is not acting the expected way.

For example, kids with advanced Leukodystrophy tend to have big heads ... Manny's is small.  They lose skills ... Manny is gaining them (like he says Mama, Daddy, Hi, Bye-Bye and he couldn't do that a month ago.)  By the time it's spread as far as Manny's supposedly has (per the MRI), they lose cognitive functions and the ability to interact with people ... Manny is extremely engaging still.

So we left the Neuro scratching his head.  (Usually a fingerprint that God is up to something in my experience.) 

But then Tuesday night he had a bad episode.  We were told to take him to the local ER and we did.  They saw it weren't able to EEG him quickly enough.  The ER doc called our Neuro and they agreed these must be seizures based on the way he behaves after.  So they set up the 24 hour video EEG. 

Wednesday, he had 2 episodes.  (They're so scary and you just sit there completely helpless.)  Kaley (age 10) says he looks like, "He is locked inside his own mind."  I think that's a pretty apt description of the situation. 

I sit in the hospital again and for the first time, I'm actually HOPING he has an episode.  Seems strange to wish for.  But if he's going to have them, we need to know what they are.  We need to know if there are possible treatment options. 

But you know how you go to the mechanic and your car stops making the noise?  I'm hoping that doesn't happen today, that it's not a complete waste of time. 


  1. Bless your hearts - you really are living part-time at a hospital! I pray for you every night. Since I have been following along with you,our hearts have been burdened. God has turned our int'l adoption path into a domestic special needs adoption. I hope and pray that you will have years and years with this beautiful child. He is so inspiring to me - as you are too! Blessings and prayers that they will find the cause of his seizures and that they can treat them. ---Kelli

  2. praying for answers Beth. Things are so much easier to deal with once you know what they are.

  3. Beth - our daughter had seizures when she was younger and I know her story and Manny's are completely different but wanted to mention this. We took Becky in for a check up and the dr had her blow on a kleenex several times and within 5 or 6 puffs she would start spacing off. She suffered from petit mal's and they aren't as serious but just by blowing on that tissue she would start. It was unreal and of course we about freaked out. I wonder what would happen if the dr's tried that? We were at University of Iowa Hospitals and it's a great hospital.

    Praying for you all!