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Jacobsens Syndrome Survey   Message List  
Reply | Forward Message #833 of 975 |
Re: [11q_disorders] Jacobsens Syndrome Survey

Hi Erin,
Ayah doesn't have any behavioral problems, but you can add seizures to the list. They just started this week. :( Thankfully, they're really mild. Her left side just tenses up and her arm and leg swing out to the side.
-Kristen
 
 

 
On Thu, Jun 4, 2009 at 6:53 PM, Erin <erinkewer@...> wrote:


I know some of you have filled out the survey for me before. But I added another question to it. I am also looking for questions that you might want me to add to the survey also. I moved the website to another host. If you have not done the survey yet and want to here are the questions.

-How old is your Jacobsen's Syndrome Child now?
-Does your child have any other deletions or duplications?
-When were they diagnosed with Jacobsen's Syndrome?
-What are some of the medical problems your child has?
-Any surgeries done?
-What are some learning disabilities your child has?
-What were some of the complications at birth?
-How early was your child born? weight?
-Length of stay in hospital?

NEW QUESTION:
-Any Behavioral Problems?

You can just send me the answer to the new question and I will add it to the survey you already sent.

Also i just added 2 more of Dr. Grossfeld's papers to the site. Its under resources and its the last 2 buttons on the page.

Also here is the new sites address. Im trying to get it shortened. if anyone has anything else that they want me to add let me know.

http://jacobsenssyndromeawareness.moonfruit.com

Erin




Sat Jun 6, 2009 3:06 pm

fleecybeast
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Message #833 of 975 |
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I know some of you have filled out the survey for me before. But I added another question to it. I am also looking for questions that you might want me to add...
Erin
mommy2lissa
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Jun 6, 2009
1:39 pm

Hi Erin, Ayah doesn't have any behavioral problems, but you can add seizures to the list. They just started this week. :( Thankfully, they're really mild. Her ...
Kristen Haley
fleecybeast
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Jun 6, 2009
6:03 pm

Matthew has major behavioral problems and it is so frustrating! Out of the blue, he cries for no reason at all, throws tantrums and disobeys frequently. He...
Tina Martin
tinaberry80
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Jun 6, 2009
6:04 pm

Faith also acts out on occasions.  When she does it definitely is pronounced with Jana and I.  I don't have any other kids but therapist we talk to said that...
Jeremy Pyle
dad_11q
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Jun 9, 2009
1:47 am

Has anyone done baby signs with their kids? I only know a few signs so far, but Ayah seems to be picking them up fairly well. I was even considering full ASL...
Kristen Haley
fleecybeast
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Jun 10, 2009
1:17 pm

Hi everyone, Boy where do I start with Nick's behaviors. He bites, pinches and hits when he doesn't get his way or we don't understand what he is saying. It is...
joan romig
romigt
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Jun 10, 2009
6:16 pm

Hi Kristen. My daughter Bella is 7 and she is finally picking up sign and language. I got the baby signs and it helped me to learn and teach her. Bella has a...
Andrea
singhbella
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Jun 13, 2009
11:59 pm

Brayden and Zachary both have fairly major behavioral issues. And they only have them at home--not at school or with grandma and grandpa, etc. They pinch...
linzee_carroll
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Jun 10, 2009
6:29 pm

Tina----I think we are talking about Olivia too. She is the same exact way. She is horrible at home but fine when other people have her or at speech. She...
Erin
mommy2lissa
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Jun 6, 2009
11:18 pm

Unfortantly the behavior problem seems to come with it. Grace has had prblems since she was little. The biggest problem they do grow and eventully are your...
Peggy St.Clair
thesqaw
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Jun 6, 2009
11:18 pm

Daniel (who is 6 now) does have tantrums when he gets thing taken away or when he is told "No". For the most part, they are pretty mild and can be controlled...
Rick Poll
jldpoll
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Jun 9, 2009
1:44 am

we use baby signing time. great videos From: Kristen Haley Sent: Monday, June 08, 2009 11:17 PM To: 11q_disorders@yahoogroups.com Subject: Re: [11q_disorders]...
Erin
mommy2lissa
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Jun 10, 2009
6:16 pm

This is what everyone is here for .Vent if you need to.Grace hates thunder.She was up at 1AM because we had a thunder storm.She was still awake at 4. I...
Peggy St.Clair
thesqaw
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Jun 13, 2009
11:58 pm

Alexandra wakes up every hour to drink milk or to get me to come to bed with her. It takes hours to put her to bed. Even if she is tired she will kick and play...
dalia421
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Aug 5, 2009
9:34 pm

HA, Nick is a big one for that. When i can finally get him to go to bed for me, he will sit on his bed and make noise, talk to himself, things like that. And...
joan romig
romigt
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Aug 6, 2009
11:35 am

Was he always like that? As a baby/toddler? ________________________________ From: joan romig <joanmomofnick@...> To: 11q_disorders@yahoogroups.com Sent:...
Jana Wells
janabananablue
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Aug 6, 2009
6:12 pm

We turn a movie on in Grace's room and fix her drink  for her to lay their and get comfortable. She sleeps in a hospital bed so we have rails. 20 yrs ago the...
Peggy St.Clair
thesqaw
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Aug 6, 2009
6:13 pm

Thanks for the vibes, I am sending some to you too.  Alexandra slept better as a newborn. She has not taken a nap since she was at least 2 y/o she is 5 now. ...
Dalia S.
dalia421
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Aug 6, 2009
6:14 pm

Hi, Its the same with the misbehave, with Daniela 6 years old, she does same when we punish her or spank her she thinks thats a game or something becuse she...
gabriela
gabriela.maz...
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Aug 6, 2009
11:36 am

Here is the site for the herbs for tantrums http://www.manataka.org/page960.html Peggy ... From: gabriela <gabriela.mazariegos@...> Subject:...
Peggy St.Clair
thesqaw
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Aug 6, 2009
6:13 pm

Alex is in her room with her sisters so I have been asking them to help her stay in the bed and go to sleep. I wonder what kind of discipline would work....
Dalia S.
dalia421
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Aug 6, 2009
6:14 pm

We will be starting Grace on Depakote for anger issues as soon as the heart dr gives the ok. The more the dr looked into it the more it seemed a great fix. ...
Peggy St.Clair
thesqaw
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Jun 13, 2009
11:59 pm

Nathan started signing when he was 2. He is now 6 1/2 and stubborn so I have to remind him to use his words. As far as verbal, he is non-verbal and can only...
Ms Reckless
msreckless_1
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Jun 13, 2009
11:59 pm

Is there a new site address? I can't seem to get this one to come up....
Lisa Worden
lworden31
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Aug 20, 2009
5:20 pm

Yes im working on the site it will be up soon From: Lisa Worden Sent: Tuesday, August 18, 2009 9:04 PM To: 11q_disorders@yahoogroups.com Subject:...
Erin
mommy2lissa
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Aug 21, 2009
8:56 pm

DOES ANYONE KNOW?AN 11Q CHILD NAMED AUSTIN IN THE HOUSTON AREA??MY GRANDDAUGHTER'S TEACHER INFORMED US THAT HE HAS TAUGHT AUSTIN IN THE PAST AND WE WOULD LIKE...
SANDYCST1@...
th156498
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Sep 23, 2009
3:39 am

They might not be able to give you the address of this family due to  Hippa Law but ask if they have an address and they will mail this person requesting they...
Peggy St.Clair
thesqaw
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Sep 23, 2009
3:00 pm

www.jacobsenssyndromeawareness.com is up and running again. Let me know if there is anything you want added or like to see on the site....
Erin
mommy2lissa
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Sep 24, 2009
3:26 am

Its back up and running. I will be doing redesign to the site this week. Please let me know if there is anything you would like to see on the site that is not...
Erin
mommy2lissa
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Sep 20, 2009
2:26 am
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