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3 Comments
Just had to share this e-mail that I received in this morning...
"Just a note to fill you in on Stephens progress since Christmas. The paediatrician decided to reduce the Epilim first as his ketones were staying below 4. Reducing the epilim did help as you said. According as the epilim came down his alertness increased too and the sieizures remained very mild. We have only just finished weaning the Epilim as he was on such a high dose and his ketones are now above 4.
He is the happiest he has been in years. He is vocalising (or singing as we call it) continuously and smiling and laughing very easily. It used to take a big effort from us to make him laugh last year. He can focus on our faces now (which he found difficult) and concentrate on the object or person in front of him. His teacher at school is thrilled. She said he is like someone coming out of a coma after years. He is much stronger too. He used to have chest infections every 3 to 4 weeks. He hasn't had one since he went on the diet in December. His head control is improving. We have had to get a new harness and headrest for his wheelchair because his upper body strength has improved so much he is pulling out of the current one. I can't describe the difference it has made to his quality of life and consequently, ours!
The paediatrician wants to wean the Frisium next so we are going to wait another week and go very gradually. Thank you so much for promoting and supporting this diet and keep up the good work"
Just had to share this with you - it has made my day reading that - I love receiving e-mails like that. It makes everything worthwhile - go Stephen and WELL DONE that doctor for getting those meds down and giving a drug wean a chance. I like him already! :clapping:
Stephen, quite rightly is going to take his turn in our hall of fame on the front page and wait until you see this cuties picture! What a smile he has!
Made my day reading this.
All the best everyone.
Emma.
"Just a note to fill you in on Stephens progress since Christmas. The paediatrician decided to reduce the Epilim first as his ketones were staying below 4. Reducing the epilim did help as you said. According as the epilim came down his alertness increased too and the sieizures remained very mild. We have only just finished weaning the Epilim as he was on such a high dose and his ketones are now above 4.
He is the happiest he has been in years. He is vocalising (or singing as we call it) continuously and smiling and laughing very easily. It used to take a big effort from us to make him laugh last year. He can focus on our faces now (which he found difficult) and concentrate on the object or person in front of him. His teacher at school is thrilled. She said he is like someone coming out of a coma after years. He is much stronger too. He used to have chest infections every 3 to 4 weeks. He hasn't had one since he went on the diet in December. His head control is improving. We have had to get a new harness and headrest for his wheelchair because his upper body strength has improved so much he is pulling out of the current one. I can't describe the difference it has made to his quality of life and consequently, ours!
The paediatrician wants to wean the Frisium next so we are going to wait another week and go very gradually. Thank you so much for promoting and supporting this diet and keep up the good work"
Just had to share this with you - it has made my day reading that - I love receiving e-mails like that. It makes everything worthwhile - go Stephen and WELL DONE that doctor for getting those meds down and giving a drug wean a chance. I like him already! :clapping:
Stephen, quite rightly is going to take his turn in our hall of fame on the front page and wait until you see this cuties picture! What a smile he has!
Made my day reading this.
All the best everyone.
Emma.
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Paula
04 March 2010 - 10:16 AM
HALLELUJA !!!!! So good to hear this story of Stephen today... want the whole world to hear what a difference this diet can make ! 
Berit
08 March 2010 - 09:20 AM
Wow, that is amazing news!
We have just very slowly started weaning Nicholas off the Orlept and even it is very early days - we can already see a difference
He is more alert, very talkative and happy and it is like his memory is coming back.... Can't wait till he is totally off it and all the other awful drugs as well!
Berit x
We have just very slowly started weaning Nicholas off the Orlept and even it is very early days - we can already see a difference
He is more alert, very talkative and happy and it is like his memory is coming back.... Can't wait till he is totally off it and all the other awful drugs as well!Berit x
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