I am a mother of three precious boys (6, 4 & 2)and married to a wonderful man. Our youngest started having little jerks when he was 16 months old. Our pediatrician thought it was shuttering and then we brought him a video tape and he referred us to a pediatric neurologist. Michael was then diagnosed with myoclonic epilepsy and put on Lamicital. 8 weeks after (it takes a long time to get the full dose) he was still having seizures and they were getting worse so they added Keppra. This also did not work so we asked to go to
We have a wonderufl extended family and close knit group of friends that are gathering around us. Most importantly we have a tremendous faith in God and know that he is with us every step of the way. After initial diagnoses we immediately contacted ECI and started him with services, he is also in speech therapy and making strides. We are leaving tonight to go back to
Our Hospital initiates the diet and uses the Johns Hopkins protocol. We are also hoping to meet with the nutritionist to get this appointment made soon. We are praying that we can start this diet soon and that we will see some results. I am going to have to cut this short as we are leaving. I am thankful I found this site and hope to report good news when we return.
Welcome Susan!
It was wonderful to hear from you and a bit sad to hear the history of your son. Your story is all too familiar and I am so thankful that you are strong and have been able to work your way through the medical maze.
Lennox Gastaut is without a doubt a difficult thing for a parent to accept. When I found out that Adam had the same syndrome I remember how devastated I was and how unsure I was what the future would hold.
I am so thrilled to hear that you are starting the Ketogenic diet. You are very blessed to find it so early in his diagnosis. The ketogenic diet seems to work exceptionaly well on kids with Lennox Gastaut and I will be thinking of you and your family as you start this new treatment.
If you run into challenges, hang in there and get all the support you can. The diet is a learning experience but with a little support, you can do it. It is not difficult, just a little time consuming to start.
Please listen to my podcast on the ketogenic diet particularily with Dr. Deborah Snyder as she talks about alot of tips that can help you and I highly recommend her book "Keto Kid" which is full of recipes and ideas to get through the holidays.
Please let me know how your appointment goes in Houston and when you will be starting the diet.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Please let us know how he does
Great news about the Ketogenic Diet. My son loves his Keto meals and is happier than ever. He is about the same age as your son but I know that my son is developmentally at about the one year level. This has made it easy for him to be on the diet. He never fed himself anyways and he eats everything I give him. He especially likes his snacks, whipped cream, apple sauce and some crushed up chewable vitamin. He eats basically the same three meals each day and the same three snacks and he has been free of seizures for 2 1/2 months and he is really happy. Austin had myoclonic and absence seizures when he started on the diet. I hope you have the same success with Michael. My prayers are with you, Kim
Glad to hear from you
Thank you so much for your email. We are going back to Houston on November 3rd to start the diet. It is always good to hear positive stories like yours. Michael is also delayed and having the same type of seizures as Austin so I am hopeful that he responds as well as Austin. Have you seen any improvement in his development? My prayers are with you as well, Susan
new developments
I am seeing improvements in Austin's development each day. It is probably at the rate of a typical child now but I know he has to do everything hundreds and thousands of times before he masters each skill. I'm seeing more improvements as I reduce his medication. He is on Keppra, when he started the diet he was on three meds, so slowly he is getting off of them. He looks at everybody now and interacts with other kids. He has been standing on his own a little too. He walks sideways and front while holding onto something. He says 'mama' and 'dada' and babbles alot. It is so exciting to see him trying new things. I know that Michael will have positive results also. Keep praying and stay positive. I feel the Ketogenic Diet is a gift from god.
Austin's mommy, Kim
We have started the diet - November 3rd
Hi. We have started the diet and with some fine tuning Michael is in ketosis. He was in ketosis while in the hospital and then when we got home he was not. His urine test was reading 40. We have changed to a nutritionits closer to home that has experience with the diet and with a lot of help from her we have had some success. We feed him 5 small meals a day, upped his ratio to 4:1 and watch his fluid intake. All of which seem to help. The greatest thing is not having him on Depakote anymore. Before we started the diet his liver was "not happy" so his neurologist immediately took him off Depakote and everything improved. He is still on 50 mg of lamicital,but that is all. Besides being hungry he is doing well. He is playing with toys, pointing at things he wants and trying to talk. He is much more alert and not so groggy. We are praying that his success continues and again thank you for your email and support.