Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Thank-you Patti for the update Prayers are sent your way I think of you often Sandi Zara--Keto/Atkins Kid--well at least -slowly making the transition after being a keto kid for 3 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Patti, I so hope and pray that this is the answer you've been searching for and yes, I understand what your talking about when you have that little glimpse of hope in your heart that maybe just maybe this might work. Please keep us posted on how Katera is doing. As for diet, is she still scd and low carb or normal diet?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Hi Patti! What great news. I will be praying for Katera and your family for the remainder of the week!!! You all have been through a lot. Take care Gail > Hi everyone.... For those who remember us, anyway. > > Katera just had her surgery to place her VNS last Friday. She did > fantastically well.... it was a breeze. It will be activated this > coming Friday so we're knocking wood like crazy.... pretty excited, > but after all we've been through, almost afraid to hope, you know? I > will keep everyone posted. > > By the way, does anyone have an e-mail address for DeEtte Person, > 's mom? I don't see her in the membership list anymore and I > seem to have lost her e-mail addy. > > Take care everyone.... I'll check in again tomorrow. > > Patti, mom to Katera, age 7, former Keto Kid for 27 months (October > 2000 to January 2003), SCD kid 13 months (April 2003 till May 2004), > currently eating whatever she darn well wants to, for a change > (well, almost). failed include: phenobarbitol, Tegretol, > Keppra...... and she is now tolerant of Diastat to the point where > it really doesn't work. New VNS " Cyber Kid " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Patti, I'm glad all went well. Here's hoping that all continue to goes well for Katera! I searched the archives for DeEtte's e-mail. I went to January 2002 and found posting done by her. It's annarebecca85259@... It actually only listed annarebecca85259@y which I interpreted to mean that it was a yahoo account. If that doesn't work then go into the archives January 2002 and find a posting done by her and send a direct e-mail to her from there. If you get in contact with her then please let me know how she, family and are doing. Rhonda Hi everyone.... For those who remember us, anyway. Katera just had her surgery to place her VNS last Friday. She did fantastically well.... it was a breeze. It will be activated this coming Friday so we're knocking wood like crazy.... pretty excited, but after all we've been through, almost afraid to hope, you know? I will keep everyone posted. By the way, does anyone have an e-mail address for DeEtte Person, 's mom? I don't see her in the membership list anymore and I seem to have lost her e-mail addy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 < > Thanks, ..... and everyone else, too.... I was supposed to put Katera back on Keto as we weaned Keppra, and until the VNS was in place and working...... but..... I just couldn't face it! I really tried to get myself in gear but I just couldn't do it. I just slowly weaned the Keppra and kept her SCD compliant until about a month ago, then I let go just a little. We've seen no difference in seizures. She seems to have a pretty major one about every six weeks, no matter what we do..... but no extra activity was triggered by the wean (Keppra never did a THING anyway). This week, I've really relaxed on the SCD restrictions and that hasn't triggered anything either. She's had bread and pasta (only a little).... and even a real cookie yesterday. I don't plan to ever start just giving her sugar or white flour on a regular basis. It was just like a holiday or something around here to give her a half of a peanut butter and honey sandwich, just like a " normal " kid. I swear.... it was really weird.... she hadn't had a bite of bread, sugar or regular pasta in almost five years! We just couldn't face packing in special food for her hospital stay.... so we just let her eat the standard fare there on Saturday and for the rest of the weekend and this week. So far, no fallout. Anyway.... this is a round-about way of telling you that, since we really were not getting acceptable control from SCD after the first six months (not sure why we got any in the first place), we just can't see sticking to it rigidly if it's not doing the trick. I think SCD is a pretty healthy diet in general... and we'll probably always limit the grain-based carbs and keep making that good homemade yogurt. And Keto.... well, we had a good first year.... good, seizure-wise, anyway..... but, after a time, Katera seems to be unable to tolerate the higher ratios and we battled always with her being overly ketotic.... really just intolerably so. But, then we didn't get good control when down at 2:1.... even though she made 160+ ketones at that ratio. So... I don't know. I just know we could never do Keto for very long, without her responding in the same way. I expect any " low carb " plan... such as Atkins.... would be the same for her, if it involved ketosis. So... hopefully, VNS plus just a good, wholesome, healthy diet (NOT standard American.. no Mcs, Lunchables and soda pop) will be enough. Fingers crossed. You know..... I would just about give my right arm to make these nasty things stop.... as I know many of you would, too. Sometimes I feel like I just about have already. We all deserve a break! Hugs around... Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Hi Patti I am glad everything went well with the op. Knock on wood with you and hope this works for Katera. Rohan is on the waiting list for the VNS here, which means at least 6 months ( we saw the surgeon in early June.) He was ofcourse playing the benefits down - to such an extent that I almost asked 'Why bother?' Anyway we are hoping against hope it'll work for Rohan, so we've got to try! Good luck. Do keep us posted. Saro PS- Sorry Patti, I don't have DeEtte's addy. Patti wrote: > Hi everyone.... For those who remember us, anyway. > > Katera just had her surgery to place her VNS last Friday. She did > fantastically well.... it was a breeze. It will be activated this > coming Friday so we're knocking wood like crazy.... pretty excited, > but after all we've been through, almost afraid to hope, you know? I > will keep everyone posted. > > By the way, does anyone have an e-mail address for DeEtte Person, > 's mom? I don't see her in the membership list anymore and I > seem to have lost her e-mail addy. > > Take care everyone.... I'll check in again tomorrow. > > Patti, mom to Katera, age 7, former Keto Kid for 27 months (October > 2000 to January 2003), SCD kid 13 months (April 2003 till May 2004), > currently eating whatever she darn well wants to, for a change > (well, almost). Drugs failed include: phenobarbitol, Tegretol, > Keppra...... and she is now tolerant of Diastat to the point where > it really doesn't work. New VNS " Cyber Kid " > > > > " 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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