Seizures - absence or not

[Charlie Arnold]

Well. We survived the night up, many thanks for yours and the HFI board company last night.
The general idea was to put Meg in as reactive state as possible. So I had to keep her up all night and then they did the EEG at lunch time when she has missed a snack and lunch to see if this showed up epilepsy. We managed to stay awake till 3.30 but then I was fighting a losing battle so I left her to sleep for a few hours thinking well, she will still be tired.
We made it up to London and they did a 2 hour epilepsy, lovely people, very thorough but came back negative for epilepsy. In many ways huge relief especially when the consultant said alot of side effects of medication is gastric symptoms. BUT, back to drawing board like everyone else. Probably back to metabolic department, maybe causing hiccups in nervous system transmission so will pursue this more next month when we have our appointment back with them.

I am going to push for definitive HFI tests, enough of this guess work I think then put heads together. But will try for gene test first as they do do it here in Britain.

Will post page link here, did put it on HFI board where they do gene testing.

But this seizure issue does seem to crop up. Is it hypoglycemia, or as Lucky has found electrolyte imbalance or maybe dehydration ( I wonder if you can just balance this out with better fluid and mineral balance) or is it toxicity from fructose at some point in the body but not true HFI.

Or does extreme FM cause acidosis due to bacterial toxicity therefore causing more severe symptoms and this triggers "seizures" but not sufficient to show on an EEG???

Oh the mysteries of this disorder.

[FMmom]

Aah, how well I know that feeling of getting negative results and thinking "damn! no, wait... yay!" But maybe that's just me...

It would be so nice to have an answer, so I'm sorry to hear that this didn't reveal anything. But it did rule out epilepsy, which is nothing but good news. And knowing what it's not does bring you one step closer to finding what it is.

I mentioned Kaelin's blanking out episodes to the pediatrician and she had little to no reaction to that. I assumed that must mean it's fairly common for skinny kids with bad diets to zone in and out. But then yesterday I got a call from the doctor's office and the assistant said that the doctor "never finished the conversation about blanking out and she wants Kaelin to see a neurologist." So much for it being common and ordinary. They made an appointment for her at the end of March. I'm hoping that Kaelin's diet will have improved to the point that her blanking out episodes would be over and we'll be able to cancel the appointment.

Anyway, great news.

[Charlie Arnold]

Thanks guys,

It's weird, I have been through quite an emotional roller-coaster today, probably also due to being exhausted and coming down with a cold.

Yes, its great it isn't epilepsy as that does have alot of knock-on problems, BUT it is treatable, everyone knows about it, and systems would be set up immediately to support her. I'm not imagining the blanking, the struggle at school, the slow brain function when she is trying to work and we are back at the fructose drawing board. I think I might ring the consultant back and ask more about the metabolic seizures, unfortunately the whole appointment went slightly wrong as the consultant ended up having to be somewhere else in the morning so only had about 5 minutes to spare us after the appointment. The whole idea of trekking up to London an hour on the train rather than 20 mins away at our local hospital was that she wanted to be there to do some observations, and I could have asked more questions. By the time we saw her I just wanted to get home.

The other thing I'm thinking is, I know as a general rule epilepsy is picked up more during a sleep EEG, but Meg blanks more when she is doing things and reading, writing etc so maybe thats when they should be reading what the brain is doing.

it is getting very frustrating, things just keep going wrong in diagnosis and it is getting exhausting. When the team member for ADHD went to the school to observe her she was ill that day, had to go into school specially as they didn't have a contact number to cancel. So she went in very drowsy, and all they were doing was practicing for the school play so not a real situation anyway, later that afternoon she passed out. So that was a waste of time......

We then went to the department for a follow up last Friday and the consultant was ill and cancelled half an hour before the appointment so although we saw the nurse we didn't get any further...... another waste of time.

Then we trek up to London, instead of going local, which was exhausting and get another - what it isn't. I think she is going to liase with the ADHD team, but at this point in time I just don't know.

The pattern does seem to be that we all seem to go through the same tests with our kids, all have the same negative answers and the same symptoms going on.

I just want some answers, I want to help this poor kid get through a day without feeling sick, headaches, blanking out, struggling to learn, have lots of energy and want to do things other kids do. oh and be able to eat whatever she fancies. I can cope with the diet thing, if I know it is going to work but I know she needs help with school. There is an ideal school that would help her, not far from us and I know she would get the support, but its private, very expensive and not realistic for me to afford. She could get a funded place if she was statemented but unless she is severely disruptive that isn't going to happen. Because she just quietly can't cope we get nowhere. maybe there is something to be said for bad parenting to get the help......

I think I need to go back to the diet drawing board, chase some better answers, maybe take more control at appointments. I go to them with all good intentions of stamping my feet, then forget to do it when I am in. It kinda makes sense to my fuddled brain that if toxins are building up or metabolic inbalance is occuring then her body and especially her brain maybe can't funcion efficiently. I know how hard it is just typing this sensibly in my tiredness and building up cold, so if she is constantly in that state then no wonder. But how do we solve this, or do we just do damage limitation.

Lucky, your electrolyte theory makes sense if there has been an imbalance, maybe that would trigger brain misfiring, so maybe we can balance that at home with fluid levels. But just how much do you take out of a childs diet, I used to be religeous about the HFI diet, but there were still problems.

And I absolutely understand your worry about "is there something lurking", just so you don't spend their whole life looking over your shoulder.

One good thing about this consultant, she is all for parents like us getting together and making sense of unusual conditions, maybe we just have to take more control.

When I have more energy and stop feeling sorry for myself and Megs then I will start a chart of symptoms and patterns and try to make more sense. But just for now I'm going to pour a large glass of wine and get some more kleenex tissues.