Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 , Oh! I'm so sorry to hear about the seizures today. I understand the hope that goes with trying something new, especially when it turns out to be so effective in the begining. I loved your intro post. What a great mom you are! I also have a four year old daughter. She has a dx of cerebral palsy, which was landed on after many other dx, which were excluded for one reason or another. Your stories of trying so many things and spending so much time in the hospital sound so similar to our family. It certainly is not easy! There have been quite a few keto kids that do well with flax oil while on the diet. I would not be surprised, though, if you are right about ketosis. Maybe you were able to generate some ketones with the oil and less food intake. Wonderful to have you here Love Jen- mommy to Marissa (4 years old, cerebral palsy, intractible seizures, keto kid since November 1999, med free since June 2000), (2 years old and very spirited!), and Jade (4.5 months and adorable) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Thanks Kathy - I'll certainly check those books out. Unfortunately Astrid had 3 seizures today, it has just struck me that for the last 2 weeks (since we started the flax) she has not been eating very much at all due to flu and cold's, could it be that she had been in ketosis? She has stopped eating before though, for weeks - due to seizures and they have not stopped spontaneously, then again she wasn't on the flax. So much to think about - so many variables. > -------Original message------- > From " Kathy Greenwood " > Date 28/12/2001 20:29:34 > > > > > > What a fantastic story! We started using the flax oil but then heard that > > it can cause seizures in some children so we decided to cut it out for a bit > > to see if it made any difference. Neat to hear such a success story! I > > have a book called " Treating Epilepsy Naturally " by and > > Blaylock and they mention that a dr treated several children with > > vitamin E with good success. I am about to order another book by > > Blaylock called " Excitotoxins: The Taste That Kills " . Will have to look up > > Udo's book also. > > > > Welcome to the list! > > > > Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) > > > > 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...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 , Yes..... it's been very successful.. although Katera never had a terrific number of seizures. She started having them at 17 days of age..... very generalized ones. I don't know what they would have called them at that point but she always stopped breathing and turned blue...... lasted for 3 to 4 minutes usually. She would have clusters of seizures.... up to several in a day. As she got older, they became more like a tonic-clonic type, with the motor involvement. Her seizures worsened on meds, especially on Tegretol, and we had actually taken her off all meds about 10 months prior to starting the diet, and still, she went several months without any. Then, in August of 2000, she went back to having at least one, sometimes several, tonic-clonic seizures (again 3 to 4 minutes long) a day..... so we knew we had to do something. The neuro offered us two options to try..... Lamictal or the Keto diet. Having had such bad experiences with meds, we opted to go for the diet. The daily seizures stopped after the first day of the diet (October 10th, 2000)..... since then, in fourteen months, we have seen only five seizures.....and these have only been at the beginning of running a fever. She will have just one, and usually mild and short. We have had as long as six and a half months totally seizure free ....until about 5 weeks ago when she had one febrile seizure. Christmas Day, she ran about 103 or higher fever but we saw no seizures at all. So, I'd say this is a pretty good level of control...... anyway, I'll take it. Katera is on a 2.3:1 ratio at the moment and doing well. Patti Re[1]: Astrid 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? Quote Link to comment Share on other sites More sharing options...
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