Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Karina My daughter is on the trials, and the difficulty on getting on them appears to be the lack of dietician's. There are also criteria that must be fulfilled to do with the amount and type of seizures I think. Your are also faced with many sceptics, who believe the only answer is AED's. My advice would be to speak to your doctor, be very clear about what you want and ask what his reasons are for not referring you, (poss lack of knowledge, maybe take any literature you have with you to counteract that one, he may think he is stepping on the specialists toes, ask him to write a letter to the specialist to push the referal, etc.) do the same of the specialists if no luck with the doctor, if still no luck ask to see the area neurologist, and if none of that works and you don't have a good reason for not referring you, you can write direct to GOSH and ask them how to get on the trials. My experience is that the medical profession don't know about everything and don't always have time, so the more leg work you do for them, and the more you ask, the more likely it is to happen. We live in West Sussex, 20 min from NCYPE (National Centre for Young People with Epilepsy) and about 1hr from GOSH, and it has taken us a while to get on it due to the lack of dieticians, we were infomred that if we wished to employ our own it would make it more possible, luckily the dietician came back from maternity and we are underway. The trials are to see if the MCT diet works as well as the Classic Ketogenic Diet and to provide proper clinical trials on the Ketogenic Diet in the UK. My knowledge is limited as we haven't been on it long, also we are on the MCT version, which although much easier to follow for parent and child, is relatively unproven I believe, results are mixed, but I am glad we started on this version for various reasons. If I can help with anything else just ask > Hi All > > Im Karina and my son Jermaine is 9 years old. He has cerebal palsy > with very dificult epilepsy that we have been battling with since he > was a baby. > He presented with myclonic siezures as a baby then developed absences > and at around 6 years old everything got dramatically worse and he > now has most types of siezures except we have never had a grand mal > touch wood. > He has days like saturday where he has siezures pretty much all day > and im desperate to get him on the keto diet at GOSH. > I believe some of you here are on the diet trial there. > > Jermaine has a new paediatrician who i am not too impressed with and > who is not forthcoming with a refferal. Has anyone else here had > trouble getting there child reffered? > I have an appointment with my sons GP on weds to see if i have any > luck there? > > Be interested to hear how others have got on with it.We live in > Harrow in UK. > Thankyou from Kaz > an uneducated mum who is trying to learn as much as possible about > the diet > XXXXXXXX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Karina, We live in Bucks and we asked for the diet when my son was being assesed at the Park Hospital , Oxford. My son has intractable seizures and the Aeds had not really worked for him.They started him off on RadCliffe Diet (MCT based) which was not helpful either. His paediatric neurologist from Oxford wasn't in favour of the diet but had agreed because we insisted. Then they wanted to give up on it but we said that according to the book by Dr.Freeman some children who do not respond to the MCT version, do so with the classical diet and that we wanted to give it a try at Central Middlesex Hospital with Dr.R.Schwartz. Since they hadn't been able to control Rohan's sz. so far they had to agree, and he was referred. I think if you insist they'd agree. If you think I could be of some help you could e-mail me direct. Saro......Rohan's mum kazmum2boys wrote: > Hi All > > Im Karina and my son Jermaine is 9 years old. He has cerebal palsy > with very dificult epilepsy that we have been battling with since he > was a baby. > He presented with myclonic siezures as a baby then developed absences > and at around 6 years old everything got dramatically worse and he > now has most types of siezures except we have never had a grand mal > touch wood. > He has days like saturday where he has siezures pretty much all day > and im desperate to get him on the keto diet at GOSH. > I believe some of you here are on the diet trial there. > > Jermaine has a new paediatrician who i am not too impressed with and > who is not forthcoming with a refferal. Has anyone else here had > trouble getting there child reffered? > I have an appointment with my sons GP on weds to see if i have any > luck there? > > Be interested to hear how others have got on with it.We live in > Harrow in UK. > Thankyou from Kaz > an uneducated mum who is trying to learn as much as possible about > the diet > XXXXXXXX > > > > " 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 May 10, 2004 Report Share Posted May 10, 2004 Hello Saro, Dr. Schwartz is lovely and very experienced with the Ketogenic Diet. She is also one of the trial team as it is a 3 centre trial. NCYPE being the third. Would you mind e-mailing me direct with the difficulties you have incurred getting the ketogenic diet please. I am building a file up of the difficulties etc that parents have to face trying to get a choice of treatments for their children. It is all part of the lobbying parliament process and raising questions with the Health Secretary as well as local health authorities. If you would prefer, I could delete your names if you do not want them public. Kind Regards Emma. > > > Hi All > > > > Im Karina and my son Jermaine is 9 years old. He has cerebal palsy > > with very dificult epilepsy that we have been battling with since he > > was a baby. > > He presented with myclonic siezures as a baby then developed absences > > and at around 6 years old everything got dramatically worse and he > > now has most types of siezures except we have never had a grand mal > > touch wood. > > He has days like saturday where he has siezures pretty much all day > > and im desperate to get him on the keto diet at GOSH. > > I believe some of you here are on the diet trial there. > > > > Jermaine has a new paediatrician who i am not too impressed with and > > who is not forthcoming with a refferal. Has anyone else here had > > trouble getting there child reffered? > > I have an appointment with my sons GP on weds to see if i have any > > luck there? > > > > Be interested to hear how others have got on with it.We live in > > Harrow in UK. > > Thankyou from Kaz > > an uneducated mum who is trying to learn as much as possible about > > the diet > > XXXXXXXX > > > > > > > > " 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 May 10, 2004 Report Share Posted May 10, 2004 Hello Saro, Dr. Schwartz is lovely and very experienced with the Ketogenic Diet. She is also one of the trial team as it is a 3 centre trial. NCYPE being the third. Would you mind e-mailing me direct with the difficulties you have incurred getting the ketogenic diet please. I am building a file up of the difficulties etc that parents have to face trying to get a choice of treatments for their children. It is all part of the lobbying parliament process and raising questions with the Health Secretary as well as local health authorities. If you would prefer, I could delete your names if you do not want them public. Kind Regards Emma. > > > Hi All > > > > Im Karina and my son Jermaine is 9 years old. He has cerebal palsy > > with very dificult epilepsy that we have been battling with since he > > was a baby. > > He presented with myclonic siezures as a baby then developed absences > > and at around 6 years old everything got dramatically worse and he > > now has most types of siezures except we have never had a grand mal > > touch wood. > > He has days like saturday where he has siezures pretty much all day > > and im desperate to get him on the keto diet at GOSH. > > I believe some of you here are on the diet trial there. > > > > Jermaine has a new paediatrician who i am not too impressed with and > > who is not forthcoming with a refferal. Has anyone else here had > > trouble getting there child reffered? > > I have an appointment with my sons GP on weds to see if i have any > > luck there? > > > > Be interested to hear how others have got on with it.We live in > > Harrow in UK. > > Thankyou from Kaz > > an uneducated mum who is trying to learn as much as possible about > > the diet > > XXXXXXXX > > > > > > > > " 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 May 11, 2004 Report Share Posted May 11, 2004 Hi Saro Thanks for that , I will contact you if i dont get anywhere on weds. All the best. Kaz xxx > > > Hi All > > > > Im Karina and my son Jermaine is 9 years old. He has cerebal palsy > > with very dificult epilepsy that we have been battling with since he > > was a baby. > > He presented with myclonic siezures as a baby then developed absences > > and at around 6 years old everything got dramatically worse and he > > now has most types of siezures except we have never had a grand mal > > touch wood. > > He has days like saturday where he has siezures pretty much all day > > and im desperate to get him on the keto diet at GOSH. > > I believe some of you here are on the diet trial there. > > > > Jermaine has a new paediatrician who i am not too impressed with and > > who is not forthcoming with a refferal. Has anyone else here had > > trouble getting there child reffered? > > I have an appointment with my sons GP on weds to see if i have any > > luck there? > > > > Be interested to hear how others have got on with it.We live in > > Harrow in UK. > > Thankyou from Kaz > > an uneducated mum who is trying to learn as much as possible about > > the diet > > XXXXXXXX > > > > > > > > " 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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