Hello

It has been a while since I’ve been on.

Things have been a roller coaster.

My daughter, now 28 has been knowingly dealing with her AVMS for a year now. Although from all that we have learned she has been dealing with this for much longer.

May, June and August were very rough. She was in ICU for most of each of those months and we thought we were losing her.

Side affects of medication have not been that great either. The last three months have been much better. She is down to conclusive seizures only once every couple of weeks. And the focal seizures are almost down to once or twice a week.

The latest medication seems to be working and we are also doing acupuncture. She eats coconut oil regularly and only drinks coconut milk, although she is not fond of the taste. She takes about 4000mg of Omega 3 Dahl to help her clarity and thinking.

The toll on her body and brain have been substantial. She is down to 94 lbs and although the hair loss has cut back, she still wears hair pieces to help hide bald spots.

She finally agreed to a skin biopsy and we now know she has Ehlers Donlas.

They attribute all of her problems, including her AVMS to this. I am a positive as well.

Frustrations?
Surgery is still not an option. Her heart valve problem, along with her blood clotting disorder on top of still actively having seizures means they won’t risk. This means she is still a walking time bomb. She has not had a bleed since May, but it is a constant fear. If she has a rupture, there is nothing that would save her.

Sorry for the misspelling. …darn auto spell.