To

[Guest guest]

,

Max will be 16 in July. He is 5' tall and now weighs about 97

pounds. (Dr. H. wants him to be about 103.) He was diagnosed with

RSS at 8 months.

I don't know how " severe " his RSS is. That is a complicated

question. He does have a little asymmetry, not really noticeable

unless he is in a bathing suit without a shirt on. Even then, I

think you have to know to look. Max also has ADD and other related

learning difficulties, but he is in our public high school getting

lots of support from some really great teachers. He has suffered on

and off from hypoglycemia and ketones his whole life. Each time he

is sick, we have to monitor the ketones and if they are large, it is

an immediate admit to the hospital. He has been on growth hormone

injections since he was three. He used to be on the chart at the

10th%ile, but he has fallen off and can't seem to get back on the

chart. This illness is not helping, either.

Max has had all the therapies: ST, OT, PT. They helped a lot when

he was younger. Now he sees a psychologist once a week because he

has a lot of anxiety and has shown signs of depression. (He also

has Tourette Syndrome.) She has taken him a long, long way and he

has grown up and matured with her.

Probably Max's greatest problems are in his gut. He has severe gut

dysmotility, which means food just does not move through his system

in a timely fashion. When he was first diagnosed with RSS, he also

had severe reflux, not then associated with RSS. Now these gut

dysmotility issues are more recognized as part of RSS. I guess the

biggest problem is that Max is among the older RSS kids, so he has

gone through a lot before the others have and the doctors have not

always associated it things with RSS. Now there are enough younger

ones around that they can look at him and know it is part of the

syndrome.

Max has been tube fed on and off his whole life. We went through a

few years where he did not need any tube feedings and it was great.

Then, all of a sudden about two years ago, he began to show signs of

reflux and delayed emptying and all hell broke loose. That is where

we are now.

I hope this helps explain a bit about Max's history. I could write

reams and reams about him, but this is a pretty good synopsis. If

you have any questions, please feel free to ask.

Jodi Z.