I got this information from a 'alternative medicine doctor' who is laso a chiropractor.  I'm interested in all of your opinions....
To be honest I only believe about 1/2 of it.  But I do agree that Kelsey will need blood work, just so I can make sure she's 100% healthy if she will need surgery.........still no word yet on her second MRI.
Love and God bless,
Colleen

Sorry, I forgot to include the info from the doctor.

 I looked at the website and interestingly it only states what is happening with Moya Moya...not why it is happening.  The surgery looks to be risky.
I would believe that there would be an infection, inflammatory or auto immune disease that is repsonsible.  The surgery only treats the effect but what is to prevent it from reoccuring or causing further damamge somewhere else?  There are many  auto immune diseases that are of unknown origin or cause but they are named based on what is affected or who first recognized it.  
Metabolically the auto immune diseases can frequently go into remission maybe permanent remission if the health of the body can be improved enough.
With this young girl, before I would have any of my daughters go through this, I would do a thorough analysis like you had done through our office.  

FYRMOM911 wrote on Apr 28^th, 2004 at 1:00pm:

To be honest I only believe about 1/2 of it.

Call me a skeptic, but I don't believe any of it, sorry.


Quote:

infection, inflammatory or auto immune disease that is repsonsible

WHATEVER!!!

[smiley=twocents.gif]

D.J.
Don't be sorry, I wanted an opinion.  I'm feeling a little lost, but your website and all the wonderful people have helped me feel a little more at ease.
thanks

I'm kinda inclined to agree with D.J.on this not to mentioned has any real research been done to directly tie this to MM. This is just his opinion and what would he do to rectify it NOTHING. The surgery not to ever, ever, ever, make light of it as my daughters been through it isn't as bad as it seems, the recovery for 98% of people (my own opinion) is pretty quick. Hope I wasn't to harsh! :-X
                           Nancy  [smiley=smile.gif]

::)
This doctor I mentioned had no experience at all with MM, and I have yet to find any documented proof of 'healing' this with holistic and nutritional methods.   So I am going to have him to get just a full blood test, just to see what might be in Kelsey's blood stream, and see what we can do to help get her healthier, through a better diet.  
When she first started having her headaches we cut out all MSG and sodium nitrates and sugar. guess what.......still had the headaches.  We even went as far as keeping a log of when they happened, what she was doing at the time, what she had eaten, and how long and the severity of each one.  No pattern, that's when I knew there was something wrong with my child.
She is seeing a neurologist May 6th.  After his meeting we are getting together with her pediatrician to put to gether a request for a second opinion for Dr. Scott.  I've already talked to him, and he seems very helpful and agreed to review her films and the reports.  
Here is my belief in all of this.  I am not going to try to heal my child alone, like my father's holistic doctor, or sit in church and pray to God that my child will be healed.  God gave these surgeons a gift for a reson!  I will seek all their help she needs, do my best to keep her healthy, lean on you people for support and questions, and pray to God to help her through this, and give me strength to handle what ever comes our way.
I hate waiting, but I know it's part of the process.
Thanks, and I'll keep you posted.
Colleen

Colleen,
           I'm so glad to here you will keep persueing this, good job the waiting stinks but your right part of the process. Keep us posted!
                                    Nancy  [smiley=hug.gif]

FYRMOM911 wrote on May 2^nd, 2004 at 7:46am:

God gave these surgeons a gift for a reson!

Exactly how I feel to, if you pray for God to get the best care for your child He will do it. God led me here to find the best care for my son then, He made it possible for me to travel thousands of miles to get to the best care my son could recieve.

FYRMOM911 wrote on May 2^nd, 2004 at 7:46am:

After his meeting we are getting together with her pediatrician to put to gether a request for a second opinion for Dr. Scott.  I've already talked to him, and he seems very helpful and agreed to review her films and the reports.

Colleen, it sounds like you are on the right track.  There are a few specialists around the country who deal with moyamoya and Dr. Scott is certainly one of the best.

We'll be here for you to lean on whenever you need!  Let us know how it goes.

:)

Helo all!

I have thought this may be an auto immune disease. I was very sick (high fever) when I had my first problems. I wonder if somehow my brain got the same "flu" as the rest of me. Has anyone else associated MM with high fever?

Now, I just want to clarify, that I 100% think the surgery is necessary. I had mine 14 years ago, and I am doing great...

Take Care everyone!

Sara,
        Yes my daughter had a very high fever 4 days after her last major stroke she was in the hospital at the time and they couldn't break it, for almost 24 hrs. we almost lost her that night, so yes in our particular case we did experience the high fever.
                                   Nancy  :-[

I have read (of course can't find the links right now) that MM might be an autoimmune disease also. In fact, in my own case, I believe it is an auto immune disease that caused my MM because I have other medical problems linked to auto immune diseases.  In my own humble opinion, I believe that MM can be caused my many different things, depending on the person and their history.  Injury, auto immune, genetics etc.    Course that doesn't mean that one should not have surgery for it!  I don't see how a change in diet etc. can restore a middle cerebral artery for example.   :-/

[smiley=twocents.gif]  Lisa

Lisa H,
          In the beginning we were told you could get MM from alot of head injury also and Mandy has had 3 or 4 concussions before it kinda makes you wonder don't it.
                    Nancy

Colleen~
I'm glad you're doing everything possible to help Kelsey. Diet and all will certainly help. Am glad too that you're seeing a specialist because that will help a lot. You'll get some answers --- also more questions.
I was always told I was 'too fat' and indivualistic.. After stroking at age 49 I discoverd my mm. That 'solved' some of the questions I had about my life. After the surgery I felt MUCH better. I'm still valuptous tho!!! The surgery is scary because it's on the brain, but it was alot easier than I expected.
Keep up the great work of examining all the possibilities.
Love to you and Kelsey.

LA (Linda)