Eagle-Barret yndrome/Prune Belly Syndrome - anyone know about this?

[JoandMax]

Hi all,

This s just a quick post but my 6.5 month old DS was diagnosed with this yesterday, we have been told it's life threatening and things will be very difficult. We were in too much shock to ask lots of questions so wondered if anyone on here knows of this condition and can give me any advice.

Thanks

[Jux]

so sorry.

Make another appointment asap to discuss it and the implications. Ask about support as well.

[RunningOutOfIdeas]

I do not know much about this syndrome, but did not want to read and not reply.

I think the major concern is usually around the kidneys. So when you have your next appointment you might want to ask about how your DS's kidneys are functioning and how frequently they will be checked. Also, he might need some surgery to correct problems with his urinary tract.

I am sorry I can't really give you any usuful advice.

[DirtyMartini]

I don't know about it either, but if you don't get many replies this time, don't let it stop you posting here again. If nothing else you can vent here and people will be supportive.

So sorry about your DS -- you must be very concerned.

[JoandMax]

Thanks all, have just left a message with the consultants secretary that we need an appt asap.

He has had a bad UTI but normal MCUG and DMSA since which is reassuring. He has horrendous reflux and fed via NG tube and some physical developmental delays but is the happiest smiliest baby I've ever known.....

Trying very hard to hold it together for his sake and also my other son who is 2.3. We just so hoped everything would be ok and he'd just had a tough start. My DH is trying to get out of work early today, we need to all to together at the moment.

[DirtyMartini]

Hope your dh can get home. ((hugs)) to all of you.