Should there be a diet restriction with MM?  After Surgery (bilateral pial synag.) for Amanda 8year old, there were no diet restrictions.  She had the surgery in Boston.  I know she should always stay hydrated.  There is a 7year old boy who had surgery here in Pittsburgh at Childrens Hospital (I don't fully know his diagnosis, but they think he has MM and maybe neurofibromatosis?) , he had indirect on one side, they gave diet restrictions post surgery to restrict sugar, salt and cafeine.  Again I do not not the full details.  I am starting to worry because I have always been a poor cook in our household.  Our family eats poorly!!  Amanda loves chocalate, cheese, bacon and of course junk food.  Does anyone follow a certain diet or restrict certain foods?  Any help on how to add nutrition to our meals?   Tammy, Amanda's mom.     Also, she just went back to school today.  A lot of people were suprised, but she seems to be doing well.  She has had some headaches in the middle of the night and one night she woke up saying her right leg hurt really bad,  I gave her tylenol, stayed with her and she fell back to sleep and never hurt after that.  I was concerned but she seemed fine.  We will be seeing her neurologist sometime in May as her first follow up appt.  Prayer is such a powerful thing and I thank GOD every day that Amanda made it through that surgery.  It was really hard to see her in the hospital.  I think she was more depressed than pain issues.  But that has gone away since we've been home.

Just like anything, junk food, lots of red meat, bacon etc. is not good for anyone! After MM diagnosis and surgery I was diagnosed with high blood pressure and cholesterol and was put on a low salt and no red meat, low milk, cheese - diet. My thoughts are that since I have had strokes, I do not want to cause other strokes, heart attacks on my own - from bad diet and no exercise, from my arteries clotting. I need to stay as healthy as possible for my brain and my future!

I never had any restrictions. Hydration is important, and so is not going nuts with salt intake, due to blood pressure increase, and other things that could clog blood vessels, but those are long term things that everyone should follow to stay healthy.

Hey Tammy

We were not given any diet restrictions either for Luca and she enjoys most of what you listed above except we limit the junk food.

Caffeine is a well know vascular constrictor and should definately be avoided.

I hear what LWelch010309 is saying: keep as healthy as possible.

Good post, I'm also interested to see what others have to say.

Take care
Mark (Luca's Dad)

Even though your doctor may not have recommended a certain diet, it would still be a good idea to avoid fatty foods and drinks and follow a well-balanced healthy diet. I cut out soft drinks almost completely from my diet and only drink water and green tea and fruit juices. I also eat more lean meats and fish as opposed to sausage and brats and bacon.

I was told to stay away from sugar subsitutes except truvia, splenda, and stevia. The nurtrasweet found in most Dite soda is really bad and is a cause of headachs. It can also pop up in diet foods.

Becky wrote on Apr 21^st, 2010 at 12:45pm:

I was told to stay away from sugar subsitutes except truvia, splenda, and stevia. The nurtrasweet found in most Dite soda is really bad and is a cause of headachs. It can also pop up in diet foods.

Aspartame and sucralose to nasty things to me. I feel like my nervous system is being attacked when I accidentally ingest these.

Vega wrote on Apr 21^st, 2010 at 11:05am:

......(snip)......(snip).......I also eat more lean meats and fish as opposed to sausage and brats and bacon.

You eat naughty children?? ;D

Hehe... where I come from 'brats' are undisciplined little ones. What are the 'brats' you mentioned?

Mark (Luca's Dad)

I was never given any restrictions, in terms of diet, by my doctor.  Based on what I know about caffeine, I completely reduced (but not eliminated) my caffeine intake - more common sense stuff.  I think moderation is the key.  Also, if something doesn't make you feel good - avoid it!  Smiles...

-Shari

Little Luca wrote on Apr 22^nd, 2010 at 4:50am:

Vega wrote on Apr 21st, 2010 at 11:05am: ......(snip)......(snip).......I also eat more lean meats and fish as opposed to sausage and brats and bacon. You eat naughty children?? ;D Hehe... where I come from 'brats' are undisciplined little ones. What are the 'brats' you mentioned? Mark (Luca's Dad)

Bratwurst....

I know this is a old post but I enjoy cooking.  I'm not the greatest but I do get the cooking bug and like to try out new things.  I have 3 small children so I don't like to make things that take forever.  My daughter was not put on any restrictions but to make sure she eats balanced meals.  My daughter is 3 and the one thing recommended for her are the boost drinks.  They have many vitamins and are filling.   I read your comment about bacon and they one thing that I can recommend is Canadian bacon.  It is basically taste like ham but it is very lean and easy to make and really good.  Canadian bacon  is what they put on egg mcmuffins.  I actually make my own. I buy the oro-wheat English muffins (whole wheat).   I then make a egg sunny side up.  I don't use butter or grease in the pan but the cooking spray.  Then I use 2 slices of the Canadian bacon.  You can also add vegetables to the breakfast sandwich.  You can use tomatoes, green bell peppers, spinach.  You can also add some cheese like swiss or a little bit of cheddar.   It is really yummy and should give it a try.  Also my life saver and favorite thing to cook in is a crock pot.  You can make so many meals in the crock pot that are healthy for you. 

Tish Hurd

Tish,
Thank you for the good advice,  I will the canadian bacon.
Tammy

I had no idea that artificial sugar was bad for people with MM. I love Splenda and I only drink diet sodas. I wonder if that's why I've still been experiencing really bad headaches regularly...

I know this thread was started awhile ago but I was really wondering about our diets in relation to moyamoya.

I know that artificial sugar is bad in general, so is any other soda. Before I was diagnosed, I was on a organic, no fast food, minimal processed food diet by choice. I had a pretty quick recovery after surgery. I was wondering if anybody out there has seen positive outcomes due to changes in their diet??

Also, do supplements like Omega-3 and Vitamin C (supposedly strengthens blood vessel walls) really help? I recently read a study done about the benefits of Oolong Tea and it reducing the chances of an ischemic stroke by almost 20%!

Thanks!

I have had the same advice with artifical sweeteners & caffine.  I've also been trying to eat more fish.  On the other hand I have had a very serious problem with too low of sodium.  My Dr said it's from drinking so much water.. once I was diagnosed with moyamoya all I did was drink water and nothing else for the two months before my sugery and lots of it.  when you have too much water the water and salt ratio in the body get's out of whack.  So much so that it was causing me to pass out, hands to swell up and to get really dizzy.  One thing I learned from that was well we need to hydrate a lot, it can't always be just water.  So I've been drinking a lot more gatoride and I'm still on a slightly high sodium diet, I am at least off the sodium tablets I had to take daily after my sugery.  I have had  problems with extremly low blood pressure, so high blood pressure is not an issue for me (right now at least). I guess all I am trying to say is, don't cut out all of your sodium,  not enough sodium can mess you up just as much as having to high of sodium in your diet.