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200mg and Clobazam being withdrawn currently at 12mg per day.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

[Guest guest]

Dear , I would like to know the story of the onset of Astrid's seizures.

Vaccinations can bring them on. Playing in sand where cats have been can. A

head blow. An allergic reaction. A sleep disorder. A brain tumor. So tell

us as much as you can how and when this began and what possible causes have

you eliminated. I strongly recommend that you get a copy of Prescription for

Nutritional Healing by Phyllis and Balch read the section on epilepsy.

My daughter had grand mals and we stopped them with the advice in this book.

My daughter has been seizure free for more than 10 years now.

Gail Pike

Long Beach California

[Guest guest]

Dear , Try http://bookshop.blackwell.com The isbn number is

1-58333-077-1

The copy I have is third edition printed in 2000. Even an older copy would

have most of the same information in it. I will write again real soon.

Gail Pike

[Guest guest]

Hi- Astrid's seizures were most likely caused by either birth trauma

or vaccine damage, we do not know which, though I suspect the

former. I believe that drugs in childbirth are toxic to the baby and

the true extent of the damage is unknown yet. We are seeing an

increase in neurological disorders which correlates with the

indiscriminate use of drugs in labour. Prostaglandins (Cytotec in

particular) which are used to induce labour are known to cause fetal

hypoxia not to mention instrumental delivery, but don't get me

started... lol! Oh yes... Astrid - her first noticible seizure was

at 8 months old though she was already noticably developmentally

delayed (not sitting up) and suffered no seperation anxiety which I

found strange. She had the DTP and Polio at 2,3 and 4 months of age

with no noticable reactions. She has had no immunisations since (nor

will she). I have summoned my birth notes from the hospital and am

awaiting some interesting reading. You can read the story of Astrids

birth here: http://www.birthlove.com/pages/stories/lisa_astrid.html

and my second daughter Madeline (a wonderful drug free homebirth)

here: http://www.birthlove.com/pages/stories/lisa_madeline.html if

anybody is so inclined! I ordered the book you mentioned but it was

the A-Z of supplements. I can't seem to find anything else by them

(I'm in the UK).

> Dear , I would like to know the story of the onset of Astrid's

seizures.

> Vaccinations can bring them on. Playing in sand where cats have

been can. A

> head blow. An allergic reaction. A sleep disorder. A brain

tumor. So tell

> us as much as you can how and when this began and what possible

causes have

> you eliminated. I strongly recommend that you get a copy of

Prescription for

> Nutritional Healing by Phyllis and Balch read the section on

epilepsy.

> My daughter had grand mals and we stopped them with the advice in

this book.

> My daughter has been seizure free for more than 10 years now.

> Gail Pike

> Long Beach California

[Guest guest]

Hi Ann, Astrid went home yesterday, I plan to call her tonight. I spoke to her last Sunday and she was doing fine. She had a spasm when I was there last Friday (sorry, Astrid), but has not had any more since (untill Sunday that is). It was very weird to see anyone else have a spasm. It was as if I was looking into my very own eyes, I saw her fear and her pain, that was so strange. IsabellaAnn Higgs <lilac_blossom_lady@...> wrote: Hi Anita from me too, Do you know whether Astrid is home yet?Isabella Arnold <arnoldisabella > wrote: Hi Anita, Nice to see/read you on the forum again!!! How are you doing now, two weeks after your myotomy? Does your food go down OK? I sure hope so!!! Dr. Schulz told me that he expects the spasms to go away after a month or 3, so lets keep our fingers crossed, that that goes for you too! Good luck, Isabellabattaglinianita <battaglinianita > wrote: G'day!Last week after recovering from my myotomy at home I suddenly remembered I had a dentist appointment which I had waited two months for. Was umming and aahing about cancelling it, just wanting to stay at home. I eventually went, dragging myself along. At the last minute I thought "I should have brought along some water, as I can easily imagine getting a spasm after the work that the dentist has to do." Well, I completely forgot the water. And afterwards I did get a spasm and I was in a supermarket - buying piles of yoghurt! - and I desperately wanted to grab a bottle of ANYTHING off the shelf. The only thing that stopped me was my weak state and not wanting to have to cope with any reprimands. But I thought, when I'm strong again, I WILL do it.Thanks for enouraging me, you bandits!Greetings across the milesAnita in Germany Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut. Now you can scan emails quickly with a reading pane. Get the new .

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[Guest guest]

Hi Pippa,

Thank you for your note! Yes, I am indeed very happy to have found a good Doctor in Dr. Schulz. I won't let anyone else deal with my Achalasia ever again! When he left Isabella and myself that Friday, he said he was going to do some jobs around the house that weekend. I begged him to please be very careful with his hands, as we needed them LOL!

I will take your advise about the soft diet, although I was a bit puzzled to be given white bread in hospital. Dr. Schulz confirmed I could have it, as long as I chewed very well and used lots of liquids. Dr. Schulz finds it very important that fellow Achalasians meet. He has set up a group similar to this one in Germany and is organising a meeting on 17 March. During the morning there will be some presentations - including info on Achalasia amongst children. In the afternoon, the purpose is to set up regional groups. So far, 80 Achalasians have listed and I am looking forward to meeting them.

I am still in close contact to both Anita and Isabella. These past few weeks have given us a bond I don't think will ever be broken - even though we all hope to get to a stage where Achalasia will not be effecting most of our daily life.

Thanks again Pippa!

Big hug from Holland,Astrid

Re: Astrid

Hi Astrid Its good to see that your doing well and home again. Isn't it funny how the abilty to burp can mean so much.You obviously found yourself a very good Doctor to be able to sit with you and Isabella and answer all your questions together.Please stay with the soft and sloppy diet for a few weeks you will benifit from keeping to it for a while.I can understand how much it meant to see Anita and Isabella while you were in hospital there is so much more you can say in each other company especially when we feel so vunerable and the support must have done you all so much good.I know during my stay in hopsital I received a card and note from Ann and it meant so much to me it help me get through the really bad times during the time upto my surgery I used to read it over and over again to keep me positiveI also kept in contact with Ann and Steve by e mail and Jan and by mobile phone I could not have gone through it all without them.Keep well and its lovley to hear from you so soon after your surgeryPippa x> G'day!> > Last week after recovering from my myotomy at home I suddenly remembered I had a dentist > appointment which I had waited two months for. Was umming and aahing about cancelling it, > just wanting to stay at home. I eventually went, dragging myself along. At the last minute I > thought "I should have brought along some water, as I can easily imagine getting a spasm > after the work that the dentist has to do." > > Well, I completely forgot the water. And afterwards I did get a spasm and I was in a > supermarket - buying piles of yoghurt! - and I desperately wanted to grab a bottle of > ANYTHING off the shelf. The only thing that stopped me was my weak state and not wanting > to have to cope with any reprimands. But I thought, when I'm strong again, I WILL do it.> > Thanks for enouraging me, you bandits!> > Greetings across the miles> > Anita in Germany> > > > > > > -------------------------------------------------------------------> Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > > > > ---------------------------------------------------------------------> Now you can scan emails quickly with a reading pane. Get the new .>

[Guest guest]

Hi Astrid

Its lovely to hear from you again I hope you are still taking things

easy and all is going well.

I have to say that I too was given white bread while I was in

hospital I had a tuna sandwich but used a bottle of water to get it

down and chewed it really really well it was the best tuna sandwich

I had ever had lol and it went down so beautifuly.

I know what you mean about the friendship that you have made with

Isabella and Anita I have a very close friendship with Ann and also

say in regular contact with , , Steve and others from

this board.

I hope to meet up with Ann, Joanne and Meena at the end of April I

can't wait. It will be so great to meet in person there is so much

more you can share face to face.

Me and Ann have gone through a lot together and are very close yet

have never met in person yet. In fact I see , Ann and

more like family after all the help and support they have given me I

will never forget all that they have done for me.

I wish I could be there at the meet up to have so many people with

Achalasia in one place will be fantastic for all those that are

there, they will be able to share so much together and hoepfully

stay in contact and give each other so much support.

Please let me know how its goes on the 17th March you may find out

some more information and treatments that all the members here can

learn.

Lots of hugs and take care Astrid

Love

Pippa (England)

> > G'day!

> >

> > Last week after recovering from my myotomy at home I

> suddenly remembered I had a dentist

> > appointment which I had waited two months for. Was umming

> and aahing about cancelling it,

> > just wanting to stay at home. I eventually went, dragging

> myself along. At the last minute I

> > thought " I should have brought along some water, as I can

> easily imagine getting a spasm

> > after the work that the dentist has to do. "

> >

> > Well, I completely forgot the water. And afterwards I did

> get a spasm and I was in a

> > supermarket - buying piles of yoghurt! - and I desperately

> wanted to grab a bottle of

> > ANYTHING off the shelf. The only thing that stopped me was

> my weak state and not wanting

> > to have to cope with any reprimands. But I thought, when I'm

> strong again, I WILL do it.

> >

> > Thanks for enouraging me, you bandits!

> >

> > Greetings across the miles

> >

> > Anita in Germany

> >

> >

> >

> >

> >

> >

> > ----------------------------------------------------------

> ---------

> > Don't get soaked. Take a quick peak at the forecast

> > with the Search weather shortcut.

> >

> >

> >

> >

> > ----------------------------------------------------------

> -----------

> > Now you can scan emails quickly with a reading pane. Get the

new

> .

> >

>