Bean Update!
We started the bean protocol/ Living well protocol with nutritionist Karen Hurd on December 4th… a little over a month ago.
Charlie has been quick to respond to the diet whereas Ralph has been slower to respond and required a few tweaks. While their disease severity has always been identical (as you’d figure for identical twins) Ralph had developed LGS like seizures prior to the diet and was regressing.
Prior to the diet Ralph was labeled as severe/moderate by their drs. He was rolling onto his side but has stopped doing that. He also astopped moving his arms and legs, and his seizures increased big time. He started having so many it was overwhelming to count, so I didn’t. Derrick would try and our nanny too but who really knows. He started having seizures during the night and everyday he babbled less and less until the only time he made a sound was when he cried. We panicked because he seemed to have been getting worse because of the diet. It blew our minds that identical twins always right on par with one another were not responding the same to a diet. In fact there were a few days were we were anticipating having to hospitalize him and put him on keto but we couldn’t because of a Covid outbreak and doctors being off for the holiday. Derrick and I were able to come together and agree to see this diet through.
Ultimately it’s was still the regression manifesting from the LGS like seizures and a cold that caused him to decline rapidly. I am happy to report Ralph is regaining his strength everyday. In 3 days since we tweaked his protocol, his seizures that were so frequent it was hard to even keep track of, are now track-able. He is physically getting stronger and filling out a little more each day. He had always been the chunkier twin but lost a lot of weight when his regression /cold got scary bad over Christmas Break. We are cheering him on everyday and lifting him up and it’s working!
Charlie before the diet was labeled as mild by his drs. He had ok neck control but he would get weak and his head would fly back without constant neck support. Imagine trying to hold an infant like a 10 month old or even 1 year if that’s easier to visualize and that’s what it had been like with him (Ralph has awful head control right now). Now, Charlie doesn’t fling his head back as often. When you would hold either of them you could tell they were not solid in their trunk at all- very floppy. Charlie is solid. We joke that he looks like a pinto bean 😂 He is also sleeping through the night, and he’s HAPPY!! And his seizures have decreased a little.
I want to know who coined that phrase, “you are what you eat.” What wisdom did they know then, that we seem to have lost sight of? People who eat like crap, generally feel like crap, and unfortunately sometimes look like crap too. But people who eat healthier, are generally healthier feeling and healthier looking. Of course there are those unlucky cases, like my twins, you know like when bad things happen to good people? Well, I will be the first person to admit that Derrick and I were not very healthy around the twins conception or even really ever? It was in the middle of the Covid lockdown- I drank more than normal and stress was high. If anyone knows me personally I was a freak about Covid. We didn’t leave our house for a year because I was so scared I was going to get it while pregnant. Talk about stress! And while I’ve tried to be healthier since having children and while pregnant there is always room for improvement. And then you have to think about my mom and my dad and what their health was like when I was conceived/as I grew up and the same for derricks mom and dad. That’s genetics, right?
I know CDKL5 is not typically passed down (at least that’s the consensus) but that doesn’t mean that things we did and things our parents did didn’t cause mutations of our own and then when Derrick and I conceived the twins, our mutations created a mutation of its own? I feel like that’s proven in genetics/ epigenetic world but I could be wrong- these are just my theories that I formed after researching.
The one thing on everyone’s mind yet not many people want to address… unless you are mandating it or protesting it is vaccines. It is scary as hell to acknowledge that things like vaccines might not be as safe for everyone as we are told? Usually they are, but nothing is perfect! That’s why I had a mental breakdown. I felt some heavy guilt and anger and rage. Again I’m not an anti vaxer. Derrick and I both have our Covid vaccines and both my older kids are fully vaccinated. But my career is to find pattens in data and ask why and make things better- I’m pretty good at it too. So I can’t help but play devils advocate. I would have hoped people were looking into this but from the scientists I have asked that are working on this, the answer is no. The money went to funding a cure.
Gene therapy will be a cure, and thankfully in the next 5 years but I’m challenging that there is something more simple out there and that’s our lifestyle and diet. We don’t have to wait on anyone else for but ourselves for that. Again- I could be wrong. These are just my opinions and I hope you can agree to disagree with me at least. I personally can’t sit around and wait for someone else to fix my kids and shit I probably won’t be able to afford it when it is available! I have two! That’s 4 million dollars at least! And who knows if insurance would cover it. I just got denied short term disability so we are now a one income family at the moment. How’s that going to work?
The latest thing I have been looking into and don’t know enough about yet is gut microbiome and genes. I am going to include an article I found from basically a poop testing company 😂 about what poop can tell you about your gut microbiome. https://www.viome.com/blog/14-surprising-things-you-didnt-know-about-your-gut-microbiome it’s a quick read for those interested.
The twins diagnosis took me to my rock bottom. But through diet and lifestyle changes I’ve found a much happier and healthier me…. and while it’s still too early to really know for sure if it’s going to be the ticket for the boys, I will confidently say it seems to be working to relieve their symptoms, or at least starting to in Ralph’s case, which in the end is all I really ask for. We have a long road ahead of us.
And thank you again to those that donated, and to those that have prayed for us. Neither have gone unnoticed.
If anyone is interested in the Bean Protocol I highly recommend taking one of Karen Hurd’s ecourses or follow Unique Hammond on Instagram! Or search either of their names in Apple podcasts and take a listen to one of them speak on diet. I’m happy to also try and answer your questions but they are the experts.
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