My little girl....
Dec 12, 2012 12:16:08 GMT
Post by Charlie Arnold on Dec 12, 2012 12:16:08 GMT
Hi Kate,
Thats good news on the liver function. The gene test doesn't completely exclude as they can only pick up known mutations. This means that if two new mutations from carriers meet each other it creates an undetected one. However, it looks less likely that it is HFI and at least the liver is good and healthy on what you are doing.
So where do you go from here? so many of these kids seem to have a complex sugar malabsorption problem and it is finding a diet that suits them best. If you are trying a few foods I would start on the lowest readings of sugars first.
Have they thought about sucrase-isomaltase deficiency at all as that will also mean looking at different balances, I suggest this as I seem to remember you said Jyoti has a problem with lactose too.
I she completely fructose free at the moment or bits of. Now the grapes are interesting. Supposedly they are ok on the low Fodmap diet but the total sugars in them if you add up fructose, glucose and sucrose is about 17g per 100g so is high, and alot of that is sucrose. also they can kill dogs if they eat them as they can have quite an effect on the kidneys which may be what was happening to her. They are recommended for kidney flushing by nutritionists.
I have started researching a diet for Megs taking into account the sucrose and starch first and then the fructose too as we still arent' sure which one she has and finding the lowest sucrose fruit and veg so maybe try her on a few of those first. Will add the list later when just double checked a few things but cucumber seems to be ok with her so maybe try a bit of that as kids seem to like it to chew on.
Good luck, hope you get some more sleep, oh the night feeds, I remember them well.
Thats good news on the liver function. The gene test doesn't completely exclude as they can only pick up known mutations. This means that if two new mutations from carriers meet each other it creates an undetected one. However, it looks less likely that it is HFI and at least the liver is good and healthy on what you are doing.
So where do you go from here? so many of these kids seem to have a complex sugar malabsorption problem and it is finding a diet that suits them best. If you are trying a few foods I would start on the lowest readings of sugars first.
Have they thought about sucrase-isomaltase deficiency at all as that will also mean looking at different balances, I suggest this as I seem to remember you said Jyoti has a problem with lactose too.
I she completely fructose free at the moment or bits of. Now the grapes are interesting. Supposedly they are ok on the low Fodmap diet but the total sugars in them if you add up fructose, glucose and sucrose is about 17g per 100g so is high, and alot of that is sucrose. also they can kill dogs if they eat them as they can have quite an effect on the kidneys which may be what was happening to her. They are recommended for kidney flushing by nutritionists.
I have started researching a diet for Megs taking into account the sucrose and starch first and then the fructose too as we still arent' sure which one she has and finding the lowest sucrose fruit and veg so maybe try her on a few of those first. Will add the list later when just double checked a few things but cucumber seems to be ok with her so maybe try a bit of that as kids seem to like it to chew on.
Good luck, hope you get some more sleep, oh the night feeds, I remember them well.
