This is my first time on the board.  My name is Margaret and my 16 year old daughter Annamarie was diagnosed with MM in October.  She has had several seizures in the past 3 years and was sent to a neroulogist to be put on medication.  They did a CT scann and when he saw it he immediately said she had had a major stroke some time earlier.  He wasn't sure if she was having seizures or TIA's so he ordered a MRI.  She was then diagnoised.  He still is not sure about the seizures so he wants to wait and have me keep a diary of her spells so he can decide which she is having.  I thought that was a good thing until coming to your site.  I live in Baton Rouge and am going to Children's Hospital in New Orleans.  Annamarie also has Down Syndrome and is on Medicaid.  I wonder if this has anything to do with the fact  that we are taking a wait and see attitude.  We are going to her pediatritian on Monday and will ask more questions of her.  Could anyone suggest some things I should ask or what way I should turn.  I am a single mom and don't have the money to travel to Stanford, which is what I would like to do after reading this site.  What are my opitons?  Thanks for the site.

Hi Margaret,

Welcome to the moyamoya family!

I'm sorry to hear about Annamarie and I know you have your hands full being a single mother and having a child with multiple medical problems.  I commend you for all your efforts to seek the best medical care for Annamarie.

Mar has given you excellent advice and we all question the waiting and especially since Annamarie is experiencing symptoms.  Do what you have to do to get Annamarie the care she deserves and needs but whatever you do, don't wait.

The advice I can offer is to send Annamarie's films to Dr. Steinberg at Stanford for an expert opinion. Or Dr. Scott in Boston.

Contact your local Medicaid office and explain Annamarie has a rare disease and there are only two moyamoya experts in the USA and ask them if they have an active contract with Stanford Medical Center and Dr. Steinberg or Dr. Scott and Boston's Women and Children's hospital.  If they do not, ask them if they will negotiate a contract with both Stanford Medical Center and Dr. Steinberg and/or Dr. Scott and Boston's Wommen and Children's. (Verify Dr. Scott is with the hospital I mentioned).  Check this site under doctors with experience.  If Medicaid will not negotiate a contract, contact your local Congressman to assist you in getting Medicaid to negotiate a contract with either of these doctors and their respective hospitals.

Once you know there is a contract in place, you can contact Delta or Southwest airlines to get papers for Annamarie's doctor to complete and you and Annamarie can fly to Stanford at no cost.  Or, you can contact Angel Flight or Mercy Flight.  Their information is on this board under the accommodations section.

Stanford has a Ronald McDonald house and you may be able to stay there or you can talk to the Stanford Social Worker, Michael, who can advise you where else you  may be able to stay at little or no cost.  I don't know of the accommodations available at Boston but they may also have a Ronald McDonald house.

I hope this helps and please keep us posted on Annamarie.

Both you and Annamarie are in my thoughts and prayers.

Hugs,

Lore

Margaret, God bless you!

since you are in N.O., I wanted you to know that Texas Childrens' Hospital in Houston has a good neurosurgeon with MM experience.  His name is Dr. Robert Dauser and he treated our son in March, 1997.  the neurosurgery dept there has been treating patients with MM since 1989.  You may be able to get housing through Ronald McDonald House or such.
So if Dr. Steinberg reccommends surgery for Annamarie and you can't travel to San Francisco, perhaps Tx Children's will be an good alternative for her.

I'll be watching the posts - so if you end up at Houston, I'll meet with you and help as I can.

My prayers will be with you,

sue