Astrid

[Guest guest]

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200mg and Clobazam being withdrawn currently at 12mg per day.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