Hi,

My 7 year old daughter was just diagnosed after an MRI/MRA yesterday at Children's Mercy in Kansas City. We have been dealing with her symptoms since she was 3 and are very relieved to finally have an answer. But, we still feel so in the dark. We have no idea what to expect and what time frame we are looking at. Her neurologist has suggested a Dr. at Texas Childrens and we are waiting to hear from them. Any suggestion in the mean time?

Thanks!!!

Hi Sandy,

My daughter who is 8 was diagnosed with MM in April this year at Children's Mercy in Kansas City after two strokes.  Our neurologist there (Dr Cruse) referred us to Dr Dauser in Houston.  We heard from Dr Dauser within two weeks and his nurse Sharon set up our appts.  Our first surgery was May 21 and 2nd June 8.  My daughter is now doing very well. We were in hospital 4 to 5 days each time and then stayed in town a couple of additional days each time (at a friend's house!)  We go back next spring for follow up tests.  Lots of people here have gone to Stanford and Boston, but we chose to go with the recommendations from CMH.  Dr Dauser exceeded my expectations.  The nursing staff at Texas Children's was for the most part awesome!  Dr Dauser's nurse Sharon helped us out a lot with answers (she will email or call you).  Dr Dauser knows our local neurologist personally. 

Good luck with your decisions on where to go!  Any more questions about Dr Dauser or Texas Children's I'd be happy to answer!

Jody

Hi  Glad to ease your mind a little!  Dr LePichon at CMH, Dr Cruse and Dr Dauser all agreed on what my daughter needed. However,  I think most people on the board would recommend you send medical records to Stanford for a second opinion - certainly that's a good idea.  I did feel very nervous before we got to Texas Children's about our decision, but now I am very pleased with our results!  If you do go there, tell nurse Angela Hi from Lina!!!  She was awesome.  I wish I could remember our surgical nurses name because she was awesome too.  The waiting room is cold so take a sweater.  The food was awful so we brought food in for Lina when she was ready to eat, but there is stuff in the hospital and places nearby.  Good luck and keep us posted.

Sandi!  I am so glad you found a doctor you feel completely confident in.  The fact that someone on here has a good opinion of him from experience is just great!  Now you can focus on the results and feel that your daughter is in competent hands.  I think that's what we all want for our kids.  I wish you good luck on your journey and a speedy recoery.    -Audrey