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...
My son Daniel is 4 and still bites, but it is slacking off in frequency. He mostly does it out of frustration. Another thing that he does is hit himself in the...
I agree, I think it is from a frustation from the lack of communication. Matthew will scratch when he gets mad. He is not really a bitter, but will every once...
Redirection does not always work with Nathan either although that is my first way of trying to deal with it when he becomes aggressive. Secondly I will massage...
Faith, now 3 yrs old, has Hyoplastic Left Heart Syndrome. She has gone thru the Norwood and the Glenn and will have the Fontan sometime in the next year. The...
In a message dated 8/24/2007 9:16:34 AM Central Daylight Time, msreckless_1@... writes: Nathan has an enlarged heart and a prolapsed valve. From what I...
I have 3 grandsons that have 11q deletion and none of them have had any heart problems. Their ages are 6, 11, and 13. Of course, they do not have JS either....
In a message dated 8/25/2007 8:17:03 AM Central Daylight Time, SANDYCST1@... writes: Hi Mary Beth: I am a little confused. I thought 11q deletion was J.S....
Nathan has an 11Q- as well but does not have JS. It is very confusing. An 11Q- is more rare then JS but JS is the closest syndrome that doctors have to...
I was wondering if anyone else had any experiences with bowel problems. Faith, 3 yrs, is so inconsistent with her bowel movements. Sometimes she will go 3...
Jeremy, Inconsistance in bowel movements with my son Nathan,5, is a nightmare. It is better now but we still struggle as well. Is she ripping and making it...
This seems to be a never ending problem with our kids. We can't seem to get any regulation. Brayden is much worse than Zach, but they are both on Miralax...
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