Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 A little strange, Iann is an old list member, very knowledgable about the diet and has a website on it. He is in the UK. Rumours once were he was trying to open his own ketocentre. I imagine he must be letting the person use his computer and gave them the squish address. Patti wrote: > I am posting this message that came through the squish list in hopes that someone can help this family out....... I am running out the door right now but I was thinking we need to write to them with the link to the yahoo group....... don't respond to this message. Write to them directly at: iann@... > > Patti > Urgent help needed > > My 7 year old son, Idris, is on the ketogenic diet but is in hospital having lots of seizures. We are in the UK and the hospital has very little experience of the diet. > > > > Background > > Idris had infantile spasms at 3 months following vaccination. He went on vigabatrin and lamotrigine but continued to have serious fits. Idris is severely physically delayed. During an illness where Idris vomited a lot his seizures stopped, so we decided to try the ketogenic diet. The diet started in May 1998 but he was not in ketosis until September 98. The diet was reasonably successful though Vigabatrin and Lamotrigine were continued. His K level on the diet was dangerously low and this has been corrected through supplements. In Sept 2000 the hospital decided that 2 years were up and he should be weaned off. By Dec 2000 his seizures returned with a vengeance (with running myoclonics). They used Clobazam and Idris went back on the diet. > > > > Today > > Seizures returned only stopped with Lorazepam, but also on Clobazam (small amount), Topiramate, Phenytonin as well as vigabatrin and lamotrigine. His ketones are very high 16+ consistently for at least last 2 days. His carnitine levels are low (tested 17 4 01) Total carniture 16 (normal range 23-60), free carnitine 10 (normal range 15-33) His body weight is 21.7kg. He is 107cm long and currently has 33.3g fat 5.3g protein and 3.3 carb per meal for 3 meals. His fat % is only 70%. He does not move much and his consultant thought this was OK as he reaches ketosis easily. He has no diagnosis, maybe PEHO like syndrome (autosomal recessive). > > > > Rom Pocock > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 I am posting this message that came through the squish list in hopes that someone can help this family out....... I am running out the door right now but I was thinking we need to write to them with the link to the yahoo group....... don't respond to this message. Write to them directly at: iann@... Patti Urgent help needed My 7 year old son, Idris, is on the ketogenic diet but is in hospital having lots of seizures. We are in the UK and the hospital has very little experience of the diet. Background Idris had infantile spasms at 3 months following vaccination. He went on vigabatrin and lamotrigine but continued to have serious fits. Idris is severely physically delayed. During an illness where Idris vomited a lot his seizures stopped, so we decided to try the ketogenic diet. The diet started in May 1998 but he was not in ketosis until September 98. The diet was reasonably successful though Vigabatrin and Lamotrigine were continued. His K level on the diet was dangerously low and this has been corrected through supplements. In Sept 2000 the hospital decided that 2 years were up and he should be weaned off. By Dec 2000 his seizures returned with a vengeance (with running myoclonics). They used Clobazam and Idris went back on the diet. Today Seizures returned only stopped with Lorazepam, but also on Clobazam (small amount), Topiramate, Phenytonin as well as vigabatrin and lamotrigine. His ketones are very high 16+ consistently for at least last 2 days. His carnitine levels are low (tested 17 4 01) Total carniture 16 (normal range 23-60), free carnitine 10 (normal range 15-33) His body weight is 21.7kg. He is 107cm long and currently has 33.3g fat 5.3g protein and 3.3 carb per meal for 3 meals. His fat % is only 70%. He does not move much and his consultant thought this was OK as he reaches ketosis easily. He has no diagnosis, maybe PEHO like syndrome (autosomal recessive). Rom Pocock Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 patti... Iann is a member of the yahoo group, so the responses can go through here...not sure if it's just someone usinghis computer??? But anyway, this addy will get the responses. Nan ----Original Message Follows---- Reply-To: ketogenic To: " yahoo keto " <ketogenic > Subject: Fw: Urgent help needed Date: Wed, 16 May 2001 10:44:20 -0700 I am posting this message that came through the squish list in hopes that someone can help this family out....... I am running out the door right now but I was thinking we need to write to them with the link to the yahoo group....... don't respond to this message. Write to them directly at: iann@... Patti Urgent help needed My 7 year old son, Idris, is on the ketogenic diet but is in hospital having lots of seizures. We are in the UK and the hospital has very little experience of the diet. Background Idris had infantile spasms at 3 months following vaccination. He went on vigabatrin and lamotrigine but continued to have serious fits. Idris is severely physically delayed. During an illness where Idris vomited a lot his seizures stopped, so we decided to try the ketogenic diet. The diet started in May 1998 but he was not in ketosis until September 98. The diet was reasonably successful though Vigabatrin and Lamotrigine were continued. His K level on the diet was dangerously low and this has been corrected through supplements. In Sept 2000 the hospital decided that 2 years were up and he should be weaned off. By Dec 2000 his seizures returned with a vengeance (with running myoclonics). They used Clobazam and Idris went back on the diet. Today Seizures returned only stopped with Lorazepam, but also on Clobazam (small amount), Topiramate, Phenytonin as well as vigabatrin and lamotrigine. His ketones are very high 16+ consistently for at least last 2 days. His carnitine levels are low (tested 17 4 01) Total carniture 16 (normal range 23-60), free carnitine 10 (normal range 15-33) His body weight is 21.7kg. He is 107cm long and currently has 33.3g fat 5.3g protein and 3.3 carb per meal for 3 meals. His fat % is only 70%. He does not move much and his consultant thought this was OK as he reaches ketosis easily. He has no diagnosis, maybe PEHO like syndrome (autosomal recessive). Rom Pocock Quote Link to comment Share on other sites More sharing options...
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