Monday, January 25, 2010

Last? Enterocolitis Update

I apologize if any of you have held your breath waiting for an update. The truth is that hospital visits make me weary. When the worst is over and the trial-trail appears to head downhill again, I like to gather my family around me, forget about the rest of the world, and have a little party.

Sorry world. It's not meant to be exclusive. It's just that our house is only so big.

With the help of antibiotics and rectal irrigations at home, Bridgette became increasingly more healthy over the course of last week. On Wednesday we visited Dr. Black for a check-up. He seemed so genuinely happy to see us, it was as though he sort of forgot we were there because Bri had been desperately ill. He didn't charge us for the visit.

We had heard, and Dr. Black corroborated, that only about 20% of Hirschsprung babies ever deal with enterocolitis, but if you are included in that lucky 1:5 ratio, chances are, you will deal with it again. The frequency ranges from "more than once" to "maybe often."

Dr. Black answered some questions that have lurked about since this whole episode began, but also, he agreed that baby B is a bit of a weird case. For example, he was honestly surprised that her enterocolitis came about at random and didn't seem to be related to receiving antibiotics.

We were told from day 1 to keep her off antibiotics if at all possible. Antibiotics kill the lovely "good flora" in the intestines along with the "bad bacteria" it's meant to destroy. The intestinal flora keeps stuff like somewhat-naturally occuring C diff in check. Young Hirschsprung children are easily unbalanced, especially due to antibiotics or constipation. In Bri's case, we weren't dealing with either.

I suppose there could be a number of other potential intestinal upsets to throw her system out of whack... perhaps a virus? traveling? a reaction to food? We don't really know. I don't ever expect to figure it out.

Ironically, the primary enterocolitis cure (the antiobiotic Flagyl) is also part of the curse. As the doses end, the C diff (or other offending biological baddy) can flare up again since the good flora (and I really can't help but think "good fairies" every time I write that) is killed, as explained above. This, in fact, has occured with Bridgette. On Saturday night she woke up literally screaming at 12:30 a.m., 3:30 a.m., and 5:30 a.m. On Sunday her appetite was down and her dehydration was up.

Despite the flare-up, we've found a soft, if not silver, lining in our personal stormcloud. In this case, we learned how to better recognize the symptoms of enterocolitis, and we learned how to treat it at home. If we catch the signs early enough, we may be able to avoid administering Flagyl just by doing rectal irrigations.

For example, this is what we did on Sunday, and it seems to be working beautifully. She ate well today, had two natural bowel outtages, and had several diapers fairly soaked through with nothing but urine. (We wonder what parenting is like for others. Is this truly normal?)

If we can't avoid Flagyl, Dr. Black has said we can call him for a prescription at any time. He also gave me a couple of "blank checks" so to speak. We have two dateless Flagyl prescriptions that we can fill when needed or prior to traveling, so we don't have an emergency while we're away from home. Since we hope to be camping at Yellowstone later in the year, this is tremendous insurance.

There is a third part to her treatment -- the administration of probiotics. We were giving her probiotics in the past, but not regularly. Now every single bottle** receives a packet of Florastor Kids (which is quite pricey and smells like yeast) and sometimes a crushed capsule containing L. acidophilus and L. bifidus as well.

In the end, the goal is hydration and preventing her intestines from rupturing, thus keeping her out of the hospital. Most kids have built up enough natural immunity by the age of five to prevent enterocolitis from occuring at all. (And I admit I hope it's sooner. As unpleasant as it can be now, I don't want to do rectal irrigations with a 3, 4, or 5 year old.)

Here is Bridgette with her lovely balloon bouquet, provided by G & G Hoose and Uncle Jon the day she arrived home from Primary Children's. At the moment this photos was taken, she hadn't quite warmed up to the largess or the largeness of that gift yet, but now she sleeps with the fuzzy bear and plays with the still floating mylar balloons every day.

** Some words about Bridgette's diet:

Bridgette does not typically drink from a baby bottle. She utterly refused to use sippy cups, so we've moved straight to cups, usually using a normal thin straw. Since sticking a cup of milk in my purse gets fairly messy, when we're on the move, sometimes we revert back to a bottle (sans sippy cup option). We just knife a wide swathe across the top of the nipple so she can suck it down rapidly.

In keeping with the rest of the total colon Hirschsprung community, we have found that Bridgette doesn't tolerate dairy. Traditionally, it has made her very, very sick. So each ration of "milk" is made in the following fashion: half unflavored Pedialyte, half rice-milk, one scoop powdered soy formula per two ounces liquid base, one packet Florastor, and one capsule other probiotic. The Pedialyte is concocted to replenish electrolytes in kids with diarrhea and the rice-milk makes it taste sweeter. It's a process, but we're so used to it that we don't blink. We've tried moving her to straight soy milk, but oddly, that was worse than dairy. Others we've talked to have found the same thing.

More oddly, Bridgette's diet has been so limited to this point that I could list her whole diet on the palm of my hand. However, since this bout of enterocolitis cleared up, we've found she's eating ... everything... and not having much trouble. We're feeding her yogurt and cheese (yes, in fact, both dairy products), vegetables, etc., and she's digesting them well. We have not given her high fiber foods like blackberries, but she did try a few kernels of corn. It makes me wonder how long things may have been unbalanced in her system and whether it actually has any bearing on her diet. Very confusing.

4 comments:

Angela said...

Kelly, We are giving Isabella Florastor Kids now too. Once a day in her milk. We also have omitted chocolate. She hasn't had any diaper rash for more than a week now. I feel like her stools are more normal now too. The probiotic I think is the key player but anytime she has chocolate her rash flared up. I'm glad things are getting better and I hope you CAN pin point any causes so that you can avoid her getting sick again.
We tried almond milk and soy and we had bad experiences with those. But Bells seems to be doing fine with whole milk now.

Janel said...

Tyler also can not tolerate soy. We use coconut milk made by SO Delicious. He doesn't really drink it except in his cereal, but he also likes chocolate almond milk in the portable containers which is very expensive but it is the only brand he will drink.

If when she is 3,4 or 5 and you are still doing daily irrigations then come talk to me. You might want to consider the option Tyler has which is the only way we can keep his bowel clean & healthy.

Hugs you are doing an awesome job :) !

Lore said...

I am glad that she has warmed up to the balloons and bear, and I am happy to see a picture of her with them.

I am also glad that you are all figuring out what works best for her little system. Way to go! (pun intended for Baby B)

Love,
Mom

Brooke said...

Kelly, thanks for sharing your story - I'm learning so much! We also do daily probiotics, but I've always been leary about the Flagyl - and now you've given me more reason to push back on that. Hang in there - she's a tough cookie and so are you!! I find that when Curly gets minor bumps and bruises he doesn't cry like other kids - I wouldn't be surprised if B is the same way.