Last September I wrote a blog about “Saying Goodbye to the GAPS diet.”
The verdict is still out but it was either the best or worst decision I have made in the past couple of years in regards to her health.
I slowly incorporated starches into our regimen. At first it was very small amounts of quinoa. Then I let her have lots of quinoa. I tried potatoes, but a seizure onset pretty quickly after potatoes. And then I started rice. She loved all of them.
At the end of February, her seizures started occurring every 10-14 days sometimes sooner. It was devastating to us. She turned six this year, it was supposed to be the year everything eased up according to the doctors.
I was already very wary of high histamine foods, but then I started looking into oxalates. Oxalates seemed to fit our issues. I added supplements to counteract the oxalates. I was chasing answers and breaking down her diet more and more. I was getting desperate.
Desperate times call for desperate measures. We split the family and moved to California for cannabis oil. I still wasn’t sold on cannabis oil being the right answer for us, never the less we wouldn’t know unless we tried.
I felt I had pulled out all the stops in regards to diet and supplements. After two seizures within days of each other I introduced the oil. After about 4 days on the oil, a new seizure type emerged. She had a partial complex seizure about 1:30pm. I was so lost. Thank God my husband was in town to bear the burden together on what to do next.
We brought Kennedy home to sleep as she does after every seizure she has ever had in the past 6 years. Carl was calling for advice on whether or not to stop the oil. I laid down with Kennedy and she did something she has never done before. She didn’t want to sleep. In fact, she was talking and acting as if nothing ever happened.
A new seizure appears, but the partial complex never turned into a tonic clonic and she recovered within minutes? I was so lost. Is this a good or a bad sign?
At that point, we were only giving cannabis oil 2 x day, in the morning and evening. We were advised to try 3 x a day. Again, lost. Do we really want to give more oil? Isn’t this was neurologists do when they have no answers for you on meds? Give more and more? But this isn’t an anti-epileptic drug, it’s natural. I am still having a hard time wrapping my head around that. Still fighting myself that I can do more.
Carl and I sat down and talked through all the changes I had made in the past year compared with the last 3 years. We went back and forth on how well she was doing last year. And he laid it out for me, “Go back to the basics.” Go back to what you know works.
I didn’t want to hear that. I was finally able to relax a little by adding rice as a staple to our meals. I didn’t want to go back. And I stomped my feet and pouted and realized that he was right. I could go back and review and add in the new wisdom I had garnered as far as histamines and oxalates, but I needed to start back at the beginning.
And so on October 3rd, I started back to a full GAPS regimen minus the high histamines and high oxalate foods. We are 3 weeks seizure free!!
And now back to the beginning, why was it either the best or worst decision to stop GAPS last year? If I didn’t follow the journey, albeit heartbreaking and sad, I would have never got so desperate to start cannabis oil. And who knows, that may be our missing puzzle piece. We used to go 3 months seizure free with just diet alone on a pretty consistent basis…..now we are going for a lifetime!