Dear Dave: You are really fortunate to have such a school so close to home. Where I live we have a 10 hour drive to the nearest one. We obviously have not...
Hi this is Dave again,Ashleys dad. Thank you so much for the words of support. Yes, it is a hard decision but it is for Ashley and her future. Where do u live?...
MANEEXP@...
May 1, 2004 5:13 pm
3119
I just made a discovery last night that I have been wondering about for a year. Elie was up all night with a croupy cough and just as she would start to dose...
Jennie's legs can lock straight up when she is laying down or sitting in her wheelchair. We consider this Dystonia. I have learned that wherever she is hit...
Marcia, That is really interesting. There have been times that I have applied pressure to her shoulder when her shoulder and ear lock together and it seems I...
Hi! Everyone, This is Michelle Cusimano, Nicole's mom. I haven't written in a while but I been reading the messages regularly. I was just wondering if anyone...
Hi Michelle, We set up a special needs trust, redid our wills and set up powers of attorneya nd health proxies. Typically you fund the SNT with whole life...
Hi Kathy: Leslie was l5 years when she went into the centre. They then closed the centre and integrated all, or most of the residents into the community to ...
Lynda Burnham
lynda.burnham@...
May 5, 2004 1:36 pm
3125
Michelle, We set up a Supplemental Needs Trust for our daughter a few years ago. We moved any savings account she had to this trust and the trust can be named...
Michelle, You can check with the law society to find a lawyer that specializes or has experience with special needs trusts. Carol ... From: Marcia Perkins...
Hi Claire here. I just joined today. I live in New Zealand and I have ahc. I am 19 years old and I would like to hear from anyone else with this condition....
HI MY NAME IS EMILY I AM 12 YEARS OLD I LIVE IN NEW YORK UNTIL 6/04 WHEN I WILL BE MOVING TO FLORIDA,CAPE CORAL I HAVE AHC TOO. I GO TO JOHN JAY MIDDLE...
Hi Rebecca, this is Karen, mom of Trevor who is 5y/o. He has had low tone, hypotonia since birth and also what I refer to as very crunchy joints. This is...
... Hi! My name is Lizzie. I also have ahc and live in England. I am 20 years old and would be interested to hear from anybody also with this condition. i love...
suek12000 <kempmichael@...> wrote:--- In afha@yahoogroups.com, "clairebear2222000" ... Hi! My name is Lizzie. I also have ahc and live in England. I am...
Hi all, Well Ashley is 14,Ive been reading all of the stories about joints and there problems. When the muscle tone is low everything occurs, its not a joint...
MANEEXP@...
May 12, 2004 3:06 pm
3133
I certainly recognize the crunchiness, she has it in her shoulders real bad. But with her it is always there whether she's doing well or not. My pediatrician...
Hi, your doctors should read all of the information about the medications other kids are on and consult with doctors who have some idea about this disorder....
MANEEXP@...
May 12, 2004 7:00 pm
3135
I do still think AHC fits the most with her than anything else. But, one of the neurologists is a leading specialist on AHC and he said because her nystagmus...
Hi, this is Dave Ashley's Dad, she is 15. Throughout her life I have scene the words come and go from her speach.At times after a spell she speaks better that...
MANEEXP@...
May 13, 2004 3:54 pm
3137
Hi, Emily is 12 now, she had one eye or the other pulling inward on a pretty consistent basis it would worsen on the side the episode was on. She also has...
Hi Rebecca, I am trying to remeber back a few years but I believe when Trevor was younger we would see the crunchy joints a lot more. Even now in a bad week...
Hi, Karen This is Jennifer, Alaina's mom. We are getting serious about potty training this summer. How old is Trevor again? Alaina turned 4 years old in...
Hi Jennifer, Trevor just turned 5, he also has dry diapers at night but otherwise is showing no interest other than telling me I should go to the potty or...
HI ALL, Emily was also ready at about two then regressed and started interest again about 4, and finally around 5 she was in panties full time with occasional ...
Hello everybody Claire here. Just a few lines to tell you more about me. I first got AHC when I was 2 years old. When I was younger I had 'floppy' attacks on...
Hi everyone, I also am in need of help with the potty issues. Jocelyn used to sit on the potty and went acouple times a yr ago. Now she doesn't want to sit...
Heather, We have a handicap grip bar on the wall next to the toilets, and a small stool so she could step up holding on and we used those padded one piece ...
Heather, Emily just reminded me of something we used to do when she was younger, we used to read books while we were waiting, we used to sing the "potty song" ...
Hi All, thanks for your responses. Is there anyone out there with a boy who is having problems. The toddler potty chair is to small, the one that attaches...
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