April 5, 2020
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  • 2:53 pm Why You Should Try “Cook Once Eat Twice” Meal Prep | What We Ate Over a Weekend (Healthy Recipes)
Neuro Epilepsy Keto: Santi


When he was born there was no complications we brought him home and He was hitting his milestones. We started noticing that he was just wasn’t acting like himself anymore. And then we started seeing the spasms. Nutrition referred us to GI specialist at Children’s and They did a full workup on him and everything was good. So we’re like well what’s going on and why is he having these spasms? about a week later We were able to see a neurologist and he has epilepsy. He has something called epileptic spasms or infantile spasms, which is one of the worst types of epilepsy in Childhood. The prognosis was not good. He was perfectly Normal, he started having the seizures and I was telling me that he may never be Like his peers, they might not ever walk or talk. We had to make the seizure stop. So, he is Prescribed medications. It was a trial and error. That one didn’t work. Let’s try this one. That one didn’t work Let’s try this one. I was feeling really hopeless I Thought that I was gonna lose my child to a seizure The ketogenic diet is a very special inverse strict diet. It’s basically high-fat Low-carbohydrate and medium protein diet basically alter the chemistry in the brain Allowing different feel for the brain that tends to make the brain calmer from a seizure standpoint. It seems extreme. You don’t think that a diet Would eventually replace medication. We have like a menu here of how many grams have to weigh out of each individual ingredient Mm-hmm eats for lunch. He has a steamed broccoli chicken breast This has butter and coconut oil mixed in there and heavy cream He can’t eat anything else, but what’s on this menu and everything has to be measured out. mmm This is seizure-free for about over a year. Someone’s excited. Completely not in that he’s he’s completely a different child today than what he was when I first saw him. I was told he he may never walk. He may never talk and now he’s walking. Yeah. He can’t believe it. I don’t know if he’ll completely grow out of the Epilepsy. But in in his cases, we just hope that he continues to develop. I know if he will speak and it’ll be some time before he does. He’s just on his time. His Santi time.

Randall Smitham

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4 COMMENTS

  1. Shikha Sharma Posted on January 21, 2019 at 1:12 pm

    What is diet for one year baby also suffering epilepsy

    Reply
  2. Muhammed Rizwan Posted on July 11, 2019 at 7:43 pm

    Awww he looks like my baby he is suffering too.. plz share with me kitogenic diet chart plz

    Reply
  3. Nicole Immerheiser Posted on July 31, 2019 at 12:58 am

    I was told the same absolutely devasted news that my child would by 60-90% moderately profoundly mentally retarded when he was 5 mths old. And this was in Minneapolis at Children's Hospital by a very well respected and experienced neurologist. Negative MRI, hypsarrythmia on EEG, he was in the idiopathic or cryptogenic group, meaning no underlying cause was found for Infantile Spams or West's Syndrome as it is known outside the US.
    NOW THIS IS EXTREMELY IMPORTANT. YOU MUST, MUST, MUST HAVE COURAGE, TIME IS OF THE ESSENCE BECAUSE WITH EACH SEIZURE THERE IS A REGRESSION OF SKILLS. Anybody that would tell you differently is not respecting how devastating this condition can be. This is not a common disorder, so it's not reaearched a whole lot like other forms of epilepsy is, zo getting on top of the seizures is imperative, especially according to what parents see. NO PUSSYFOOTING AROUND. COME OUT SWINGING WITH THE HEAVY ARTILLERY. That means, ACTH or Acthar gel, same thing. INJECTABLE. HAVE COURAGE, to do this. If this seems terrible, I want you to think of all the parents at this very moment thst there is nothing more that can be done, znd your child will die. YOU ARE NOT IN THAT SITUATION!! Take strength in that and have the courage to give that injection and send those seizures directly to hell where they belong. Klonoprin and other sedative like meds are ok for other seizure disorders, but they don't carry the devastating brain destruction that IS does. Vigabratrin or Sabril, same med, can work but it has a horrible side effect, it permanently causes tunnel vision. ACTH causes kids to blow up like a balloon, acne, super irritability, diarrhea, hypertension, rectal yeast overgrowth, elevated glucose, bacterial pneumonia, and it's injected intramuscular in the thigh. BUT HERE'S THE GOOD NEWS, ALL OF THAT IS TEMPORARY. WHEN ACTH is weaned off those side effects disappear. Treatment lasted 4 months total for us. He was having 3-4 episodes per day when started, and after 1st injection of ACTH no more and never resumed. COURAGE PEOPLE!!!!
    Now why my son has some learning disabilities, HE CAN DRIVE! He has his own car, works at a grocery store and will be starting a community college program in a few months, his IQis 88. Now can you imagine if I has chosen Vigabratrin for him, he would not be able to drive, if I had done Klonopin or Keto diet where seizures were not completely controlled how much more debilitated he may have become? Who knows, but do you want to take that chance. In my opinion ACTH is what should be used initially to treat IS, STOP THOSE SEIZURES IN THEIR TRACKS IMMEDIATELY. AND DON'T LET ANY PHYSICIAN TELL YOU OTHERWISE. It should be used with a diuretic like furosimde, an anti hypertensive like atenolol or vasotec, and antifungal like diflucan, and an antibiotic for pneumonia, you should have a pediactric blood pressure machine at home and also urine test strips for glucose monitoring. Some meds may not have to be given everyday.By default you have now become a warrior, that is what I have learned in the last 19 years. Start occupational therapy, physical therapy, speech therapy right away, DONT LET ANY PHYSICIAN TELL YOU OTHERWISE. My son has been in the school program since age 7 months, first in home, and then added clinic based services, at the same time. He was a fulltime job. My son was discharged from neurology at age 5, because he was basically a missuse of the pediatric neurologist's time, those appts are needed for kids that have real ongoing issues and need meds after all. This highly respected neurologist said, in my 25 years of practice I've never seen a child with IS do this well cognitively and functionally, I got a little loud and defensive. This same MD had told me to not seek interventional services till kindergarten. I did the exact opposite not only for Lucas but for myself. I had to know that I was doing all that I possibly could and if Lucas was to be mentally retarded as predicted, it wouldn't be because I hadn't done everything in my power to decrease the devastating effects of IS. I reminded the MD That my son's progress is first due to ACTH stopping the seizures from the first injection and long term because we didn't let any opportunity pasd him by for improving the outcome. I told him please remember that the next time parents come in and are given the diagnosis of IS and those anguishing statistically prognosis.
    While my son has been extremely fortunate to be in the cryptogenic group and responded immediately to ACTH, this will not be the outcome fore all children, take faith in doinh all you can to disrupt what IS is predicted to do. Only do other meds and keto when ACTH has failed, do keto in conjunction with ACTH. Don't give Vigabratrin and permanently damage your child's sight uneless it's a court of last resort. GIVING A PILL OR LIQUID ORALLY IS EASIER, I BEG YOU TO DO ACTH FIRST. It's the strongest most effective drug stop seizures hands down.

    Reply
  4. John Doe Posted on July 31, 2019 at 3:29 am

    Uhhhh meth or heroin??? Any Illegal Drugs involves here??

    Reply
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