Re: Fw: [epilepsycured] Barb

[Guest guest]

Barb,

This interesting story is actually a very difficult to write account

of my daughters illness to date, and I am on this list. It is

considered extremely bad netiquitte (and probably against yahoo's

terms of service) to take someones post and forward it on without

their knowledge or permission. It just so happens that I posted the

same post to this group as an introduction, so no harm done. If I

had not, you would have just given a lot of people my personal

details and email address. I find this unacceptable and upsetting. I

hope you have not sent this on to anyone else. Please do not forward

anymore of my postings to anyone without asking my permission.

> Barb , and anyone else interested in

flax/nutritional " healing " - I

> thought this story from another list was interesting....I'm not

trying to

> promote flax oil necessarily, but we've talked about it so many

times. I

> know that kids have had mixed results, but FYI anyway.

> Barb Swoyer

> [epilepsycured] Astrid

>

>

> > Hello everyone. I am so happy to find you people, I am at the

> > beginning of a very exiting journey with my daughter Astrid and I

> > hope to share developments with you and hopefully learn from you

wise

> > people. I should start by telling you a little about us and

where we

> > are at.

> >

> > My name is , I live in England in the UK with my partner

Jonny

> > and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a

> > seizure disorder (current diagnosis 'refractory complex partial

> > seizure disorder'), developmental delay and ataxia. She started

> > having seizures (complex partial with secondary generalisation)

at 8

> > mths old. Her seizures are completely intractable to medication,

> > often working initially, but what seizure control is gained is

always

> > lost later. At her worst Astrid fits every 2 minutes

(effectively in

> > status) and nocturnal seizures are usually more prevalent. The

drugs

> > tried so far are (in no particular order); Carbamazepine, Sodium

> > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine,

epam,

> > Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone,

> > Oxcarbazepine, Pheobarbital. She is currently on, per day,

> > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg,

Pyridoxine

> > 200mg and Clobazam being withdrawn currently at 12mg per day.

> >

> > I will take a moment here to explain the role of pyridoxine. At

one

> > point in Astrid's care, during a hospital stay, pyridoxine was

> > started with an IV loading dose. Her seizures dramatically and

> > suddenly stopped. She was diagnosed with pyridoxine dependant

> > seizures and sent home. This lasted for a few months until the

> > seizures returned (as they always do) so the pyridoxine was

> > discontinued. This was re-started a few months ago in a desperate

> > attempt to regain control but with no effect.

> >

> > Astrid has had many hospital stays including ICU twice. She has

had

> > many EEG's which have ranged from 'zero seizure activity'

to 'severe

> > encephalitis' (which she quite obviously did not have; Two MRI

scans

> > showing 'slight asymmetry of the frontal horns' which seems to

have

> > no clinical significance; Blood tests for metabolic disorders

(all

> > negative); SPECT scan showing some areas of abnormal function;

Lumbar

> > puncture which was 'essentially normal' and the 'Woods Light'

test -

> > nothing found.

> >

> > I mentioned earlier that each time seizure control is gained it

> > always lost again. The amount of seizures will always increase

> > gradually and her appetite decreases in direct correlation to the

> > number of seizures until she is having them all day and night

and her

> > appetite has disappeared. This is the point that we end up in

> > hospital on IV fluids, bolus feeds and enough drugs to make a

junkie

> > jealous ;-). This time was different.

> >

> > Her seizures were increasing (at about 20 per day) and her

appetite

> > decreasing till it looked like another visit to the hospital was

> > inevitable (the next plan is to remove Oxcarbazepine and start

> > Keppra). I read on my Home Education Special Needs list that

people

> > were supplementing their children's diet with flax oil and other

> > essential fatty acids and were getting results with behavioural

> > problems and learning difficulties, so after some research I

excluded

> > Evening Primrose Oil as this seemed to cause seizures in prone

> > children, and decided upon flax oil due to the high proportion

of w3

> > fatty acids, so I began giving her 10mls per day with anti-

oxidant

> > vitamin E 200iu (to aid the metabolism of the flax), hoping to

see

> > improvements in behavior, learning and speech. The results were

> > beyond my wildest dreams. The very next day she had only 2 or 3

> > seizures, the following day only 1 and after 3 days of starting

the

> > flax oil she was seizure free! I am aware that this may have

been a

> > co-incidence but as I have mentioned, deterioration in seizure

> > control has only ever been stopped by hospital admission and

weeks of

> > drug experimentation. I consider this to be a small (though not

so

> > small to us) miracle and I cannot believe that her fits have

stopped

> > without the horror of being in hospital.

> >

> > So, I have begun to research the role of fatty acids in

neurological

> > disorders and found that flax oil has been shown to improve

seizures

> > and that a deficiency in vit E has been show to cause seizures,

so we

> > do not know as yet whether we have this result from flax or from

vit

> > E or both. I know how to find out, but I don't want to change

> > anything at the moment as we are enjoying being seizure free

(apart

> > from the odd `flicker'). I am now on a quest for information, I

will

> > stop at nothing to get Astrid as well as she can be and to get

her

> > off as many drugs as possible as I am sure they contribute to,

if not

> > cause her ataxia and development/behavior problems. I now have

full

> > confidence in nutritional therapies and am becoming increasingly

> > sceptical of allopathic medicine. I have decided to consult a

> > naturopath as I want to optimise Astrid's nutritional state,

> > including counteracting any deficiencies caused by her

medication.

> >

> > I am currently reading Udo's `fats that kill, fats that heal.',

and

> > enjoying learning chemistry with a purpose! I would really value

> > input from you guys as I am unsure where to go next, what books

have

> > you read that has helped you in your quest for health,

recommended

> > websites, relevant studies, anything and everything, not to

mention

> > the value of your experience.

> >

> > Our life has at times been extremely difficult and I had resigned

> > myself to a lifetime of drugs and hospitals. I so desperately

want

> > Astrid to be the person she really is, inside, and would give

> > anything, do anything to make her well. I am so exited to at

last be

> > pro-active in her care, it felt so difficult, and wrong to be so,

> > well, hopeless. I would stand by and believe that the doctors

were

> > doing the very best for her as they gave her drug after drug, and

> > while I do not doubt their intentions, I see now that the

holistic

> > approach stands a better chance. I really look forward to sharing

> > with you, thankyou for taking the time to read this.

> >

> > Love

> >

> >

> >

> >

> >