September 15, 2014

If It Wasn't This It Would Be Something Else

Last Monday was so different from today.  Addison was off his meds.  We booked vacation.  Life was good.
And then things went down hill very quickly.  And to be honest, I was having a hard time being positive.  We have kept to ourselves the last few days until we were able to arrive at a place where God needs us to be. 

On September 6th Addison had his last dose of prednisone.  By Monday he was a completely different child.  He was smiling and laughing.  Attempting to move and play.  He became very inquisitive and was interacting with his environment.  He was still struggling with sleeping and eating but that is to be expected as his body adjusts to yet another change in his cortisol. 

We are so grateful for those wonderful 48 hours.  They remind us of Addison's potential.  They show us, that even through all of this, our amazing guy is in that tiny body fighting to come out and go at life with the Wachter gusto. 

And then the seizures started again.  And we tried to tell ourselves we were being over sensitive and it was just muscle weakness causing him to lose his balance.  We couldn't deny this turn of events any longer after Addison had a seizure in a meeting with 2 of his therapists on Friday evening. 
Addison's neurology team has booked him into CNMC in DC for Wednesday and Thursday to have another 24 hour EEG.  They will evaluate the seizures, look for hypsarrhythmia and make a new plan. 

There is great concern about attempting a third round of prednisone.  We have already seen how adversely it affects Addison.  And the jury is still out as to whether there will be long term consequences from extended use of extreme doses.  However, Dr. R is trying to balance the risks of prednisone with the high risk of vision loss if we go with the non steroid treatment, Vigabatrin.

There is another steroid alternative, which has a higher success rate than prednisone.  We face two major obstacles with ACTH.   It is very expensive with a months trial costing around $125,000.  That makes it very difficult to get insurance approval.  Even with approval, it could take 3-4 weeks to get the medication.  And even if you get through all that, Addison's doctors hesitate to prescribe it because they have seen insurance companies pull their approval in the middle of treatment.  Once a steroid course is started, it must be followed through to the end.  To do otherwise could be life threatening.  Which would leave us with the question of how to pay for it.

By Friday night the general mood of the family had deteriorated.  Even though I didn't have a positive bone in my body, I tried to say something encouraging to the girls.  And that's when I realized even our backup system had at last failed.  Brianna told me she just wanted to be depressed.  Everyone seconded the opinion.  And I couldn't argue.  Because I was just as discouraged.  I, too, was struggling to praise the Lord as I had on Monday when I first saw that beautiful smile.

The idea of putting Addison back on medication which will shut him down again, is devastating.  He is just starting to come back to us.  But if he is truly having seizures, there is no other choice.  To do nothing would be guaranteed to limit his potential for life. 

So there was chocolate.  And we watched Pollyanna.  And we organized closets.  This particularly scared Allen, because we started with his closet.  Organizing is my first line of defense in stressful situations.  Usually, the kids run the other way.  But they got involved.  Which was testimony to the stress level of the family. We ended up matching all the hangers and lining shirts up by sleeve length and color. 

Yes, it was that bad.

Which brings us to today.  And once again to the acceptance that only God knows the perfect plan for Addison's life.  No matter how very much we love him, the Lord loves him more.  This is still part of the plan.  We are just vessels to carry out the Lord's perfect will for Addison's life.

4 comments :

  1. What a awful disease infantile seizures are. Does it have to be prednisone to stop them? Can't they use anti seizure meds like Depakote? Wishing all the best for him. Of course the dang insurance issue just complicates the situation.

    ReplyDelete
    Replies
    1. Hi, Kristin.

      That is a good question. Infantile seizures, as presented in people who have Down syndrome, is a unique form of epilepsy in that it can sometimes be reversed or cured. The chaotic brain waves, known as hyppsarrhythmia, can often be stopped and normal brain function restored by rebooting the brain, much like you reboot your phone or computer when it gets hung up. The high doses of steroids interrupts the chaotic brain waves and allows the brain to begin communicating normally. In comparison, anti-seizure medications like Depakote or Phenobarbital only treat the symptoms. You might think of how ibuprofen helps with the fever and body aches when you have the flu but it doesn't cure you of the flu.

      Blessings,

      Kat

      Delete
  2. Continued prayers for Addison and for your whole family. Praying God encourages you all in some special way today.

    ReplyDelete
  3. Hi Kat.
    Just popping by again to say hi. Soo much going on for you. Praying for God's amazing peace and grace to just flood your home!!

    ReplyDelete