HI. My names Alisha and I have a daughter who is 17 months old, Aiyana. She has been having seizures since she was 5 1/2 weeks old and has now gone through very high doses of 5 medications and is considered to have refractory seizures. She has gone through a few different types of seizures as well. There is no known cause for anyt of them. I really would like to try the Ketogenic diet, but seem to be having a really hard time finding any support in my area (Oahu, Hawaii). I have the neurologist on board, but the insurance company had turned down his requests. I am trying to find a good dietitian to help out now too and figure out a way to start it anyway. I would really like to know what success people have had with toddlers on this diet. Any suggestions or comments are welcome as well. I would really like to help her and find a different way other then medications and the ketogenic diet looks the best right now! Thanks for everyones time and support!

Hello Alisha and welcome to the board.
Yes, the diet works miracles with toddlers too. Most keto centers start babies on the diet at 1 year old so your little one isn't too old to try it at all. Actually toddlers are the perfect age to try the diet!!!!
I would start off calling Diana Pillas at 1-410-955-9100. She is THE contact person at John Hopkins who can tell you if there is a keto center anywhere in Hawaii that does the diet or can hopefully refer you to someone who can help you. John Hopkins is known the world over for their protocol of the diet and have done tons of research that prove the diet works. If Diana can't help you, let me know (email me privately from here or contact Birdbomb who can contact me) and I'll see if I can track down some info from Dr. Eric Kossoff or a few keto parents for you. Am pretty sure that Diana Pillas can help you though. If she doesn't answer the phone leave a detailed message and she will call you back.

Thank you so much!! I will call tomorrow! I have read all the book from John Hopkins on the diet. I'll let you know how it goes! Do you know many other parents with children on the diet? Again....thanks!

Yes, I do. This is our 2nd time on the diet-long story but we had to come off the diet the 1st time due to a severe asthma attack that we couldn't control without daily high doses of steriods (Prednisone) which brought him totally out of ketosis and caused him to go into nonstop seizures regardless of how we adjusted the diet or the medications. We were 1/2 pill and 2 weeks away from being able to become medication free when an illegal fire near our home started, Someone had drained a 4 1/2 acre lake and filled it with all sorts of wood and garbage (but mostly wood from construction sites and tree removals) that spontaniously caught fire due to the heat from the wood. Our keto team tried everything they could think of to help Scott but nothing worked so they turned us over to Dr. John Freeman and Mrs. Millicent Kelly at John Hopkins (yes, the ones who wrote the book) who did everything they could to help us. But nothing worked so we had to come off the diet. Those 3 1/2 years on the diet were totally wasted. We had a VNS implanted but that became a totally different nightmare (and still is even though it was removed this past Oct). We tried a few more meds after Scott's VNS was turned off but he continued to have hundreds of seizures a day plus going into nonstop seizures a lot too. Back in Nov. 2004 I asked our Neuro if we could try the diet again as Scott's asthma had been under control and hadn't had an asthma attack in several years and he agreed to let us try again. So on Jan.18, 2005 we started the diet again and are still on it. We are weaning off the diet now. Scott was totally seizure free for exactly 2 years and 13 days but I accidentally gave him 9 meals with sweetened pineapple which caused a few days of mild drop and myoclonic seizures. We were in (and still am) the process of weaning Scott off the diet at the time. We got those stopped but then the medication AcipHex caused several more days of seizures- actually over 2 weeks of nightly seizures. We are back seizure free again (tomorrow will be a week) and trying to recoup. Scott has handled all the seizures (almost a month of them) much better than my husband and I have. The seizures he had were very mild and only lasted a few seconds each-nothing like the seizures he had before the diet. He remains totally medication free. He has been weaned off of Ativan (which he had taken for 13 years), Diamox, Lamictal, Zonegran, Celexa, Clonidine, Ritalin and Trazadone and has been medication free since August 3, 2005. Our keto team insists these seizures are nothing to worry about and that when Scott is totally off the diet they feel he will remain seizure free. So I am praying they are right.
I am a professionally trained Ketogenic Diet Coach being trained by my own keto team and by Mrs. Millicent Kelly herself too to follow the John Hopkins protocol of the ketogenic diet. I coached parents the first time we were on the diet and I coach this time too. I know lots of keto parents all over the world.

Thank you for the number, I will let you know how it goes. I left a message since she is out of the office until the 19th of March. Thank you so much for a number though!
I was wondering if by any chance you had any experience with Lamictal as well, that is the med my daughter is currently on and she seems to be really really shaky a lot of the time, do you know if that is "normal" on that med?
Another question...are you able to start the ketogenic diet at say..John Hopkins and then continue it with phone contact in another state? I know for a fact the Hawaii doesn't have a center out here that does the diet so I am willing to travel wherever I need to, but I just needed to make sure that it was possible to continue the diet from a distance with her still being monitored by her neurologist here (who is wonderful) and contact with the center she started at over the phone.
Thanks again for your time, it means so much!!!!

:Welcome: Crazeehorse19

I am glad Fay is here to help you thru this. She is one smart cookie when it comes to this diet. Good luck to you and your daughter. I hope the diet is a success for you.

Please keep up up to date on her progress. :bigarmhug:

Crazzeehorse, I'm thinking that if your daughter is really shaky on Lamictal she may be on to much. Lamictal is very touchy. The hard part with it is everybody has there own "breaking point" So, it's a very individual thing.
I know for myself all it takes is an extra 50mg and I'm dizzy, shaky, funny feeling. Best thing to compare it to is like one to many glasses of wine. That buzzed feeling.
Maybe you want to look into lowering her dosage of the Lamictal and see if the shakeness goes away.
Good Luck

Sorry this is so late. Scott has some new medical problems and have been seeing different docs to figure out what is going on and what to do. Plus they changed his diet so have been busy trying to make all new meal plans too. Just a lot going on and couldn't post until now.
Scott took Lamictal for about 6 years. It helped the seizures but then we'd have to increase the dose again. It did cause Scott to get shaky too especially when we went up on the dose but it would calm down a lot until we upped the dose again. It affected Scott's behavior in a bad way too and we ended up on several behavior meds because of it and the way it interacted with the other meds. He was on Ativan, Depokote and Klonopin but was weaned off the Klonopin and Depokote the 1st time we were on the diet. After he came off the diet (long story) he was taking Ativan and had started the Lamictal due to the seizures being out of control again but still had to add Zonegran a few months later. Then we added Diamox when he was diagnosed with Intracranial Hypertension and Papilledema hoping it would help with the seizures while reducing the fluid buildup and pressure in his brain. Because of the behavior problems we had to add Concerta, then Celexa, then Clonidine and finally trazadone so he'd sleep at least 3 hours in a 24 hour period. It was a living hell to say the least. Am glad we are off all these medications now. I don't miss any of it!
Yes, you can start the diet at John Hopkins and be followed by phone, fax and email as needed. Tests can be done there by your other docs and forwarded to them as needed. A lot of kids (and their parents of course!) from other states do this all the time.
Most keto centers that were trained by John Hopkins do have kids from other states that they have on the diet and they do this too because not everyone can get into Hopkins. My own keto center has kids from several states that come to start the diet (we follow the John Hopkins protocol of the diet precisely) and are followed by phone and emails too so that is another option if you are interested. You (and your family) are welcome to stay here with us-free- if you'd like and I'll be more than glad to help you with the diet any way I can.

Thank you so much for getting back to me with so much on your plate as it is!!! I really appreciate it! I know I say this frequently, but it really means a lot!
Aiyana is having seizures again on Lamictal and has been in a horrible mood and I honestly think some of it is teething, but I also think it's the meds. I can't wait to start the diet!! I really really think it will help. I will wait to hear back from Diana Pillas and I think we should go from there and maybe come start where you are. I just want to start the diet already...haha...and I think I am getting obsessed with helping her in some way before the seizures take more of a toll on her then not. I think the seizures played a roll in why she is delayed Gross Motor skilled wise, but other then that I think it was all meds (she was on Phenobarbital, Zonegram and an adult(we found out and she was taken off) dose of Topamax all at once and she didn't do anything at all until she was taken off those meds) Then they put us on Dilantin and it worked for a while, but as soon as we tried to switch meds she started having a lot of seizures and we couldn't get the Dilantin levels to stay up again, so we dropped it all together slowly.
I don't know if this has anything to do with it, but if she is anything like me meds are not going to last long with her either...most medicanes usually never touch me or wear off very easily so I am not sure if that has anything to do with it.

Also did you ever go to a naturalpath? I was going to see one that Aiyana's PT recommended that she goes to and has helped her a lot.

As for your son...are you still going to be able to wean if off the diet or will you have to continue for a while longer?
I also was wondering how much money you think it is going to cost to do this diet, I will do it no matter what, but I would like to be a little prepared for it. How long does it usually take to start on the diet at the centers?

Thank you so much for your offer..it honestly makes me tear up finding people that really want to help (I just want to give you a hug), I might just take you up on it! Where about in the states are you?
I hope things are starting to even out for you and I hope your son is doing better!!
Aloha

Hello Alisha. Let me know what you find out from Diana.
The most expensive thing you need for the diet is the scale. You can buy them through most keto centers or even over the internet. Our keto center prefers that parents use the same scale that they use in the hospital and we can purchase them at the genetic clinic near the hospital for about $60. You can sometimes find them cheaper over the net for about $35 to $40 though. Our center uses the Polder 4.4 lb Gourmet Add N Weigh Digital Scale & Kitchen Timer. It runs on one 9V battery that lasts about 6 to 8 months and it has an auto shutoff if you forget to turn it off after using it. You can also clear the scale (tare) between foods so you don't have to keep using different bowls, plates, etc. for each food. It weighs food in grams or ounces and pounds. It's extremely easy to use and keep clean too.
The foods aren't that expensive at all- a little goes a long way on the diet. Cannot use just any brand of hotdog, bologna, cheese, cream, etc but you do have at least 2 or 3 choices to choose from. We use the Oscar Mayer hot dogs, bologna, bacon, boiled ham and use Kraft cheeses. As for the heavy whipping cream (lots of ice cream or whipped cream with fruit-yum!) we use 36% but you might not have 36% in Hawaii so you might use 30%. The keto center that you use will help you with this (and so can I!). The food is fatty and you will use slightly more oils, butter and maybe mayo than you do now but it isn't this huge amounts of fat you think of when you read about the diet. Most of Scott's meals use 60 grams of cream which is about 2 ounces and uses about 25 grams of butter which melts and dissapears beautifully in scrambled eggs. there are lots of ways to hide the fat so don't worry about thinking that you will be making her drink oil or eat pure butter! There are lots of kids who do like to drink it or eat it but Scott isn't one of them. He swears he hates butter but I hide it (at least a few grams) in almost all of his meals and he has NO idea it's even there. I also hide oil in Heinz ketchup (it makes "more" ketchup!) and Hidden Valley Ranch dressing and regular italian dressing. I also marinade his broiled chicken breast or steak in Italian dressing and it makes an excellent cold salad when you have also marinated raw tomatoes, cucumbers, carrots, onions, celery etc in italian dressing too and pour over lettuce.
We even make muffins, cookies, pancakes and waffles that look and taste exactly like the "real" ones using finely ground macadamia nuts and almonds in place of flour. We "make" syrup by melting the butter and adding a few drops of sweetener and maple flavoring.
Instead of pizza crust we make a pizza casserole. It's everything but the crust. You can also do sloppy joes and spagetti.
Scott's dietician changed his ratio back up to the 3:1 and will stay there for a few months before trying to go down again. We'll just be on the diet a few months more than we expected. The goal is to get him stable again for a few months before before trying to waen him off again. I am in NO hurry at all. He used to have hundreds of seizures a day-every day- plus went into nonstop seizures all the time too so these seizures are nothing compared to those. We just don't want him working back to that!
You are usually in the hospital about 3 to 4 days unless she has trouble (which is very rare) with ketosis. And then it depends on how soon she can tolerate the diet (usually another day or two at most). But most kids have no trouble at all.
You can buy the book for about $25 (make darn sure you get the 4th edition of the book that just came out!). It's called The Ketogenic Diet, A Treatment For Children and Others with Epilespy by John M. Freeman M.D., Eric Kossoff M.D., Jennifer B. Freeman and Millicent T. Kelly, R.D.. You can buy it straight out by the publisher Demos Medical Publishing (www.demosmedpub.com) by internet or by money order and the US Post Office. This book is a must when you start the diet at most keto centers (including ours). The 4th edition just came out a few months ago and is very up to date.
You'll also need a few small containers of different sizes (smallest of the round and square sizes) and a 6 pack size soft cooler to keep her food in for trips, daycare, etc. You can buy a few now and simply build up as you go. That's what most parents do including me. A microwave comes in handy to reheat meals but if you don't already have one, you can always reheat as you do now too. If you have a very picky eater a couple of cute plates and sippy cups she's never seen or used before might give a much needed thrill and a surprise too. But if she isn't picky and in the middle of the terrible two's you don't need new ones at all. Scott eats off of regular salad plates. Sometimes you can find plastic ones in bright colors in dollar stores 4 for $1. But you really might not even need these.
If you can email me privately (help us with this BB please!) I will be more than glad to send you a list of keto foods to try before you start the diet. This way you'll know what she'll eat and will like before then. There's nothing worse than getting home from the hospital and make a meal she refuses to eat or doesn't like. It's a LOT easier if the keto kids like their keto foods and to give favorite foods (or as close as possible) too.
Yes, I really WANT to help you---IF you want my help!!! And yes, I meant what I said about staying here free, at our home, too. It would be really expensive to pay for the flight, food, hotel and transportation too. Plus it's scary when you are alone with a child who has seizures a lot and not know anyone or are not familar with the area either. That would scare me an awful lot so can imagine it would anyone else too. I imagine having someone you know at least a little bit would help a lot. So, we are opening our door to you with our sweet southern hospitality! I almost forgot! We live in Georgia- United States!