migraines have been reported as a symptom. I know in adults moya moya can cause aunirisims. I was told with my child that blindness was rare with it. Do you...
353
mdkempes@...
mdkempes
Feb 15, 2004 1:08 am
I am not aware of any pain aside from headaches. Why don't you email Dr. Scott in Boston and ask him....even though he is a pediatric specialist, he could ...
354
Ginny McCarthy
xiaoming54
Feb 28, 2004 2:30 am
For those who don't know, Children's Hospital in Boston is having its 2nd "Miles for Miracles" fundraiser in June. It is a pledge walk and a celebration of...
355
marlew47
Feb 28, 2004 9:52 am
My 15 month old daughter just had two surgeries with Dr. Scott at CHB. We were there from Florida for 20 days. If anyone would like to read about our...
356
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...
357
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...
358
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,...
359
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...
360
RGrace5@...
mg12061
Mar 8, 2004 3:29 pm
361
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...
362
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...
363
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...
364
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 ...
365
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...
366
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...
367
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...
368
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...
369
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...
370
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...
371
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...
372
Nancy McStravick
nancymcstravick
Mar 9, 2004 11:16 pm
Thanks Rena & Mary, Good to know but scary............ ... _________________________________________________________________ Express yourself with cool new...
373
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...
374
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...
375
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...
376
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...
377
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....
378
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. ...
379
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...
380
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 ... ...
381
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...
