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janelyb

Update On My Lil One

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Things have progressively went downhill for my little 4.5 yr son the past few months. A few days after xmas we did an endoscopy,rectal suction biopsy, etc....everything was looking good and they didn't see anything wrong.

Well after that he rapidlly went downhill. Not eatting,sleeping, no poop, vomitting,ab destention. Finally 1/14 we did a barium enema....lab tech sugested Hirschsprungs but I told him the biopsy said no. That night was the worse...his ab was so distented I thought he was gonna pop and he was vommiting and no poop. We were told to go to the ER...after 12 hrs he was admitted to the children's unit sent to a surgeon. After some rectal irrigations,xrays and a few more full tissue biospies...Hirschsprungs was confirmed.

He had surgery last week 1/24 with 25% of his colon removed and a colostomy in place. We have 2 more surgies to go in the future. That is basically the short version of the story......

www.myspecialone.blogspot.com

for the full verson

Anyways that is where we are now, finally home after 2 weeks in the children's unit of the hospital.

If anyone knows someone with Hirschsprungs please contact me.

And if anyone knows if there is some kind of link between cleiac or gulten intollerence to Hirschsprungs please contact me too.

Janel

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OMG Janel, I am so sorry to hear all of this, I guess in a way it is good to have an answer. I am not familiar with this condition, what will the future hold for him? Besides the colostomy bag will he have to have more surgeries?

I will keep you in my thoughts and prayers.

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Things have progressively went downhill for my little 4.5 yr son the past few months. A few days after xmas we did an endoscopy,rectal suction biopsy, etc....everything was looking good and they didn't see anything wrong.

Well after that he rapidlly went downhill. Not eatting,sleeping, no poop, vomitting,ab destention. Finally 1/14 we did a barium enema....lab tech sugested Hirschsprungs but I told him the biopsy said no. That night was the worse...his ab was so distented I thought he was gonna pop and he was vommiting and no poop. We were told to go to the ER...after 12 hrs he was admitted to the children's unit sent to a surgeon. After some rectal irrigations,xrays and a few more full tissue biospies...Hirschsprungs was confirmed.

He had surgery last week 1/24 with 25% of his colon removed and a colostomy in place. We have 2 more surgies to go in the future. That is basically the short version of the story......

www.myspecialone.blogspot.com

for the full verson

Anyways that is where we are now, finally home after 2 weeks in the children's unit of the hospital.

If anyone knows someone with Hirschsprungs please contact me.

And if anyone knows if there is some kind of link between cleiac or gulten intollerence to Hirschsprungs please contact me too.

Janel

I do not know of your childs condition, but I do wish the best for all of you (your family). I am sorry to hear of what your family has had to endure this illness. The smiles on your faces makes me happy to see that inspite of it all here you are still happy and smiling. Great attitude. If I see any thing on line I will keep you in mind. BEST WISHES for your familys future.

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OMG Janel, I am so sorry to hear all of this, I guess in a way it is good to have an answer. I am not familiar with this condition, what will the future hold for him? Besides the colostomy bag will he have to have more surgeries?

I will keep you in my thoughts and prayers.

Basically we have 2 more surgeries. The next one in about 2-3 months will be a pullthrough. This means they will reconnect the healthy colon to the rectum, then let it rest. The finaly surgery about 2-3 months later is the closure of the colostomy. And then things should work pretty close to normal for bms.

For those curious what Hirschsprungs is here is a great description:

Hirschsprung's disease is a rare congenital disorder that causes an obstruction (or blockage) of the intestine. This prevents normal bowel movements. You might hear doctors refer to this condition with other names, such as congenital megacolon or megarectum, aganglionic megacolon, Hirschsprung-Galant infantilism, Mya's disease, Ruysch's disease, or colonic aganglionosis.

Children with Hirschprung's disease do not have certain nerve cells, called ganglia, in the walls of their bowels (another word for intestines). These nerve cells help relax the bowel (or intestinal) wall to allow fecal matter to move through the colon. The absence of ganglia is due to a genetic problem. When a child has Hirschsprung's disease, his colon stays contracted, so that bowel contents build up behind the blockage. The condition usually affects the last 1

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I will keep you in my thoughts as you continue to prepare for the upcoming surgeries. At least in the end he will get rid of the bag and may have normal bm's. That sounds promising. Keep us informed.

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I don't have much help for you...but I just wanted to send you lots of support and well wishes for the health of your little boy. It's so hard seeing our little ones suffer! I'm sure it's been difficult with the surgery and hospital stay, and I'm glad he's home now. Best wishes, and lots of hugs...keep us posted on his progress!

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Hi I just want to add to my support because during the diagnosis process for celiac they believed my son had Hirchsbrungs (sp) too. I sympothize with your son's symptoms as my son also could not poop at all. Even to pass soft poop was close to impossible and nothing helped, enimas, suppositories, laxitives, nothing. He also had the barium enima at 4 years and it was extremely traumatic for him as I am sure it was for your son. After going gluten free following the Celiac diagnosis he got a little better but the syptoms persisted in a sort of cycle until last year when a doctor did another colonoscopy and said he saw signs of another food allergy. I took him off milk and had a pretty good year until it started again now. An ER doc told me to go back to the gastro and discuss the short segment Hirchsbrungs. That was what they planned on testing for next if he didn't show improvement. So even though my son does not have it I can truly understand what you are going through as this is where I thought we were headed. I hope he gets better soon without too much more discomfort. Before the diagosis, was he able to poop at all and if so how often? I had one doctor tell me that if my son had it he wouldn't be able to pass anything ever, which makes no sense because for a child to get diagnosed at 4 he has had to have pooped at some point up until then.

Nicole

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Kareng, I am a bit concerned by your statement here.  I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups.  And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet.  I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have tot
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