We all got the dreaded stomach bug over New Years. I am very very very happy to report that allthough Joey did get sick (vomitting) he had NO HD flare-ups at all. He stopped pooping for a day, but that was because we didnt eat for 24 hours or so. He got better after 24 hours and resumed pooping and all was well. This is the first time he’s had a stomach bug w/ no HD happenings. Although this virus was awful, my husband and I were so proud of Joey’s healthy body keeping the HD at bay.
YAHHHHHH Joey!
I am in great need of someone to talk to about Hirschsprungs’s flare ups after a stomach bug. I was never told that this was even a possibility before but this recently happened to my son, who just turned 3. He has his pull-through surgery at 2 weeks old and we did dilations until he was 6 months old. He has never had a serious problem since and we were told to watch for constipation and signs of enterocolitis but that they expected him to be “fixed.” A few weeks ago he had a stomach virus that started with vomiting and a fever and then turned into diarrhea which gave him a horrible diaper rash. I noticed he seemed to be fighting bowel movements and I figured it was because the rash was hurting and the next thing I knew we ended up in the ER with his stomach huge and rock hard, with him screaming every couple of minutes from cramps. So far “blockage” has reoccurred 3 more times since and they want us to give him a massive amount of Miralax every day and ememas when the flare-ups occur. I am scared of the Miralax making his colon lazy and I am just unsure of how to proceed from here. Has anyone had a similar experience and do you have any advice for me? I am new to forums, etc. and would really love a listening ear. I eat, sleep, and breathe this every second right now and I am scared for my son and just want to do what is best for him.
Hi Jen,
So sorry you are going through this. This is just a blog so only I can respond. I strongly suggest you get onto the HD boards and facebook has at least 5 very active HD pages, that are private. In terms of miralax we refused to try it so I cannot comment too much on its efficacy. We have tried senna and had mixed results. Is your son on a probiotic? That is extremely important (in my opinion) in helping to prevent stomach issues. Will it ‘fix’ EC or totally prevent stomach bugs, NO, but I believe it helps a ton. Natural Calm magnesium helps us when I notice Joey is slowing down. It works like miralax and senna combined by bringing water into colon and helping w/ contractions to bring poop down and out!!! Obviously you have to find a diet that works fro your HD child but we are on high fiber (5g per meal) very clean diet. Lots fruits, veggies and whole grains, very very very limited sugar, no food colorings or other chemicals. 30+ oz of water per day…that is super important. We add some juice or squeeze of lemon/lime to get him to drink…thats pretty hard to get those 30 oz in.
http://community.babycenter.com/groups/a6705975/hirschsprungs_disease_and_other_gi_disorders
http://www.klaire.com/prod/proddetail.asp?id=V775-06 (we take 2x the adult does every single day)
http://www.amazon.com/Jarrow-Formulas-Sacharomyces-Boulardii-Capsules/dp/B0013OVW0E (we take 2-3 capsules per day)…this one helps fight diarrhea and C. diff, also helps to bulk up stool
get onto fb so you can post your questions then you will get lots more opinions. I am just one Mama TRYING to keep y little man healthy and pooping!!!!!!!!!!!!!!!
good luck,
Brenda
Thanks Brenda. I do have him on a probiotic actually I also use Jarrows but the baby version. I haven’t tried the magnesium, but thanks for the tip. I am trying to reach out to others but this is new to me. Thanks for the suggestions. Is it common for your son to have issues after a stomach bug? My son only has had vomiting a couple of times and this was the worst. Thanks again.