First off I’m so sorry for your situation. We are still searching for answers for my son. His was resulting from a surgery gone wrong. I’m going to sound ridiculous to you, but the only thing that helped my sons episodes was CBD and medical marijuana. I was fortunate enough to have found a dr when every other one sent us towards the psych side of meds and hospitization. Which is so frustrating as a parent. Our doctor is in integrated medicine, she prescribed the medicinal marijuana and we researched thoroughly the CBD oil. Stanley Brothers is the one we trusted and have had miraculous results. We live in Syracuse NY. We went to NYC and they started Botox injections which gave my son relief for short periods. For long term this is not what is recommended. Botox will end up killing the muscles involved but for short term it is a miracle. With trigger point injections on top of the Botox he was able to stabilize. We went to Boston Shoulder next top dr and founder had no idea what to do. Have been at Strong Neurological for the past year and they have him on Mexiletine, it is a cardiac drug but also used for seizures. Works great. But make sure to take the stomach meds like a Prilosec or another. Ask for physical rehab dr to confer, they think outside of the box. Or integrated med dr. They don’t just go from what they have learned in a book, and actually listen to the patient. CBD saved my sons life, med marijuana keeps him in check with the Mexiletine. Do not hesitate to ask for someone outside of the ICU, we’ve been there, for a month and no one could figure it out and told us psych was needed, bc they couldn’t figure it out. Child Protective was called on us also, bc they couldn’t figure it out. Now after almost 4 yrs MRIs prove a brachial plexus injury from surgery. And with the use of CBD and med marijuana he has not had a serious episode in over a year since we started this. Stay strong it is a long road. Listen and believe your patient. And research. Do not stop even when your tears are dry and heart is exhausted. There is an answer somewhere. There is a dr who will try one more thing. I will be praying for you.

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