Post by deb on Nov 25, 2012 0:43:13 GMT -5
Hi everyone,
It has been so long since i have posted here, and before I dive into an update, I just wanted to thank all of you who regularly contribute to this board-- not only did you help keep me figure out what to feed our daughter when she couldn't tolerate any amount of fructose, the support and encouragement given so freely here was a lifesaver in what has been a very hard time in our lives....
Not to bore anyone with our whole life story, but I thought I would just summarize where we were and where we are now. I remember when frequenting this board myself months ago, feeling like I wish I had known what had happened to so-and-so. Also, as luck would have it, some of the answers we ended up finding for our daughter were the result of someone else's "it turned out not to be hfi" post many months ago...
So, in a nutshell, our daughter, now 7, had lots of trouble tolerating fructose since very early childhood - nursed for 2 years and then after weaning started experiencing a lot of problems. We removed dairy, gluten, sucrose (all temporarily with no improvement), and then at 3, she tested off the charts on the fructose malabsorption breath test.
We reduced her fructose intake after the breath test, but didn't completely eliminate it. She continued to have what we were certain were blood sugar issues, but it seemed to be reactive hypoglycemia primarily - along with behavioral issues, rashes, nausea after ingesting certain foods, etc.
Fast forward to 6 yrs of age, our daughter became ill with a virus and after that, her ability to tolerate fructose-containing foods seemed to decrease by the day, if not the minute. She even began developing an aversion to sweets. We put her on a fructose-free diet, and while that helped in some respects, she deteriorated in others. She began to have weird pains in her joints, her heels, and sometimes her hands and feet. At that time, I spent hours on this site pouring through the archives and reading posts about children with similar-sounding symptoms.
It was then that I came across a condition called Familial Mediterranean Fever, or FMF, which Sarah (I believe her handle was MeanJean?) posted about a while back. Her little boy had been diagnosed with this, started medication for it, and was miraculously able to eat fructose containing foods after having been completely intolerant of them previously.
Now, when I first read about FMF on this site, I thought it sounded like a remote possibility but was not very likely because our daughter was not experiencing any fevers. However, we started tracking her temperature and saw that she was actually experiencing low-grade fevers with her episodes of joint and stomach pain. Eventually, we saw a clear pattern, that emerged over months, whereby she would experience some of these symptoms together: low fever, joint pain, chest pain, and stomach pain/nausea.
This past summer, after seeing a rheumatologist, she started a medication called colchicine, the same drug that Sarah's son was taking, and sure enough, ever so slowly, we were able to introduce fructose back into her diet, which was nothing short of miraculous. That said, we didn't, and still don't overdo it.
Unfortunately, this has not been a miraculous diagnosis by any stretch, as there are a number of foods that seem to trigger fever/pain episodes, including lactose and gluten. And the medication is not without some significant side effects. And, like with HFI, the doctors know nothing about it due to its rarity. Lastly, it is possible that she has a different periodic fever syndrome - there are, unfortunately, many. But, we are grateful at least to have even partial answers, and partial therapies, even if they are far from perfect. Interestingly, FMF (and some of the other periodic fever syndromes) are auto-inflammatory conditions, and the liver can be inflamed, along with other organs, in untreated individuals. Certainly made me wonder how that liver inflammation might cause HFI-like symptoms...
So, for whatever that's worth, I thought I would share our story here, in the hopes that it might help someone in the way that we were helped. I think back now to how our daughter would sometimes have high fevers without any cold symptoms (a hallmark trait of periodic fever syndromes) when she was younger, and how my doctor would just say "she runs hot" and " "kids get fevers like that". Had I been aware of this condition earlier on, we could have started treatment much sooner and avoided years of pain and suffering....
Anyhow, best wishes to all of you,
Deb
It has been so long since i have posted here, and before I dive into an update, I just wanted to thank all of you who regularly contribute to this board-- not only did you help keep me figure out what to feed our daughter when she couldn't tolerate any amount of fructose, the support and encouragement given so freely here was a lifesaver in what has been a very hard time in our lives....
Not to bore anyone with our whole life story, but I thought I would just summarize where we were and where we are now. I remember when frequenting this board myself months ago, feeling like I wish I had known what had happened to so-and-so. Also, as luck would have it, some of the answers we ended up finding for our daughter were the result of someone else's "it turned out not to be hfi" post many months ago...
So, in a nutshell, our daughter, now 7, had lots of trouble tolerating fructose since very early childhood - nursed for 2 years and then after weaning started experiencing a lot of problems. We removed dairy, gluten, sucrose (all temporarily with no improvement), and then at 3, she tested off the charts on the fructose malabsorption breath test.
We reduced her fructose intake after the breath test, but didn't completely eliminate it. She continued to have what we were certain were blood sugar issues, but it seemed to be reactive hypoglycemia primarily - along with behavioral issues, rashes, nausea after ingesting certain foods, etc.
Fast forward to 6 yrs of age, our daughter became ill with a virus and after that, her ability to tolerate fructose-containing foods seemed to decrease by the day, if not the minute. She even began developing an aversion to sweets. We put her on a fructose-free diet, and while that helped in some respects, she deteriorated in others. She began to have weird pains in her joints, her heels, and sometimes her hands and feet. At that time, I spent hours on this site pouring through the archives and reading posts about children with similar-sounding symptoms.
It was then that I came across a condition called Familial Mediterranean Fever, or FMF, which Sarah (I believe her handle was MeanJean?) posted about a while back. Her little boy had been diagnosed with this, started medication for it, and was miraculously able to eat fructose containing foods after having been completely intolerant of them previously.
Now, when I first read about FMF on this site, I thought it sounded like a remote possibility but was not very likely because our daughter was not experiencing any fevers. However, we started tracking her temperature and saw that she was actually experiencing low-grade fevers with her episodes of joint and stomach pain. Eventually, we saw a clear pattern, that emerged over months, whereby she would experience some of these symptoms together: low fever, joint pain, chest pain, and stomach pain/nausea.
This past summer, after seeing a rheumatologist, she started a medication called colchicine, the same drug that Sarah's son was taking, and sure enough, ever so slowly, we were able to introduce fructose back into her diet, which was nothing short of miraculous. That said, we didn't, and still don't overdo it.
Unfortunately, this has not been a miraculous diagnosis by any stretch, as there are a number of foods that seem to trigger fever/pain episodes, including lactose and gluten. And the medication is not without some significant side effects. And, like with HFI, the doctors know nothing about it due to its rarity. Lastly, it is possible that she has a different periodic fever syndrome - there are, unfortunately, many. But, we are grateful at least to have even partial answers, and partial therapies, even if they are far from perfect. Interestingly, FMF (and some of the other periodic fever syndromes) are auto-inflammatory conditions, and the liver can be inflamed, along with other organs, in untreated individuals. Certainly made me wonder how that liver inflammation might cause HFI-like symptoms...
So, for whatever that's worth, I thought I would share our story here, in the hopes that it might help someone in the way that we were helped. I think back now to how our daughter would sometimes have high fevers without any cold symptoms (a hallmark trait of periodic fever syndromes) when she was younger, and how my doctor would just say "she runs hot" and " "kids get fevers like that". Had I been aware of this condition earlier on, we could have started treatment much sooner and avoided years of pain and suffering....
Anyhow, best wishes to all of you,
Deb
