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?!
Sunday, May 13, 2012
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!
Sunday, June 26, 2011
The "school" year comes to a close
I breathe a deep sigh of relief as the year comes to a close for us. It's been a tough one. Between food allergies and trying to teach 2 kids, it's been interesting to say the least! All of the focus on health, the cooking, and the lost sleep as a result of reactions was draining, and made it very difficult to stay on task this year. But -- we did it!!!
I had really thought we'd love it, but in reality, I will be very happy when someone purchases our copy of Winterpromise American Story 1 off the trading post online. I wound up really disliking it. Many of the books were way over Lilli's head to the point of tears of frustration (and I was the one reading them out loud, not her!) and the whole thing left a lot to be desired. We wound up having a really great time studying American history this year despite it though! We snuggled up in my bed every night and read oodles of books, reliving everything from Columbus' journey, to Squanto and the Pilgrims, to a great escape of a Native American girl from another tribe, to a family's journey the revolutionary war, and more. We had a blast! And being able to go relive so man of these stories in real life around here in VA made it all the better. We can't wait to go to MA and see more!
Mickade did a TON of work this year in math. We got a little behind our goals with all the moving last year, so he had some extra do this year, and he did great. We started with Math Mammoth which, quite honestly, brought tears, so we moved to the ever-popular Singapore Math 3A. He had a few holes so we backtracked to 2B, moving through it quickly, then back into 3A. He did great with the work, but, quite honestly, the way this program teaches math was too spiral for him and we had tears on a daily basis. I pushed and pushed him through it, when I finally decided this was NOT the vision I had for homeschooling. Never once did I picture us screaming and crying every day when math came out, nor was it EVER this way before us. I'm not sure why it took so long for the lightbulb to go off in my head, but it finally did and we made one more change, this time to Math-U-See. It is mastery based, and different from other curricula in that it focuses on one thing each year. I put Mickade in Gamma, which is multiplication, and he took off! It has been absolutely fantastic for him. He watches a dvd lesson, then does worksheets until he understands it. The program has a whole set of unit blocks that goes with it, and they are used to help the child quite literally see math. He loves it (well, "loves" may be a strong word, but I can say we have not had fighting and tears since we switched.) Because he had background in multiplication but the old program didn't really allow him to get mastery, we were able to go through most of the year's work quite quickly. Out of 30 lessons, we are now on 24 I think, and he will finish it up over the summer. The way it's set up is great, because there are 3 pages for each lesson that focus on the new material, then 3 more that include that plus systematic review of everything from the past. The system makes it easy to customize to each child, since we can do less of the worksheets on topics he gets quickly, and more on the ones he doesn't. There is even a worksheet generator on the website if you need still more. Long story short, he took his first standardized test since VA requires them, and though I don't have the results yet, he kicked butt in math. :) A little hard work goes a long way!
Lillian did great this year. We tend to keep things laid back in K and 1. Lillian is a go-getter though, and even though I had started her with Rightstart Math, she had to have workbooks like Mickade, so she wound up completing Singapore Math 1A & most of 1B, all on her own. Seriously. I barely discussed and answer with her at all. I've learned this year that she is very independent (well, I knew that, but not in regard to learning lol) and hardly wants me in the equation at all! I'm making some curriculum changes for next year, even from what I used with Mickade at this age. I still really like First Language Lessons, but I can tell already she is going to fight me all the way with too much mom-lead work. Since I don't really like Singapore Math, Lillian will move on to Math Mammoth 2 in the fall, since it is an excellent program similar in rigor to Singapore but written to the student, so she can retain her independence and use me when needed! That girl will argue something to death, and never admit she was wrong. She "doesn't need" me to teach her. If she makes a mistake, she finds a way to back out of it as if she knew the real answer, she just wrote that one for fun. Ah, these will be interesting times with her!
Summer is here though, and so is the fun! Our neighborhood is jumping with new kids, they are out playing all the time, and they have a few weeks of camp starting tomorrow (read: mommy vacation time.) We're going to spend most of our time hanging out and having fun this summer, but I'll be slipping in Real Science 4 Kids Chemistry, Pre-Level, over the summer. They've been asking for chemistry and this actually looks FUN, so who am I to deny them? I've never seen a chemistry book explain things to kids in such an amazing way, maybe my kids will have a chance at making it through college chemistry if they need it to achieve their dreams!
I had really thought we'd love it, but in reality, I will be very happy when someone purchases our copy of Winterpromise American Story 1 off the trading post online. I wound up really disliking it. Many of the books were way over Lilli's head to the point of tears of frustration (and I was the one reading them out loud, not her!) and the whole thing left a lot to be desired. We wound up having a really great time studying American history this year despite it though! We snuggled up in my bed every night and read oodles of books, reliving everything from Columbus' journey, to Squanto and the Pilgrims, to a great escape of a Native American girl from another tribe, to a family's journey the revolutionary war, and more. We had a blast! And being able to go relive so man of these stories in real life around here in VA made it all the better. We can't wait to go to MA and see more!
Mickade did a TON of work this year in math. We got a little behind our goals with all the moving last year, so he had some extra do this year, and he did great. We started with Math Mammoth which, quite honestly, brought tears, so we moved to the ever-popular Singapore Math 3A. He had a few holes so we backtracked to 2B, moving through it quickly, then back into 3A. He did great with the work, but, quite honestly, the way this program teaches math was too spiral for him and we had tears on a daily basis. I pushed and pushed him through it, when I finally decided this was NOT the vision I had for homeschooling. Never once did I picture us screaming and crying every day when math came out, nor was it EVER this way before us. I'm not sure why it took so long for the lightbulb to go off in my head, but it finally did and we made one more change, this time to Math-U-See. It is mastery based, and different from other curricula in that it focuses on one thing each year. I put Mickade in Gamma, which is multiplication, and he took off! It has been absolutely fantastic for him. He watches a dvd lesson, then does worksheets until he understands it. The program has a whole set of unit blocks that goes with it, and they are used to help the child quite literally see math. He loves it (well, "loves" may be a strong word, but I can say we have not had fighting and tears since we switched.) Because he had background in multiplication but the old program didn't really allow him to get mastery, we were able to go through most of the year's work quite quickly. Out of 30 lessons, we are now on 24 I think, and he will finish it up over the summer. The way it's set up is great, because there are 3 pages for each lesson that focus on the new material, then 3 more that include that plus systematic review of everything from the past. The system makes it easy to customize to each child, since we can do less of the worksheets on topics he gets quickly, and more on the ones he doesn't. There is even a worksheet generator on the website if you need still more. Long story short, he took his first standardized test since VA requires them, and though I don't have the results yet, he kicked butt in math. :) A little hard work goes a long way!
Lillian did great this year. We tend to keep things laid back in K and 1. Lillian is a go-getter though, and even though I had started her with Rightstart Math, she had to have workbooks like Mickade, so she wound up completing Singapore Math 1A & most of 1B, all on her own. Seriously. I barely discussed and answer with her at all. I've learned this year that she is very independent (well, I knew that, but not in regard to learning lol) and hardly wants me in the equation at all! I'm making some curriculum changes for next year, even from what I used with Mickade at this age. I still really like First Language Lessons, but I can tell already she is going to fight me all the way with too much mom-lead work. Since I don't really like Singapore Math, Lillian will move on to Math Mammoth 2 in the fall, since it is an excellent program similar in rigor to Singapore but written to the student, so she can retain her independence and use me when needed! That girl will argue something to death, and never admit she was wrong. She "doesn't need" me to teach her. If she makes a mistake, she finds a way to back out of it as if she knew the real answer, she just wrote that one for fun. Ah, these will be interesting times with her!
Summer is here though, and so is the fun! Our neighborhood is jumping with new kids, they are out playing all the time, and they have a few weeks of camp starting tomorrow (read: mommy vacation time.) We're going to spend most of our time hanging out and having fun this summer, but I'll be slipping in Real Science 4 Kids Chemistry, Pre-Level, over the summer. They've been asking for chemistry and this actually looks FUN, so who am I to deny them? I've never seen a chemistry book explain things to kids in such an amazing way, maybe my kids will have a chance at making it through college chemistry if they need it to achieve their dreams!
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