/Josh (this is long)

[Guest guest]

Hi

My name is and our third child, Hannah, is 5yo and has been on the diet for nearly 2 years. Hannah has experienced tonic clonic, complex partial, tonic, absence and myoclonic seizures in her short little life, and she has tried about 6 meds, none of which have given her good control. Hannah has only experienced status sz on a couple of occasions, caused by intake of something which was in direct contradiction to the diet.

Her seizures began in the first few weeks of life, and are due to a brain malformation called polymicrogyria (PMG), which means many(poly) small(micro) hills and valleys(gyrie) on the brain surface. In some parts her brain is flat and, in Hannah, this gross underdevelopment has also caused cerebral palsy, vision impairment and major developmental delays in all areas. She is totally dependent for all things, and we have learned to interpret her sounds and body movements to determine what she is feeling. My guess is that she functions at about the level of a 2 month old baby.

Hannah's case is so severe that she will probably always have seizures, so any treatment for her is aimed at reducing them without the expectation of controlling them. As I said, the drugs have all contributed to control in one way or another, but usually the improvement was temporary, so we moved on from one to another for about three years, until we finally decided to give the diet a go. The diet has helped to reduce sz from up to 20 a day to under 10, with some days better and some days much worse, but the overall effect is one which we are delighted with. Unfortunately for Hannah there have been some things (surgery, illness, mistakes by hospital staff!) which have worked against her to reduce the control she gained, but still the diet has given far better control than ANY of the meds we tried for her.

Hannah is also tube fed (Bard button gtube) and has nothing orally. We use Ross Carbohydrate Free (RCF) formula, Calogen liquid (long chain fatty acids) and polyjoule powder (carbs) for her feeds, and just mix it all together, divide into feeds and give as required. The RCF is soy based, so I'm not sure if it would be suitable for Josh, but perhaps you could look into it. There is something called egg nog that many people use (some here on the list might be able to help with that) but we have never used it. Another post yesterday talked about "Ketocal" as a keto formula with supplements already added. Perhaps this might suit, but I dont know what its base is. Some people do the diet dairy free, but I'm not sure if any of those are doing tube feeds.

Someone suggested trying to wean some/all of the sodium valproate before starting the diet, which sounds like a good idea because it seems to work against the diet. You may also want to ask the list about weaning the valproate in tandem with lamotrigine, as there is evidence to suggest that these two interact with each other and the diet to cause many problems with weaning. We have not done this with Hannah so I cannot comment directly from experience, but there have been many stories from other parents here about it, so hopefully they will be able to help you with this aspect of weaning.

Hannah uses chloral hydrate for sleep too, and will not fall asleep without a sedative. Before the diet we used Vallergan forte for this, but it had too many carbs to use with the diet, so we changed to the C.H. It gets her to sleep, but she always wakes an hour or two later, and a few times during the night but they are usually brief. I dont like the hallucinogen tag that it carries, but have not been able to come up with a suitable alternative. Began to explore melatonin but ran into a brick wall with the ped who wanted us to make major changes to our lifestyle to try and get Hannah to "learn" what a "normal routine" is like (!!!!!! ?????? this woman has no idea what she was asking!!!!!) before she'd prescribe melatonin.

, please write to me any time, on or off list, if you have any questions or just want to chat. I'd love to help if I can. Take care and give those kids a big hug from Hannah and me.

– from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic quad.CP and orthopedic issues that go with it, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant smile)