Here's a new question for the week. Janna's post about crianosacral therapy got me thinking about how many kinds of therapy options are out there--I have...
... hippo ... etc.) ... Both of my boys have been involved in hippo therapy (PT on horses) and both of them have seen great benefits from it--in fact Brayden ...
I just got great news in the mail today. I got word that the 11q Research and Resource Group's application for tax exempt status has been approved by the irs!...
Yay!! It's been a long time coming. Congratulations -- it was your follow-up!! ************************************** AOL now offers free email to everyone....
Gretchenwarren@...
Mar 18, 2007 8:43 pm
114
Hello I am Dakota mother of 2 1/2 year old Laci. Shortly after she was born she started having problems with constipation, the Dr. put her on meralax, which...
In a message dated 3/22/2007 8:13:34 AM Central Daylight Time, dakotabaumann@... writes: If this problem usual is a ongoing problem or if it may come and...
Hello, this is Nathan's mom. Nathan was diagnosed with a syndrome known as Hirshsprungs Disease. Simply put the cells that tell your intestines to squish are...
Both of my 11q boys have constipation issues, but it is much worse for my older one. He is on adult doses of Miralax and mineral oil, and still sometimes will...
We are currently going through some testing for my son, James "Matthew", for the Hirshsprungs Disease also. The last biopsy that they did was inconclusive...
Carolyn is 14 and has had this problem on and off. She takes perdiem (over the counter) daily and stills gets to the point we have to do more She saw a...
Syretz Family
syretz@...
Mar 26, 2007 3:36 pm
120
Faith also 2 1\2 years has also had problems off and on. We had started on lactalous which is a stool softener and that worked for a time and then we...
Angela, High again. Nathan was diagonsed when he was 3 days old with the Hirshsprungs. He to was put to sleep to undergo the surgical procedure to determine...
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...
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