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 starts school in Aug. So we shall see how she is in school.
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 also tries to bite me when he's not getting his way. People who do not know he has Jacobsen's say that it's "normal behavior" for a three yr old. Oh, and get this - he behaves very well with other people (including dad, grandma, complete strangers, etc.). It's mom who catches the brunt of the bad behavior and I'm his primary caregiver, taking him to appointments, doctoring him when he's not feeling well, feeding him, dressing him, taking him to the park...What's up with that?
From: Erin <erinkewer@live.com> To: 11q_disorders@yahoogroups.com Sent: Thursday, June 4, 2009 7:53:05 PM Subject: [11q_disorders] Jacobsens Syndrome Survey
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.
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...
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 ...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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]...
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...
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...
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...
Was he always like that? As a baby/toddler? ________________________________ From: joan romig <joanmomofnick@...> To: 11q_disorders@yahoogroups.com Sent:...
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...
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. ...
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...
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....
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. ...
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...
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...
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...
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...
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