RE: Jonell CF or Hirshsprungs????

September 5, 2000

Didn't know at the time I sent the e-ma

September 5, 2000

why would you think that......i dont think so.......jonell

jfkdc@... wrote:

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> I think you'd " rather " have CF than Hirshprungs. . .

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September 5, 2000

Jonell, yep, you would think that it would be more likely since you already

have one child with Hirshsprungs...which is why I asked. I really wondered

about that because apparently Cf and Hirsh. are two differential diagnoses

that have to be done with kiddos with bowel obstructions as newborns.....so

really you would think b/c of family hx they would want to rule out the

Hirsh. first. It sounds like you are right, too, on the rectal biopsy, I

have always heard that is the way to diagnose it.

On the comment that Hirsh. would be worse? Can't remember who wrote the

comment, but maybe they were thinking b/c of the colostomy? But I can see

that, as a parent, you would be more concerned about the CF. (Hirsh. is not

a " life shortening " or " fatal " disease, is it? I guess I really don't know

that much about it, except that sometimes kids with Cf were initially

misdiagnosed as Hirsh.)

I also wanted to respond to you about reflux/GERD. If that is what the baby

has (and that turns out to be all the baby has), then rejoice.... Yep, as

Becky and others can tell you on this list, the first year or two can be

difficult with a baby with severe GERD....(all 5 of my biological kids had

some level of GERD, with Mallory and tying in first place for the worst

cases, and Miranda coming in at close second) But, compared to CF or Hirsh.,

its like a walk in the park. My advice would be to take lots of beach towels

with you everywhere you go, and to take a clean shirt for yourself

everywhere, too. We learned very early on (after having to buy restaurant

shirts, liketheir t-shirts, several times) that a change of clothes for Mommy

or Daddy is as important as one for baby (thankfully, we were sharp enough to

figure it out with Miranda....) Also, beach style sand buckets work well for

them if they don't outgrow it by a year...Mallory takes a " puke bucket "

everywhere she goes....

OH, and if they try to put him on zantac, and he hates it, ask for

Prilosec...it was a Godsend with ph..we started giving it to him at only a

few weeks of age, I would just line the beads on my nipple (he was

breastfeeding), and it was no problem to get them in him. Later, I just

dumpted them into his mouth right before he latched on, you could do the same

with a bottle, too, or squirt formula inwith a syringe to wash the beads down

(zantac is NASTY tasting, as is Tagamet.....) The hardest thing these days

about managing reflux is that Propulsid was pulled from the market...

Good luck to you, and we will be thinking special thoughts for you and your

family, whatever the outcome.....

take care,

Jen

Mommy of 7, including ph 14 months with CF, Mallory 2 with CF, RAD, GERD,

OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo

foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon to