Tricky CHARGE baby...ideas please?!?

Hi all,

A patient of mine is testing me, ideas appreciated.

A 14 month old boy with CHARGE syndrome, sickly infancy, medically stable although peg fed into jejenum. Multiple problems with infections etc with the peg. I believe this has caused the child pain and is one of the contributing factors to his lack of tolerance for prone and sitting.
Overall low muscle tone and uses extension to avoid positions etc. :o
In supine-plays with feet on facilitation, rolls to prone, equilibrium developed
In Prone-Elbow support, tolerates 1 mintue before becoming upset+++
Head to 70deg, no antigravity legs, no antigravity stomach
In supported sitting-Hates+++ Extends, unable to hold into position
Side sitting-No tolerance, extends
Stride sitting over thigh, tolerates better? less pressure on abdo
Kneeling, high and low (4 point and at a surface)-Tolerates 1-2 mintues, dislikes, extends given any opportunity
Standing-Improving, tolerates sit astride to standing

Transitions, impossible given lack of tolerance for positions. He gets so worked up therapy sessions become intolerable.

We had been working on the prone play with a wedge and a cut out doughnut for the peg without success. So I have gone up to the standing position and working on a sit to stand here which is about the only thing apart from supine that he is willing to do.

I am Vicky Meade trained and tried everything I can think of. Any special ideas anyone. :o

Hi Phunphysio,

This is not an easy question to answer for two reasons:
-I have never treated a child with Charge syndrome and
-I had never heard of Vicky Mead uptill this point (amazing how many people are out there, doing good for our profession and we just do not know about them)

I have seen similar behaviour in children with PEGS.
I wouldn´t be at all surprised if the PEG does hurt and that this is the main reason for them not wanting to lie on their stomach, or sit.

One infant I treated (with a huge amniocele) and normal cognition, was able to "tell us" that it hurt him. This boy was carried prone, with no pressure on the stomach and that was OK, He developed well even if he couldn´t use all the so-called normal motor milestones.

In that respect I love the work of Karen Adolphs (and Mijna Hadders-Algra)who have been advocating that variablity in movement (& transitions) is normal and possible.

I would suggest you try to make physio as fun as possible (something you normally do I am sure).
Make his goals yours.......

I have seen more children, who refused to do anything prone, crawl around as youngsters after they had started walking.

kind regards

Esther

dear phunphysio,

The ISEI has information about the CHARGE syndrome:

PTRL Submission Form

Esther