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the adventures of a MAD mom

Modified Atkins Diet for Seizures, Epilepsy Meds

Depakote (Depa-craze)

Zonegran (Zombie-gran)

Lamictal (Rash-ictal)

Ethosuximide – (Etho sucks-a lot)

Amantadine (nada-dine)

Clonazepam – (valium-pam)

Diamox – (nada-mox)

This is a partial list of medications prescribed to Casey for his seizures, listed along with our little nick-names where applicable. The only one that was able to control his seizures – Depakote – made him crazy-hyper, unable to function, angry, and gain 13 lbs. during a 6 month period.

The others had little or no effect on the seizures, but came with all kinds of other lovely side effects including but not limited to: weigh gain, loss of appetite, hyperactivity, sleepiness, sleeplessness, rashes, depression, moodiness, dry mouth, itchiness, diarrhea, constipation and all sorts of aches and pains.

There came a point when we had to look for another way. Our doctor had mentioned the Ketogenic Diet, and I had read a few books on the subject. It seemed so overwhelming. I could not imagine changing our lifestyle so dramatically, not to mention Casey’s eating habits. But after trying, and failing, on so many medications we as a family decided to take the next step to meet with the Keto team and find out more about what was involved.  . By this time, even Casey was on board. He was tired of the seizures limiting his daily life.

Prior to our appointment with the Keto nurse and dietitian, I prepared Casey for what might be in store for him if we chose to go ahead with the diet. A 4-7 day hospital stay, beginning with a fast for a day or two, followed by a very limited diet. We would stay in the hospital with him, learning how to measure and cook properly for the diet. He would most likely be on the diet for a year or two following the initial trial period of 3 months.

I encouraged him to make a list of any questions or concerns to bring to the visit. My heart almost broke when he asked the nurse, “what if I die in the hospital when I am fasting”. Fortunately, the nurse, dietitian and doctor were all great and answered each of his concerns with care and respect. The greatest surprise of all was that they actually wanted Casey to try the Modified Atkins Diet for Seizures as opposed to the Ketogenic Diet. There were several reasons for this, but mainly because the track record of pre-teens/teens is much better on the Modified Atkins Diet due to the greater flexibility, larger choice of food and fewer restrictions.

It’s funny, but when we walked out of the office we all heaved a sigh of relief. This Modified Atkins Diet would be a piece of cake compared to the Ketogenic Diet. We were all able to start the diet with a really positive attitude, given that it would have been much more difficult to follow the Ketogenic Diet had they wanted us to go that route.

Well, here we are at the 3 month mark (almost to the day), and though it has not been easy, it surely would have been much more difficult had we started on the Ketogenic route. Casey is still having small seizures, a few per day, but they are not a daily interference in his life any more. His energy level has returned to his pre-diagnosis levels. He is once again able to participate in is beloved Hockey without napping before or afterwards, or having to bow out of a game due to low energy. He can have playdates, oops I mean “hang-outs” and even sleep-overs with friends. Most days, he asks me if he can skate or scooter around the block to “get his energy out” prior to starting his homework.

Modified Atkins Diet for Seizures MAD

I look back to the beginning of the school year, when he would come home and fall asleep at 4pm, not waking until the next morning just to start all over again. We had to implement a 504 plan at school because he was unable to complete any homework due to his lack of energy and inability to stay awake long enough to complete it. He slept away most of the weekends in order to build up enough energy for the school week ahead. The drugs were wreaking havoc on his life.

Casey is off all of the drugs now, except for Keppra XR, which seems to keep his Tonic Clonic seizures at bay. As we proceed on the MAD we will likely try lower dosages, and fade out all together if possible.

Now, if I could only find something to do with this huge stash of left over meds. Sure would be nice if there were an organization that could get them to families in need. I know, I know, it’s a pipe dream that the pharmaceutical companies will never allow, but a girl can dream, can’t she?

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