... also has another genetic disorder that is rare with moya moya. Dr. Scott answered all my questions with the anest. when we were going to another hospital....
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pmteet@...
pmteet
Oct 18, 2002 3:23 pm
She has ... are you ready.....Neurofibromatosis. NF1 for short. As do I and my son. My oldest does not. What other disorder does your child have? Michelle ...
106
djkrn2000
Oct 19, 2002 1:01 am
... Mandy- We found out about Geoff's moyamoya on January 21, 2000. He bagan having TIA"s in September or October of '99, but at first it was just assumed to...
107
djkrn2000
Oct 19, 2002 1:16 am
... anything special ... have it done ... week. ... has already ... arterialgram ... already had ... Our 14 year old son had 2 surgeries, two years ago and we...
108
djkrn2000
Oct 19, 2002 1:24 am
... Thanks for the answers. I too even become paranoid at times about myself. I have migraines and it makes me worry. I watch my kids always. And Geoff...
109
djkrn2000
Nov 10, 2002 5:42 pm
Geoff had a TIA/stroke last week that affected only his right hand, but it has been two years since his surgeries and a year since his last TIA. He still has...
110
dareinhart@...
dareinhart
Nov 11, 2002 6:29 am
-Debbie, sorry about Geoff's TIA/stroke. I hope it resolves soon. Unfortunately, Maddie still has TIA's. They only happy when she hyperventilates. On Friday...
111
djkrn2000
Nov 11, 2002 6:27 pm
-Denyse: Thanks for responding. He wasn't doing anything strenuous, but he had been in the hospital for an asthma flareup about 3 weeks ago, and he was...
112
harmonmandy
Nov 12, 2002 3:35 am
--Hannah just started this week complaining of numbess in her right leg. It has also been 2 years since surgery. We go to the neurologist wed. I have...
113
Rhonda Gasiorowski
lovemom355044
Nov 12, 2002 8:17 am
Debbie, This may not be the same, but my 9 yr. old daughter had a stroke in May, days after her second surgery. She now has aphasia, rt hemi, cognitive skills...
114
harmonmandy
Nov 12, 2002 2:28 pm
... In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski" ... stroke in May, days after her second surgery. ... and we are having MAJOR behavior...
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djkrn2000
Nov 12, 2002 11:02 pm
I knew that the risk was pretty high right after surgery, but I thought we were doing so well....it was quite a shock. I just hope it comes back. Apasia is...
116
djkrn2000
Nov 12, 2002 11:09 pm
Rhonda- I know that the risks are high right after surgery, but I was hoping that we could breathe a little easier at this point, I guess not, huh? We were...
117
djkrn2000
Nov 12, 2002 11:14 pm
Mandy. I hope that these syptoms resolve. I know how scary it is. I hope it is just a passing thing. Did Hannah have any residual effects from her moyamoya?...
118
Rhonda Gasiorowski
lovemom355044
Nov 13, 2002 9:54 am
She can't speak, but words are coming back, very slowly. Of course, this causes great frustration. Rhonda [Non-text portions of this message have been...
119
leilei543
Jan 8, 2003 8:40 pm
Hello... Everything has been pretty quiet with my son. He had his one year post op anteriogram which Dr. Scott said had shown that the surgery was a success....
120
chbrigger
Jan 9, 2003 10:03 pm
Glad to hear everything has gone so well for your son. Thanks for writing. It is always nice to hear good things. I wish this group would have been around...
121
Rhonda Gasiorowski
lovemom355044
Jan 10, 2003 3:14 pm
Hello to all. My daughter, Alexa had a small stroke last Jan. which was how we found out about her Moya Moya. Her first surgery was in Jan., she did well until...
122
pmteet@...
pmteet
Jan 10, 2003 3:56 pm
Hi sorry to hear about what you are going through. My daughter has MM. She had both surgeries inn '99 without any problems. We discovered the MM after she ...
123
chbrigger
Jan 10, 2003 7:20 pm
Dear Rhonda, I have three children, the younger two with moyamoya. My youngest actually was diagnosed first, stroke at age 2 1/2. Her older brother had a TIA...
124
mikeiz12
Jan 14, 2003 1:30 am
Hi everyone I am sorry I have not written in awhile but my messages kept "bouncing"; back to me. It took some time to fix. I am glad to hear all the news. I...
125
chbrigger
Jan 14, 2003 1:41 am
This was sent on another group I am in...by a really well known DR. at NIH who is studying childhood stroke and causes. Thought I would pass is on. CNN news...
127
leilei543
Jan 14, 2003 8:01 pm
Hi Rhonda, I found out that my son had Moya Moya after months of him having severe headaches. It was very frustrating because I would take him to his doctors...
128
mg12061 <RGrace5@....
mg12061
Jan 28, 2003 10:25 pm
I have enjoyed reading all the posts so far. I though I should introduce myself.I have a daughter 5 yrs old. She was born iwth Down Syndrome, and last Jan. was...
129
djkrn2000
Jan 28, 2003 10:45 pm
... a ... has ... year. ... Mary- Glad you found us too.. It is a great place and I too didn't find it until after we went through surgery,etc. My son is Geoff...
130
mikeiz12
Jan 29, 2003 11:12 pm
Hi Mary, I echo your relief to have found this site. My son Charlie is followed by Dr. Scott too. We have found him to be an excellent Dr. So easy to...
131
Rhonda Gasiorowski
lovemom355044
Jan 30, 2003 1:41 am
Hello all, I'm the Mom of Alexa who had 2 surgeries and 2 strokes in the last year. She has aphasia and rt. hemi but is coming along slowly. Her biggest...
132
harmonmandy
Jan 30, 2003 2:12 am
... also have gone through the mood things. Her siblings did not want to be near her, sometimes it was hard to be with her. He also is 9 but closer to a...
133
dareinhart@...
dareinhart
Jan 30, 2003 1:43 pm
Rhonda, I'm so sorry Alexa is so frustrated. It must be so hard to not be able to do things that she could do before. My daughter has a few small learning ...
134
Rhonda Gasiorowski
lovemom355044
Jan 31, 2003 12:37 am
Mandy-Has the depakote had any side effects? What is Williams Syndrome? How is she doing in school? Has she had seizures? Sorry for all the questions, I want...
