Round in a big circle

[charlie]

Round and round we go in one huge circle back to where we were this time last year.
Megs has had some more passing out episodes and looking back at her diary from school and the description they gave of one they witnessed we are now back on the epilepsy route again. I have been keeping an obsessive food, mood and sleep diary for a while now to see if any pattern is forming and it is slowly becoming apparent that whilst she obviously does have a fructose problem it may not be as reactive as I thought and that there in fact two problems going on as sometimes she has had a very careful diet and still black-outs,
She had an EEG last summer which was fine but she was on a good run when she had it so next time she has a blackout or run of blanks we are all set to call an ambulance and get her tested there and then. One thing I noticed it seems to go in clusters and when very bad she chews great chunks or hair! lovely.
Now part of me things oh god no not epilepsy but the other part thinks that these days the drugs aren't too bad and if they help her brain function and become less zoned out then that has got to be a good thing, it may also mean that I don't have to be quite as restrictive with her diet. We shall see, we are back in the waiting zone for referral again, I think the plan is to admit her maybe for several days and try to test everything all in one.

[meaniejean]

Oh Charlie,

I am so sorry to hear that you have more questions than answers these days.

Calvin and I are also very prone to "space-outs." Sometimes I stare off and I can tell that people are talking, but I don't know what they are saying and I can't seem to shift my focus to them. It only lasts for less than a minute, but it can pretty disorienting - ummm, especially when driving - yikes!

I hope that you don't have much trouble getting all your appointments in place and that they can figure things out soon.

Have they ever looked into the possibility of fructose 1,6 diphosphatase deficiency with Megs? The reason I ask is because it causes hypoglycemia and it involves more than just restricting fructose - there is also some optimal ratio of carbs, fat and protein (with the emphasis on carbs). And I believe it can cause seizures.

All the best to you and Megs,
Sandra

[CK]

Hi Charlie,

I had many problems much like what your daughter is going through. After many years of tests, I was diagnosed with Dysautonomia- Postural Orthostatic Tachycardia Syndrome or POTS. There is another form called Neurocardiogenic syncope that has more seizure like activity before a faint.

I thought I would write about this just in case it can be of help to you. A link on more information is: www.dinet.org/NCS/ncs.htm and you can learn more about POTS here too at: www.dinet.org/pots_an_overview.htm . I was diagnosed through a lot of neurological and autonomic tests, a tilt table test, and more. Part of my problem is I wasn't absorbing salt correctly, so I have to eat a ton of salt a day, and that helps greatly to reduce the blacking out, etc. If I get fructose by accident, that triggers this and creates a lot of dizziness.

Feel free to email if you would like. It may not be what she is going through, but you never know if one bit of information leads to another helpful source of information. Dr. Blair Grubb from the United States has a good book called the "The Fainting Phenomena" that is really good too. It can be hard to find doctors who are aware of this, but I know there are a couple in London.

Good luck with everything!
~Colleayn

[charlie]

Thanks for those links Colleayn, what a mouthful!!!
I'll have a proper read through and maybe print it off, there may well be a link, you never know. I'm going to print off a few pages of this board too and show the peds because they keep saying it is totally not to do with fructose but you guys say different. The only possible lack of a link is that she still has them when on the strictest of restrictions but then things can still slip through. We will wait and see, having a few good days, just got to get the sleep back again so my brain can start to function again.

[mazian]

My doctor said that he doesn't know much about Sarisa and what she has but that there are so few in the world that it makes it fifficult for doctors to know everything. However, he is doing really well, and I have been surfing the net responsibly. Did you know that there are some sites suggesting a homepatic treatment for HFI, which is a two month course. The tablet are covered in cane sugar to start with and are made up with plants which are full of fructose. I think that this is criminal. Please be careful if you are trying "natural" medications. I know you wouldn't. I was just shocked.

[colormist]

"The tablet are covered in cane sugar to start with and are made up with plants which are full of fructose."

Mazian, that's just about the most horrible thing I have read related to HFI. The worst part is the condition is pretty easy to treat once you know what foods to avoid. Ugh. I just can't believe someone would suggest that.