I would be interested to know if any other JS children have been diagnosed with Hirshsprungs. I had never heard of it before until it was mentioned here....
I thoght this was addressed at one of the conferences. I recall something about narrowing of one of the intestines making it difficult to pass the bowels....
Gretchenwarren@...
Apr 10, 2007 1:37 pm
124
Hi Linzee, I actually read about it myself, as I work in the medical profession. I made a GI appointment for Matthew & off we went. I asked the doctor why this...
Hi Linzee, Nathan did not have all the symptoms but enough of them to warrent the doctors checking to see if that is what the problem was. It can not be...
Anyone have a solution for a baby needing prescription glasses but they either are falling off constantly or not staying in place? Is there a special kind that...
Hi Marisa, We had the same problem with Cody. We found that a wire frame with a wrap around the ear worked best for him. The wire frames are light weight and...
My daughter Faith is 2 1/2 years old and we are looking into either aquatic theropy or horse back riding as a fun theropy to help her along with her muscle...
I am starting to get together ideas for speakers for the 2008 conference and thought I might ask all of you for any suggestions for topics that would be of...
My boys have done both and they both have helped. We also didn't try and do both of them at the same time either. I think they work on different areas. For...
What about someone to talk about different therapies and what they have found the different areas of therapy to help, or even alternative therapies. Or a...
Linzee, I need to put more thought into it, but I was thinking of something specifically for our adolescents. I know this depends on how many we have....
Gretchenwarren@...
May 29, 2007 6:01 pm
133
I am sorry this took so long but I have been putting alot of thought into it. I think the one thing @ the 2006 San Diego conference and @ the 2007 European...
Carolyn is 14 - will be 15 in Sept. We just found out 2 years ago that she has Jacobsens. Like all of you we have experiences so many things in so many...
Syretz Family
syretz@...
Jun 20, 2007 12:28 pm
135
I would also love to get involved. My daughter is 1 1/2 and she was diganosed at birth with JS. She is a very smart little girl. She is 6 months behind and in...
I competely agree. We will definatley still do break out groups but maybe allow more time for them this time and maybe do it a couple of different times with...
... that she has Jacobsens. Like all of you we have experiences so many things in so many different areas of CArolyn's life - physical medical problems,...
I would have to agree with Jeremy. I took alot away from the parents "outbreak session". I would pesonally like to here Amy's parents speak if at all possible...
Stell, I would like to say that you are 100% correct. There is no other child "like" Carolyn. When my son, Nathan, was diagonosed with 11Q- the doctors told...
Stell actually brought up a good topic too with insurance struggles and what about other possible organizations that might help our children. We actually are...
Due to great conflict with our public school system over what is an appropriate placement and services for Carolyn- Rich and I have found a website we believe...
Syretz Family
syretz@...
Jul 8, 2007 2:33 am
142
Hi everyone, I just wanted to let you know that I set up a new email address for the 11q group that I would like to become the primary contact address fo all...
Good idea - thanks for all you do Stell ... From: linzee_carroll<mailto:linzee_carroll@...> To:...
Syretz Family
syretz@...
Jul 15, 2007 10:07 pm
144
nicole is doing good after a larengostimy lazer surgery for granulation around the trach ear tubes and abr test all done on tuseday the 21 will be seeking...
Glad to hear she is doing well. I hope she is able to get the trach out soon. Brayden has ABR's quite often with his surgeries and he seems to get a...
My daughter is 20 months and is very aggressive. Are anyone else's JS babies aggressive? Her teacher said that it probably comes with the syndrome. She is a...
Faith does the biting and pinching also, mostly when she doesn't feel well. From what we have learned of the syndrome they are not aggressive, but it is...
I have to agree with Jana. Nathan does not bite but headbutts. All of his therepist think it is a sensory need. He does not headbutt as often now that he signs...
Like Jana said, Faith is a biter and a pincher too but most of the time it does not seem to be out of aggression unless she doesn't feel well. With Faith, we...
My boys, Brayden and Zachary (both JS) are aggressive with each other and with us, but not with others. Brayden pinches, especially when he is frustrated....
I was thinking that I was more of a communication thing. We try to teach her signs which she knows some. She just gets really mad very fast. I try to remove...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
