Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hello All, I have just been " approved " to join this group and I am looking forward to getting to " know " everyone! This group came highly recommended because we will be starting the keto diet soon, and I could really use any tips you have to offer in getting started. First, a little background... My name is and I am the mother of a 5 1/2 year old little blonde-haired, blue-eyed princess named Adrielle. Once you meet her you fall in love forever! She has global developmental delays, functional feeding issues (she cannot bite/chew & eats only soft solids that she can mash with her tongue), she is non-verbal but communicates using PECS (picture exchange communication system), and has the diagnosis of Autism and Lennox-Gastaut Syndrome. In working with her challenges.... Adrielle has 38 hours per week of intesive therapy for children with Autism called ABA (Applied Behavior Analysis), 1 hour of OT per week, 1 hour of feeding therapy per week, and 1 hour of PT per week. She also attends pre-school with TSS support one day a week for 2 hours. As far as Epilepsy and LGS is concerned.... " A " was diagnosed with Epilepsy when she was 2. (Autism at 2 1/2) She started out with absence and complex partial seizures and latter added Atonic seizures. She has only had one grand mal seizure to date. We have " failed " several meds and she is currently on Lamictal and Zonegran. She was diagnosed with LGS in March 2004. As is typical with this syndrome, we have battled to maintain control of her seizures and lost control once again approximately 2 months ago. We were given the option of introducing 3 other medications, or, begin the diet. After researching I knew without a doubt what we needed to do. So, on Sunday October 31st we will be admitted to the hospital to begin the diet and I am absolutely confident we are doing the right thing!!! What advice do you have for someone who is just getting started? Let me tell you what we are already doing. I have purchased and I am reading " The Keto Diet " by Dr. Freeman.. 3rd edition, I have already purchased a gram scale from the hospital, and I plan to try a few " recipes " with her before entering the hospital to see how she handles them (just to see how to best get the oils/butter in her in a way she will accept them.... we are not using cow's milk therefore no heavy cream). I must admit that I have not gone through any of the archives yet, and I am sure that there is a wealth of information to be found there, but we are in the middle of potty training and I probably won't have time to go there anytime soon! Aside from advice I would love to hear about your success stories and even your big mistakes, or, just tell me about you. I've heard this is a fabulous group and can't wait to hear from you! Well, being on potty patrol for 10 days has worn me out! I'm signing off for now, but I'll talk to you again soon! Take care~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Lutz wrote: > What advice do you have for someone who is just getting started? Let > me > tell you what we are already doing. I have purchased and I am reading > " The > Keto Diet " by Dr. Freeman.. 3rd edition, I have already purchased a > gram > scale from the hospital, and I plan to try a few " recipes " with her > before > entering the hospital to see how she handles them (just to see how to > best > get the oils/butter in her in a way she will accept them.... we are > not > using cow's milk therefore no heavy cream). Welcome to the list ! You are definitely in the right place, both coming to the list and what you have already done. My other suggestion would be to use this time to not only get her use to some of the foods but to also gradually start reducing carbs, particularly the starches. It can be such a shock to these little ones when their world changes over night and their favourite foods suddenly disappear. I made that mistake with my daughter, felt sorry for her so even though she usually ate pretty healthy I started letting her have more sweets than usual before we started the diet. Boy, did that backfire! LOL Anyway best of luck. When the diet works it is truly like a miracle, a gift from God! And I don't think anyone ever regrets trying it even if it doesn't help. Just remember you have to make a fairly long term commitment (like at least 6 months) to see if it will work, for some it kicks in immediatley, for others it takes some time and work. What meds is she on now? , 's mom, former ketokid for 6.5 yrs (but whose counting??) > > > I must admit that I have not gone through any of the archives yet, and > I am > sure that there is a wealth of information to be found there, but we > are in > the middle of potty training and I probably won't have time to go > there > anytime soon! > > Aside from advice I would love to hear about your success stories and > even > your big mistakes, or, just tell me about you. I've heard this is a > fabulous group and can't wait to hear from you! > > Well, being on potty patrol for 10 days has worn me out! I'm signing > off > for now, but I'll talk to you again soon! > > Take care~ > > > > > > " 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 October 19, 2004 Report Share Posted October 19, 2004 Hi , Welcome to the group! You will get lots of support here from other moms (and some dads, too) who truly understand what you are going through. I'm Cammie, mom to , age 8. Her seizures started out of the blue at age 6. We did a year of meds--what a nightmare! When we started the diet, we stopped one of her meds (depakote). She has been seizure free from the very begining of the diet. We did a quick wean of her second drug three weeks after starting the diet. I can't tell you how amazing it was to watch our little girl come back to us. I really hope the same for you and Adrielle. Reading Dr. Freeman's book is a must. Read it twice if you have time. Take it to the hospital with you. Read it again when you get home. It has so much information in it, it's hard to " get it " all the first time through. After you actually start, things will begin to really make sense. Also, good for you for trying out foods ahead of time. There is no point in struggling over food, so it's good to know her likes and dislikes ahead of time. I know of some kids who eat the same 2 or 3 meals over and over again and are very happy. Others (like mine) get bored quickly and you have to be more creative. There are some good recipes in the files. If you want ideas for specific foods that aren't there, post them. I'll bet somebody can help. Best of luck on the potty training, too ) Cammie > Hello All, > > I have just been " approved " to join this group and I am looking forward to > getting to " know " everyone! This group came highly recommended because we > will be starting the keto diet soon, and I could really use any tips you > have to offer in getting started. > > First, a little background... > > My name is and I am the mother of a 5 1/2 year old little > blonde-haired, blue-eyed princess named Adrielle. Once you meet her you > fall in love forever! > > She has global developmental delays, functional feeding issues (she cannot > bite/chew & eats only soft solids that she can mash with her tongue), she is > non-verbal but communicates using PECS (picture exchange communication > system), and has the diagnosis of Autism and Lennox-Gastaut Syndrome. In > working with her challenges.... Adrielle has 38 hours per week of intesive > therapy for children with Autism called ABA (Applied Behavior Analysis), 1 > hour of OT per week, 1 hour of feeding therapy per week, and 1 hour of PT > per week. She also attends pre-school with TSS support one day a week for 2 > hours. As far as Epilepsy and LGS is concerned.... " A " was diagnosed with > Epilepsy when she was 2. (Autism at 2 1/2) She started out with absence and > complex partial seizures and latter added Atonic seizures. She has only had > one grand mal seizure to date. We have " failed " several meds and she is > currently on Lamictal and Zonegran. She was diagnosed with LGS in March > 2004. As is typical with this syndrome, we have battled to maintain control > of her seizures and lost control once again approximately 2 months ago. We > were given the option of introducing 3 other medications, or, begin the > diet. After researching I knew without a doubt what we needed to do. So, > on Sunday October 31st we will be admitted to the hospital to begin the diet > and I am absolutely confident we are doing the right thing!!! > > What advice do you have for someone who is just getting started? Let me > tell you what we are already doing. I have purchased and I am reading " The > Keto Diet " by Dr. Freeman.. 3rd edition, I have already purchased a gram > scale from the hospital, and I plan to try a few " recipes " with her before > entering the hospital to see how she handles them (just to see how to best > get the oils/butter in her in a way she will accept them.... we are not > using cow's milk therefore no heavy cream). > > I must admit that I have not gone through any of the archives yet, and I am > sure that there is a wealth of information to be found there, but we are in > the middle of potty training and I probably won't have time to go there > anytime soon! > > Aside from advice I would love to hear about your success stories and even > your big mistakes, or, just tell me about you. I've heard this is a > fabulous group and can't wait to hear from you! > > Well, being on potty patrol for 10 days has worn me out! I'm signing off > for now, but I'll talk to you again soon! > > Take care~ > Quote Link to comment Share on other sites More sharing options...
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