Claytons SUrgeon's visit - I cant get good news (possible hirshprungs)

[Guest guest]

Hi all:

Well we saw the surgeon today. After waiting almost and hour and a half we

finally saw the surgeon. The surgeon was very nice and he already spoken to

Clayton's Gi. The diagnosis was severe reflux and he definitly needs to have a

fundo and a g-tube. I was given no choice on the g-tube. Both the GI and

surgeon said that clayton was not getting enough nutrition and this was

clearly having an effect on his development. However, the surgery will not be

done until the end of August.

However, that above was the easy part. We did not even get to go through my

whole 2 page typed list of questions because before the surgeon does the fundo

he now wants to rule out Hirshprungs Disease. He said that there is a 50-50

chance that he has it based on claytons records and symptoms. Originally

clayton went to the bathroom 7-10 times a day all liquid. Then at 6 months he

was put on Neocate and now does not go unless he has medication (lactolose 2

times a day) and then his stools are very hard and he still only goes very

infrequently. He often is in pain when he poops. He also had an echogenic

bowel (bright bowel) on all his ultrasounds during my pregnancy. Also he did

not pass the mercronium for more than 48 hours. The surgeon now clearly wants

to rule this out because he said if it is hirshprungs this would take

presedence over the fundo. I just wanted to cry in his office and did cry in

the car on the way home from the hospital. How come I can never get any good

news when I go the doctors. I know many of you have mentioned to me before to

ask about Hirshprungs but since clayton did not seem that sick I never did and

figured that the GI and pediatrician knew about his bowel habbits and that if

anything was unusual they would have said something.

Now we have to get the following tests next week:

On tuesday morning they are going to do a bariumum enema: - Can someone tell

me what this is, how they do it, etc.

On either Wed or Thursday they are going to do a rectal biopsy - he said to

look for cells or absence of cells. They will probably do this under sedation

in the OR due to Clayton being 15 1/2 months. Again can someone tell me what

they are looking and anything about this procedure.

Also I have heard people talk about Hirshprungs but really do not know what it

is and they symptoms. Any info or links would be appreciated. Also what is the

treatment? I thought that this is something that was diagnosed at birth>

Anyway sorry for being such a downer but I expected to go see the surgeon and

have him tell me about it and then scheudle it. I did not expect to hit

another brick wall.

Any help would be appreciated.

Love,

Sharon

mommy to Jake (5)

Clayton and Cole (15 1/2 month old fraternal twins)