Fw: [epilepsycured] Barb

[Guest guest]

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 200mg and Clobazam being withdrawn currently at 12mg per day.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

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