August 19, 2014

Answered Prayers and Not Quite a Celebration

We saw Addison's neurologist Monday morning to review his latest EEG and make the next steps in the plan.  We saw a big answer to prayer as the EEG from Friday showed NO Hypsarrythmia and no activity associated with hypsarrythmia.  That is the great news.  We began weaning him off the prednisone on Monday and will finish the three week process with his last day of steroids being September 7th.  He will have a standard (1 hour versus the 4 hour) EEG on the 10th to see how he is responding as he comes off the medication.  We will meet with his neurologist again on September 16th.

The EEG also showed the right side of his brain has higher peaks in electrical activity.  This means the right side of his brain is more prone to seizures.  And unfortunately we don't know what that means.

It could be something that will improve as he finishes out the course of meds. 

It could stay as is. 

It could mean he is at a greater risk for developing another seizure disorder as he grows.

It could mean there is something wrong on the right side of his brain which is the cause for the seizures.  Which could mean a plethora of things.  Tumor... stroke... lesions... brain injury. 

 It could be nothing. 

An MRI can help determine if there is something going on in that precious little brain of his.  For whatever reason the neurologists have ordered this test repeatedly and for whatever reason the hospital can not seem to get it scheduled.  I can't help but think the Lord has some reason for delaying it.   Dr. R. sent another order yesterday and his assistant was supposed to contact that department and find out what is up over there.  Regardless, Addison will need to go under sedation so perhaps it is better he hasn't had it done yet. 

The bottom line is we can not know much for certain.

Actually, we always head to see Dr. R thinking we are going to get some answers and put things to rest and we always come away with more questions than answers.  As we were asking questions Dr R again pointed out... "We just don't know.  We are on the cutting edge of Infantile Spasms.  And there have been no studies in kids with Trisomy 21." 

That gave me a sick feeling in the pit of my stomach.  And it took me a full 24 hours to figure out why it was nagging at me so badly.  I think it is this.  Yes, Infantile Seizures is very rare in the general population.  But 10% of children with DS are diagnosed with IS.  That's a lot if you consider 6000 children were born in the US last year with DS.  There have been a number of studies in the last few years.  Lord knows I think I have read all the medical journals in the last month pertaining to Infantile Seizures.  In fact, Addison is part of a study group at Children's right now.  So my question is if those with DS are the majority of the population with IS why have the studies not involved children with Down syndrome up until now?  I couldn't help but wonder if it isn't because, as a general rule, people still don't view kids with DS as worth the time or effort.  From our local school system I was told kids with DS will only read at a 4th grade level when they graduate high school.  (Which by the way I think can be much better).  And so perhaps there is also a message that if they are going to have learning disabilities and low IQ's anyway why worry about taking care of their brains. 

Don't get me wrong.  I in no way mean to imply this is the belief of any of the people who are caring for Addison.  They are all very personally invested in helping him come out of this victorious.  But I do have to wonder why studies aren't including the Down Syndrome population.   Maybe I'm being too sensitive.  But I think it is still a reasonable question.      

Anyway, the bottom line for our visit was we come away with a good report.  And I think Dr R is the only person in the world who can give you good news and leave you feeling worse than when you went into his office.  We feel he is an excellent doctor and certainly tops in this area but somehow it is hard to rejoice when we have more questions than we started with.

Dr R did reiterate we should expect it to be many months before Addison's brain is healed enough to be making connections that will allow him to begin the learning process again.  He will be starting at about ground zero.  Most days we are okay with that.  We know God is in control.  But there are times when it seems so daunting.  Sometimes we have to work to stay positive when he see him continue to go down hill.  In the last week he has even, for all intents and purposes, lost his ability to sit up.

A friend of ours stopped by with her adorable (and oh so chubby) 5  month old on Saturday.  We enjoyed loving up on him so much.  But seeing him made Addison's regression even more pronounced.  For starters our little friend weighs a pound more than Addison now, who is three times his age.  As I held his fingers he supported his own weight.  N is almost sitting up already.  He is learning to eat purees and can feed himself a bottle.  Our darling 15 month can not do any of those things today. 

But we are getting ready.  We are lining up our ducks for the day.  We are working with his therapy team to start putting together a new and revised plan so we are ready when he is ready.  We are also exchanging emails with a neuro development specialist to gain information which will hopefully help Addison regain some of that brain power a little quicker. 

Monday morning I was studying in 2 kings about when Naaman called to Elisha for healing and Elisha told him to go for a dip.  Naaman wasn't happy with that response because it wasn't what he expected. God has many ways of carrying out his will and sometimes it doesn't look like we think it should. But we still love him and we still thank him for the ways we see him working.

2 comments :

  1. I'm sensing a common theme in your posts... :) As much as everything sucks I'm glad we get to go through this together.

    Love you.

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  2. Thank you for the update. Little Addison has been weighing on my heart and mind lately. I am glad to hear there has been some improvement, even though you aren't seeing it in his abilities right now. So sad to think some people don't think children with DS are worth their time or effort. We know that society feels this way simply by the number of DS babies which are aborted every year. But we know that God loves your little guy, and has plans for him. He knew just which mother to give to this special child, as you are being so strong for him even though I am sure you heart is hurting.

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