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...
135
harmonmandy
Jan 31, 2003 12:45 am
... Syndrome? How is she doing in school? Has she had seizures? Sorry for all the questions, I want to talk to you too! Rhonda...
136
maggie241015 <aeas...
maggie241015
Feb 2, 2003 9:20 pm
I read mostly about younger kids being diagnosed with MM. My daughter was diagnosed at age 12 two years ago, and had two surgeries. If anyone needs support...
137
RGrace5@...
mg12061
Feb 3, 2003 1:29 am
Thats great your daughter is doing well.Has she had any strokes since her surgery? Or any headaches? My daughter is 9 months post surgery and has had no new...
138
djkrn2000
Feb 3, 2003 3:01 pm
... Maggie- My son was also diagnosed at the age of twelve two years ago. His anniversary of his surgeries are this week coming up. How has your daughter...
139
dareinhart@...
dareinhart
Feb 3, 2003 5:47 pm
Mary, not sure which daughter you're referring to, but I'll put in my two cents. Maddie has not had any more strokes since surgery. She does still have TIAs,...
140
Anne Eason
maggie241015
Feb 18, 2003 1:50 am
Thanks for your reply. I'm glad to say my daughter is doing fine. We too, are at about a two year mark from the surgery. Hers was done at Children's...
141
oneofakindco
Mar 25, 2003 3:52 am
Hi, I found this site through DJ's site moyamoya.com. My 11-year-old son, Tyler, was recently thought to have Moya Moya. He was born with mild Cerebral Palsy,...
142
oneofakindco
Mar 25, 2003 2:38 pm
Dr. Steinberg is going to look at Tylers test. Wish us luck!...
143
mandy harmon
harmonmandy
Mar 25, 2003 4:38 pm
Flight angel will help with flights for surgery also small airports have pilots that will fly patients free for medical reasons. Mandy Fly angel does require...
144
dareinhart@...
dareinhart
Mar 25, 2003 5:04 pm
--Glad to hear that Dr. Steinberg is going to look at your son's test results. I'm sure if you sent an e-mail to Dr. Scott at Boston Children's, he would look...
145
Rena
oneofakindco
Mar 25, 2003 5:31 pm
Mandy, Thank you for the information. Rena mandy harmon <HarmonMandy@...> wrote:Flight angel will help with flights for surgery also small airports...
146
Rhonda Gasiorowski
lovemom355044
Mar 26, 2003 12:09 am
Where is Dr. Steinberg from? Rhonda [Non-text portions of this message have been removed]...
147
RGrace5@...
mg12061
Mar 26, 2003 1:11 am
I wish you the best of luck and will keep your family in our prayers.My daughter had surgery in Boston one year ago,she was 5 at the time. Previous to that...
148
Rena
oneofakindco
Mar 26, 2003 2:36 am
Rhonda, He's in Stanford CA. There is a link to his site and email on www.moyamoya.com if you need anymore info, it's a great site and helped me alot. Rena ...
149
katdogden
Mar 28, 2003 11:58 pm
... www.moyamoya.com if you need anymore info, it's a great site and helped me alot. ... from? Rhonda ... Service. ... desktop! ... I hope all goes well...
