Peter's probiotics regime - Part One

Kids with short bowel syndrome (SBS) tend to have recurrent bacterial overgrowth (BO) in their intestines. We haven't had to deal with this in ages with Peter, but in December Children's Boston suggested that Peter's difficulty with feeds may be due to BO. ***UPDATE: I think the more frequent abbreviation is SBBO - Short Bowel Bacterial Overgrowth, versus just BO.***

We have had terrible luck with enteral antibiotics in the past, resulting in hives, mystery ailments ending Peter up for hospitalization, and intestinal bleeding. We had tried 3 different enteral antibiotics (flagyl, augmentin, and cipro), each presenting one of those problems. We had put Peter on kefir for several months after the antibiotics had failed and the BO odor was returning. That worked well for many months, but apparently did not work well enough to be the sole prevention for BO, possibly given the small amounts we had to give Peter.

Peter has now been on powdered probiotics since late December, and we think we are seeing a huge improvement! We started on 15-35 Probiotic which has 35 billion organisms per capsule, but it also has enough sodium in it that Peter ultimately began to refuse it due to taste. We moved on to Florastor, which is a yeast organism. He has been on this for 2 weeks and we will keep him on it one more week. The initial response on Florastor was that he smelled quite poopy most of the time, but at this point he does not and he is acting like he feels just wonderful. Perhaps the poopy smell was him clearing out the BO?? He takes the Florastor in a little baby food and is no longer refusing elecare. He is sleeping better at night too!

We will then go to VSL#3, which is quite similar to the 15-35 Probiotic, but no sodium. We'll give that for two weeks, go back to Florastor for two weeks, and then go for a two week break off all probiotics. Meanwhile we are hoping to begin increasing elecare again to see if he can tolerate it better now that the BO is out.

Still waiting to hear back from the nephrologist about what is going on with Peter's kidneys if anything.

Christmas photos 2008

This year Peter understood that Christmas is baby Jesus' birthday. He understood that presents have gifts inside that you keep. He understood how to open the gifts. And he enjoyed himself! What a lovely Christmas gift and blessing to see the advances from last year to this year!

The endless cold and the fearless wrestler

I have been meaning to post for the last 10 days but have been stuck with an endless cold rendering me essentially useless by the end of the day which is the best time for me to try to update things... after the kids are down and it is quiet. Interestingly, Peter had the bug for only a day and a half, though he has a persistently low white cell count in his labs and has for the last two years at least. It is a whopper of a cold though, striking every one of us plus one of the nurses that works in our house here. It seems to be rebounding on the kids including Peter today.

Peter's albumin yesterday was down from 2.9 to 2.2 and he acts like he is holding onto fluid in the abdomen in his breathing and gait. We hope it is just the cold! When he has been hit with a good illness in the past we would see his albumin get down below two and he would swell up, needing IV albumin and lasix to remove the fluid. I don't see the swelling taking over like in the past, so hopefully he is pulling out of this on his own already.

Prior to the cold we actually have seen some great progress with Peter physically. He still can't jump, but he is doing a whole lot more self moving when playing which imitates many of the positions PT wants him to work on. Also, what is really a big leap forward is that he has started to enjoy crashing into his brothers and rolling around on the floor with them in mock-wrestling moves. His speech is coming along beautifully and he is using full sentences with occasional pronouns and making conclusions about what someone may be feeling based on what they are doing - ie, if I am holding a cup, "Mommy is thirsty."

We are still perplexed with the urinalyses that we are getting over the last few weeks. There is still large amounts of microscopic blood and there is protein in the urine. We are to find a kidney consult locally to see what is happening. We also still are trying to understand why he holds onto fluid as he does. Children's Boston lowered the sodium in his TPN even lower, but so far we don't see much change. But again, perhaps that is because of the nasty cold virus and the proneness to holding fluid when ill. Maybe the kidney consult will give us some clues.

We are still at 30ml per feed with the elecare but have added a tiny bit of stage 1 fruit again. Peter can detect the probiotics in his elecare and we have been seeing an aversion to the elecare, seemingly out of fear that it will not be the pure elecare but will have the probiotic in it. Putting the probiotic in the baby food is so far working out well. We are now trying Florastor probiotic and have great hope that will work as well for him as it has in other "intestinal failure" patients. (I don't particularly like the term intestinal failure and almost panicked when I first saw it on Peter's chart, but it does not mean that his intestine is failing and has no chance, in case you were wondering.)