Moyamoya.com Forum - Print Page

Moyamoya.com Forum
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya Related Topics >> Moyamoya Related Information and Support >> my 3yr old son was just diagnosed w moyamoya today http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1213420413 Message started by juniorasp_01 on Jun 14^th, 2008 at 1:13am

Title: my 3yr old son was just diagnosed w moyamoya today
Post by juniorasp_01 on Jun 14^th, 2008 at 1:13am

i am going to have to go out of state to get him surgery and everything i don't know any doctors did anyone have there surgery at childrens in denver or mayo clinic?? my 3 yr old is going to have to go to one of them. i am wondering if you have a small child with this disease did they pull through it ok?? i am 5 months pregnant and am now worried if this child may have it to.

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by juniorasp_01 on Jun 14^th, 2008 at 1:38am

oh yeah he was diagnosed after having seizures but no stroke. he only has it on the right side of the brain and he was diagnosed early. they want to get him an apt. with a nurosurgeon within a month or so and are trying to prevent a stroke.

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by SD on Jun 14^th, 2008 at 2:56am

Our five year old adopted son was diagnosed after a few TIA's (transient inschmic attacks, similar to a minor stroke) He had is second surgery for EDAS on Thursday and seems fine. He did have a small stroke after the first surgery (on the non-surgical side) and is recovering from that too.

Best of luck.

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by Skay on Jun 14^th, 2008 at 11:42pm

juniorasp
I know of some surgery being done for mm at Mayo and University of Iowa. Iowa university does have a childrens hospital. It is a hard decision to make. You and your family are in my prayers. Take care, Sharon

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by DJ on Jun 15^th, 2008 at 10:18am

I'm sorry that your family is going through all of this, HOWEVER, I am SO glad you found us. This message board is full of information, both regarding adults and children. Dr. Scott at Boston Children's Hospital is VERY educated on the pediatric side of this as well as the leading expect Dr. Steinberg at Stanford. I would highly suggest you contact each professional ASAP so they can review your son's film and make a decision on treatment. The number one advice I can give is DON'T WAIT!!!!

DJ (my husband and founder of this site) and I are located here in Wichita, we weould love to talk with you more!!!

PLEASE contact us so we can get you in touch with the best for your son!!

Much love and prayers,
Stephanie Johnson

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by mandyz94 on Jun 15^th, 2008 at 11:55am

My son was 5 months old and had his surgery at Childrens in Boston by DR. Scott.

Title: Re: my 3yr old son was just diagnosed w moyamoya t
Post by Jennifer_Rose on Jun 15^th, 2008 at 10:18pm

Hi,

Our daughter, Jennifer, was diagnosed with MMD when she was two. She's now four. The doctors at the Cleveland Clinic stumbled across it when they did an MRA. She's visually impaired and they were checking the blood vessels around her eyes when they saw the "puff of smoke". We flew her to California where Dr. Steinberg did surgery on her right side. She too only has it on the right side. She did amazingly well!! No strokes!!
Good Luck and God bless you.

Michelle

Jennifer has a website if you'd like to read more about her surgery. www.myjenniferrose.com