new member - hello everyone

[Guest guest]

Hello,

We have just discovered this site and thought we should introduce

ourselves....

We have a 13 month old son who has been diagnosed with PMG (originally

Lissencephaly but we now have this additional information). Until 20

weeks, we had no idea at all that he had any problems!!!

He cannot roll, sit, walk, crawl or babble, he has poor control of his

limbs and poor motor skills (CP). However, he can smile and chuckle.

We have been told that the PMG affects over two thirds of his brain

but other than that we don't know any further details regarding

genetics etc.

He has severe gastro-oesophageal reflux which is thankfully controlled

by medicine but feeding has been an issue for a long while (not

interested, low weight gains, NG tube)

Would love to hear from anyone regarding feeding strategies.

[Guest guest]

,

Welcome to the group. I have a son (he is a fraternal twin, his

twin brother is typical) who is 2 1/2 and has PMG. He also has a

partial deletion of chromosome 13q, under developed brain stem,

retinoblastoma, severe reflux, g-tube, 2 failed nissem

fundoplications, chronic ear infections, ear tubes (3 sets), non

verbal, non -mobile, low tone, global delays.

Ethan did not roll over until about 9 months old. Then he really

only rolled from one side to another. He can roll all the way over

now, but hates to be on his belly so almost never does. He can

finally sit with support at the hips (this started this year), and

just recently started to weight bear a bit (about 5 seconds) when

held up.

I can't tell you how much of his development is affected by PMG or

by another of his diagnosis. However, I can tell you that he is a

wonderful child, very happy and easygoing. Also, we went to the g-

tube as the feedings, even with NG tube, were horrible. He became

completely oral aversive and would take nothing by mouth. We did the

nissems as he would still reflux even on medications. Then he

herniated his stomach and blew the first nissem. Did another and he

had that one fail as well. After 2 aspiration pneumonias we finally

did a roux-n-y esophagojejunostomy. This is a bit drastic, but we

had no other options for controlling the reflux. The procedure

basically disconnected his esophagus from his stomach and connected

it straight to his intestines. Now everything he swallows goes into

the intestines and bypasses the stomach. We do still feed him into

his stomach via g-tube, he just can't easily reflux it now.

I think reflux is fairly common with kids with PMG. I know lots of

them have a feeding tube. I think we have had to take more drastic

steps to control it than most, so don't consider what we have done

as the norm. However, it is not uncommon to need to medically

intervene.

Feel free to ask any questions you have. The people here are a great

source of knowledge.

Good luck,

C

>

> Hello,

> We have just discovered this site and thought we should introduce

> ourselves....

> We have a 13 month old son who has been diagnosed with PMG

(originally

> Lissencephaly but we now have this additional information). Until

20

> weeks, we had no idea at all that he had any problems!!!

> He cannot roll, sit, walk, crawl or babble, he has poor control of

his

> limbs and poor motor skills (CP). However, he can smile and

chuckle.

> We have been told that the PMG affects over two thirds of his

brain

> but other than that we don't know any further details regarding

> genetics etc.

> He has severe gastro-oesophageal reflux which is thankfully

controlled

> by medicine but feeding has been an issue for a long while (not

> interested, low weight gains, NG tube)

> Would love to hear from anyone regarding feeding strategies.

>

>