Hello everyone!

My name is Gillian and my three and a half year old daughter Polly was just diagnosed with Moyamoya on Monday.  She also has Down syndrome.

Now we know that Polly had a stroke on Sunday.  It temporarily paralyzed her right leg but she's now up and walking around.  She still has weakness but is doing well.

We live in Chicago, about ten minutes from Children's Memorial Hospital which is where we took Polly on Sunday after her incident.  They admitted her and had an EEG and an MRI/MRA on Monday and we were told about Moyamoya that evening.

We've already met with the Neurosurgeons at Children's.  They were very knowledgeable about Moyamoya (I checked on here about all the tests you recommend, etc...).

Polly's having an angiograph done in two weeks and then the surgery (indirect bypass, the one Dr. Scott does, right?) should be mid-November, app. four weeks after her stroke.

We are thankful we have a neurosurgeon right here who has done this procedure many times and also on kids with Down syndrome as we have three other daughters at home (another of whom we just adopted from Ukraine and also has Down syndrome).

I am already very thankful for this board and to Mary Grace for pointing me to it.

Appreciate prayer for Polly.

Thanks,
gillian

Briellesmum, I am so sorry to hear your daughter had another stroke.

I am praying for her and for all of you.

God bless.

Hey Gillian

You seem to be right on track for Little Polly. Indirect bypass is generally preferred for young kids because their arteries are normally too small for a direct bypass.

I will definately be thinking of you guys over the next few weeks and know that you're in good company here

Stay Strong and keep us posted
Mark (Luca's Dad)

Briellesmum, I'm terribly sorry to hear of Brielles latest episode. Thinking of her too.

Hi Gillian,

Glad to hear that your daughter is doing better and that you have access to local care for her. 

My daughter 6 y/o daughter, Ruby, recently had her right side surgery on 10/5 & left side surgery on 10/15 at Riley Children's Hospital in Indy.   She struggled a bit more to recover from the second surgery - nothing out of the ordinary, just the shock of two surgeries in such a short span of time.  She's been home for 4 days now and continues to improve every day.  Her surgeon has approved her to return to school for half-days next week. 

I would second everything Mar mentioned, the hydration and shutting down any crying episodes as quickly as possible.  This has not always been an easy task for me where my daughter is concerned.  She is very sensitive and becomes upset quite easily, especially when she doesn't get her way.  When the crying starts, I can usually find something to distract her, but it sometimes takes a while. 

Glad you found your way to this website.  You will receive lots of support from everyone here.

Best regards,

Jennifer

Gillian, How's Polly doing? I've been thinking about her...... Is she getting her strength back? has she had any tests? Keeping your family in my prayers.
Mary Grace

Gillian, That's great news. I'm so glad she won't have any long term dissability from the stroke. AS for the angio. I believe the laying still after the procedure is so she won't bleed from the artery that they enter in order to do this.They want to make sure it's healed up well. We had to go to Boston for ours and had to stay overnight because they didn't want something to happen on the road. We really didn't have a problem keeping her still she was pretty groggy for a bit. and we brought lots of stuff to keep busy.Videos are a must! She was pretty ahppy to just lay around watching videos.(something we don't generaly let her do much of) it was  actually a real treat for her. Good luck and keep us posted.
Mary Grace