My daughter has Dravet syndrome and is 5 ½ years old. She is not on any meds and has never been on meds for longer than 3 weeks. In fact, she has only taken AED’s for about 39 days, not consecutively, for her whole life. We attribute this to how far advanced she is for her age.
She has not seen a neurologist in 3 years nor do we see any type of mainstream medical doctor on a regular basis. I am responsible for her health and I do better research on my daughter’s case than the FBI (lol, have you seen that meme?).
Anyway, I see things with my daughter that I have brought to every doctor’s attention that I have ever seen. Every time, I get told these things are of no concern and mean nothing to her seizure status:
- She gets a very swollen or puffy face when it comes to either right before or right after a seizure.
- She gets flushed cheeks very easily.
- She has seizures when she gets too hot or too cold.
- She has seizures when she gets a temperature. Not a high temperature, any temperature.
- She has a very bad reaction to bug bites, chemicals or toxins of any kind.
- Her seizures seem to worsen in the spring and fall. Winter has always been a better time for us.
- My last correspondence with a doctor was a desperate email to Dr. Natasha Campbell-McBride stating that it’s almost like Kennedy gets something built up in her over the course of a couple of a months and than, BAM, another seizure. I begged her to help me figure out the cause of the buildup.
Now go and watch this slideshow presentation of histamine intolerance. I almost cried. It all makes too much sense. The reason her seizures get worse in the spring and fall is because we live in Texas, one of the worst states in the country for allergies. Her body does what it can to fight off the allergens, but then add food high in histamine and a couple of toxins or chemicals and we have a recipe for trouble.
So, what’s the answer? Go to your doctor and get a prescription for an anti-histamine? No, that is still masking the symptoms. I plan to continue with food as her primary healing protocol (a diet low in histamine) and to check out supplements like Quercitin or medical cannabis, tried and tested natural anti-histamines.
I can feel how close she is to being completely free of seizures forever. Thank you God for mosquitos (lol!).
P.S. I know I am going to get lots of emails about doing GAPS low histamine and I may result to this. However, for the time being I am going to add things back in that are not high histamine, still real food, but not GAPS approved and see how she does from there. I also realize that this journey changes everyday and in two weeks I could be writing a post called “Hello Again, GAPS!”