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...
I would love to find others in the Maryland Area with JS kids. Its hard finding people that are close due to the fact that JS is rare. Is there a database...
Jeremy, Daniel was on Pediasure with Fiber for the first 3 years. When we took him off the fiber and tried the regular Pediasure, he would get constipated. I...
I love looking at pictures of JS kids. I saw all of the beautiful kids in the yahoo group folder. I just added some pictures of my Olivia.... Have a great day...
Thanks for sharing pictures of Olivia. She is very sweet. I don't know what it is with JS and red heads, but there seem to be a lot of them! I love seeing...
Faith's tear is right on the outer rim. The GI doctors have told us there is no other problems with her track. They have told us that it is due to the low...
Erin, I am not sure where you are - we live just south of Manassas VA - our daughter CArolyn will be 15 in Sept and has JS- I have been out of town due to a...
Syretz Family
syretz@...
Aug 31, 2007 7:40 pm
169
Altho we have a similar problem - it has not gotten as severe - Carolyn takes 2 Perdiem daily-Her orthopedic surgeon told us about this a few years back - we...
Syretz Family
syretz@...
Aug 31, 2007 7:41 pm
170
LINZEE, DID YOU GET MY E MAIL ABOUT SENDING ME A DONATION LETTER? THANKS, SANDY (JADE'S GRANDMOTHER) ************************************** Get a sneak peek of...
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