Two Moms Talk About Their Success with Ketogenic Diet

Absolutely!

I just listened to this as well -- I can't WAIT to see what happens to Mich when we start it. I loved hearing first-hand about how many seizures Austin was having and now that he's seizure-free.

It's so exciting.

Also, I really appreciated that Arlene mentions that the KD helps about a third of the kids who try it. I'm trying not to let my hopes and expectations get out of hand, and hearing this information again helps.

It seems like everytime I visit this site that it keeps getting better and better. I just read Michelle's post about how she is just starting her daughter on the diet and already starting to see biig changes for the good.

I also listened to Kim's podcast with Arlene. All I can say is WOW and way to go ladies.

M

I had a few extra minutes this morning, so listened to this podcast.

I truly had never heard of this diet until now. It really does sound like a miracle cure. Can any child with seizures try it or is it just for children who are having trouble with their medications?

So great to have you join us and great question!

The ketogenic diet can be and should be used for ANY child who does not have complete seizure control after one medication has failed.

The diet can be administered to most kids, usually from age of 6 months to 10 years old. There are exceptions of course. The earlier the better!  They really try and start the diet before eating habits are too established as older kids may reject the different food choices.

The great news is that it is effective in about two-thirds of the kids who try it. One-third generally get complete seizure control. Another third get a drastic reduction in seizures and one third - get no benefit.

It was a life saver for us and well worth the effort. There is lots to read about the diet and be sure to listen to all three podcasts on the subject. Three excellent interviews.  The third one will be posted on the site the first week of September.

Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com

Hi Arlene --

Does 'complete' really mean no seizures at all?

The number and frequency of Alex's seizures have been greatlly reduced since he started his medication, but they're not entirely gone. My DIL told me yesterday that his right arm is shaking sometimes now, too.

From what I've read about seizures, this could be a new type. She really doesn't want to believe that he's having seizures still--and I can't blame her at all, I hate to think about it so much that it makes me just sick at heart--but I've got to get her to take him in again to the neurologist.

Hi, I know that complete seizure control can really only be measured by an EEG. My son, Austin, is not having any seizures now on the Ketogenic Diet that we know of, but I will wait for an EEG to really feel completely relieved. I was worried that he may be having seizures during the night but I was happy to discover when I slept beside him one night that he is waking due to gas.

I think as parents and loved ones we will always be watching for seizures. On another note - I regret that while Austin was on seizure meds I continually passed off the side effects as 'something that will go away as he adjusts' and I would call the nurse frequently to describe what I was seeing. Now i know that what I was seeing were the development of new seizure types due to the medications and I should not have let those go on for so long. I didn't want to come across as an ungrateful and neurotic parent. I was tolerating too much and now I think I would sit outside the neurologist's door and wait until they ok'd him for the Ketogenic Diet.

I have learned alot through my son's suffering and now I am becoming a much more demanding parent, in a polite way of course. I know the feeling of not wanting to 'notice' new seizure types or side effects from the medications.

My prayers are with Alex,

Kim

I'm responding to the part of your message where you regret passing off the side effects and not wanting to come across as a neurotic and ungrateful parent.

We all eventually reach the place where we've been 'compliant' long enough and we become, as you said, more demanding. I am the QUEEN of being politely, completely demanding. I shock myself sometimes because I was brought up to be the nice girl and always respect people in authority, including doctors.

Anyway, what I REALLY wanted to say is that I don't think there's a parent on here who wouldn't go back and UNDO part of what has happened to their child. That includes me.

Nancy, have you mentioned to you DIL that you think these might be new seizures? Have you seen one yourself?