Sunday, September 24, 2017

Random Thoughts and Hurry Up!

It seems very weird to be wanting a surgery to come soon but in this case, we do!  Byron's teacher let us know that he can no longer be in school without an aid.  He is being disrespectful, disruptive and in her words "He is not learning anything, He is not retaining anything."  This is classic ESES regression.

For so long we didn't see regression with Byron's ESES, but now that he is also having clinical seizures at night as well, his poor overworked brain can no longer handle it.  

We have introduced CBD oil into his daily medication regime, which seems to be helping a bit with attention.  We are using Charlotte's Web, Advanced Formula.  We give him 1ml in the AM and 1.5 ml in the PM.  Each .6 ml has 50 mg Hemp oil.  Each dose is about 90 minutes from his other medications. 

This CBD oil costs about $250 per bottle, not covered by insurance, but at this point it's worth it.  Speaking of medication costs, if we didn't have insurance, the new medication he is on -  Onfi - is $1,375 per month.  

Byron is on Medicaid due to the extent of his disability and it is because we live in New York State that it pays for most everything.  

My iPad created this little musical slide show for me this morning.  It reminds me of what a sweet boy he is!

Tuesday, September 19, 2017

New Seizures and Waiting

Last Monday Byron had the MEG test which is a combination of an EEG and and MRI.  He did pretty well but one of the objectives was that he sleep in the machine for an hour.  In order to make this happen I was required to keep him up until 2:00 am the night before.  This was the night that Hurricane Irma hit the coast of Florida so there was lots to keep us up but Byron started to fade out completely by 12:00 am.  So off we went to McDonalds in his footy pajamas.  The young man behind the counter asked us if we were going on a road trip and we just smiled and said no.  We brought the food home and watched "Captain Underpants" until 1:30 which was all Byron could take.  

The next morning Bob woke Byron up at 6 and took him to the test. But he didn't sleep!  Sheesh!   Even so, we do think they got most of what they needed.  We won't know the results until the end of September. 

On Thursday of this week we go to New York for an updated Nuero Psych evaluation were they will see if there has been any intellectual regression since the seizures have gotten so much worse.  

I asked the doctor what the next steps are and she said they are waiting for the MEG results and then he will be represented to the surgical team.  In the mean time, Byron woke up completely disoriented yesterday.  He obviously had a bad night with seizures.  He could not even dress himself.  I chose to send him to school anyway because he seems to be getting better, but he was sent home again at noon.  He is much better today.   I put a call in to the doctor but haven't heard anything yet as of this morning.  


Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February ...