Whew, school finally started.... I am new to the yahoo group, but many of you already know me from conferences, and I'm proud to be the Secretary/Editor for...
Hello Lori- Glad you've joined the group.;-) I have a 14 yr old daughter, Courtney, who has Jacobsen. She just had a heart transplant in Dec. 05 and is...
Kyauburn1@...
Sep 2, 2006 4:50 pm
28
11q families -- My name is Gretchen Warren (VP, 11Q Research) Morgan, who will be 12 in November, also went through and sometimes still does pinch. We try to...
Gretchenwarren@...
Sep 3, 2006 5:30 pm
29
Hi list members, My name is Mary Stoner and I am the proud grandmother of 9 grandchildren. My husband and I live in Galesville, Wisconsin-------kind of between...
Hi Rich and I found out one year ago our daughter CArolyn has Jacobsens Syndrome. CArolyn will be 14 at the end if this month. she is currently starting 8th...
Syretz Family
syretz@...
Sep 5, 2006 6:07 pm
31
I wish that I had some answers, but I don't. Zachary (5) has recently started to have some major outbursts and they are always towards me, epecially when we...
When friends and family ask me how the San Diego conference in June went, I have to tell them that Erik was the worst behaved kiddo there...he had both...
First let me say thank you--I hope this discussion will continue and more families will give input. I must say it is upsetting, comforting and also humorous...
Syretz Family
syretz@...
Sep 6, 2006 1:33 pm
34
Hi everyone :) Just an update for our trip to Maryland for the research. Cody and I will be flying out on the 15th of Oct. and coming back on the 20th. The...
Hey Linzee, Could you please go and remove the database that I messed up... it is the 1 that says laura Wait - Codys mom. Thank you! I tried to delete it...
Another mom of an 11q child is looking for someone whose child sees a developmental therapist that might be willing to share some ideas and things that have...
I was wondering if anyone else has had any success with any of the ADD meds with their 11q child. Brayden has about a 5 second attention span and is...
Linzee- Courtney tried several meds. and all they did was--- remove her personality. When she came down from the meds, she would get so moody. The ...
Kyauburn1@...
Oct 10, 2006 6:17 pm
39
... Hi Linzee - Erik was on methylphenidate (generic Ritalin) for several years. His dose was 25mg/day - 10mg at breakfast, 10mg at lunch, and 5mg in afternoon...
Linzee, We tried Ritalin for only a short time. At first the teachers thought they noticed a difference -- but I think it was just that she was more laid...
Gretchenwarren@...
Oct 11, 2006 5:54 pm
41
I choose to not put Cody on any meds.. I have noticed the older Cody gets the better his attention gets. Last year we could not get Cody to sit in a chair at...
Hello all :) The trip to Maryland - NIH was a great informational trip. I came back feeling like the smartest mom on earth! This is where they are at in the...
Laura- Fantastic! The best thing a parent can do is learn as much as possible. If you don't know, you can't help. I'm glad they treated Cody well. It...
Kyauburn1@...
Nov 20, 2006 2:14 pm
44
Hi.....my name is Marisa Feeley. I live in Dacula, GA with my husband and 3 boys. My youngest son, Noah, was born on March 27 06. He is 8 months old now. He...
Hi Marisa, My son Daniel is now 3 and a half years old. He was born with trigonocephaly and we had the condition surgically corrected when he was 6 months old....
Hi Rick Thank you for your reply. Are you from this area? I was wondering who did the surgery. You mention that surgery was not an option. This is something I...
Hi Marisa, I live in the Detroit area in Michigan. Daniel's surgery was performed by Dr Roselle at Children's Hospital in Detroit. She is the head of the ...
Hello Marisa- I'm Sarah and my daughter is a Jacobsen Child. I wanted to put my 2 cents worth in this conversation due to the platelet issue. Have the...
Kyauburn1@...
Nov 30, 2006 12:17 am
49
Marisa, Brayden had the head surgery when he was 8 months old. We had to wait until his platelets were at 60,000. And then he had platlets given throughout...
In a message dated 12/27/2006 3:37:29 PM Central Standard Time, linzee_carroll@... writes: I just wanted to wish y'all a happy and HEALTHY new year! ...
HAPPY HOLIDAYS TO YOU GUYS TOO! MISS YOU! CAROLYN AND STELL AND RICH ... From: linzee_carroll<mailto:linzee_carroll@...> To:...
Syretz Family
syretz@...
Dec 28, 2006 1:23 am
53
Good morning everyone and Happy Holiday's. Recently we have noticed that our 3 and a half year old son Daniel has started to act out when frustrated. Daniel...
We can definately relate! My older son Brayden (amlost 8) will still hit his head and roll around on the ground throwing tantrums when he is upset or gets in...
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