What led us to M.A.D.??? One word...CURIOSITY!
Evan had been on Trileptal with little to no success in seizure control. He was now on Lamictal with similar results. I was searching for something, anything, to help him! When he transitioned from Trileptal to Lamictal, it had become clear that the Trileptal had a big impact on his learning and development. Evan was still having seizures, and each one lasted over 5 minutes, requiring us to administer diazepam/Diastat to stop them. We were far from excited at the prospect of adding another medication to maybe obtain seizure control. At this point, it seemed our neruologist seemed too satisfied to just throw another medication at the problem. It already felt like she was using a dart board to decide what meds to try next! I know its the name of the game, but hearing "well, if that doesn't work lets try this...and if that doesn't work, we can try this" just doesn't sit well with me! This is my KID, not some number on a chart! He is NOT a guinea pig! He is my EVAN!
But I digress. Essentially, we were far from satisfied as parents, and fearful of what the side effects of yet another medication would add. In my line of work, I had seen people that were on a med to control a certain disorder or diagnosis, and were on another med to fight the side effects of the first med, and another med was added to fight the side effects of the second drug, and so on. We wanted to try to avoid that at all costs!
Before we could make a solid decision on what to do next, we headed to Leavenworth, WA for a winter vacation with some friends. We stayed overnight in a cheapie hotel about half way there that had a continental breakfast. Continental now means to me...tons of carbs and sugar! Anyways...we all had breakfast there. The kids, in true kid fashion, had a sugary breakfast...french toast with syrup, fruit loops cereal, and part of a biscuit with jam. We watched as the sugar hit Evan and my husband and I even commented to each other on how he began to glaze over as the sugar took hold. At this time, we were also potty training. Evan did his "part", and wanted his reward. We got a small bag of candy out of the vending machine at the hotel, and gave him just a few pieces. We wanted to reward him, but knew he was already "sugar high". Within 10 minutes he had a significant seizure complete with his body rejecting and, well, to put it kindly..."removing" all the sugar he had consumed that morning. The connection between his diet and his seizures could not have been clearer to us.
But I digress. Essentially, we were far from satisfied as parents, and fearful of what the side effects of yet another medication would add. In my line of work, I had seen people that were on a med to control a certain disorder or diagnosis, and were on another med to fight the side effects of the first med, and another med was added to fight the side effects of the second drug, and so on. We wanted to try to avoid that at all costs!
Before we could make a solid decision on what to do next, we headed to Leavenworth, WA for a winter vacation with some friends. We stayed overnight in a cheapie hotel about half way there that had a continental breakfast. Continental now means to me...tons of carbs and sugar! Anyways...we all had breakfast there. The kids, in true kid fashion, had a sugary breakfast...french toast with syrup, fruit loops cereal, and part of a biscuit with jam. We watched as the sugar hit Evan and my husband and I even commented to each other on how he began to glaze over as the sugar took hold. At this time, we were also potty training. Evan did his "part", and wanted his reward. We got a small bag of candy out of the vending machine at the hotel, and gave him just a few pieces. We wanted to reward him, but knew he was already "sugar high". Within 10 minutes he had a significant seizure complete with his body rejecting and, well, to put it kindly..."removing" all the sugar he had consumed that morning. The connection between his diet and his seizures could not have been clearer to us.
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| A few months before we made the connection |
I ran across the ketogenic diets doing research on the connection between diet and epilepsy online. When I brought it up to our neurologist, she basically "poo-pooed" the idea, saying there was "little evidence to support its effectiveness" and that there was "no trained dietician in our area" who would prescribe it. She said that the nearest clinic that would do that was about 250 miles away. She almost insisted we HAD to try a second medication. SHE frustrated me!! I had read stories about others and the success they had. I left determined to do more research and get a second opinion. I decided to STAY CURIOUS and GUESS WHAT?!?! I found that one of the other main hospitals with a pediatric neurology clinic (really the only other game in town) DID INDEED have a dietician who was well educated in the ketogenic diets and was prescribing it for many kiddos in our area....and they were not even 20 miles away! I never went back to that initial neurologist. She had completely lost my respect and trust at that point. I am pleased to say we are very happy with our current neurologist, his PA, and our dietician.
STARTING OUT LGIT!
Our dietician went over the different ketogenic diets (there are 4), and we decided to start with the Low-Glycemic Index Treatment (LGIT). It seemed the easiest, but still seemed daunting when Evan was such a carb head! His favorite foods at that age were bread, bread, pasta, fruit, bread and crackers....usually in the forms of various sandwiches, mac n' cheese, grilled cheese, etc. Oh, and like all kids his age....LOVED cookies, crackers, chips, sweets! My husband and I were a bit fearful. We started to transition him in early December 2012. Yup, before Christmas, with all the candy, and cookies, and ooey gooey treats. Hmmm....maybe not the best planning on our part. But, in our defense, we were anxious to get started and see what it would do for him. AND...it all worked out!! We have survived and thrived!
We were very open with Evan about it. We wanted him to be as educated about what he should be eating (and why) as we were. The first two weeks were the most difficult. He wanted to eat the way he had been, the way his brother and parents still were. Yes, we could have all transitioned on to the diet, but in my mind that wasn't reality. Reality was, if he is at school and the kid next to him is eating cookies, he needs to be OK with that! My trick was...we quickly found at least one thing he really liked and if he was wanting something he shouldn't have, we told him why he couldn't and immediately offered the alternative. How we presented it was the other part of the trick. We didn't do the "awe...I'm so sorry you can't have that" pity voice. It was a matter of a fact, and then with a hint of excitement when we presented the alternative. To our surprise, this started to work....and still works! He was OK with the alternative! WHAT?!?! Is this our carb-head??? The day I knew we would be ok was a couple months after being on LGIT. We had gone to a restaurant spontaneously, and I didn't have any of his "go-to" foods on hand as I usually did. I did some quick thinking and decided on a cheeseburger (sans bun) and salad for him. We discussed what he was going to have. When the waitress came, I held my breath as his brother ordered mac and cheese....and a strawberry lemonade! A few months ago, Evan would have had the same meal. I was mentally preparing for battle. I couldn't fathom this ending well. The waitress then looked to him and asked if he wanted a strawberry lemonade as well. I about fell out of my chair when he looked at her and said matter-of-a-factly "I no have that...it no good my brain." That was it! No complaining, no arguing, no tears. I was nothing short of amazed!
We were very open with Evan about it. We wanted him to be as educated about what he should be eating (and why) as we were. The first two weeks were the most difficult. He wanted to eat the way he had been, the way his brother and parents still were. Yes, we could have all transitioned on to the diet, but in my mind that wasn't reality. Reality was, if he is at school and the kid next to him is eating cookies, he needs to be OK with that! My trick was...we quickly found at least one thing he really liked and if he was wanting something he shouldn't have, we told him why he couldn't and immediately offered the alternative. How we presented it was the other part of the trick. We didn't do the "awe...I'm so sorry you can't have that" pity voice. It was a matter of a fact, and then with a hint of excitement when we presented the alternative. To our surprise, this started to work....and still works! He was OK with the alternative! WHAT?!?! Is this our carb-head??? The day I knew we would be ok was a couple months after being on LGIT. We had gone to a restaurant spontaneously, and I didn't have any of his "go-to" foods on hand as I usually did. I did some quick thinking and decided on a cheeseburger (sans bun) and salad for him. We discussed what he was going to have. When the waitress came, I held my breath as his brother ordered mac and cheese....and a strawberry lemonade! A few months ago, Evan would have had the same meal. I was mentally preparing for battle. I couldn't fathom this ending well. The waitress then looked to him and asked if he wanted a strawberry lemonade as well. I about fell out of my chair when he looked at her and said matter-of-a-factly "I no have that...it no good my brain." That was it! No complaining, no arguing, no tears. I was nothing short of amazed!
The biggest lesson I learned from those first few weeks was: KIDS ADAPT! It still amazes me! They have the ability to transition and adapt to changes better than us adults! When we know something is coming, we plan and think how this will affect us or others in the future, and try to figure out what might go wrong or could go wrong. I was more fearful of the change than he was and was the one thinking ahead to "what if this?" and "what if that?". I had envisioned him grieving all the foods he couldn't have. In my head my child was sad and unfulfilled. I could work myself into a complete tizzy with that line of thinking!
Evan lived in the moment. RIGHT NOW he wanted a certain food....RIGHT NOW he learned that wasn't possible and RIGHT NOW was offered an alternative he liked. Then RIGHT NOW he ate it and was satisfied. End of story and back to playing. I try to remind myself, food isn't what fulfills him...LIFE is! And he isn't sad! I'm not saying from time to time there isn't a struggle over foods and what he can't have. He breaks my heart when he says things like "can I have that when my brain is all better?". And yet, it is also good. He has an understanding. He is armed with the knowledge of what and why, and knowledge is power!
I do want to point out, thought...that we did start out slow. Not the converting to LGIT part, that was immediate, but it was the variety in his diet that started out slow. He might have had a low-carb wrap with meat, mayo and cheese for 2 of his 3 meals in a day...and, I confess, maybe even several days in a row. His snacks pretty much consisted of nuts, cheese sticks, and "fluff". I didn't have the brain capacity or the energy at the time to totally go bonkers on making different LGIT meals. My mind was still learning, each meal took added time to plan and prepare. But eventually, it got easier. Those first few meals became "no brainers" and I found I was ready to try a new recipe or two. Give yourself that time....that time to learn, to adjust, to wrap your mind around it all. Then, try recipes with no fear! If Evan didn't like something I made after giving it an honest try...then ok. Note to self not to make it again (or to make some adjustments next time if it was a near-miss), make him one of his simple, no-brainer meals in its place for that meal...and try again with something new another time. Its all a big learning process, and you have to give yourself the freedom and permission to learn, to sometimes fail (because we all do!), and eventually discover what does work! The end rewards are worth it!
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| M.A.D. Milk Moustaches are the BEST!! |
AND ON TO M.A.D.
As time has gone on, we have had to continue to adjust. LGIT was not quite giving us the seizure control we hoped for....so instead of increasing meds, the neurologist and dietician suggested we try "bumping up" to the Modified Atkins Diet. The difference was relatively significant (went from being able to have 40 carbs/day to 15 carbs/day). Again Evan transitioned so well and surprised me! We have added lots of things to his repertoire of favorite foods. AND, again...I had to go through a learning process of finding and/or tweaking recipes to find what he liked. You can see what foods we keep on hand in MAD Pantry, and I will be sharing some of his favorite recipes (and likely some failed attempts) in the blog.
Prior to being on a ketogenic diet, Evan's seizures required Diastat to be administered 99.9% of the time. Since being on LGIT and now MAD, he still has seizures about every 6-8 weeks (and at times even longer), but has needed Diastat administered only twice...and that is in over 2 years! This diet change did more to improve his seizures than any medication he tried before. Some kids see total seizure control with one of the diets, and of course that was our hope...but we were realistic as well. We are happy with BETTER THAN BEFORE, and it makes our efforts completely worth it!
CONTINUING TO BE CURIOUS
In the past year, we have continued to be curious about other ways to help Evan with seizure control (without added medications or surgery). I had read about acupuncture and how it has helped some people with further seizure control. When I looked into it, I found a naturopath that was also an acupuncturist. Evan, being a kiddo, does NOT get full on acupuncture (no "pokies" for this kid!) but does get acupressure treatments. She has also put him onto a few different supplements to help his immune system as well as some of his other systems and had us get him gluten-free. Not a huge step given most foods that contain gluten he couldn't have on M.A.D. anyways. We have seen his seizures become even less severe (for the most part) as well as fewer and further between.
Right now...we are happy with the balance. His seizures are more under control with less medication, he is growing at a healthy rate, and he has a good quality of life, enjoying activities all 6 year olds enjoy.
BUT....I am still curious. I watch for "new" ideas and advancements. I am following the CBD (canabis oil) trials fairly closely. I continue to research dietary information for changes we can make to further help, and just about anything that may help him get even better control. Curiosity and a thirst for information is so important! Its like a maze...even if you hit a dead end, NEVER stop being curious because there is always another path you can take, and that path just might lead you out to the answers you are looking for.
Thank you for sharing your experiences. I too have a son with epilepsy along with a rare chromosome deletion. My son was officially diagnosed with epilepsy 6 years ago, (he is now 13). He is currently on 3 meds. :-(. We just started CBD oil. We have yet to start the weaning process but I am very hopeful of positive outcomes. I have researched much and with my neurologists recommendation I found this organization, Realm Of Caring. Thought you might want to look into it.
ReplyDeleteAs one walking in a similar pair of shoes, keep on keeping on.