Hi! I'm new, so I'll introduce myself. I'm Kristen, mom to 3-month- old Ayah. She was diagnosed with 11q deletion by coincidence, in a way. A skinny little...
Hello. My daughter is 3 yrs old and she is an 11 q baby. She breastfed for a yr. My daughter didn't suck that hard. Ill get back on here in a bit and give you...
Hi Kristen, I'm new to the group as well (Hello everyone!) My son Matt was diagnosed with 11q at birth. He also had a very low platelet count and has...
Tina and Kristen, Welcome to the group!! I have two boys with JS, ages 10 and 7. As for fear, they are very friendly and have never met a stranger that they...
Hi Tina and Kristen (and fellow group members of course) Â My Dylan is now 7 and has no fear of strangers when out in public he would go home with anyone who...
Hello, and welcome!!! With my daughter Laci (who is 4) it is hit or miss, she is eather very friendly or wouldnt go to you even if you payed her money! When...
Hello, My name is Angela Garcia and my 10 yo JS son, also named Matthew, has absoultly no fear of people at all. Bless his heart, my husband is from a very...
Hello. I have a LOT of questions and I am grateful to whomever created this group. When my son was diagnosed in 2005, it was hard for me to find support...
Hi Tina - Better get used to the strangers thing! I have lots of stories - none bad though. My son Erik is 22 now and there is no such thing as a stranger....
Hi Kristen - My son also had a difficult time learning to nurse. He didn't have the energy to get enough, and even using a bottle would become too tired to...
Are you kidding?! We joke that our kids have an extra friendly gene because they are all so friendly :) They will go up to anyone and make friends. I know as...
Don't forget to visit our website and share your stories on www.jacobsenssyndromeawareness.com If your story or child's pics are not posted please email them...
Dr. Grossfeld, I'm sorry this is late in coming, and you may already have what you need.? In any case, the information follows: Morgan Warren DOB: 11/17/94 ...
Gretchenwarren@...
Feb 6, 2009 9:13 pm
695
Nathan is 6 and does not talk in sentences. You can tell he is trying really hard to annoucaunt but it doesn't come out. His vocab is very limit although he...
Hello, Your Matt sounds ALOT like my Laci. She has had speech therapy sense she came home from the hospital, and is still behind in her speech. I dont know...
Hello, So I guess I have to get used to him just walking up to anyone, but he seems to get unusually attached to complete strangers. For example, I took him...
Hello 11q families, I wanted to share with you some great news! Dr. Grossfeld has recently had a grant request approved that will help his research to find...
Welcome. I am Peggy mother of Grace who is 11q- 23.3. She is almost 34 yrs old. She couldn't nurse either. The roof of her mouth was to high . We are on day 13...
Peggy, Being without power isn't the greatest thing in the world. I just got mine back on. Any idea when you will get yours back? That had us on priority...
They are hoping to have it back by Friday.There is just so many without. My son cam ein off the road again yesterday and will be here till this weekend to...
We noticed that a couple of you mentioned your 11q child wearing Baha hearing aids. Our daughter is 2 1/2 years old and not speaking. She has been in speech...
I have 2 boys with JS (10 and 7) and they both have many ear infections. Neither of them get fevers or act like they are in pain, but their ears drain. My...
Faith(4-1/2 years old) was diagnosed when she was born with hearing problems but since we have not had issues and her OT, PT, and Speech therapist all seem to...
Hello. My son Matt has had several ABRs as well. His first one was when he was about six months old. At that time, it was determined that he has moderate...
Little steps mean alot in theses kids. Grace has small ear canals and had lots of trouble with wax build up in her ear. You can get over the counter drops now...
I was wondering if any of the other JS kids have issues regulating their temperature? Faith's core body temp is usually 96.8-97.2 She will sometimes feel hot...
Nathan has always had night sweats...We live in MO and it is very humid in the summer. It does effect his breathing when it is really hot and humid. He only...
HI TO ALL: MY GRANDDAUGHTER, JADE, IS 4 YRS OLD AND IS A J.S. CHILD. SHE ALSO HAS MILD HEARING LOSS IN ONE EAR. HER EAR CANALS ARE ALSO VERY NARROW. WE PUT...
Jeremy, Zachary has trouble regulating his body temps. He sweats at night quite a bit, especially in the summer! He also gets cold easily and can't adjust to...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
