One small step forward??!!

[charlie]

Hmm, we will have to wait and see - but yes, possibly.

we had a follow up appointment to the test they did in the Summer ie the fructose breath challenge and the glucose challenge. Well to start with we saw a completely different consultant who hadn't really read her notes properly and had no proper feedback about the tests. Oh they work so fast in the uk - not.

Anyway we went into her symptoms a bit more, sounds like they are all waiting to hear back from the London Specialist, but sometimes a new set of ears can be helpful and this may possibly be true this time. I had got Meg to draw a chart of how much or when she feels sick in the week and this may be starting to show a pattern. He suggested a rare condition called simple partial autonomic seizures which having done a bit of research makes sense. they are looking into epilepsy again anyway so it may be that it is a distinct possibility.

What is triggering it he didn't know, she would need to see a specific specialist about this. It may mean that some of the food restrictions are unnecessary which would make life easier. I have always been puzzled as no matter how careful I have been with her diet she has had odd bouts of stomach pain, farting for England and headaches.

Maybe, just maybe. Can't find anything on the treatment tho.

[ukbill]

Charlie I hope you get a definitive result and answers soon.

It can be really bad waiting for diagnosis.. but at least you are hopefully getting closer to an answer.

What were the results of the challenge test? Is she HFI as well as this other problem?

I used to have minor "giddy spells" when I was young about 5 years old I think.

But they cleared you quickly as I was able to control my diet more by being more forceful when people were trying to make me eat things that contained sugar.

Only Once Have I had the precursor feeling which preceded the attaches since, and that was shortly after my "Challenge" test when they gave me 10x the correct dose of Sucrose and then Fructose the next day intravenously!

It was a strange feeling like I had smelt something very salty "behind" my nose and a very strong tingling / buzzing feeling in my head..

I know that makes no sense but that's what I remember. There is positivity a smell sensation that went with it.

Anyway best wishes to you both and wishing a quick result.. it will not matter if they are slow just let them get it RIGHT!

[meaniejean]

OOOH - I had a weird smell issue right after my fructose test as well - smelled motor oil (but no one else did ...) and then I started talking jibberish. VERY weird experience.