In Theory: ‘Adult’ medications and medically fragile kids.

 

 

Up to Primary’s we went today.

Again.

We met with the ENT and talked about our experiment to see if Parker’s reflux issues have come back.  There was no blue in his trach nose, so it’s looking as though that isn’t the cause of this aspiration pneumonia.

Next we discussed Parker’s aspiration problem.  One thing lead to another and before I knew it we were on the schedule to tighten Parker’s epiglottis some more.  The first time we did this we proceeded with great caution to see how Parker would handle this surgery.

He did great.

So back we go to tighten it up again.  This would help with his aspiration issues AND (hopefully) allow us to feed Parker by mouth a little more often.   We’ll know at the first FEES after this next surgery if tightening things up will help protect Parker’s airway from more stuff.

 

Little feet where they are NOT supposed to be.  Oh, yeah.  He’s a Hodson boy all right!

 

I was feeling pretty confident until the B word was mentioned.

Botox.

When applied to the salivary  glands, botox helps to reduce a kid’s spit.  Since Parker aspirates on his spit, the idea is that less spit would mean less aspiration pneumonia.

You know, in theory. 

It’s truly nervous making how many medications are given to kids ‘in theory‘, due to the fact that they have never been officially tested on kids and approved by the FDA.

Another road block we face is whether our insurance will cover Botox used in this way.  Seems as though one of the new rules of our private insurance is that Botox is just for cosmetic reasons, not to help keep kids from aspiration on their own spit.

Seeing as aspiration plays a big role in Parker’s Pulmonary Hypertension, eliminating them as much as possible is very important.

You know, in theory.

sigh.

 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. BLanch says:

    It’s always been for just cosmetic reasons. The docs get it approved another way. They always do. We have yet had to fight for it to be given,and we are religous, 6 weekers.

  2. Claire says:

    There seem to be quite a few studies out there for its use with chidren with problems with excessive saliva and some for treatment of swallowing problems. This one is the most modern I’ve found so far. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-80342012000200021&lng=en&nrm=iso&tlng=en

  3. Claire says:
  4. Lisa L says:

    I used to work with a little girlt that would choke and gag on her saliva. She had the botox injections and they worked very well for many months. Hope they work for Parker!!