October 21, 2007

Miracle

Friday I took the boys for haircuts and overheard a Mom talking to another stylist about seizures. Of course my ears perked up and later I approached the Mom and said that I had overheard her talking about seizures. She told me that she works in a neurology office. I asked which one, and it turns out to be the first place Noah had been "treated."

Pointing to Noah, I said, "That doctor told us he would end up in an institution."

Normally I am not so aggressive, but I still nurse sore wounds on occasion from our earlier horrific experience with Noah's illness. I explained to her Noah's story and how he was seizure-free by day 4 of the Ketogenic Diet, the same treatment we had asked the doctor she works for about, but he didn't believe in it.

She looked at me confused and said she had never heard of a diet- let alone the "Ketogenic Diet" even after I explained to her how it worked and what it entails. And to be honest, I am not sure if she wanted to believe me.

I was appalled. How can it be that someone treats children and adults with epilepsy, but has never even heard of the Ketogenic Diet? How many parents out there are not given the option for this successful treatment- this treatment that took our son from having hundreds of seizures a day to ZERO?

Just Google "diet and seizures" or "diet and epilepsy" and it comes right up. I don't expect just anyone to have ever heard of this diet before, but if you specifically treat epilepsy, um, call me crazy, but shouldn't you know about this!?

I obviously didn't know about it when Noah first started having seizures and I sure wish those doctors had at least suggested it or offered it as a treatment option. True- it's not a pill, and it's not easy. Noah was on the diet for over 2 1/2 years, and although it is tough, it's totally do-able. And it was much easier than watching him have seizures all day and night long.

The Ketogenic Diet is not a guaranteed cure, but neither is any epilepsy medication. It's a valid and successful treatment option that should be offered to every parent with an epileptic child.

And I will state the obvious: Unfortunately, if doctors in our area suggested the Keto Diet to their patients, they'd lose them as a patient as they'd have to refer to a bigger hospital in Chicago where there is a trained Ketogenic Diet staff. So, they will lose money. BUT they might possibly save a life. I would hope they'd make the right choice.

I dream that someday there will be more Ketogenic Diet centers available, and not just in big cities.

After Noah was seizure-free, I did send that first doctor a kind note telling him about Noah's success and asked that he please give the Ketogenic Diet more consideration next time. It breaks my heart that his own staff still knows nothing about it.

I'm on a mission to spread this message again- we've done newspaper articles and so forth, but now I'm contacting all the neurologists in my area directly. They should expect to be receiving a nice card from me soon- telling the good news of Noah's story and requesting that they at least consider the diet for their patients, and train their staff to know more about it. Now, they will never be able to say they didn't know.

Below is a video of my miracle, Noah- progressing wonderfully in the 1st grade, improving amazingly with his reading, and next week he will be 3 years seizure-free.




You can read more about Noah's story here.

This video has my heart bursting with pride.

Life of the Day, Day 08

46 comments:

  1. I have to admit I had no idea what it was, until I started reading your blog - I commend you for what your doing, EVERY DAY! You go girl ((LOTS OF HUGS)))

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  2. Oh, that's understandable- but I think if you worked with children suffering from epilepsy, you should know what it is!!

    Steph

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  3. Okay, I didn't go to bed yet. Just like the GFCF diet, every diet can do amazing things. We notice changes in AJ when he has something he shouldn't. You're right, any doctor who works in the field of epilepsy should know how to treat it but, there are doctors out there who are purely medical and won't even admit there are natural remedies.

    Our doctor is one of them and refuses to admit that AJ does better biomedically than "medically".

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  4. That is sad. Personally, I think you hit the nail on the head when you said they would lose patients. For some doctors it is more about affording their lifestyle than saving patients.

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  5. Any time we hear or hear of someone whose child is battling seizures (only like 3 times) we refer them to your blog. I wish you had like business cards or something that we could give out! People just don't know!

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  6. You're awesome! I was so impressed when I read Noah's story, and now I'm even more so. It's wonderful that you're writing to doctors - it's going to help so many families.

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  7. I'm so in awe of you. It takes guts to send notes to all those doctors, and I'm so proud of you for not settling and for being a voice out there for kids like Noah.

    Even though we are just one voice, God is bigger than all of it and can use that one voice for greatness.

    That video makes me all mushy inside. :) Love that guy!

    `A

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  8. he is so precious! i loved the story time with him. bless his heart. he is so sweet. i LOVE your blog :)

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  9. ARGH. I can understand your frustration. Frankly, I'm horrified. It's just further proof that you have to take your medical care (and that of your children) into your own hands. Congratulations on your beautiful little boy.

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  10. I'd heard of the Ketogenic Diet before and I don't even know anyone with epilepsy! How on earth could someone in the medical field not know? I can see why you are so frustrated.

    I think that sending your son's story to the local doctor's is an excellent idea. You should add a cd/dvd of that precious little boy reading too. That should get their attention. He's so cute.

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  11. Hi Steph, your posts have led me to look up vaccines here in canada. I want to thank you.
    I don't know if you know, but the mercury stuff is only in the hep B and flu shots here....BUT the boosters do contain small traces of formaldehyde and aluminum stuff....not so good...
    also, the Measles/Mumps/Rubella is preservative free BUT has still been linked to terrible effects.

    thanks for all your info...I will continue to look into these things for my children.

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  12. Wow! That's amazing! I figured everyone knew about it, because its helped so many kids! Your story is truly amazing and your little boy looks healthy and happy! Congrats to all of you for the 3 yrs of being seizure free! :) Such an amazing story!

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  13. Oh, Steph, what would be BOTH do without Chicago's hospitals???? I am so thankful we live close to The Windy City!!! I think about Noah, Matt, Mark, my Dad....the list goes on and on!!!

    Lori

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  14. I don't get it. Didn't anybody else watch "First Do No Harm?" 1990's movie with Meryl Streep and that guy.... umm... what's his name? ANYway. I agree. If you SPECIALIZED in epilepsy and other brain disorders, wouldn't you at least KNOW about it? Even if you didn't believe in it, which I don't understand - aren't homeopathic remedies usually as valid as chemical?

    My sister has epilepsy and is currently pregnant with baby #2. She didn't do the keto diet, mainly because her chemical treatments (dilantin, etc.) work for her. But the potential problems for the baby she's carrying is unknown and scary (hence the study she's participating in again, to gather information for future patients).

    Noah is truly a miracle. I am so happy for you that he responded so well to the diet. I see you being a big advocate in the future for this....

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  15. Im glad you spoke up. Who knows you speaking up to that nurse may help a lot of moms... because now she atleast knows the name of the diet and what it can do.

    That is crazy though that so many Dr's are uneducated about certain things in their field.. and dont even seem to care sometimes.

    Noahs very cute reading his book :-) brings back memories of my brother and I reading to my mom on video.

    So sweet

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  16. Wow good for you Stephanie. You are doing the right thing and hopefully that will spur at least one if not more doctors to take notice and act.

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  17. I think it's a great idea to contact Doctors in the area. I agree with Mary. If they could see Noah now, it might change a lot of minds.

    Oh, and I went back and tagged you.

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  18. I am so glad you found somewhere to go for the diet, I have noone who will believe me medically about my son's vaccine injury except my chiropractor. But, we found a great detoxer from Mercola.com and he has improved dramatically.
    But my doctor still won't believe it.

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  19. Fabulous post! I'm so happy that you DID hear of/find the diet and that it has worked such a brilliant miracle--keep gettin' the word out there about it!!!

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  20. That is just the most adorable video of Noah ever!! And good for you for not just doing what the DR. says, but for looking for your own solution too. I have too many friends who just do 'whatever the dr. says' even if it doesn't work!!

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  21. I feel the same way about natural remedies. Physicians ought to at least be OPEN to them, because in many, many cases they work. Did you know that cutting sugar out of your diet can help slow the growth of cancer? Cancer cells feed on sugar and grow whenever your body takes it in...but do the Drs tell you that? No. Kudos to you for doing the BEST thing for your son -- I'm so glad it worked out for you, and that you are taking it to the next level and spreading the word to the Drs.

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  22. Good for you for speaking up like that. And you're right (how sad it is) that it probably does come down to money. And even if that's not the main reason, it's still there, and that's terrible. Doctors have a responsibility to help patients first and foremost. Continue doing what you're doing - you're educating a lot of people!

    Jane, Pinks & Blues

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  23. Congratulations Noah on a book "well read"! I love & miss you!
    P. S. Steph keep up your mission to get the 'word out'! You're an advocate for children suffering from epilepsy! I'm so proud of you girl!

    Aunt Diane

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  24. You go, Steph! Good for you and thank God for Noah's success.
    Love,
    Trish

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  25. Somebody needs to spread the word of this diet for seizures, as Jenny is for Candida diets (and no gluten diets) for Autism.

    I'm happy to see the person trying is you! Your son is a miracle. And you're a great mom to have found this diet, done your research, went againts what the doctor thought, trusted your instincts, and went for it!

    I'm so happy for you, your son, and your family.

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  26. Good for you doing all you can to spread the word about the diet that helped Noah. Maybe what you said will stick with that nurse and change the answers another mom gets in the future.

    Way to go, Noah; you read so well!

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  27. I think you're right and people who work with children should definitely know all of the options available to treat patients. I think it's sad that this nurse still had no idea. I think it's wonderful that we have the internet and can research alternative practices and that is what saves alot of kids. Great job!

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  28. I think you should contact all the doctors in this area.

    Keep spreading the word Steph, Noah is a miracle. You give hope to so many parents when the doctors fail to.

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  29. Congratulations on 3 years seizure free! He is an encouragment. Can I ask, is he still on the diet? Or was he weaned off?

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  30. This is the most precious video of Noah. He is truly a miracle. I thank God everyday that we have our Noah back, 100% whole.

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  31. I think most of the time doctors just want to push meds on everyone, and if there is a treatment that is not about meds they don't want to discuss it. So infuriating.
    You are so blessed the the diet worked so well for your little man. Such a miracle.

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  32. Your blog is the first I had heard of this diet. All through nursing school and I even worked at a pediatric dr. office as well and I had never heard of it.

    Spread your story! Just look at how many mommy's know now!

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  33. Regarding the comment by Truth- Noah has been off the diet since August 2006!

    Steph

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  34. You should be proud of Noah! What a sweet little boy! And kudos to you for going after those doctors and getting the word out! It may save the lives of alot of other children!

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  35. Wow, this is just so amazing. And you are amazing for waging a one-mom campaign to educate medical caregivers. Is the Keto diet a high-fat one? I had read some time ago of a mom having success with it for her son who got polio from a vaccine.

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  36. What a cute video! I'll be praying that the doctors really accept your letters, and really do something about it all.

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  37. You are such an amazing advocate for your precious boys. Great job, mama!

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  38. Stuff like that frustrates me! Doctors should be on top of new information and advances especially when it pertains to their field of expertise. They should know all there is to know and all that is available to the general public and more!

    I think you should send your story to all doctors in your area and maybe even to Chicago. Even if those Doctors already know about the diet, they can always use success stories under their belt as good info to give other parents. Brave, persistent mothers like you not only make a difference in your children's lives but of so many little ones that you've never even met. Keep it up. There are mom sout there that need this info!

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  39. Noah seems so grown up. He's reading very well and with expression. Clearly he is enjoying it. Thank goodness you were persistent and found out about the Ketogenic Diet. You saved his life.

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  40. You have me tearing up on this one. Great post Steph. Great post. We need more advocates like you out there.
    - Audrey
    Pinks & Blues

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  41. Steph,

    you do an awesome job in spreading such important news about the diet. Please keep it up as it is important, ...well you know best how important it is!

    So many people are still unaware, but that the professionals in the epilepsic area are unaware, that is just so outrageous! That must be so frustrating.

    Still glad you found the diet and that it did such wonders for your family.

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  42. Thats so awesome that it works so well for him! I worked in a daycare center with many children suffering from different levels and types of seizure disorders. Many of them were on the keto diet. I can't believe that a doctor wouldn't know, or wouldn't WANT to know...to watch the children seize...I'd do anything to stop that, and they aren't my children! Cheers to mommy!

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  43. I think Noah's story is amazing, and I think you're an amazing mama!
    It's sad, really, how little some people know about the correlation between what they eat and what dieseases they get, not just epilepsy. For anyone who wants to read a real eye opener on how your diet can cure dieseases such as cancer, diabetes, etc. you should read The China Study.

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  44. It's really scary just how little an "expert" in a particular field might know. Some of them have such a narrow mindset though, give a drug for this symptom and a drug for that symptom instead of treating holistically and getting to the ROOT of the problem!

    WTG on continuing to educate the masses. :D

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  45. That brought out the Mama Bear for sure. I love that you are not afraid to stand up for your children and advocate for them to keep them and get them healthy.
    You are such a fantastic Mama.

    xoxo

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Your comment is gonna totally make my day!

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