Our son was diagnosed with Moya Moya syndrome in a few days ago.

Several have said that our son should drink plenty of water.

I've read that caffeine is bad for Moya Moya people.

What about food? Is there anything he should not eat?

He eats sometimes headache pills. Is there any kind of medication he must stay away from?

We have not talked to any doctors yet about these things. In Denmark it is apparently difficult to find doctors who know about Moya Moya.

Sincerely Dan & Amalie Riis, Denmark.

Dan And Amalie Riis,
Keeping hydrated is key. Caffeine and achohol will dehydrate a person but my nurolgest did not put a restriction on my caffiene in take. He just said use your best judgement, but for acholhol i am restricted to two glasses maximum and not every day. My caffiene in take is two cup mug of coffiee with creamer then a can of coke-cola or caffinated tea in the afternoon. I drink water the rest of the time.

Foods to avoid i don't know any, unless there is an alergy.

Foods recomended: Cyane(SP?) pepper iand garlic are good for blood flow.

Medications: make sure the headache medication if not in the triptan family (relpax, initrex, ect). I personal was on topamax daily then when my headaches got to be less frequent I now take generic: 365mg Excedrin lased with Vicaden(sp?) that was prescribed by my nurologest. I have heard others saying to stay away from some cold medications but I only had restrictions right after my surgery for a month. That question I would talk directly to your neurologest or email Dr.Scott or Dr. Stineberg.

I hope this helps! Please keep the questions comming, because knolage is power!
Becky

Dan and Amalie,
I am sorry I have not had a chance to respond to your other post from a few days ago.  I do want to send you a private e-mail about it, but I have not been feeling well (not moyamoya related).   In the meantime I saw this post and did want to direct you to this thread about medications to avoid.  There is lots of good information here especially from a pharmacist who gives specific information about why specific types of medicine should not be taken.

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Tracey

Thanks to you both.

Sorry the late reply. We've had some bad days.

Thanks for the link. We have informed our son about the importance of drinking lots of water. His school is sweet to make sure he drinks all the time.

I've looked at the link. But in Denmark the medicine is not called the same as in the U.S..

So I must talk with a Danish doctor.

/Dan & Amalie Riis