Has any-one had experience with giving their child, who has MoyaMoya, the MMR jab? That is, the MEasles, Mumps & Rubbella 3 in 1 injection. I am due to give it...
Not sure if this is helpful. Alan had a reaction to his second MMR (In Australia we get three jabs when tiny babies) He was about five months old and had a...
Did anyone happen to watch NBC Today this morning? They had a segment with Dr. Scott and Boston Children's Hospital. I turned the TV on in the middle of the...
Thanks again for all your support. Once we contacted Dr. Scott his perspective was to do surgery right away. We were able to get a date much quicker than we...
Did you ever think that the old tail of not trusting the Husband when it comes down to details was true. Especially childhood injections. Well you have been...
Gosh I missed the Today show on Dr.Scott when was that. I am so glad that you are getting surgery so quick. Waiting is so hard. Mary [Non-text portions of this...
Dear Kathy, So glad to hear you are getting the surgery done so soon. I know you will feel much better not having to wait and wonder. I would! We will...
The segment was not about MoyaMoya but about a grandmother and her grandchild both of whom were operated on by Dr. Scott 20 years apart. I forget the name of...
Russell, Thanks so much for replying. Glad to hear Alan is doing ok now. Do you think Alan reacted to the second MMR because of the way he reacts to ...
Sorry Nancy still some confusinon from my first post. Alan had a MMR injection about a year after his surgery and had no reaction at all. In Australia they are...
Thanks Kathy for the information. I tuned in toward the end of the segment and just heard enough to know it was about Dr. Scott and BCH. I still haven't heard...
Hello, we are a family in Eastern Pa and my adopted Korean daughter was diagnosed with MoyaMoya last summer. She was 19 at the time and started with numbness...
Headaches can be a real problem with moyamoya. My daughter had awful headaches following surgery. Her neurologist put her on 250 mgs of diamox. It is a ...
Thank you for your response. I will be suggesting the Diamox to the neurologist. My daughter continues to experience spells of temporary hand and leg...
hi im a new member my name is jane i come from West Yorks in England. My daughter Chloe was diagnosed with moya-moya when she was 1 she is now 5 nearly 6. I...
Hello, sorry it took so long to respond but I havn't been on the comp. much.My daughter was diagnosed at 4 and had 2 surgeries, and 5 strokes.She is doing ...
Everyone, I emailed with a few of you back in late August and early September and the information you all offered was invaluable. After communicating with Dr....
Julia, so glad to hear everything went so well for your daughter, Allison. I'm also glad you didn't "wait for her to have a stroke" -- how ridiculous! My ...
Thanks for your email. No, I kept Allison home. I am off work for a few weeks to care for her and we are doing school work at home. We were extremely blessed...
Julia, you are so lucky that you found the Moya moya before your daughter had a stroke. i so wish we could have known soon enough to prevent Kathleen's ...
Michelle, I sometimes feel guilty that Allison never suffered a stroke or TIA as most children do before diagnosis is possible. I actually stopped emailing on...
Hi Li. I hope you had a great Thanksgiving. Ours was nice. We spent it at my brothers house. I sometimes rush through my emails but I think I should slow...
Julia, Well Done! My son was 11 when he had his surgeries. He had them done by Dr. Steinberg in CA. They were done a week apart and he did have staples. With...
Thanks for your response. For those of us who have been through it, we know the miracle of it, but for those just getting the diagnosis....they are in the ...
Julia, So glad to hear that Allison is doing so well. We are heading up to Boston for our two kids annual MRI's with Dr Scott. We too live in the D.C. area...
Hi Heather, Thanks for your email. I would love to hear more about your kids situation. Our Neurologist is Dr. Tena Rosser and the Neuro-Surgeon that we saw...
Li, I am trying very hard to figure out how all of this came about for you and your daughter. You said she had headaches and trouble seeing and that she had ...
Dear Friends, I have heard many of your stories and know how grateful we are for Dr. Scott and the miraculous surgeries he has performed on our children to...
Hello Li, I have not had the pleasure of seeing Dr. Scott. I am from Florida so we see a doctor at the University of Florida ( Shands) Dr. Mickle did my...
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