October 14, 2009

Recovering and Restarting



My last post was about Dylan being sick again. After being sick with watery diareaha and vomitting for 6 days and not eating and barely drinking and not getting any help from pediatricians at home we decided to make the trip to Cincinnati to see Dr. Levitt. He had told me in an email to do rectal irrigations 3x a day, but Dylan just kept getting worse so of course I was scared and wanted Dr. Levitt to see him. Dylan was feeling a little bit better when we got there, we saw Dr. Levitt and he diagnosed enterocolitis (an inflamation of the intestines)admitted him so the nurses could continue the irrigations and the plan was to do IV fluids and antibiotics. Things worked out fine and we even lucked in to avoiding the iv. We came home and Dylan did a complete turn around....

This goes to show you that with Hirschsprungs children, a surgery isnt the absolute fix, children still go on to suffer and always will have a life time risk of getting enterocolits which can be dangerous if left untreated. We have always taken our journey with Hirschsprungs one day at a time, thats all you can do. It is a struggle that you just pray doesnt keep getting worse and hopefully gets better and pray to see that light at the end of the tunnel.

6 comments:

  1. Hello. I am scanning lots of blogs about education and decided to look to see what is out there for hirschsprung's. A horrible lack! My son was biopsied three different times to determine whether or not he had it because he was not symptomatic until he was about 2-1/2. He had maybe two or three ganglion in his slides, so the diagnosis didn't fit. He is now eight and has a cycostemy tube (a feeding tube placed in his upper intestine) through which we've irrigated every night for the past three plus years; it's not unpleasant at all and quite routine now. Acid reflux is haunting him now as well, so keep an eye out for that as you go on your journey. He suffers, but is thriving physically, and we believe and know that he can do anything he wants to do, except maybe eat hot dogs everyday. I'd love to share more with you all about finding genetic markers to protect our grandchildren from this disease. I will come back again!

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  2. Thanks! My reason for this blog is just that, to show what these children with this rare disorder go through....awareness educates and saves lives! would love to hear more from you as well...Sounds like your son is doing rather well, hope it continues! Best wishes to good health...your welcome to stop in here anytime!

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  3. Dear Hosta, Paucity (less) ganglion cells in the biopsy may be seen in Intestinal Neuronal Dysplasia (IND), which is similar to Hirschsprung's disease.You can check with your doctors.

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  4. Hi my name is Traci. My daughter Kaitlyn has a long GI history. Eosinophilc gastroenteritis,GERD,chronic constipation,dysphagia....She has outgrown most of the issues but now her GI doc thinks she has Hirschsprungs Disease. We are scheduled for a anorectal manometry,suction biopsy, and a colonic marker xrays. This is all new to me . We just thought she had constipation issues which causes her belly to be distended all the time(it is huge)She was admitted to Phoenix Childrens hospital for a colon clean out for five days. She has been out for three wks and the doc did a follow up xray and she is now full of stool again only after 3 wks. Although she has 3-4 BM's a day. This is why they are now testing for Hirsch. What were your sons symptoms and how did they diagnose him ???? Did he require a colostmy bag and the pull through surgery????So glad to see this blog. I feel like it's just one thing after another with Kait. I will keep you updated when we get the final results back.

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  5. My son did have to have a colostomy, but when he was born he couldnt have a bowel movement AT ALL...we were sent to a childrens hospital out of town, where they kept him in the NICU and did lots of testing...He ended up having a bowel perforation, and had to have emergency surgery to form a colostomy. It took several biopsies and a few months to actually diagnose Hirschsprungs. It can be very tricky to diagnose. After we got the diagnosis though, we went ahead and scheduled the corrective surgery to take down the colostomy (pull-thru) and reconnect the good intestines...We still had issues for 2 years and later we found out the original surgeon left an inch of affected bowel and my son had to have a second pull-thru. Hes doing rather well right now...Good luck to little Kait, I hope they get her diagnosed and taken care of soon, if it is Hirschsprungs. Please keep me posted!

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  6. Hi dylans mom.
    I am a highschool student and doing a presentation onhirschsprung's disease. I was wondering if on my powerpoint i could use your pictures and come to your blog to show my classmages. idk if you can reply on here but if not feel free to email me at bernedasmith@live.com

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