Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Patti- I am homeschooling all of my children (2 so far!). It is always great to meet fellow homeschoolers. To answer your question I started the flax oil and vit E roughly 2 weeks ago, though we have lost seizure control again, I am still opptimistic, there are lots of avenues to explore, including the full blown KGD. Has Katera had success with the KGD? > -------Original message------- > From " Patti " > Date 29/12/2001 00:51:20 > > > > > > > > > > > Hi ..... and welcome. > > > You didn't say how long > ago you started the flax oil and E...... that's great that you've had such > success with it! What promise! It is wonderful to find that strength within and > feel like you have found something on your own to help your daughter. Now, if > only you can slowly but surely get rid of all the drugs.... what a miracle that > would be! I'm reading Udo Erasmus's book right now, too..... I've had it out > from the library forever and keep renewing it. (Now who will give me the time to > read????). Your story is thrilling and encouraging. I've got to go for now but > wanted to say hello...... and greet you as a fellow special needs homeschooler. > I've been homeschooling my three other older kids (all typically developing) > over the past 16 years. Now, Katera, my special one.... is my only homeschooler > this year. > > Patti, mom to Katera, age > 5 (ACC, microcephaly, global delays) Keto Kid since 10-10- 2000. > 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 > > > > > " The Ketogenic Diet....a realistic treatment > option, NOT just a last > resort! " > > > List is for parent to parent support only. > > > It is important to get medical advice from a professional keto > team! > > Subscribe: ketogenic-subscribe > > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
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