Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Penny, Welcome to the list. My keto kid is not tube fed, but I know a lot of kids are. Unfortunately, lots of us have cleared the drugstore shelves, trying to find relief from these seizures. Many have found relief with the diet -- so hold out for so hope. Again, my child is not tube fed, but I know there is a formula that is used for tube fed children & I think it is quite simple to make up. Glad you are part of our list. And don't feel like you are " far away " from anyone, this list keeps us close together. There are many of us who have felt like we are all alone in this epilepsy fight, but trust me, you are not. Let us know how it goes. Kathy - 's Mom - Keto since 02/00 ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 How far north are you in Maine? Would you travel to Boston for the diet? Mass General has a good program.....you might want to consider it if you are in Southern Maine.... Can't help w/ the feeding tube but I wish you well and am sorry to hear about your grand daughter - heartbreaking I know. Barb Swoyer, Jake's mom Hello from MAINE Hello all, I am a granddmother to a little four year old girl, named ALexis with Rett Syndrome,,, since last march the seizurres have come on fast and furious,,,, on medication 6 and 7 now with little sucess so in two weeks we will go into the hopital and begin the keto diet,,,, it will be done thru her feeding tube, which was jsut placed last month. She also has the VNS,,, been set on every setting , it helps some, but she is still not seizure free for any given day let alone hours,,, she has seizure activity spike waves all the time... lately the seizures have been the kind that looks like drop seizures, one minute she is fine and the next she is hitting the floor, even from a sitting position, one minute she is there watching tv and the next she is on her face... I am holding out hope that this diet will help her,,,, right now she is on 1050 cc of pedisure a day....since our last hospital visit last month her seizures are better, but still not any where near being under control,,, she presently is on deprakote, trileptol and we jus t began cloazepam..... so as you can see hopefully the diet will help get her off of some of this medicine,, actually she is going off the deprakote now it is causing her hair to fall out... So i would love to hear from the folks on here how the feeding tube experience is working for all of you, unfortunalty we dont have a greatt resource at our local hospital so we are trying to get information sent on how to go about the start of the diet and what to do for formulas.....any suggestions or guidence anyone has I can pass on to our neuro would be helpful. If there is anyone on here from maine or the surrounding states I would love to hear who you use for guidence with the diet.... thanks for all you help, Penny " 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 January 6, 2004 Report Share Posted January 6, 2004 > I am a granddmother to a little four year old girl, named ALexis > with Rett Syndrome,,, > since last march the seizurres have come on fast and furious,,,, on > medication 6 and 7 now with little sucess so in two weeks we will go > into the hopital and begin the keto diet,,,, it will be done thru > her feeding tube, which was jsut placed last month. Hi Penny, Can't help with the feeding tube, but wanted to welcome you to the group. My daughter's seizures also came on " fast and furious " last spring, when she'd just turned 4. After 2-1/2 months, depakote, clonopin, zonegran, lamictal (and dilantin IV-baaad reaction), ativan (no reaction), reading the experiences of this group made me decide to start the diet and get off the drugs. is doing great....holding my breath to see if it continues, but bottom line is, she is sooo much better on the diet, as the drugs go down. As far as the diet goes, my neuro and dietician are not the greatest help....the group has been my support and salvation. Good luck, you'll get lots of help here. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi Penny, So great to see you've joined the list! Great folks here, mountains of help and support, loads and loads of great info. I'm sure you'll get some terrific responses and ideas, and you can also search the yahoo archives for specific topics (slow because of advertising, but a real help too). You'll find other folks' tube feeding routines pretty much correlate to what I've shared with you about 's...though I must confess I'm naughty... I make up 2 1/2 days' worth of formula for her at a time instead of just 24 hours because I'm admittedly getting sick of the prep. It's not nearly what parents of oral diets go through, and I really do think they should be sainted for all their caring efforts! Oh, and no, despite the RCF manufacturer's c-y-a warnings, we have not seen ANY negatives from making up formula in advance, as it is kept carefully chilled in clean containers. Ask away, this group is WONDERFUL!!! Rose-Marie, mom to , age 7 1/2 Quote Link to comment Share on other sites More sharing options...
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