You should contact a social worker at the hospital that's what they are there for. We have a great one at Children's Hospital of Philadelphia My 4 year old...
736
pmteet@...
pmteet
May 16, 2006 2:15 pm
That TICKS me off. FInd another doctor! Any doctor that would say that is not worth much!!! Look a CTF.org for a good NF clinic, click on find a doctor. It...
737
ilovemybulldog@...
englishbulld...
May 16, 2006 3:26 pm
Also.. now that I have calmed down ( your story with your daughter's daughter infuriated me) I went and looked at the moyamoya.com site where I got most of my...
738
tlbusam@...
tlmej
May 16, 2006 11:00 pm
739
jnokes5
May 17, 2006 4:47 am
I just read a post on the moyamoya.com website about a person from Tennessee who was diagnosed at the same hospital that my daughter is at now.The doctor that...
740
ilovemybulldog@...
englishbulld...
May 17, 2006 4:57 am
Print out the post and walk into his office and ask him WHY if he did this for another patient.. then what is the problem... if that doesn't work.. go to the...
741
jnokes5
May 25, 2006 3:47 am
Paige's case was denied today by her insurance.We are planning on appealing this decision but it is beginning to look as if we won't have any luck.We haven't...
742
Kevin Cave
kevin_c86
May 25, 2006 10:23 am
You need to have a social worker from the hospital help. Your daughter is eligible for social security benefits also because of her condition. The federal...
743
Stacy
stacy_girl2001
May 26, 2006 10:06 pm
My beloved niece was diagnosed with Moyamoya yesterday she is currently at Sutter Memorial Hospital and we are just waiting to see where we go from here. This...
744
Rena
oneofakindco
May 26, 2006 10:25 pm
Check out www.moyamoya.com and feel free to ask any questions you have. The surgery is the only way to correct Moyamoya, but it is a problem your niece will...
745
Stacy
stacy_girl2001
May 26, 2006 10:41 pm
with the surgery then will it stop the strokes? Will this problem come back? ... have. The surgery is the only way to correct Moyamoya, but it is a problem...
746
Rena
oneofakindco
May 27, 2006 2:05 am
The strokes will stop, very few people have a reacurrance, but it is possible. Please check out the site moyamoya.com it really will give you a lot of answers...
747
tlbusam@...
tlmej
May 27, 2006 9:08 pm
Stacy, Our Daughter Mallory who was five years old at the time was diagnosed with Moyamoya in May of 2005. We didn't know anything about this disease so we...
748
Cheryl in NM
luvfunparenting
Jun 1, 2006 4:25 am
I have been meaning to bring this topic up - even though I rarely check this site these days. Our son had a stroke this past January, and was diagnosed with ...
749
Cheryl in NM
luvfunparenting
Jun 1, 2006 4:29 am
OOPs! Sorry about that gang! I clicked on the wrong group and posted this here! I meant to post it to my China Adoption group! Ah well, at least you all now...
750
tlbusam@...
tlmej
Jun 1, 2006 10:30 pm
Cheryl, My name is Tom Busam from Alexandria,Ky. I'm not sure if I am the one you wanted to talk to....
751
mandy harmon
harmonmandy
Jun 14, 2006 4:52 pm
does your daughter have any other medical issues besides moya moya? Mandy ... _________________________________________________________________ Don’t just...
752
jnokes5
Jun 20, 2006 4:48 am
It's been awhile since I have posted a message but it has been crazy here.Paige had a check up at St.Jude's this past week and while there,we met with a...
753
Jillayne MacInnes
sca4gold2002
Jun 20, 2006 12:45 pm
Dear Jennifer, I am so glad that things are moving forward and that you've found a surgeon you're comfortable with. Please keep us posted, o.k.? You and...
754
Ginny McCarthy
xiaoming54
Jul 21, 2006 12:54 am
Has anyone ever purchased the abstract that the National Organization of Rare Disorders has that describes moya moya? http://www.rarediseases.org Just...
755
alexis-sabry495@...
Jul 24, 2006 7:57 pm
Free Ipod Nano, choose your favourite color http://www.bobwakernn.com/fpozot...
756
alexis-sabry495@...
Jul 25, 2006 3:28 pm
I just got my Ipod and it's sick. Putting all my music on it now than im going to go for a short jogg. Cant believe it didn't cost me a thing thanks to these...
757
ilovemybulldog@...
englishbulld...
Sep 11, 2006 5:09 pm
Hi everyone.. have not written since moving.. all is well here.. although devasting news... I found out today, after a three year search for my brother,, that...
762
jppkrn
Dec 3, 2006 1:33 am
My Little girl Bailey is 3 years old and we just found out that she has moyamoya. On nov 9th she fell off a chair at around 8am she acted just fine all of...
766
ilovemybulldog@...
englishbulld...
Dec 6, 2006 11:13 am
We appear to be getting quite a bit of the spam for singles... what's up with that? Sara [Non-text portions of this message have been removed]...
767
ilovemybulldog@...
englishbulld...
Dec 6, 2006 12:17 pm
I am so sorry you and your family has gone through this, but glad that you found the group! How is your daughter doing? Did they do a direct or indirect bypass...
768
Amanda Harmon
harmonmandy
Dec 6, 2006 4:34 pm
Does anyone know how to stop the recent spam? By the way how are everyone's kids doing? Mandy...
769
ilovemybulldog@...
englishbulld...
Dec 7, 2006 1:28 pm
Leader Pub Home Leader Pub Home Niles Star Niles Star Dowagiac News Dowagiac News Cassopolis Vigilant Cassopolis Vigilant Edwardsburg Argus Edwardsburg Argus...
770
Linda
iwannascubadive
Dec 7, 2006 4:26 pm
Hi my name is Linda I live in Florida and my Neice was Diagnosed 9 years ago with moya moya....
771
ilovemybulldog@...
englishbulld...
Dec 7, 2006 6:47 pm
Hi Linda! Welcome! My name is Sara..Has your neice had the bypass surgeries yet? Where is she in her treatment? I have a son and a brother that has moyamoya....
