Update - again

[charlie]

Been up to the Evelina again in London, feel very positive with this consultant, really nice lady, really listened and discussed on my level.
This was the neurologists re her blanking out. they are going to do better EEG, a sleep deprived, food deprived - God its going to be hell. I have to keep her up all night, well that shouldn't be hard as she won't sleep without melatonin.... Not feed her and get her up to London (40 mins on the train) without her fallling asleep or passing out!!!!? yeah right.

But had interesting discussion on if was HFI or FM, she agreed still not safe to rule out HFI, will chat with others and form a plan - first one to suggest that halleluiah she under about 6 consultants. Meg is the first fructose related case she has seen, and she's seen lots, but she has heard of metabolic problems and epileptic problems so there is hope.

Showed her photos of Meg at her worst age 2 1/2, pot belly, large skin lesions, bloated face the works, and only wearing a pair of wellies, Meg was not impressed!!!! Poor kid, how to totally embarrass her, but it was good to show her and I will show the school as all the current team involved have only seen her since I took her off fructose and she has blossomed. How do you keep going in saying, well, my child is ill, she has tummy ache, she passes out, she blanks out, she struggles and is very slow at school when she is on the 75th centile height and weight and has beautiful skin, and in the summer has a stunning tan??? Yes, I wouldn't take me seriously.

But anyway, onwards and upwards, proceed with caution....... and wait for the next appointment.........

[ukbill]

Charlie did I tell you about the "fits" I had when I was 5 years old??

They were more dizzy spells when I would fall over laughing and crying at the same time while the room would spin round and round.. it was linked to a distinctive "smell or feeling in my nose" although it was 50 odd years ago I can still remember it clearly..

So may be its part of the condition or part of something to do dietary wise or gut problems as a result..

I know sometimes if I get a particular type of bad gut it can give me a migraine, with blanked out regions , sparking lights etc of eyesight. So its posible I suppose?

I have a good memory.. Blast it where did I put those car keys..

[esmee]

I am glad you found a doctor who is willing to listen to you.

I hope you can Meg test for HFI soon. She may be one who has a ZERO tolerance for fructose, just like the epileptic children do for carbs in general (or maybe their real problem is just fructose too...wonder if any doctor have check that out??). I have often thought many time over the years what would happen with my own body if I could try the carb-free medical food they give those kids, but never had the money to pursue it.

[charlie]

When I googled metabolic seizures this came up:
Metabolic disturbances: This group of disorders changes levels of various metabolic substances in the body. These disease states sometimes result in seizures.

•Electrolyte disturbances (altered levels of sodium, calcium, or magnesium)
•Hypoglycemia (low blood sugar) or hyperglycemia (elevated blood sugar)
•Renal failure (kidney disease) with uremia (increased urea in the blood) or changes that occur around the time of kidney dialysis
•Hepatic failure (severe liver disease) and elevation of associated toxins
•Hypoxia (lowered oxygen delivery to the brain)

Esmee - a couple of years ago someone mentioned the ketogenic diet when they first suggested epilepsy, when I looked it up she is almost on a ketogenic diet so I did wonder if that was naturally subduing any seizure activity. Now she is on more stuff including table sugar at the moment then maybe she will show more symptoms.

[esmee]

It sounds like something worth exploring for your daughter.

Why is your daughter eating table sugar?

[carolyn]

Good luck charlie. It makes a hell of a difference just to be listened to & taken seriously by the medical profession! It's hard being your child's advocate, & very tiring emotionally. (Our 20 year old son has had ME since age 13). I'm so pleased that you've been referred to a consultant who will recognise Meg's difficulties.

[esmee]

carolyn--is ME the same as CFS here in the US?