Hi Jen!
I am so happy God led me to Dr. Diana’s site. Dr. Diana and all of her information is giving me hope again. The last 2 years has been a nightmare with my son. His story is a very long one and I have known for 9 years his seizures were caused from something else. Seizure medicine never controlled him in fact they made him 100% worse. We quickly seen FOOD was his trigger. His episodes were “eye twitching” and zoning out in the beginning and usually came after eating and nights would be worse if he ate the wrong foods. No one knew he had seizures until Caleb hit puberty.
2 years ago at puberty, our lives changed quickly. After getting on the Modified Adkins diet he did good for a couple of weeks and then things went really bad. They had changed his seizure meds to Topamax which most seizure medicine made him 100% worse. He was drinking at least a gallon of cream a week and meats (which is high histamine–especially the cream since it was pure right from a farm). Now….I believe I know why things got horrible. But….it lead me to the true reason….the mast cell connection. He now has been diagnosis with POTS (fainting and vitals are real low)….and now waiting results from the histamine/mast cell labs. I am just so scared that the labs won’t diagnosis him. The medical world just doesn’t get it… My son at his worst didn’t know his name….and if he talked it was “slow” like a stroke victim… He hasn’t been in school now for almost 2 years. He used to get A’s in Algebra in 6th grade and now struggles with simple math. We now do home schooling (virtual) and he can only handle a hour a day (if that) of schooling. I worry the most about his cognitive issues…he does off the wall things that I fear he could get hurt. Praying we all get our answers soon!
Thank you Dr. Diana for this wonderful site! I am telling everyone on my facebook support groups about you! You are giving us hope again!
Also….now Caleb is seizure free first time in 9 years!!!! Yes….seizures can be a symptom not the diagnosis… I want to be able to help others families now….I am praying I have a chance to tell Caleb’s story so he can help others…
Have a great day!