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.

 

 

6 Comments

  1. BLanch Sep 20, 12
    • Tammy and Parker Sep 21, 12
  2. Claire Sep 21, 12
  3. Claire Sep 21, 12
  4. Lisa L Sep 28, 12
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