You remember plan A....
and you probably remember plan B.
Well, I officially announce that I now have a plan C!
Elisabeth's infantile spasms have not stopped, and I feel a bit like I am racing against the clock to find a solution. I just can't sit around and wait while such significant damage is being done. My sweet baby has been on her current med (plan B) for going on 6 weeks. It has failed to make any difference. So I am going to try a new approach. Forget the meds....I am going all natural.
After doing a bit of research I have become quite intrigued by the ketogenic diet. The ketogenic diet was developed by John Hopkins Hospital over 80 years ago as a way to treat epilepsy. This is a high fat, low carb diet that has proved to be extremely successful with controlling seizures and infantile spasms. So we are going to give it a try for dear Elisabeth.
She will be admitted to Sacred Heart Medical Center on Aug 18 so we can get this diet started. Elisabeth will remain in the hospital a minimum of 4 days to keep an eye on her blood sugar levels and to see how her body tolerates the diet. Once we bring her home we will continue the diet with the help of a pediatric dietitian.
There is only one reason why I am not thrilled about keeping Elisabeth to a strict diet for the remainder of her childhood. You see, I often think about how much Elisabeth will enjoy her other senses due to her lacking eye sight. A soft breeze on her face, the smell of freshly baked cookies, the sound of our birds chirping upstairs, and the wonderful tastes and textures that food has to offer. The diet will really cheat her out of the joy of food. Her food intake will be calculated and limited in variety. But I must remember that it might be an answer to prayers. The good news is that Elisabeth will never know all the tastes that she is missing out on. And she won't see that she is eating differently than everyone else.
So keep happy thoughts.....maybe this is our answer!
Elisabeth at the pool with Lorelai and Donald. If you watch carefully you will see her head bob down really quick, once at the beginning and then again towards the end of the video. Those are infantile spasms. You might not even notice it. They look harmless, but unfortunately, that's not the case.
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29 comments:
I thought I had read that the diet doesn't necessarily have to be many many years-that it's possible it could be helpful following it for just a few years-or is that not likely with Elizabeth's case? But whatever is going to give her the best chance at beating this...you have been so pro-active for her. She is very fortunate to have you and Donald as parents!
Who is that hottie holding Elisabeth while she is playing in the water? He looks very familiar...
That would really be great if the diet could help. It would be difficult to know that she couldn't experience all the pleasures of the food, but if it works, it would be worth a try. At least she is younger.
The video is so cute and yet it breaks my heart. I just wish I had the answers for you. Or a magic wand would be nice.
Take care and I'll talk to you soon.
Thanks for sharing the video, I was just thinking how much I've missed seeing Elisabeth! I was going to ask you to post some photos today, but a video is even better! I will be praying that this diet works.
I hope that the diet is the answer you guys need. As always, you and your sweet Elisabeth are in my prayers.
I agree with Jan. The video is so heartwarming and saddening at the same time.
P.S.
LOVED Donald's comment!
I hope this change in diet works for Elisabeth. She's in our prayers.
Praying for plan C...
I'll be praying like I have never prayed before that this diet will work for Elisabeth! As you know I'm all for going the Natural way. I have a lot of hope that this is going to work!!
Thanks for sharing the video of Elisabeth. I didn't know what infantile spasms looked like. Poor baby girl! I see she was still managing to get that binky to her mouth though. :o) She's so cute! I loved how Lorelei just stared at the camera at the beginning. She's even cuter in animation than just in her still pictures. And Donald...his comment cracked me up! :o)
I hope plan C is the answer, little Elisabeth deserves a break!
How wonderful that you can try the natural way with the assistance of doctors and dieticians! I also second Jans comment about your video. We'll all be folding our arms, crossing our fingers...
Love, love, love those girls. I'm so excited for little miss chubby-cakes to start on her diet. Now we will have something new to joke about. Here Elisabeth is only 10 months old and already dieting. See, she is more advanced than the other ten month old babies in one area.
I remember hearing about this diet a few years ago on TV, and it's effects on epilepsy. I hope this will help Elisabeth too, what a blessing that would be.
She is beautiful, and I love that video and the way Lorelai plays with her little legs, so cute!
Elisabeth is blest to have a mother and father who do not give up and continue to research and look for answers. I do so hope this diet will aide Elisabeth in overcoming the spasms.
Your whole family and Elisabeth are so amazing. I really do hope and pray that this will help to alleviate some of her discomfort.
She is gorgeous.
i hope that the diet works for her we will keep you guys in our thoughts and prayers
the beauty of starting at this age is that she doesn't have a list of foods that she LOVES and WANTS. She may even learn to like and enjoy things on the diet if she doesn't know any better. Like you said, even better that she can't see that she's not getting the same food as everyone else.
My little one was playing and suddenly got very quiet when he heard Handel Sonata in G Minor. Might have to see if they've got it on itunes.
Lisa, I have been your blog stalker for a while now...I am a friend of Tania's, and found your blog on hers. Your beautiful family has touched my heart, and I have fallen in love with your little Elisabeth! I admire you so much for all you do...you are such an inspiration to mothers and women everywhere! It is so evident as you read all the comments that you receive...you are truly amazing. There are so many people that love and care for you and your family...have you ever thought of having a special fast for Elisabeth and inviting all your blog readers to join you? Maybe we could all fast that this Plan C will be it for Elisabeth...just a thought! You are always in my prayers!
I love the video- it's hard to tell when she's having those spasms. They're so subtle, it's a good thing you have such a trained eye to them. Good luck on the new diet!
Good luck with starting this diet - I hope this is the answer you've been looking for!
I'm really hopefull for you all.
It's amazing what a change of diet can do for so many situations. Alergies, Autism, Hormones, some big, big, stuff.
Prayers
lisa,
praying that the diet works!! She is just a dolly!! She sure loves her binky! We have friends here in lincoln that did the ketogenic diet for there son and they had great results! He even had "ice cream" -just his own specially home made kind.
Elisabeth is soooo lucky to have such wonderful parents!
Jill
I admire your determination to try absolutely everything you can to ensure Elisabeth's well being. I pray that this route will be successful.
You are a delight, thanks for being you!
You are in my prayers. Elisabeth is a strong fighter. I hope you are feeling peace and comfort. And next time I am in town we need to get together.
Lisa! I've heard GREAT things about this diet! I have a friend whose beeen doing it for a year with her 6 yr old. NO SEIZURES!!! YAY!! Good luck, and I certainly feel your race against the clock!
Hugs!
You always amaze me...I love how your always research...I think it is totally worth trying in every way...It doesn't hurt to try! I love you guys:)
Sweet little Elisabeth...love to see her splashing in the water. You never cease to amaze me. Good luck with the new diet! Hope it works better than the meds!
Nice comment from donald! lol
Hi Lisa,
I just found your blog (just now) while searching for information on the ketogenic diet to control seizures. (My 2-year-old daughter started having seizures about 4 months ago adn we're considering this option.) I know it hasn't been very long since Elisabeth has started it, but I do hope that things are going well.
Best wishes!
Fawn (http://fawnahareo.com)
My daughter has been on the ketogenic diet for 12 months. It has absolutely changed her life. Yes, it's time-consuming and at times inconvenient, the pay-off is that as long as she stays in ketosis, she is seizure free. I have six children and although it's difficult, it IS manageable (just!) Another added benefit is that her medication is greatly reduced. You are actually lucky to be introducing this at such a young age when your daughter is not yet completely independent regarding her food choices. I really hope you have success with this diet. Don't get overwhelmed - take it a day at a time. I wish you all the very best.
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