Medical update

So much has happened medically since I last wrote a blog entry. 

Last you heard we had a completely amazing 14 day round of seizure freedom... Honestly, I'm not sure who or what was responsible... Izabelle had had a full Reiki treatment at the common ground fair, she had an increase of Banzel... unfortunately it wasn't the medical MJ. 

After that, Izabelle's little brain went back to its normal pattern of seizing every fifth or sixth day. Only emergency a dose of diazepam will end the monstrous seizures, as they come in cycles now. We re-tested medazolam and lorazepam to no avail... 

We went to Boston Children's hospital again in October. The MRI didn't show any changes and the spinal puncture that Izabelle endured didn't indicate anything out of the ordinary for neurotransmitter levels. We tried to have the doctors test for autoimmune encephalitis at that time, but they wouldn't... we have yet to go to the lab, but that test has been ordered and approved.

We saw Dr. Sulak and his wife Dr. Saab... the most loving and pure pair of married doctors one could ever wish for. We came up with the plan to continue trying THC rescues both orally and in the form of a suppository. He also recommended that we increase THCa levels weekly with a goal of 7mg 2x's a day... Sadly, this produced more grand mals... and we had to take her off of it... The THC rescues didn't work either...

SO, this mama went on another frenzy of proactive searching for next steps...

Along with other moms in the epilepsy community, I came up with this list:

• Autoimmune encephalitis test - pending
• Visit Dr. Souhel Najjar at Lenox Hill, NYC
• Visit Dartmouth Hitchcock Epilepsy Center - Friday, November 27th (tomorrow)
• Visit Dr. K in Long Island - Total jerk and only had one suggestion... 
• Visit Mass General Hospital
• More Reiki - energy work
• VNS - DAD DOESN'T CONCUR... PATIENCE... 
• Tumeric
• Hyperbaric oxygen chamber... a no go by the PCP
• CBD in the future, again...
• IVIG - antibodies are delivered through an IV... NEURO says this is an option... now if I can only get him to follow through
• Test for tape worm.. just in case - pending
• NERF2 - Reduces oxidative stress - I want to try it for my autoimmune disorder
• Retry ONFI?