Well, we've been home from the hospital for a week now (seems longer- it's always busy trying to catch back up after being in the hospital!).
Last Sunday, we went to the pumpkin patch, Little man was having a rough sort of day- he enjoyed playing but was tiring easily. We suspected it was from not getting his TPN the night before. Big mommy and daddy mistake, part of being in the hospital for a week- no milk in the fridge for the other boys’ breakfast; and no tubing for his TPN administration. We hadn’t realized we were short! We had the TPN bags, but the wrong tubing was sent! It was a weekend, we didn’t expect that anyone would be able to get us the tubing we needed until Monday, so we upped his formula intake (of course) but we were unsure how that was going to work out for him.
By Monday morning, it was becoming more clear that something wasn’t working out for him- but now we had a few things in the differential. A water bottle on Friday, found to have “gunk” in the sip valve; missed TPN for 2 nights, a line that wouldn’t flush the antibiotics through and we had to “push” it through (potentially putting bacteria into his system- not enough for full sepsis but…), or was worse yet- was he reacting to something like his new brand of hemp protein powder. Ah, the fun times of FPIES guessing games. A delayed food allergy, you have to look at a minimum of a 24hr.window. It gets muddy sometimes!
He had labs drawn on Monday, and my concerns grew as his labs confirmed that something wasn’t right. I continued to watch him through the next day- I was concerned that he may be heading downhill. I contacted his doctors and decided to continue to watch him through the day, and get his Thursday labs done on Wednesday to help assess- and make a plan if needed.
Thankfully, by Wednesday he was showing improvements and his labs confirmed this. We still don’t know for sure what caused this, but just thankful it was short-lived and his body re-cooped quickly. Thursday and Friday, he began to be more and more himself. He is still getting IV antibiotics 2x/day (morning and night). This will continue until the 26th; and then we will get cultures to see if the long treatment of intense antibiotics has worked to rid his blood of the bacteria. Good signs are that he is looking good, acting well, and his line that had redness around it now does not. I pray this treatment has worked.
One other thing noticed in his lab work is that his hemoglobin, that was dropping last week, has started to climb up….for the first time on its own- the numbers are going UP! I’m puzzled by this, an am remembering some research I have done on “iron loving bacteria” and wondering if that was happening to him. Well, now he is on IV antibiotics and his hemoglobin is going up- on its own. Coincidental? Maybe. Maybe it is a silver lining amongst this sepsis cloud. Everything does happen for a reason, that I do know.
The next step is to start some probiotics. Antibiotics kill bacteria in the body- good and bad. It may be helpful if it is killing some negative bacteria that is iron-loving; but regardless, his body still needs the good bacteria. Probiotics are found to be helpful during antibiotic treatments. Maybe this is the time when we get ahead of his gut dysbiosis that we know has compromised his gut health and complicated his FPIES?
Showing posts with label antibiotics. Show all posts
Showing posts with label antibiotics. Show all posts
Sunday, October 23, 2011
Saturday, October 15, 2011
PICC line bacteria identified.
Over the next days, Little Man is doing really well, especially considering how rough things got to land us in the PICU. Everyone is pleased with how well his body is coping, maybe that is the advantage of a chronic illness- his body has developed many coping mechanisms and he is the healthiest sick kid we know! We were dismissed from the PICU after 24hrs. of being stable.
They have identified the bacteria, normal gut bacteria: pantoea agglomerans (previously known generally as enterobacter). This is a gut flora bacteria, belongs in the gut- not in the blood stream. It has set up home in one of the lumen’s of his PICC line. The antibiotics have eradicated it from his system, but it remains a threat in the line. Only further time, waiting for culture tests, will tell if we will be able to save the line (although looks optimistic that we will). We do cultures every day and as soon as those cultures do not grow any bacteria, they will be able to send us home on IV antibiotics.
The other complication is that his hemoglobin is dropping again, now down to 7 (normal is 11, we have to consider transfusion at 7 and if he gets any lower- we will be facing a transfusion). They haven't given him any IV iron this week yet but honestly the last 3-4 IV irons have not done ANYTHING to raise his hemoglobin....this still remains a mystery to me and seems there surely must be something else going on with how his body produces hemoglobin and how the reactions affect that.
Another kink is that the next day, he threw up this morning. Daddy (who takes the overnight shift) said he had a great night- slept through the night, and when waking up - before he had anything to eat, he threw up. Could be the antibiotics messing with his gut flora causing it; could be that he painted the day before (a dot marker type painting) and he painted his hands and then later licked his hand.....12hrs.later he threw up- classic for him (and has happened before); we had to just wait and see.
He never did have any further throwing up or tummy pain; so we concluded it was the paint. Bizarre but FPIES. He continues to do well, and we are dismissed from the hospital to continue IV antibiotics at home; having identified the bug and the antibiotic to treat it. We are happy to go home.
They have identified the bacteria, normal gut bacteria: pantoea agglomerans (previously known generally as enterobacter). This is a gut flora bacteria, belongs in the gut- not in the blood stream. It has set up home in one of the lumen’s of his PICC line. The antibiotics have eradicated it from his system, but it remains a threat in the line. Only further time, waiting for culture tests, will tell if we will be able to save the line (although looks optimistic that we will). We do cultures every day and as soon as those cultures do not grow any bacteria, they will be able to send us home on IV antibiotics.
The other complication is that his hemoglobin is dropping again, now down to 7 (normal is 11, we have to consider transfusion at 7 and if he gets any lower- we will be facing a transfusion). They haven't given him any IV iron this week yet but honestly the last 3-4 IV irons have not done ANYTHING to raise his hemoglobin....this still remains a mystery to me and seems there surely must be something else going on with how his body produces hemoglobin and how the reactions affect that.
Another kink is that the next day, he threw up this morning. Daddy (who takes the overnight shift) said he had a great night- slept through the night, and when waking up - before he had anything to eat, he threw up. Could be the antibiotics messing with his gut flora causing it; could be that he painted the day before (a dot marker type painting) and he painted his hands and then later licked his hand.....12hrs.later he threw up- classic for him (and has happened before); we had to just wait and see.
He never did have any further throwing up or tummy pain; so we concluded it was the paint. Bizarre but FPIES. He continues to do well, and we are dismissed from the hospital to continue IV antibiotics at home; having identified the bug and the antibiotic to treat it. We are happy to go home.
Tuesday, May 10, 2011
Vicious Cycle
Why is it that nursery rhymes, quotes from Disney movies, and Dr.Suess come into my head when I am processing through my day? "We can't go forward, No way to move back.....we are stuck here, stuck at that crack in the track" (Thomas the Tank Engine Dr.Suess style) Or, from my 3yr.old...."just keep swimming, just keep swimming" (Finding Nemo).
As I look over my notes, the logs I keep for Little Man, it becomes more obvious of why his FPIES is so complex. We are trapped in one vicious cycle after another. The key to unlocking his aytpical FPIES will be in stopping his vicious cycle. But how?
His complexities lie in his Th17 responses. A response that is not completely understood, and currently is not even studied in relation to FPIES (it is that "new" of a discovered mechanism). It is exciting to see that there may be an explanation behind his atypical FPIES but without more knowledge- there is little to do with this information....except more research....by me. Another critical component of his FPIES is ongoing anemia. My instincts say there is a tie-in to his severe gut dysbiosis and his anemia. Iron is absorbed primarily in the small intestine. Frequently, those with inflammatory bowel disorders can have anemia as a co-existing condition. Little man has had chronic inflammation many months of his life, and chronic gut dysbiosis probably all of his life. We simply can not get ahead of his vicious cycle without knowing more of his mechanisms. And yet, we need to make decisions about what to do next, what to trial next, what best way to treat his anemia, or his reaction symptoms.
Following IM Rochephin antibiotic, little man had his all too familiar pain attacks. A trip back to the pediatrician to check on his ears (the reason for the antibiotic) and they were healing well, no signs of infection. This confirms that his familiar pains are that of his stomach aches. I had the thought to add the probiotic to each bottle, after finding out on the stool studies that he has no growth of lactobaccilli detected in his stools. That information, coupled with trialing the lactobaccilli probiotic, and seeing a plateau affect. This seems to have really helped. But then quickly discovered that after ~24hrs, the probiotic was fermenting in the formula (actually a good thing- creating Kefir without realizing it) and was not a taste Little Man was interested much in. He does enjoy the taste of the probiotic, has since we started it- just not of it fermenting! I have worked through a few changes in my formula recipe and making and again improved on his formula- fitting his specific needs.
We now notice significantly less crampy pain that has often become a chronic part of Little Man's cycle. Is this the affect from the antibiotic or from the increase in the probiotic? Or is it a combination of both? Will he be able to tolerate more foods finally?
We are hopeful, until....
As I look over my notes, the logs I keep for Little Man, it becomes more obvious of why his FPIES is so complex. We are trapped in one vicious cycle after another. The key to unlocking his aytpical FPIES will be in stopping his vicious cycle. But how?
His complexities lie in his Th17 responses. A response that is not completely understood, and currently is not even studied in relation to FPIES (it is that "new" of a discovered mechanism). It is exciting to see that there may be an explanation behind his atypical FPIES but without more knowledge- there is little to do with this information....except more research....by me. Another critical component of his FPIES is ongoing anemia. My instincts say there is a tie-in to his severe gut dysbiosis and his anemia. Iron is absorbed primarily in the small intestine. Frequently, those with inflammatory bowel disorders can have anemia as a co-existing condition. Little man has had chronic inflammation many months of his life, and chronic gut dysbiosis probably all of his life. We simply can not get ahead of his vicious cycle without knowing more of his mechanisms. And yet, we need to make decisions about what to do next, what to trial next, what best way to treat his anemia, or his reaction symptoms.
Following IM Rochephin antibiotic, little man had his all too familiar pain attacks. A trip back to the pediatrician to check on his ears (the reason for the antibiotic) and they were healing well, no signs of infection. This confirms that his familiar pains are that of his stomach aches. I had the thought to add the probiotic to each bottle, after finding out on the stool studies that he has no growth of lactobaccilli detected in his stools. That information, coupled with trialing the lactobaccilli probiotic, and seeing a plateau affect. This seems to have really helped. But then quickly discovered that after ~24hrs, the probiotic was fermenting in the formula (actually a good thing- creating Kefir without realizing it) and was not a taste Little Man was interested much in. He does enjoy the taste of the probiotic, has since we started it- just not of it fermenting! I have worked through a few changes in my formula recipe and making and again improved on his formula- fitting his specific needs.
We now notice significantly less crampy pain that has often become a chronic part of Little Man's cycle. Is this the affect from the antibiotic or from the increase in the probiotic? Or is it a combination of both? Will he be able to tolerate more foods finally?
We are hopeful, until....
Saturday, May 7, 2011
IM Rochephin
An Ear infection, on April 25th, meant antibiotics. Antibiotics run a risk of disturbing his gut flora, and risk of reactions from ingredients. We had been advised to use IM Rochephin (IntraMuscular injection) if a time came for an antibiotic need. Intramuscular is what he got at birth as well, IM ampicillian. I expressed concern to the Resident Pediatrician who had later advised me that she miscalculated his ampicillian dose. The hospital protocol for IM Ampicillian was lower than the AAP (American Academy of Pediatrics) recommended dose, which is what she had followed. Both 'safe' doses, just that they would be skipping one dose to allow his body to catch up. Would this affect his gut flora? I wonder if he should have a probiotic? Or should I up my probiotics? I remember very well getting that "look"...."this is intramuscular injection and does not affect his gut" was her casual response. I knew better but I let that settle as ok because I had just become a mom to my 4th baby and had a few others things on my mind! I now wonder if that antibiotic dose is what carved this FPIES course we are now on, this complicated/atypical FPIES course....
So, being in the place of needing an antibiotic, is concerning. Antibiotics will still affect gut flora, regardless of if it is taken in through the gut or an intramuscular injection. But, as I mentioned in a previous post, this may be something that could help- if we can control this "reset" of gut flora and guide the "good" microflora into re-gaining their healthy control role.
Now, with stool studies in hand, I begin to see why he has had such good responses to the one probiotic we started with: CD Biotic which is: Lactobacillus rhamnosus, lactobacillus plantarum, and a saccharomyces boulardii. It is like it is made for him. He needs lactobacillus as he has no growth in that (on stool studies), so it would appear he has no/very little "resident" flora of lactobacillus. Without a pre-biotic to help the probiotic "feed off of"- explains why he seems to plateau on it.
The rochephin takes care of his ear infection almost immediately. We are relieved for that. His fever drops, he begins eating more again, and he sleeps (and doesn't need to be in our arms, upright, to do so). We restarted his "safe" probiotic by adding it to his formula (so that it is in each bottle). He appears to respond well to this throughout the day. I skip the next day of adding the probiotic to each bottle, to see the difference and he has disturbed sleep, very fussy/whiny/clingy and seems to be having tummy pain (kicking legs, gassy, wants to be held standing up only....). Add it back in the next day and much less fussiness, less stomach pains. He even tried a banana.....
So, being in the place of needing an antibiotic, is concerning. Antibiotics will still affect gut flora, regardless of if it is taken in through the gut or an intramuscular injection. But, as I mentioned in a previous post, this may be something that could help- if we can control this "reset" of gut flora and guide the "good" microflora into re-gaining their healthy control role.
Now, with stool studies in hand, I begin to see why he has had such good responses to the one probiotic we started with: CD Biotic which is: Lactobacillus rhamnosus, lactobacillus plantarum, and a saccharomyces boulardii. It is like it is made for him. He needs lactobacillus as he has no growth in that (on stool studies), so it would appear he has no/very little "resident" flora of lactobacillus. Without a pre-biotic to help the probiotic "feed off of"- explains why he seems to plateau on it.
The rochephin takes care of his ear infection almost immediately. We are relieved for that. His fever drops, he begins eating more again, and he sleeps (and doesn't need to be in our arms, upright, to do so). We restarted his "safe" probiotic by adding it to his formula (so that it is in each bottle). He appears to respond well to this throughout the day. I skip the next day of adding the probiotic to each bottle, to see the difference and he has disturbed sleep, very fussy/whiny/clingy and seems to be having tummy pain (kicking legs, gassy, wants to be held standing up only....). Add it back in the next day and much less fussiness, less stomach pains. He even tried a banana.....
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