Danette: I am actually an adult (23 years old) that was diagnosed when I was 8. I remember I was always okay in PE class. I had to wear a helmet after surgery,...
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dareinhart@...
dareinhart
Mar 11, 2004 9:04 pm
Danette, we were told that my daughter needed a spotter if she was going to be up on any equipment. She also was not to get dehydrated or hyperventilate. They...
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RGrace5@...
mg12061
Mar 11, 2004 9:04 pm
Danette,The 2 precautions we were given for before and after surgery where,that dehydration and hyperventilation where a danger for her.I would asume this ...
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RGrace5@...
mg12061
Mar 11, 2004 9:01 pm
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dmvcpa_drogers
Mar 11, 2004 7:42 pm
I am curious... was anyone given any precautions on PE in school for the time period before surgery? Is there ANY limitations for this time period? We go to...
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mandy harmon
harmonmandy
Mar 11, 2004 3:18 am
That explains it- thanks Hannah just started her cycle. I am amazed at the wonderful hormone fun we have! Mandy ... ...
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Michelle Fredieu
michellefredieu
Mar 10, 2004 5:24 pm
Cally suffers from migraine headaches usually during her cycle. I have the same problems. I have had menstral migraines for years. That is usually the only...
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mandy harmon
harmonmandy
Mar 10, 2004 5:44 am
Why do they think the migraine headaches are not related? I was also told that many moya moya patients have migraines even after surgeries. Just curious. ...
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mandy harmon
harmonmandy
Mar 10, 2004 5:41 am
Yes, any time Hannah blows up a balloon, blows a small instrument, etc she gets a headache. Sometimes TIA symptoms. We try not to allow her to blow anything....
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Michelle Fredieu
michellefredieu
Mar 10, 2004 4:02 am
No. Cally doesn't see her doctor regularly. She has seen her neurologist since her surgery for unrelated migraine headaches. She does take a baby aspirin...
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dareinhart@...
dareinhart
Mar 10, 2004 3:46 am
Hey everybody. My daughter's diseased arteries have also gotten worse over the years since her surgery, but the new vessels are doing well. As far as blowing...
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RGrace5@...
mg12061
Mar 10, 2004 2:13 am
Dr.Scott has always warned us of the dangers of Hyperventilation (or Overbreathing) and Dehydration right from the beginning. I even worry a bit if Kahtleen is...
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Michelle Fredieu
michellefredieu
Mar 10, 2004 1:23 am
Dear Jane, My name is Michelle Fredieu. My daughter Cally had both sides done 3 years ago when she was 10. We had her surgery done in Houston Texas. Her...
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Nancy McStravick
nancymcstravick
Mar 9, 2004 11:16 pm
Thanks Rena & Mary, Good to know but scary............ ... _________________________________________________________________ Express yourself with cool new...
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Rena
oneofakindco
Mar 9, 2004 11:12 pm
Nancy, A few months after my son's surgery we had his birthday. When he blew out the candles he has a seziure, his first. He had a stroke that lead us to the...
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RGrace5@...
mg12061
Mar 9, 2004 10:56 pm
Jane, My daughter was diagnosed 2 yrs ago.She had surgery on both sides.At the time of surgery she was having strokes very close together and more severe.She...
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Nancy McStravick
nancymcstravick
Mar 9, 2004 10:46 pm
My two and a half year old daughter, Emily was playing the Harmonica this evening and suddenly started holding her head,crying & saying "naughty toy". This...
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Nancy McStravick
nancymcstravick
Mar 9, 2004 10:19 pm
Hi Jane, This is Nancy McStravick - also from the UK. We have been aware that MoyaMoya is progressive but I suppose we hope the surgery will suffice. Emily is...
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dmvcpa_drogers
Mar 9, 2004 9:55 pm
Jane, My son is 5, will be 6 in May. He was just Dx'ed last week. We go see our neurologist next Monday, and I will ask him about this. I am interested to know...
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mandy harmon
harmonmandy
Mar 9, 2004 9:54 pm
We were told from the beginning it is a progressive disease. I would possible suggest sending scans to Dr. Scott in Boston. I dont think I would wait a few...
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ginger090177
Mar 9, 2004 8:52 pm
Hello My names Jane Ive wrote before. My daughter Chloe has Moya Moya she was diagnosed when she was 1. She has had surgery on both sides when she was 1 1/2...
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RGrace5@...
mg12061
Mar 8, 2004 8:57 pm
Danette, I think you also asked what kinds of questions to ask the surgeon.Probably the biggest question for the neurosurgeon is, have they performed this ...
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RGrace5@...
mg12061
Mar 8, 2004 8:53 pm
Danette, Kathleen was diagnosed Jan.2002.She was four yrs. old(almost 5).She had surgeries at Boston Children's Hospital with Dr.Scott in April 2002.(have you...
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dmvcpa_drogers
Mar 8, 2004 6:21 pm
Mary Grace, Thank you for your reply. I have tons of questions, so I will try to write some down to ask you. We go see our neurologist next Monday, the 15th...
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RGrace5@...
mg12061
Mar 8, 2004 3:31 pm
Danette, AS you know you are very lucky to have gotten a diagnosis before any strokes or TIA's. My daughter was diagnosed 2 yrs. ago and had 2 surgeries, but...
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RGrace5@...
mg12061
Mar 8, 2004 3:29 pm
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Rena
oneofakindco
Mar 4, 2004 6:50 pm
Danette, Tyler couldn't wear his glasses for about 2 weeks after his second surgery. We tried bending the frames but Tyler had alot of swelling, his temples...
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dmvcpa_drogers
Mar 4, 2004 4:06 pm
Rena, Thank you for your reply. Austin in 5, and will be 6 in May. I am very glad we found out about Moya Moya this soon too. All of his doctors are amazed,...
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Rena
oneofakindco
Mar 4, 2004 1:57 am
Danette, How lucky to have a dx so early. I don't know how old Austin is, but as I have learned all children have about the same response to surgery. They look...
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dmvcpa_drogers
Mar 3, 2004 11:59 pm
Good evening. My name is Danette and my son, Austin was diagnosed today. We had an MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it out. So...
