It’s been a rough week.
Little girl couldn’t get a break from status seizures.
Our rescue drugs were not keeping them at bay.
Unfortunately the cocktail offered by the hospital sends her into orbit.
It’s going to be a rough few days here as they work to break the cycle and try to figure out why she is tanking.
Her reputation preceded her. She gets the sad prize for being her neurologist’s most complicated case.
Praying for answers.
Praying for patience. She’s been raging for hours and we anticipate many more.
Please pray for little girl.
Julia - I'm sorry. Huge hugs for you and prayers to go with.
ReplyDeletethose pictures are heart-breaking! Prayers for sure.
ReplyDeleteHave you considered trying non-THC CBD oil? Ping me if you want/need some info.
I'm so sorry. Sending positive thoughts your way.
ReplyDeletePraying for her.
ReplyDeletePraying for all of you today.
ReplyDeletepraying praying praying. So very sorry this is happening! Praying for the dr.'s to find a solution for her seizures!
ReplyDeleteSo many prayers for you all.
ReplyDeletePrayers for Mary, and for all who love and care for her, and for answers to the mystery to be found and administered asap.
ReplyDeleteHugs all 'round.
Susan in Kentucky
Oh Julia! Praying for and with you--at night on my own abd every week in synagogue. Praying your little girl gets better.
ReplyDeleteThis might be kind of long, so please bear with me. I have been on a journey for a almost a year having my food intolerances tested and finding out foods that I have an issue with and yesterday I was wondering if going back to eating some of the foods I'm not supposed to eat was maybe triggering my vertigo and I found this lady's website and it got me thinking about neurological connections to foods. https://elizabethyarnell.com/ And then I read your blog post today and wondering if your baby girl's seizures could be food allergy/intolerance related and did a google search and found this. https://www.epilepsy.com/connect/forums/living-epilepsy-adults/food-triggered-siezures I don't know if you've seen a naturopath or not but it might be worth a shot for your little girl. My daughter has chronic (daily) migraines and we have done pretty much all of the traditional treatments and biofeedback (which did help quite a bit) and physical therapy which is helping and we've also done food/nutrition counseling with MRT/LEAP testing which tests your blood for food intolerances which also helped. She still has nearly daily migraines but they are not as severe (and I am still holding out hope that we can beat them!). Anyway, I just wanted to share my rambling thoughts this morning, just in case my journey could help you all on yours. Here's the link to the MRT/LEAP test. I did a google search to find a person who could order it and help me with the diet in my area and found a wonderful nutrititionist. https://nowleap.com/how-food-sensitivities-cause-inflammation/
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