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Posted by Pippa Duffy
on July 12, 2009, 0:25:19
86.161.168.18
Finally, after numerous phone calls, got a call from Dr Ali on Friday. Apparently, Leo's still keeping them guessing to a degree, in that his biopsy slides don't present as a classic Hirschprungs case, as there are nerve ganglia present, but those that are are extremely immature, almost unrecognizable. The nerve ending distribution in the sigmoid region of his LI is also very typical of Hirschprungs. So they're saying it's a 'Pseudo' Long Segment Hirschprungs or Immature Gut. But they've sent his slides over to a clinical expert at GOSH for his opinion, because to do a removal of a large section of bowel is obviously a serious decision, so they need to know they're doing what's right. I'm a bit worried, because in my research, I've found a couple of references to this op (a 'pull through') being much less successful in children with Tri21/DS and so the advice is to do a permanent 'ostomy' instead. If Leo does have to have a permanent bag, obviously it's not the end of the world, but it would be 'another thing' for him to be trying to deal with, and we don't yet know how capable he'll be in this aspect, so I feel a bit 'future sad' if he does have to have this, as it'd be another reliance on others, and our hopes for him are to help him be as independent as he can be........ If the expert says it's an 'immature gut' what I don't know is if/how long it might take to mature or what the cut off would be, but the way I see it, the longer he's on a bag, the less likely his LI is to be able to work again, given that a sluggish GIT (gastro intestinal tract) is one of the common conditions that goes along with having an extra chromosome. If surgery is on the cards, then the next question is whether it's before or after his OHS...... I'm imagining after, unless the outcome is better the sooner they do it. I think I really need to get a joint 'plan' from the two teams. Given how hard it seems to get any answers, that'll keep me busy! Anyway, just needed to get this bit off my chest, and I'll update you as and when I've heard more from the second opinion. PS Leo's particularly scrumptious at the moment! x
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