Dalton has been three weeks today, he seems to be doing really well. Is signing so much more and is SO playful. :) How is is going with the Depakote??? Dalton...
I thought that it was...he was on it awhile ago and we saw marked improvement, but weaned him off it due to the aggression. I think, (without looking at his...
Just want to say hello to everyone and tell you about my son Luke who has LKS. Luke was diagnosed with lks in dec 2007 .He developed normally until he was 7...
Hi there, Sorry that you've had to join our group. What an awful time you've had, sadly, many of us can relate. Can you please tell us more about the steroid...
Hi Peta, Hope your daughter is doing well. Re the Prednisolone; thankfully there are some children for whom a stable dose of Pred works well and if a...
I'm going to start this out saying, I don't think my son has LKS but I"m not sure what is going on, and would love some help figuring it out. My son is 11 1/2...
Hi, I'm Sam, mum to Tai who is 7. Alot of what you say sounds very familiar, Tai lost all of his language completely and had very autistic traits. His...
It totally sounds like your son may have sz's in sleep. The vomiting is a huge red flag and alot of the other stuff you have said as well. Like knowing...
Well firstly i must say what a relief it is to find such a wonderful forum, ive been looking relentlessly for a very long time. Lukes 1st course of steroids...
Hi again, I've never met Prof Neville, but I have heard a few things about him, one of them being he is not open to suggestions about treatments from other...
Hello again, I totally agree with Sam - seek a second opinion. Thankfully the doctors here in Australia are very open to assistance and suggestion because of...
I am in the middle east. Not too much help here. But I can come back to the states for help. I am from the midwest, but can travel basically anywhere...
Yes, I forgot to mention the sign language, that saved us! I did a BSL course at our local college, a bit daunting the thought of going back to college at my...
Hi Sue, If you are struggling where you are, I wonder how easy it is for you to get to France. We went over there from England to get our son an EEG, when he...
now 3 months on hydrocortizone with dulacs protocol and the eeg is still very active. i need to see another dr. plz i need your recomendations. i heard about...
Hi Abeer, I'm sorry I don't really know of any others apart from a doctor in Italy, Dr Guerrini. I've heard good things about him, but have never met him. ...
lots of intersting and helpful comments from parents of lks children ..thank you. i have a lot of faith in Lukes doctors ,they have been very supportive and...
Hi, we're in Edinburgh. Our son Gregor is 9 and started losing speech at 4, diagnosed at 5. The only thing that has really helped is ACTH (steroids) but we...
You have had a terrible time magan.Could i just ask what put you off surgery and are you aware of other children who have had the operation done and was it...
IMO~ my daughter was dxed at age 18mo and she never got speech back until we used Carn-aware. Her EEG is terrible and yet she is still speaking. She has...
Peter, Gregor's EEG has never been focussed enough for surgery; I think they need to be able to pinpoint where the activity comes from. That's why we were...
gina plz again what is carn;aware and what is acth plz gina. thank you .. abeer ... From: Gina S. <donabug2001@...> Subject: RE:...
Hi there, But haven't you come up against a brick wall now? Surely a different type of steroid is preferable to brain surgery? LKS needs aggressive immediate...
Carn-aware is a vitamin suppliment that was put together by Dr. Chez (LKS specialist). It is vitamin E, Zinc and L-Carnosine. ACTH is a corticolsteroid used...
Nutritional Supplement Welcome to the Carn-Aware Website Children around the world affected by Autism and other learning disorders have made...
We have tried lots of medications and drugs. The prednisolone worked well the first time we tried it but not the second and third times. This apparantly is not...
Hi Peter, That is what happened with my son with the Prednisolone, it worked the first time, but not the second. This is when we took Olivier Dulac's advice...
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