Monday, October 7, 2013

Memory Monday (Botox, Button and EEG) 1/7/11 - 27


Friday, January 7, 2011


Warning - this is a long post, please bear with me!


Wednesday he got his Botox injections.  It had been 4 months since his last injection because I canceled due to not feeling well.  He didn't have to get as many injections this time.  No pecs and no thumbs!!  I think the Baclofen is really working for his spasticity and that's why he didn't need it.  While we were there we discussed his medications and what is going on with him.  The neurologist wants to go up on the Baclofen because he has these nasty spasms in his back.  

I told that the neuro that he has been having spasms and I don't know if they are seizures.  In true Jackson fashion he had a few spasms while we were there and he thought that they were epileptic spasms.  Seizures!!  He agreed that we should do an EEG.    That was this morning.

John and I both went this morning but they told us that only one parent could go back with him.  Since I wasn't feeling that well this morning John took him back.  He said that he cried a lot and he did have quite a few spasms and one big seizure.  When we got home I called Nurse Betty and told her that he had the EEG today and asked if the neuro could read it today.  I know it was a long shot but I thought it would be very beneficial for our appointment with the keto team on Monday. 

In the mean time Jack's nurse got here and gave him a bath.  His hair was pretty nasty from the EEG.  Then changed his MIC-KEY button.  I usually do this but because it's something that she can do I let her.  Below are pictures of the process.  It may not look very different from the outside but it gets really gunky on the inside. 
Old Button
 
Just waiting

Out with the old
 
His stoma
In with the new

New button
 
And then I got the phone call from the neuro.  He did get to look at his EEG.  He said that he had 11 seizures in the two hours that they were recording.  He is also in modified hyppsarythmia with multifocal spike waves.  Which means that his brain waves are still chaotic.  To me it means bad news.  He was actually out of hyppsarythmia before we started the diet. 

The only thing we have done different is start the Baclofen.  It may have been too many carbs for his 4.25:1 ratio of the diet.  We will find out more on Monday.  He also hasn't been producing as many ketones as we would like.  He has been between moderate to moderate-large.  I must confess that I haven't been checking his ketones because I've felt so bad.  And I haven't been counting his seizures.  Bad Mommy! 

I hope that we will be able to do something either with the diet or meds.  The neuro here said that we may need to modify his meds.  More answers Monday...or more questions. 
I got in the floor with him and stretched his legs, arms, neck and back out this evening.  It must have felt good and loosened him up because he spent the next hour kicking his legs and looking at his lights.  He loves lights!  He can be very upset and we turn on any one of his lights then he calms down.  Sweet baby! 

Today made 13 weeks into this pregnancy.  I'm starting to feel better but I still have bad moments.  For the past two days I have been battling a migraine.  Migraines suck!  And Tylenol doesn't even phase them.  I took this picture last week but my belly hasn't changed much.  Sorry for the bad picture!   

 

Posted by Tracy at 7:32 PM 5 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif


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