We recently made some hard decisions and split our family so that Kennedy could have a better chance of healing. A month ago Reagan, Kennedy and I made our way into a beach town in Southern California. Why a beach town? Dr. Natasha McBride Campbell suggests that ocean living promotes healing. Why California? A chance to try Medical Marijuana without being arrested.
The day after we got here we had an appointment with a Wellness Doctor. He suggested some new things. Magnesium. I already use transdermal magnesium on Kennedy every night but I never felt like she was getting enough. He prescribed a compounded magnesium. Magnesium is useless without choline so after her five egg yolks every morning she gets her magnesium. I believe this had directly correlated to her less violent seizures.
Another far out crazy solution he recommended is Masking. I have never heard of this. It’s fairly simple but tedious. We just started the process today so I have no results to report as of yet on this.
Our appointment with the doctor for Medical Marijuana is on Sept. 11. I look forward to having this in our arsenal of new things to try.
I feel like I have gleaned so much new information in the past 30 days, it’s kind of unreal at this point. Every time I think I have tried everything, 100 more doors open for new things. Another Dravet mom and I have been working very hard for the past four months, well really the past two years, but we’ve really been making progress as of late. Tara Riggio, fellow mother warrior, for her daughter Francesca has taken my histamine findings and expanded upon it to include oxalates and salicylates. I really believe oxalates will be our next road to travel in regards to diet.
Here’s what Kennedy’s seizures have looked like so far in the five weeks we have been in California:
1. Tonic Clonic lasted about 1 minute right when we she fell asleep at bedtime
2. Absence seizure lasted about 45 seconds right when she fell asleep at bedtime
3. Didn’t look like seizure at all as she was sitting straight up running her fingers through her hair, but her eyes were far off and she was not responsive. She urinated at the end of this episode that last about 40 seconds. Happened right when she fell asleep.
That’s improvement to me and only with increase of magnesium.I look forward to implementing the other new changes with her diet as soon as possible.
I have also been reading a lot of testimonies with seizures and essential oils, Frankincense and Ylang Ylang Oil. We have been using Frankincense for over two years for mosquito bites so that wasn’t a surprise, but I have never seen it stop a seizure for us. I have tried. Last night when Kennedy had the odd seizure I did put the Ylang Ylang oil under her nose so that could have contributed to her not going into a tonic clonic as well. Either way, essential oils are a MUST try.
I know I’m being crazy all over the board on this post, but there is just too much information running through my head. Two weeks ago when Kennedy was being adjusted at our awesome NUCCA chiropractor’s office she asked if she could ZYTO test Kennedy. She wanted to know what organs were stressed since Kennedy had just recently had a seizure. The number one issue that came back was her eyes. I have always noticed the puffy eyes to be a problem with Kennedy. In fact, I have mentioned it before in previous blogs. Anyway, when I was looking up oxalate issues tonight I came across this,
“They can also experience pain in other areas of their body – oddly enough, like the eyes.
It is thought that the oxalates are trying to be eliminated from the body through the eyes and can cause pain. We have experienced that just this week! It was quite odd. I had read about it and for the last 3 days, Lynsey has been complaining that there’s something in her eyes and that they hurt and she will rub them. When I look, there is nothing in her eyes. This has happened on several other occasions in the past now that I think of it and sometimes she will scream for her glasses. I’m thinking maybe she thinks her eyes are hurting because she’s not wearing her glasses, but that has never stopped her eyes from hurting. So strange! At this point, nothing surprises me. It still amazes me how the foods we eat can cause so many of the negative behaviors and symptoms we have.”
This journey is so discouraging sometimes. Just when I’m think I’m on to something, seizures occur and I’m back to square one. But with each seizure a new puzzle piece is created and just because I’m working without the lid of the box doesn’t mean someday I won’t complete the puzzle.
Thanks to all my wonderful friends and family who continue to support and encourage me when I need it most!