|
|
Post by thewigglesrule on Dec 16, 2008 20:22:08 GMT -5
I have a husband and two children with FI and have found two friends (because I talk about our problem a lot) whose children have it. I have been digging for info for 6 years, fighting for help from the medical system since birth, and was just told about this board by my friend who found it. Very pleased to meet you all and looking forward to reading everything and sharing info.
- Nadine
|
|
|
|
Post by colormist on Dec 17, 2008 9:44:18 GMT -5
Hi Nadine!
Welcome to the board. We try to help the best we can, but most of our information is based on our combined history of trial and error. Does your family have HFI or DFI?
|
|
|
|
Post by thewigglesrule on Dec 17, 2008 12:10:00 GMT -5
Depends on who you talk to through our medical travels. I will stick with DFI because the severity is not as bad as I read when I research HFI. All my info is researched, trial and error and years of frustration. I feel like we do very well now but it is the people around us who just don't get it. Candy given to them because someone feels sorry for them, ice cream and cake when I am not looking, fruit from friends who don't see the sugar connection and think I am harming my kids by restricting fruit. My guys are great, they turn food down because they know I always bring something for them to eat while others are eating the 'good stuff'. They also have been reading ingredient lists and nutritional indexes for a few years now. The school system is a joke unless you are allergic to peanuts. No support there. I feel like I live in a bubble of limits always saying no to things. It is very emotionally and physically exhausting. We have pretty much reached a point of no more pain, cramping, crying (me and them), reflux (ongoing but much better), diarrhea, lack of sleep (from FI anyway), reduced doctors visits, reduced ear infections, and some emotional stability for my family. I am afraid to say things are good because one food can bring us crashing down and starting from scratch. It is nice to know we are not alone, but not nice that is affects so many and there is no help that the medical system willingly supports.
|
|
|
|
Post by colormist on Dec 17, 2008 15:13:16 GMT -5
Have you tried requesting a blood test to check for HFI?
|
|
|
|
Post by thewigglesrule on Dec 17, 2008 16:06:07 GMT -5
they don't do it here in Canada, I have asked. They just do a hydrogen breath test which all three of my guys have been positive for. Tell me more about the blood test? The genetic councellors have ruled out (almost) CF and feel the FI is indeed a genetically linked anomally. As for the endocrinologists and the GI guys, they all say 'don't eat fructose' and can't do anything more to direct us. I find the dieticians especially frustrating because they act like they know stuff when they have no clue and make no effort to research for info. We were with a feeding and swallwing team for a few years and even they had nothing to offer. Do they do a breath test in the US or is it just blood test? When you say blood test are they looking for a piece of DNA that is abnormal?
|
|
|
|
Post by colormist on Dec 18, 2008 9:19:48 GMT -5
The blood test (which is usually sent off to a lab--mine was sent to Texas) only costs around $100, so you might be able to afford it out-of-pocket. They check your genes to see if you have the mutation. The blood test can only detect 70% of the mutations right now (the rest aren't documented, I guess). Dr Tolan's site has more information: www.bu.edu/aldolase/HFI/diagnosis/tested.html and here: www.bu.edu/aldolase/HFI/hfitest/hfitest.htmlThere are a few other tests, but they're less conclusive or more invasive. |
|
|
|
Post by julienc on Dec 19, 2008 20:24:41 GMT -5
The genetic councellors have ruled out (almost) CF and feel the FI is indeed a genetically linked anomally. Hmmm, interesting. If they feel that it is a genetically linked anomally, that implies they think the kids have HFI, Hereditary Fructose Intolerance. Colormist gave you some good links to Dr. Tolan's site. It clearly explains the difference between dietary fructose intolerance (typically diagnosed with a breath test) and the more serious hereditary kind. Either way, it sounds like you're on the right track with the diet and eliminating fructose. Glad you found this site. |
|
