The verdict on Peter's kidneys is that he has glomerulonephritis. from Medline, "Glomerulonephritis is a type of kidney disease caused by inflammation of the internal kidney structures (glomeruli), which help filter waste and fluids from the blood." There can be different reasons for the condition, and it can be mild, moderate, or severe in nature. We think that Peter has had this for many months and that he is presenting as a mild case. The nephrologist feels Peter's cause is likely IgA nephropathy versus some of the other causes that could be the culprit, but the only way to make a definite diagnosis of the cause would be to do a kidney biopsy. Peter is not the ideal candidate for biopsy of any organs due to portal hypertension, so unless he gets acutely worse or does not respond to medication, we will just ride on the fact that he has glomerulonephritis and remain watchful.
He has started on vasotec (enalapril), which is a blood pressure lowering medication. He does not have high blood pressure, which is a blessing since it can go hand-in-hand with kidney disease, but the medication also has the property of protecting the kidney from scarring. Prolonged inflammation of the kidneys from glomerulonephritis can eventually cause scarring of the kidneys and long-term damage. He has been on this medication for several days now and seems to be tolerating it well. We will hope for his labs to show that he handles the medication well and will return to the nephrologist in two months. Peter will likely need to stay on the medication for a good long time, possibly for life. The nephrologist said that sometimes people clear the condition, and sometimes they do not. We are on a wait-and-see approach to see where things end up, but it all sounded encouraging and manageable.
Thursday, February 5, 2009
Monday, February 2, 2009
Peter's Probiotics Regime -Part Two
After posting about Peter's probiotics, I got to thinking about the central line issue that makes many doctors, nurses, and other SBS'ers worry about infection. I thought I would revisit this subject with additional details for other parents/caretakers who are dealing with bacterial overgrowth (BO) and the question of whether to add probiotics or antibiotics.
When we first began treating BO sometime in mid 2007, we went straight for antibiotics given Peter's proneness to intestinal bleeding from portal hypertension (possibly the BO as well) and his recent hospitalizations for a gut translocated organism in June if memory serves correctly, and the fact that he had only come out of the hospital in Feb 2007 after almost a year inpatient. The antibiotics worked very well... for a couple of rounds. We did flagyl for a week, augmentin for a week, and cipro for a week, and then either repeated or took one week off before repeating (can't recall). They were all administered enterally. As we grew accustomed to this routine over a couple of months, Peter began doing funny things while on the enteral antibiotics. The first issue was hives. After the third round of hives we came to recognize that they were occuring when he was on augmentin. We stopped augmentin and the hives left and haven't returned. We continued with just flagyl and cipro until we began to have mystery illnesses while on flagyl. I have written about that in this blog before - see posts from March and April 2008 where Peter was hospitalized and cultured and there was nothing discovered as far as illness. The third time the mystery illness occurred we realized that each time he had been on flagyl. We stopped the flagyl and the illness left the next day. Then all we had left was cipro. We were looking for patterns by this point and found one - enteral bleeding within a few days of starting cipro. (By this point Peter's enteral bleeds had pretty much resolved and were rare occurences compared to the year before, but when cipro came onboard it would predictably return.)
This is when we started the probiotic drink of kefir. It was good stuff, but eventually stopped working, likely due to the small amounts that we are limited to since Peter takes so little in enterally to begin with. Speaking with Peter's GI in Boston about the BO and where to go with it, he suggested that we could try probiotics, although it is considered risky in a child with a central line. Given that we have already been hospitalized because of antibiotics, it seemed worth the risk to try probiotics over antibiotics. The cautions I have been given are that probiotics are LIVE organisms. What has been emphasized to me, is that one of the culprits for infection in a line of a person using probiotics is likely a cross-contamination versus necessarily a gut translocation. In other words, a person may have probiotic on their hands, not realize it before handling the central line and thereby contaminate the line directly. That may not be the route of contamination in all probiotic line infection cases, but just like one would thoroughly wash hands after changing a dirty diaper or ileostomy bag before accessing the line, one should be extremely thorough in cleaning after probiotics before handling the line or accessories. Below are the tips that were given to me along with how we have adapted them to Peter's routine.
The germs, though "good" germs, are still "bad" germs if they get into the bloodstream, so wash hands thoroughly and make sure that the probiotics are handled with diligent care so that they do not get anywhere near the central line. Administer probiotics long before accessing the line or making TPN of handling IV meds. Do not administer or mix or store probiotics anywhere near where you make TPN or handle IV meds. Our routine is that Peter receives the probiotics only after his TPN is down and his lines have been flushed and wrapped in coban for the day. The probiotics are mixed only where food is prepared, not where TPN would ever be prepared, and is mixed over a large dinner plate to catch any excess powder that might fall onto the plate when it is being measured. The powder is mixed with a teaspoon of baby food in a small bowl that is on the plate. The plate is used then as a tray to keep the possibly dirty bottom of the bowl from contaminating another surface. Peter is fed the food containing the probiotic, not allowed to try to feed it to himself. Immediately after feeding it his mouth is wiped with a damp paper towel, the bowl and spoon and plate go into the dishwasher, and the person who administered the food and anyone else who handled the probiotic in anyway washes hands with soap and water.
Peter has been on this regime since late December and though the attention to maintaining strict cleanliness when using the probiotics seems a little strict and uptight, it seems to be working well for us. We'll keep posting updates about the success or lack of it as we go on.
When we first began treating BO sometime in mid 2007, we went straight for antibiotics given Peter's proneness to intestinal bleeding from portal hypertension (possibly the BO as well) and his recent hospitalizations for a gut translocated organism in June if memory serves correctly, and the fact that he had only come out of the hospital in Feb 2007 after almost a year inpatient. The antibiotics worked very well... for a couple of rounds. We did flagyl for a week, augmentin for a week, and cipro for a week, and then either repeated or took one week off before repeating (can't recall). They were all administered enterally. As we grew accustomed to this routine over a couple of months, Peter began doing funny things while on the enteral antibiotics. The first issue was hives. After the third round of hives we came to recognize that they were occuring when he was on augmentin. We stopped augmentin and the hives left and haven't returned. We continued with just flagyl and cipro until we began to have mystery illnesses while on flagyl. I have written about that in this blog before - see posts from March and April 2008 where Peter was hospitalized and cultured and there was nothing discovered as far as illness. The third time the mystery illness occurred we realized that each time he had been on flagyl. We stopped the flagyl and the illness left the next day. Then all we had left was cipro. We were looking for patterns by this point and found one - enteral bleeding within a few days of starting cipro. (By this point Peter's enteral bleeds had pretty much resolved and were rare occurences compared to the year before, but when cipro came onboard it would predictably return.)
This is when we started the probiotic drink of kefir. It was good stuff, but eventually stopped working, likely due to the small amounts that we are limited to since Peter takes so little in enterally to begin with. Speaking with Peter's GI in Boston about the BO and where to go with it, he suggested that we could try probiotics, although it is considered risky in a child with a central line. Given that we have already been hospitalized because of antibiotics, it seemed worth the risk to try probiotics over antibiotics. The cautions I have been given are that probiotics are LIVE organisms. What has been emphasized to me, is that one of the culprits for infection in a line of a person using probiotics is likely a cross-contamination versus necessarily a gut translocation. In other words, a person may have probiotic on their hands, not realize it before handling the central line and thereby contaminate the line directly. That may not be the route of contamination in all probiotic line infection cases, but just like one would thoroughly wash hands after changing a dirty diaper or ileostomy bag before accessing the line, one should be extremely thorough in cleaning after probiotics before handling the line or accessories. Below are the tips that were given to me along with how we have adapted them to Peter's routine.
The germs, though "good" germs, are still "bad" germs if they get into the bloodstream, so wash hands thoroughly and make sure that the probiotics are handled with diligent care so that they do not get anywhere near the central line. Administer probiotics long before accessing the line or making TPN of handling IV meds. Do not administer or mix or store probiotics anywhere near where you make TPN or handle IV meds. Our routine is that Peter receives the probiotics only after his TPN is down and his lines have been flushed and wrapped in coban for the day. The probiotics are mixed only where food is prepared, not where TPN would ever be prepared, and is mixed over a large dinner plate to catch any excess powder that might fall onto the plate when it is being measured. The powder is mixed with a teaspoon of baby food in a small bowl that is on the plate. The plate is used then as a tray to keep the possibly dirty bottom of the bowl from contaminating another surface. Peter is fed the food containing the probiotic, not allowed to try to feed it to himself. Immediately after feeding it his mouth is wiped with a damp paper towel, the bowl and spoon and plate go into the dishwasher, and the person who administered the food and anyone else who handled the probiotic in anyway washes hands with soap and water.
Peter has been on this regime since late December and though the attention to maintaining strict cleanliness when using the probiotics seems a little strict and uptight, it seems to be working well for us. We'll keep posting updates about the success or lack of it as we go on.
Wednesday, January 28, 2009
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.
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.
Wednesday, January 14, 2009
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.)
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.)
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