Re: FUNCTIONAL CONSTIPATION

[Guest guest]

Greetings To You Pete and Alice!

Wow! Sounds like little Dorothy has been through quite a bit in her short

life thus far. I am Barbara Martz from Western Pennsylvania, USA and am the

wife of 17 years to Bob. We have two sons, who is 8 years old, and his

little brother Jonas who is 2 years and 8 months. Jonas has MDS with 30%

effected cells. He was born with A-V Canal also, so I am very happy to hear

that your Dorothy is doing well after her surgery. One of Jonas' holes in his

heart has closed spontaneously despite the doctor's caution that this was not

possible. He is left with a ASD, and it is getting more minimal all the time.

Because he is doing so well, no surgery has been done yet, and we are returning

to the cardiologist in December. He takes no medications.

I wonder if Dorothy will eat yogurt? Jonas eats it like it is going out of

style, and he never ever has a problem with constipation. The doctor at the Down

Syndrome Center at Children's Hospital of Pittsburgh told me that he has seen

some evidence that yogurt can help folks with bowel trouble. I have ulcerative

colitis myself, and someone told me that they eat yogurt each day and it has

cured their colitis?! I do not know if it is true because I hate yogurt. ( I

will learn to like it the day this colitis kicks up and causes me a great deal

of trouble though!) If your daughter will eat it once or twice a day it may be

worth trying for her. The other thing I am wondering is if a gastroenterologist

has seen Dorothy? It seems like she should be taking some kind of stool

softener if she is not. I wonder about the doc using a laxative that could be a

thing that she could become dependent upon? Just my own thoughts, not knocking

your doctor! Well, I hope that you can find some good suggestions here on this

group. I am sure that there are others who have gone through or are going

through the same issues you are facing. Best wishes,

Blessings,

Barb Martz

Mom to

Jonas 2 (MDS) & 8

FUNCTIONAL CONSTIPATION

Hello everyone,

My name is Pete and my wife is Alice whose daughter is Dorothy, aged 15

months. Dorothy was diagnosed with MDS at three weeks of age and subsequently

had

AV Canal Heart Surgery at 4 mos. Since then she has had problems (unrelated to

her heart which has been functioning perfectly) with severe constipation which

leads to her not eating and throwing up. She has been in the emergency room 8

times since October 2002 with this problem and we, unbelievably, are now

just beginning to be told by the doctors what the problem is.

The answer is that there is no answer and we will just have to manage this

problem. Dorothy has been tested negative for Hirschprung's and, according to

the geneticist, her body processes are working as they should.

It took us this long to be informed of this and Alice and I , as parents,

feel we have let Dorothy down for taking this long to have this problem

identified and having to put her through so many unnecessary emergency room

visits,

etc.

We just wanted to throw this out there to see if anyone has a child w/

functional constipation problems and can share their experience with us. We

would

particularly like to know what is being done to manage the problem.

As of right now, Dorothy is taking a prescribed laxative and her formula has

been changed to Pediasure. She has only ever eaten formula and has eaten some

baby foods but eventually rejects it after several weeks.

Thanks,

Pete, Alice and Dorothy

from Baltimore, MD.

[Guest guest]

Pete and Alice...

I remember we talked before about the possibility of Hirschsprung's... I'm so

sorry that there was no diagnosis for your daughter!! How completely

frustrating that must be for you both!!!

Is she doing better with the laxative and pediasure??? Are they saying

that it's just something to be monitored by her diet the rest of her life?

I hope all is well with you otherwise!!!

Angel

Mom to 10 MDS/Hirschsprung's

Tyler 11, 8, Jaeda 7 and Shayne 12 mos