Hi,

Oh my story is long but will try to keep it short and sweet.  My name is Tish and my husband is Dan, we have 3 kids.  2 boys who are 5 and 1.  Our daughter who just turned 3 has Down Syndrome and Moyamoya.  This week we finally got the official diagnosis of Moyamoya.  Last May my husband and I noticed that my daughter was not using her left arm.  We took her to the ER and while waiting for some x-ray results we started noticing more things such has not using her left leg, not responding to touch on the left side and a droopy face.  From there a CT Scan was performed and that showed signs that were consistent with a stroke. A few hours later she had a MRI/MRA and it confirmed that she had 2 strokes on the right side of the brain.  She was at Phoenix Childrens Hospital and was there for 3 weeks until she regained use of her left side.  Since her discharge we get weekly OT and PT to help her with the left side.  She also gets therapy at home that is provided through the state of Arizona that is related to her  having Down Syndrome.  At the hospital it was suspected that she had Moya-Moya but the neuro-surgeon did not want to confirm it until she had later scans.  In July of last year she had a angiogram preformed and everything looked really good. A few weeks ago she had another MRI/MRA and things still look good, a few changes on both the left and right side of the brain but not enough to cause concern.  She is taking 1/2 tablet of the low-dose asprin and we try all that we can to keep her healthy and hydrated.  We were able to ask more questions with the doctor this week and were able to have our minds put at ease, at least for a while.  In 6 months another MRI/MRA will be performed.  I would like to thank everyone for sharing their experiences, comments and concerns.  Since last May my husband and I would log onto this sight to read and understand about this disease and get a feel what other people go through.  We have information that the hospital gave us about Moyamoya but lets be honest it came from medical journals and half of it you can't pronounce the words and I think I spent more time looking up the definitions of words. Also this group is so full of information that it helped my husband and I compile a list of questions that we were able to ask the doctor.

I look forward to chatting with other members and thank you for allowing me and my family to being a part of this group. This road in our daughter's life still feels so unreal and scary.  It is a comfort to know that there are others who understand and can relate to us.

Tish 

azhurds wrote on May 15^th, 2010 at 12:27am:

Hi, Oh my story is long but will try to keep it short and sweet.  My name is Tish and my husband is Dan, we have 3 kids.  2 boys who are 5 and 1.  Our daughter who just turned 3 has Down Syndrome and Moyamoya.  This week we finally got the official diagnosis of Moyamoya.  Last May my husband and I noticed that my daughter was not using her left arm.  We took her to the ER and while waiting for some x-ray results we started noticing more things such has not using her left leg, not responding to touch on the left side and a droopy face.  From there a CT Scan was performed and that showed signs that were consistent with a stroke. A few hours later she had a MRI/MRA and it confirmed that she had 2 strokes on the right side of the brain.  She was at Phoenix Childrens Hospital and was there for 3 weeks until she regained use of her left side.  Since her discharge we get weekly OT and PT to help her with the left side.  She also gets therapy at home that is provided through the state of Arizona that is related to her  having Down Syndrome.  At the hospital it was suspected that she had Moya-Moya but the neuro-surgeon did not want to confirm it until she had later scans.  In July of last year she had a angiogram preformed and everything looked really good. A few weeks ago she had another MRI/MRA and things still look good, a few changes on both the left and right side of the brain but not enough to cause concern.  She is taking 1/2 tablet of the low-dose asprin and we try all that we can to keep her healthy and hydrated.  We were able to ask more questions with the doctor this week and were able to have our minds put at ease, at least for a while.  In 6 months another MRI/MRA will be performed.  I would like to thank everyone for sharing their experiences, comments and concerns.  Since last May my husband and I would log onto this sight to read and understand about this disease and get a feel what other people go through.  We have information that the hospital gave us about Moyamoya but lets be honest it came from medical journals and half of it you can't pronounce the words and I think I spent more time looking up the definitions of words. Also this group is so full of information that it helped my husband and I compile a list of questions that we were able to ask the doctor. I look forward to chatting with other members and thank you for allowing me and my family to being a part of this group. This road in our daughter's life still feels so unreal and scary.  It is a comfort to know that there are others who understand and can relate to us. Tish

Hi Tish.

We feel with you.

We had done a scan on our son this Tuesday. It was quite a surprise to us that our son is so sick.
He had a brain haemorrhage last year the doctors wanted to know why.
As you write, it is a very unreal situation. Our son seems healthy, but in reality he is very ill.

We are really excited for this forum. We felt that we were all alone in the world with this illnes. In Denmark there is only one case of Moya Moya.

In here we have found support from nice people who feel with us.

You are welcome to write us at danogamalieriis@gmail.com

We live in Aalborg in Denmark. We have four children aged 7-8 - 14 - 15 years. Our son of 14 years has Moya Moya.

With Best Regards

Dan & Amalie Riis, Denmark.

Tish, welcome to the moyamoya family.i'm sorry you had to find us but you will find it a very informative and supportive group of people. My daughter was diagnosed with moyamoya at 5 yrs old (8yrs ago) she was also born with Down syndrome. If I can help with any questions you have please ask away. She had her surgeries at Boston Children's Hospital with Dr. Scott. It was a very stressful and scary time.
Mary Grace

Hello and welcome. Sorry it has to be under such circumstances, but hopefully your daughter will come through alright in spite of her MM diagnosis. I am concerned though, that you are given a "wait and see" approach to her treatment. MM is progressive and WILL progress. That will be putting her at risk in the interim. Do seek additional medical opinions. Unfortunately, Downs syndrome can also be associated with many disorders and complications. She may have MM and other health issues to overcome as well. The love and support of her family is the real treatment for her recovery and well being.

Keep us posted and best wishes...Diane

Thank you for the wonderful replies.  It is great to feel welcome.  I should add from the last comment that we are not really in the wait and see mode, but it does seem like it.  We asked the doctor about the surgery and he feels that because she is doing so well that as of this time the sugery is not needed.  Her brain looks good, she is growing and her strength has improved since last May, which is when she had the stroke. Also because my daughter is small he would like her to be a little bigger before the surgery is performed.  I know he said that in 6 months another MRI/MRA will be done and at that time he will do a test that will make her hyperventilate and that will see how the moyamoya vessels handle it.  Has any one had this procedure done.  It sounds really scary to me.

Tish
On a side note anyone watch the season final of Criminal Minds?  Dang mind is playing tricks on me!