Monday, June 30

Hirschsprung disease and a tummy bug

Last week Tommy and Liam were both home with a "tummy bug". This post is mostly a reminder to me for future reference, but also to take some time to share with others that might have babies or toddlers with Hirschsprung's disease. This is probably not a post that anyone else wants to read :) It is graphic!

As a sidenote, I will share with everyone that our washing machine had been broken for 3 weeks. Not what a family of six needed. And needless to say during a tummy bug! The amount of poop continues to amaze me. Stay tuned though, as we have a busy week with many appts and I'm sure I will post some pictures later this week. Now.... on to the poop conversation.

We have had problems with runny stools off and on now with Tommy's full 18 months of life. As he had lost 5 inches of his colon at birth, his colon is now shorter compared to a typical child. I'm guessing that he lost approximately 1/3 of his colon. At times the poop now varies from a thick pudding type consistency (very good) to water with little flecks (not at all good). So, I'll attempt to share with you what I have learned from the world of Hirschsprung disease to help Tommy through the "not good" types of poo. Every kid is different. I'm not a doctor, but I am a mom! :) This is just my own understanding of what helps Tommy when he is sick. Colin and I have tried many different things, and have found some to be inexpensive and very helpful. Others to be cost prohibitive and not even options that we could consider on an ongoing basis.

The first problem kids with HD have, especially when sick, is a very quick overgrowth of flora and fauna in their gut. Naturally, these organisms aid digestion but if too numerous they cause toxins which irritate the gut and this in turn causes production of mucous and runny stool. So, whenever we catch a tummy bug (or begin antibiotics for an ear infection) we immediately start probiotics. Tommy has had five rounds of antibiotics this year, and probiotics is an affordable way to bring his gut back on line. For the first few days, I double the suggested child's dose. The dose depends on the type of probiotic that you purchase, just double it. I don't use yogurt at all when Tommy has tummy troubles as the dairy is usually too much for his gut to handle. I switch to a pedialite type liquid for at least 7-10 days and add the probiotic to his gtube feedings. I have heard of others that buy probiotic capsules from costco and just break open an adult dose capsule into their child's bottle of pedialite.

Red bum
Fungal overgrowth also causes the red spots type butt rash. Rash so bad that it on occasion bleeds. So whenever we have this rash we treat it with Illex (very expensive tho). On occasion we use nystatid or a mycostatin oral suspension for thrush. You may want to get some medical advice, although it's over the counter. We use close to the maximum dose, but only when there are symptoms. Usually Liam has gotten thrush first and then we medicate Tommy also just to make sure. Other butt pastes that work include aquaphor and a special mix from our local hospital (which I have begged for again to no avail). This past week I went to Hogland pharmacy for our weekly compouned medication run and purchased the disposable bed 1/4 sheets (15 sheets for $3.50 and they are large) and placed Tommy naked on them to air out his red bleeding bum. Much thanks to my sister Deb for this idea as it worked well and cut down on the amount of laundry. Simply wad up that disposable sheet and away you go!

What to feed the prince?
Bacteria and fungi thrive on sugar. When Tommy has a tummy bug we try not to feed him fruits, no dairy, no yogurt, no cheese. After a few days of fairly solid poo's then we slowly transition back to milk and yogurt. We do give Tommy pastas and small quantities of a protein such as chicken; chicken noodle soup is great for a tummy bug in a kid that has HD. No beef! All the carbs you want though. And nothing like beans as the gas that they create has no place in a kiddo with HD.

Spa treatment
Baking soda baths. Four or five times a day help out the red raw bum. This is wonderful for Tommy as the baths always perk him up and the baking soda helps alot.

Miralax and Senna
On an ongoing basis, when Tommy is healthy, we need to manage the amount of time that stool sits in the gut and reduce the chance that bacteria can grow. The overgrowth of bacteria then causes the lining of the gut to swell and then stool is harder to pass. Pooping at least once a day, is a requirement for Tommy. Preferably, he has a dirty diaper 2-3 times daily. If you ever babysit Tommy the first question you will be asked is "did he poop?". Cleaning out a kid with HD is important. It greatly effects his interest in eating also. The more regular he stays, the more interested he is in oral eating.

So, hope that wasn't too graphic. A post about poo. I should get an award for the dirtiest post :)

Tommy Adventures