Everyone............I am so sorry............I should of posted this sooner.........Just with everything going on I didnt think about it.

       Shortly after Roberts 1st full blown episode, which I can now say is a TIA I bought a SPO2 Monitor and a Electric BP cuff(to remove and varyation in the hearing between Julie and I..........I noticed that if Robert complained of a Headache and stomach his Bp would be high 160/110 his Heart rate would be high 125 (normaly he is around 85, his SPO2 would be Low around 90% Being a EMT I had oxygen on hand and gave him 6liters by Non Re-breather....in 5 minutes all vitals would be normal and his headache and stomach would be gone...
He has never had a full bloown episode when we get the oxygen on him right away, It also Seems to stop a TIA in its tracks(when he is already in a full blown episode) After I talked to his Dr. he gave me a prescripition for Home oxygen..........His new Dr. The one who Diagnoissed MMD  stated in his directions and prescriptions to continue O2 as a abortive measure.........
It seems to work very well for Robert......... Maybe some of you others...struggleing with the symtoms of MM would benefit from O2 Therapy.....Ask your Dr.'s and see what they say


Mike

Hi, Mike.  Thanks for sharing your experience.  I am glad that O2 works well for Robert.  

We looked into hyperbaric oxygen therapy after Daphne's strokes, but we were afraid to pursue it.   I have read that O2 is a vasoconstrictor (constricts the blood vessels), so I would just caution anyone to check with their moyamoya specialist/ surgeon before trying it.

I know that an optimal balance between CO2 and O2 is very important (the factor that causes TIAs during hyperventilation is not reduction in O2, but reduction in CO2 - a vasodilator - according to the book I have on MM disease), so I would just stress caution.

Of course, you know your own child best and what works for him... I am always doing things with Daphne that aren't mainstream, but which I feel works, just based on what I see with her.  You always have to do what you feel is best :)

Jenny (mom to Daphne. www.daphnestory.com)

Hi!

Here´s our experience of extra oxygen:
I am the mother of Louise, now 10 years of age and 3½ years post surgery, performed in Sweden.
To deal with the symptoms on moyamoya while waiting for surgery she was given "Home oxygen" and kept it until about one year after surgery. There are no mm-experts in Sweden but they agreed on this following my suggestion, but only 2 liters for 5-15 minutes and it always worked for her. For a few months i carried around these tubes wherever she went. I was told to be sure she kept her breathing normal to keep the balance between O2 and CO2.
These oxygen tubes was a great help and comfort to us but finally she agreed on returning them to the healthcare about one year ago. She didn´t use any extra oxygen in a long time but felt more secure knowing they were in the house, just in case.....
She still has mild symtoms fairly regularly but prefers to deal with them in other ways.
Thats our story about Home oxygen hope it helps someone! ;)

Take care and have a fantastic gettogether in Orlando in a few weeks, wish we could be there!!!!! :'(

Annica and Louise

Thanks for posting that!  It might be of some use to me.. Even when I feel tired and weak and possibly a tia coming on after exercise... I still have enough O2 in the blood... but it just doesn't get to the brain.. but maybe adding more oxygen would ensure that I get what I need. thanks for posting

Ladybugs,
        Thats exactly what the Dr. explained to me .......that the o2 level is ok but because there is not as much blood getting to the brain there is not as much o2 getting to the brain so by giving robert o2 when he complains of symptoms, we are getting the same amount of blood  to the brain but it blood saturated with oxygen to the brain, to stop the difficulties.

But please ask your doctor,

Mike