I'm honestly not sure where to begin or pick up from last year. I'd like to publish a more detailed versions of this journey, but for the moment I will give the condensed version.
Lucy has fructose malabsorption, no doubt about it. At the end of September, we treated her for SIBO (Small Intestine Bacterial Overgrowth) again, this time with rifaximin. Partway into treatment I wasn't seeing any changes, so added in the SCD diet crossed with FODMAPs, and she had all kinds of die off symptoms like body aches, etc. It was working!! When it was all done, though, we still were not seeing much in the way of symptom improvement or food tolerance. I decided to make a Skype consult appointment with Dr. Allison Siebecker, renowned SIBO doctor and naturopath from www.siboinfo.com. She was absolutely wonderful, and we discussed all different types of treatment options, and decided to ask our pediatrician to prescribe the lactulose hydrogen breath test (HBT) to see if her SIBO was truly gone. Lo and behold, it was! Which was concerning to learn, however, because she was not feeling better. Dr. Siebecker talked me down though, and was very helpful and encouraging. We designed a course of action. I had just started her on 5HTP again even though in the past it had given her heartburn because it had also helped with relieve her visceral hypersensitivity. The GI had offered to put her on amitryptaline, an antidepressant commonly used in a lower dose for various GI disorders because it increases the serotonin not just in the brain, but in the digestive tract where the majority of the body's serotonin is actually used. He had told us over the summer if it works, then he would much rather she use a natural drug vs the prescription one. We had to abandon it after a week though because of the side effects she developed (abdominal pain and reflux.) I did some brainstorming this time and wondered if taking licorice along with it would negate the side effects...and it worked!!! We had also discovered on Halloween when I let her binge on treats (and she subsequently had a great night) that she not only tolerates sugar, but for some reason thrived on it. A little bit of research revealed that in order to make and use serotonin, the body needs more carbs. Sadly with the restrictions of fructose malabsorption and SCD, she had few sources without overloading on fructose. We the trailed raw milk, and she did great! This was a huge relief, because I was considering getting the expensive elemental formula for her again, Neocate Splash, to help supplement her diet. Instead, I was able to use fresh, natural milk and I would sweeten it up to make a homemade kind of formula for her. (And yes, it is counterintuitive to give your kid extra sugar on purpose, but even Dr Siebecker thought this was a great solution for her. She didn't have SIBO anymore, and her body not only tolerated it but THRIVED on it!) For the first time in her life, Lucy was going days and days with NO PAIN!!! We gave her fresh colostrum, zinc carnesine, l-glutamine, A, D. We used low dose erythromycin for gastric motility before bedtime, along with Align probiotic for motility and gut health. (What was really interesting was that when we started the Align immediately post-rifaximin, she had more die off from that for a couple of nights...so we made huge strides in her gut flora.) Align is recommended by Dr. Weinstock and others for nighttime motility (which can contribute to SIBO.) We also used Kirkman's enzyme with Isogest and Urban Moonshine Citrus Bitters to aid her digestion and healing. In the next few months, we watched our little blossom into a happy, energetic, silly little girl. It has been an AMAZING transformation!! We went to Bush Gardens Christmastown a week before Christmas, and whereas in the past she would ride in the stroller 90% of the time...this time she not only walked but RAN 90% of the park!!!
Lucy is now eating a low FODMAP diet. We are still figuring out all the things she does and does not tolerate, but her diet is ginormous in comparison to what it was a year ago, and she feels like a million bucks. She has gone from the 24th percentile in weight to the 44th percentile!! A few weeks ago she even started eating starches again with Kirkland Carb Digest enzymes on board, and it's going really, really well for her. I honestly wondered if we would ever get to this place for her. She now only has pain when she eats a wrong food by mistake or when we trial something new that doesn't work out.
Thursday, January 31, 2013
Sunday, May 13, 2012
And the circus continues
Thursday was supposed to be a turning point for us. Lucy was going to have her breath test for SIBO done at CHKD!! Once we got the data from that showing she is positive, we were going to be able to finally treat her for it with antibiotics. I was excited!!!! They had us originally scheduled for the lactulose breath test for SIBO, but a week before the test the office called and told me the Dr had spoken with pathology and changed it to the fructose breath test. I questioned her to make sure they were going to do it in such a way as to check for SIBO, and she assured me that yes, they were, this is what they were told to do.
Unfortunately, it didn't quite go that way. We got to the lab and Lucy gave her baseline breath sample. That alone made my eyebrows go up, because the tech did not roll up the discard air bag for her weight like she was supposed to. I kept my mouth shut, but should not have. Lucy then drank her fructose drink, and the tech told us to come back at 1, 2, and3 hours. Um, what?!? That is the same exact test we did at home...this test was supposed to be done every 20 minutes for at least the first hour. I was going to lose it, because this meant this was all a complete waste of time. The tech was willing to do it every 20 minutes, however, even though she had "never herd of testing for bacterial overgrowth that way."
Feeling disgruntled, I went back into the waiting room. They had computers there because it was the NICU wait area, so I hopped on one, hoping I could pull up the articles I needed forthe argument I assumed was coming. Of course, the computers were blocked from email and social networks, the two places I had these things bookmarked. Awesome. Luckily, when the pathologist came out to speak with us, she was super nice. She had decided we should do the test every twenty minutes the whole time, for more data. She wanted me to email her whatever information I had, and was happy about Lucy's first fructmal test and where we had it done, since Quintron is the same company who makes their machine and is excellent. She also said it's different nowadays, "patients do a lot of educating of the doctors." While her statement made me very happy to have someone who is open to new information, it also irked me. We shouldn't HAVE to be educating our doctors. That is what we pay them for. Otherwise, their purpose is what? To write out prescriptions for tests and medications we research and request? Might as well just ditch the doctors and make it an open market.
At any rate, we were there for three hours while Lucy completed the test. She had been fasting since bedtime, and was really hungry by the time we were done. She had had some stomach pain during the test from the fructose, but luckily the Barbie Mermaid movie I had bought for her on my iPad kept her well distracted. It's really no fun giving your child a big drink of something you KNOW will make them sick. She had loose stool that afternoon, a terrible behavioral reaction, and belly pain all night long. Poor thing. :(
The same afternoon as the test, I received an email from the pathologist letting me know that Lucy's test was fine, she showed no signs of SIBO, or even fructmal. Um....what?! She already had a very positive fructmal test. I called her immediately for the numbers, but she didn't have it in her hands anymore. She said her baseline was 15 (which is much too high) and all the other numbers were like 7, 5, 10, etc. I told her it didn't make sense, and by the end of our conversation she said I should talk to the GI about repeating the test. Wonderful. I spent the night worrying, researching why, and even read Quintron's 100 page manual on the tests online.
None of this sat well with me, but I had to wait until the next morning to get her actual numbers. I called first thing and had them faxed over, and sure enough, they were odd. (15, 8, 13, 20, 11, 7, 5, 6, 5, 5...baseline followed by sample every 20 min.) None of it made any sense. After doubting everything we thought we knew, I decided to call Quintron/Breathtrackers for information. They were, in a word, WONDERFUL. The woman I spoke to pulled Lucy's file and saw her first two tests. She knew from the data and our discussion that I had done it all perfectly, and she was actually surprised I did it so well with such a young child. She confirmed my suspicions that they did the test wrong,, that that bag should have been rolled down to the marking for her weight because she is under 100 pounds, and that they never should have had her blow into the bag more than once. By doing so, the air going into the sample bag was not the rich mid-lung air, but instead dead space air...essentially room air...which explains the ridiculously low numbers. She told me that if inwere to decide to let the hospital do the test again, to make sure the lab calls her before doing so so they can get proper instruction. I'm also pretty sure she is calling the lab as well, because this was all done so wrong. (Her real recommendation is that I get the prescription for the lactulose test and do the test at home again.) She even pulled up the info on CHKD and knew which machine they have...and it's old. They don't make it anymore. It only tests for hydrogen, whereas the newer, digital machines also test for methane in case a person has methane producing bacteria, and carbon dioxide, which is extremely important for testing the validity of a sample. If a sample is wrong, the carbon dioxide concentration will be under 1.5%...like the composition of room air. Lucy's first test had carbon dioxide levels around 3.5%, for example. Her one sample that was incorrect on her fructose test the first time had CO2 of .80%, which is why the sample was thrown out. (The woman I spoke with actually did the conversion formula for me while on the phone, and told me that sample's reading converted out to be about 34, though with the CO2 levels what they were, it only read as 5!) Because their machine is lacking the ability to measure these other gases, they have NO IDEA if their samples are proper.
Everything about this hospital just gets more and more disturbing the more time we spend there. For one, this is supposedly the go-to hospital in the area for these hydrogen breath tests, even for adults, yet THEY ARE DOING THE TESTS INCORRECTLY. How many people are walking around out there, thinking they are crazy or have untreatable stomach pain because all of their tests were "negative?" Second, the lab and pathologist assured me of this, that they do this test all the time, for many years...yet both our GI (who is new to the hospital, but has now been there since January) and the people who work with her in the office and made the callbacks to me, all told me that they don't do some tests at the hospital, only the lactose breath test. (Which never made sense to me, bc it's the same test, same machine, just a different sugar solution that the patient drinks.) Third, when we first started with this Dr back in January and she was suspecting EoE and told me she was diagnosing it 2-3 times a week at her old practice in AZ and I asked her if she was familiar with TIGER protocol (the gold standard for diagnosing EoE)...SHE DIDN'T EVEN KNOW WHAT THAT WAS.). Not to mention the time I called three times in one week and never, ever received a callback. Or when I called Patient Advocacy to complain about THAT, and never received a callback from them, either.
So, here we are, again, nowhere. My kid had to suffer for two days from a fructose reaction for nothing, we wasted four hours at the hospital, Stephen had to stay home with the other two on a work day. I complained to the pathologist, who apologized, is trying to have the charges removed, and is supposedly going to look into going new equipment for the. I have left two messages with the supervisor of the lab. I have left messages for the GI who, of course, was not in on Friday. I'm not sure what our path will be tomorrow. I want the GI to either prescribe antibiotics to treat her SIBo based on symptoms or prescribe the test so I can do it at home. I'm also considering a new hospital, like CHdren's Hospital of Philadelphia, which seems like it may have physicians versed in this disorder. All I know is, this is all madness, and shouldn't be happening. Why should it be so hard to get treatment for my daughter?!
Unfortunately, it didn't quite go that way. We got to the lab and Lucy gave her baseline breath sample. That alone made my eyebrows go up, because the tech did not roll up the discard air bag for her weight like she was supposed to. I kept my mouth shut, but should not have. Lucy then drank her fructose drink, and the tech told us to come back at 1, 2, and3 hours. Um, what?!? That is the same exact test we did at home...this test was supposed to be done every 20 minutes for at least the first hour. I was going to lose it, because this meant this was all a complete waste of time. The tech was willing to do it every 20 minutes, however, even though she had "never herd of testing for bacterial overgrowth that way."
Feeling disgruntled, I went back into the waiting room. They had computers there because it was the NICU wait area, so I hopped on one, hoping I could pull up the articles I needed forthe argument I assumed was coming. Of course, the computers were blocked from email and social networks, the two places I had these things bookmarked. Awesome. Luckily, when the pathologist came out to speak with us, she was super nice. She had decided we should do the test every twenty minutes the whole time, for more data. She wanted me to email her whatever information I had, and was happy about Lucy's first fructmal test and where we had it done, since Quintron is the same company who makes their machine and is excellent. She also said it's different nowadays, "patients do a lot of educating of the doctors." While her statement made me very happy to have someone who is open to new information, it also irked me. We shouldn't HAVE to be educating our doctors. That is what we pay them for. Otherwise, their purpose is what? To write out prescriptions for tests and medications we research and request? Might as well just ditch the doctors and make it an open market.
At any rate, we were there for three hours while Lucy completed the test. She had been fasting since bedtime, and was really hungry by the time we were done. She had had some stomach pain during the test from the fructose, but luckily the Barbie Mermaid movie I had bought for her on my iPad kept her well distracted. It's really no fun giving your child a big drink of something you KNOW will make them sick. She had loose stool that afternoon, a terrible behavioral reaction, and belly pain all night long. Poor thing. :(
The same afternoon as the test, I received an email from the pathologist letting me know that Lucy's test was fine, she showed no signs of SIBO, or even fructmal. Um....what?! She already had a very positive fructmal test. I called her immediately for the numbers, but she didn't have it in her hands anymore. She said her baseline was 15 (which is much too high) and all the other numbers were like 7, 5, 10, etc. I told her it didn't make sense, and by the end of our conversation she said I should talk to the GI about repeating the test. Wonderful. I spent the night worrying, researching why, and even read Quintron's 100 page manual on the tests online.
None of this sat well with me, but I had to wait until the next morning to get her actual numbers. I called first thing and had them faxed over, and sure enough, they were odd. (15, 8, 13, 20, 11, 7, 5, 6, 5, 5...baseline followed by sample every 20 min.) None of it made any sense. After doubting everything we thought we knew, I decided to call Quintron/Breathtrackers for information. They were, in a word, WONDERFUL. The woman I spoke to pulled Lucy's file and saw her first two tests. She knew from the data and our discussion that I had done it all perfectly, and she was actually surprised I did it so well with such a young child. She confirmed my suspicions that they did the test wrong,, that that bag should have been rolled down to the marking for her weight because she is under 100 pounds, and that they never should have had her blow into the bag more than once. By doing so, the air going into the sample bag was not the rich mid-lung air, but instead dead space air...essentially room air...which explains the ridiculously low numbers. She told me that if inwere to decide to let the hospital do the test again, to make sure the lab calls her before doing so so they can get proper instruction. I'm also pretty sure she is calling the lab as well, because this was all done so wrong. (Her real recommendation is that I get the prescription for the lactulose test and do the test at home again.) She even pulled up the info on CHKD and knew which machine they have...and it's old. They don't make it anymore. It only tests for hydrogen, whereas the newer, digital machines also test for methane in case a person has methane producing bacteria, and carbon dioxide, which is extremely important for testing the validity of a sample. If a sample is wrong, the carbon dioxide concentration will be under 1.5%...like the composition of room air. Lucy's first test had carbon dioxide levels around 3.5%, for example. Her one sample that was incorrect on her fructose test the first time had CO2 of .80%, which is why the sample was thrown out. (The woman I spoke with actually did the conversion formula for me while on the phone, and told me that sample's reading converted out to be about 34, though with the CO2 levels what they were, it only read as 5!) Because their machine is lacking the ability to measure these other gases, they have NO IDEA if their samples are proper.
Everything about this hospital just gets more and more disturbing the more time we spend there. For one, this is supposedly the go-to hospital in the area for these hydrogen breath tests, even for adults, yet THEY ARE DOING THE TESTS INCORRECTLY. How many people are walking around out there, thinking they are crazy or have untreatable stomach pain because all of their tests were "negative?" Second, the lab and pathologist assured me of this, that they do this test all the time, for many years...yet both our GI (who is new to the hospital, but has now been there since January) and the people who work with her in the office and made the callbacks to me, all told me that they don't do some tests at the hospital, only the lactose breath test. (Which never made sense to me, bc it's the same test, same machine, just a different sugar solution that the patient drinks.) Third, when we first started with this Dr back in January and she was suspecting EoE and told me she was diagnosing it 2-3 times a week at her old practice in AZ and I asked her if she was familiar with TIGER protocol (the gold standard for diagnosing EoE)...SHE DIDN'T EVEN KNOW WHAT THAT WAS.). Not to mention the time I called three times in one week and never, ever received a callback. Or when I called Patient Advocacy to complain about THAT, and never received a callback from them, either.
So, here we are, again, nowhere. My kid had to suffer for two days from a fructose reaction for nothing, we wasted four hours at the hospital, Stephen had to stay home with the other two on a work day. I complained to the pathologist, who apologized, is trying to have the charges removed, and is supposedly going to look into going new equipment for the. I have left two messages with the supervisor of the lab. I have left messages for the GI who, of course, was not in on Friday. I'm not sure what our path will be tomorrow. I want the GI to either prescribe antibiotics to treat her SIBo based on symptoms or prescribe the test so I can do it at home. I'm also considering a new hospital, like CHdren's Hospital of Philadelphia, which seems like it may have physicians versed in this disorder. All I know is, this is all madness, and shouldn't be happening. Why should it be so hard to get treatment for my daughter?!
Wednesday, May 9, 2012
Tuesday, April 17, 2012
And Then There Was an Answer
Finally, finally, after all the specialists, the tests, the pain, the EGD scope, the pain, the food exclusions and eliminations, the pain...oh the pain, the lack of sleep, the crappy specialists and their lack of help or apparent knowledge of gastroenterology, the elemental formula, the sadness...we have an answer. I'm sure it's not the final answer, but it's something. Something that proves my child nor I are crazy. Something that will finally, finally, finally lead us to a life of semi-normality, a life free of pain for my sweet little Lucy, despite all the odds being stacked against us to ever find a solution (or, rather, the lack of any real help from the medical establishment, both mainstream and alternative.)
This weekend , Lucy took a fructose breath test to test for fructose malabsorption. This means she fasted for 12 hours and then in the morning, drank a fructose solution and blew into a bag into which we stuck a vial that filled with her exhaled air. When one doesn't absorb fructose, it sits in the small intestine and is instead digested by the bacteria that live there. These bacteria devour the sugar and in return output gases, mainly hydrogen and methane, causing intense pain and bloating, among other things. Within 30 minutes of drinking the solution, Lucy was in some pretty intense pain. The clinical standard for a diagnosis of fructose malabsorption is a change in the combined gases of 15ppm...Lucy's changed 81ppm!!!! Definite positive!!
The next thing she needs to be tested for is small intestine bacterial overgrowth (SIBO). This is tested for the in the same manner as fructose malabsorption, only the solution drunk is lactulose. Remember those bacteria I told you about, sitting around eating up the fructose that won't make it's way through the intestinal wall? Well, they don't just sit around eating the fructose. Nope. They multiply. And the more well fed they are, the MORE they multiply, until they have overgrown, and eventually, one has bacterial overgrowth. So now, these bacteria in the small intestine are happy and well fed and reproducing like rabbits and causing more and more gas, and more and more damage. Many of the enzymes with which we digest our foods are actually created in the brush border of the small intestine. As this border is damaged by the bacterial overgrowth, one loses proper production of these enzymes, too, and thus the ability to break down even more sugars -- lactose, disaccharides, and more. Eventually, it doesn't matter what is consumed...the outcome is almost always pain and discomfort.
Now, this is also kind of a chicken and the egg type thing. Sometimes, SIBO happens from other causes in the body - too many antiobiotics, too much constipation, slow motility, etc - and actually causes the fructose malabsorption (fructmal), lactose intolerance, etc; but, sometimes the intolerance can be the cause of the SIBO. The only way to find out is to treat the SIBO with specific antibiotics, follow a specific diet afterward for at least a few months, and retest to see if the intolerances are gone. Often, when SIBO and fructmal/lactose intolerance are found concurrently, treating the SIBO eliminates the intolerances. Even when it doesn't eliminate them, it tends to drastically reduce them, allowing the affected to person to tolerate these sugars in larger amounts (though still small compared to the general population.)
For the time being, Lucy will be following a low FODMAPs diet. FODMAPs is an acronym for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. This is the chart we are using to know what foods are safe. In addition, she is also following the Specific Carbohydrate Diet, or SCD, which is a decades-old protocol for healing the gut. Lucy is currently in Stage One. Lucy also does not have proper enzyme levels for any of the disaccharide sugars, which is part of what makes SCD so important for her. Read about the science of SCD here. While combining the two diets is limiting, it is like a great big buffet after two months on an elemental diet of formula only. Lucy is doing well on it and sleeping better, and in much less pain. We have a long journey ahead of us still, but I feel we are finally, finally, finally traveling the right road.
This weekend , Lucy took a fructose breath test to test for fructose malabsorption. This means she fasted for 12 hours and then in the morning, drank a fructose solution and blew into a bag into which we stuck a vial that filled with her exhaled air. When one doesn't absorb fructose, it sits in the small intestine and is instead digested by the bacteria that live there. These bacteria devour the sugar and in return output gases, mainly hydrogen and methane, causing intense pain and bloating, among other things. Within 30 minutes of drinking the solution, Lucy was in some pretty intense pain. The clinical standard for a diagnosis of fructose malabsorption is a change in the combined gases of 15ppm...Lucy's changed 81ppm!!!! Definite positive!!
The next thing she needs to be tested for is small intestine bacterial overgrowth (SIBO). This is tested for the in the same manner as fructose malabsorption, only the solution drunk is lactulose. Remember those bacteria I told you about, sitting around eating up the fructose that won't make it's way through the intestinal wall? Well, they don't just sit around eating the fructose. Nope. They multiply. And the more well fed they are, the MORE they multiply, until they have overgrown, and eventually, one has bacterial overgrowth. So now, these bacteria in the small intestine are happy and well fed and reproducing like rabbits and causing more and more gas, and more and more damage. Many of the enzymes with which we digest our foods are actually created in the brush border of the small intestine. As this border is damaged by the bacterial overgrowth, one loses proper production of these enzymes, too, and thus the ability to break down even more sugars -- lactose, disaccharides, and more. Eventually, it doesn't matter what is consumed...the outcome is almost always pain and discomfort.
Now, this is also kind of a chicken and the egg type thing. Sometimes, SIBO happens from other causes in the body - too many antiobiotics, too much constipation, slow motility, etc - and actually causes the fructose malabsorption (fructmal), lactose intolerance, etc; but, sometimes the intolerance can be the cause of the SIBO. The only way to find out is to treat the SIBO with specific antibiotics, follow a specific diet afterward for at least a few months, and retest to see if the intolerances are gone. Often, when SIBO and fructmal/lactose intolerance are found concurrently, treating the SIBO eliminates the intolerances. Even when it doesn't eliminate them, it tends to drastically reduce them, allowing the affected to person to tolerate these sugars in larger amounts (though still small compared to the general population.)
For the time being, Lucy will be following a low FODMAPs diet. FODMAPs is an acronym for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. This is the chart we are using to know what foods are safe. In addition, she is also following the Specific Carbohydrate Diet, or SCD, which is a decades-old protocol for healing the gut. Lucy is currently in Stage One. Lucy also does not have proper enzyme levels for any of the disaccharide sugars, which is part of what makes SCD so important for her. Read about the science of SCD here. While combining the two diets is limiting, it is like a great big buffet after two months on an elemental diet of formula only. Lucy is doing well on it and sleeping better, and in much less pain. We have a long journey ahead of us still, but I feel we are finally, finally, finally traveling the right road.
Saturday, January 21, 2012
My Poor, Neglected Blog!
This has been a roller coaster of a year. Perfect time to have been blogging, really...but it was the first thing to be pushed aside. Major update on the way!
Subscribe to:
Posts (Atom)