According to the Neurologists, Jetty is the youngest known patient to be put on the ketogenic diet. They can't say for sure because there are several cases in Asia that they don't keep track of. The diet is used for all seizure syndromes, not just Ohtahara.
There are only a couple hundred reported cases of Ohtahara Syndrome world wide. Johns Hopkins has seen 4 of them.
We met with the dietician who explained the details of the diet to us. When Jetty gets older and out grows the formula, he will have to eat spoon-fulls of mayonnaise and butter as his meals. This is devastating to his mommy who despises mayonnaise. Daddy is happy he doesn't have to be on a mushroom diet.
24 comments:
Ewww, mayo, that's the worst! But at least he gets to be a Butterton!
Hey Creg, I just found this good interview with one of the Hopkins neurologists about the ketogenic diet.
http://www.hopkinshospital.org/health_info/Neurological%20Diseases/Reading/freeman_interview.html
Bacon for breakfast, lunch, and dinner...that's my dream diet!
Jetty is too young for red wine, but butter and bacon make everything taste better. I can't wait to share recipes!! -Sara G
I like Tyler's info! Sounds tasty and almost a BLT :)
Jetty, I enjoyed our talk today! Take care of your mommy and daddy.
We love you all!
Aunt Al and Uncle Brad :)
Jetty you are going to be one very cute little butterball!!! Sending you lots and lots of hugs and kisses! -Erin W.
You all three continue to amaze us everyday! You are famous with my friends and co-workers. We think about you all the time.
Again please let us know if can do anything for you!
Stacey (David) Smith
Hi Jetty baby --
Sending love to you and your mom and Dad...
MS Retha and Doc
Jimmy & I have very positive feelings about the success of the Ketogenic diet! Although Meg wasn't as young as Jetty when she began the diet, the diet worked from the very first day. Mrs. Kelly @ Hopkins was our dietitian and we had her on speed dial! Butter, Mayo, bacon, lettuce, Shasta soda and heavy whipping cream...yummmm!You should have tasted the B-day cakes! Meg was always a member of the "Clean Plate Club" and never turned anything down. Keeping her on the verve of dehydration was really the key to the diet's success. We still have her Gram Scale when you're ready for it. call if you need anything. We mean it.
That was supposed to be "Molly & Jimmy" but Meg jumped in on the computer and tried to send her love!
OK Jetty, you're not going to do this alone. If your mom won't eat with you then I'll volunteer. Buy the size of me that won't be much of a sacrifice. Butter, mayo, bacon, whipped cream,....yeah I've got it all in the refrigerator. I can see by the pictures how much you have grown this week. Make sure your mom is eating too. You give her a kiss and big hug from all of us. We are keeping you in our constant prayer. Stephanie calls me daily for "Jetty updates" since she doen't get internet at work and none of us want to miss an update. Love You Marybeth (Elkton)
Hi Jamie and Craig,
I've been following your blog. The NICU is such a hard place to be. I have a neice that suffers from seizures and was on the keto diet for a while. She lives in c-town and I'm sure my sister in law would help you out if she can.
Susan Spray Angell
Jetty...that is my kind of diet I love mayo and butter...I must say he gets more cute everytime I look at the pictures. You all are in our thoughts and prayers...Please let us know if you need anything.
Jonathan and Rebecca and everyone at Eastern Shore Tents & Events.
Jetty...that is my kind of diet I love mayo and butter...I must say he gets more cute everytime I look at the pictures. You all are in our thoughts and prayers...Please let us know if you need anything.
Jonathan and Rebecca and everyone at Eastern Shore Tents & Events.
Lucky Jetty, most are told to stay away from all that good stuff; mayo, bacon, whipped cream. When you come to visit, there will be no problem with having any of that stuff. It's in my fridge all the time. Keep up the good work and make sure Mom and Dad are eating, too. After all, they have to stay strong for you and skipping meals won't do. Love to all three of you. Can't wait for the day I can hold Jetty and shower him with kisses. Don't forget, I'm only a phone call away if you need me to do anything!
LOL,
Aunt Sharon
jeepy always hated condiments!
The most important thing to keep in mind is the younger this kind of brain difference is found the better the child can cope. Jetty is an unwritten book and he's starting fresh with all the opportunities inherent in that.
Wow, that does sound like a delicious diet. We're glad it's not mushrooms too! Jetty really does look like he is growing. What is his weight now? Jetty and your family has inspired a huge community and we're glad we're a part of that. Take care of yourselves as recommended and know we are thinking of your family. Can't wait to see you. Love, Ken & Kathy
Hey Jamie and Creg,
Sending lots of love. Following the blog and thinking about Jetty and you guys! Jetty if beautiful!
We'll get great grandmom Charlotte, to make some of her homemade mayo! Jetty will love it!
Jamie- My sympathies. I'll bring you lots of mushrooms to keep you from gagging when you must dutifully prepare the most disgusting condiment ever invented by humans.
Yea, your Mommy never was too fond of mayo. that's ok, Sydney will eat spoonfulls of it with you.
Hugs and kisses to all of you!
The Wilson clan
The Hicks family sends lots of love. Thanks so much for the effort you are making to keep us all informed. Your boy is gorgeous. We are listening intently and wrapping sustaining energy around all 3 of you.
OXOXOX,
Mrs. Hicks
Jamie and Creg,
Leslie and I are following Jetty's progress with you everyday and send our love and positive vibes. Thanks for keeping everyone informed.
Kent and Leslie Lawrence
Well Jetty I can not wait till you come home and we can have a butter party. I think everyone is just a little envious of you, we all would love to be able to eat like that. You are going to do great and make us all proud. Jon and I are always sending love and prayers.
Love Emily and Jon
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