Hi, I'm new to this group. I belong to the pws group. Bryce is 8 and has pws. I have been doing some reading and am wondering about Bryce and his anger...
My 6 1/2 month old baby girl with PWS(UPD) is arching her back a lot. She only does this when she is awake. When she is lying on bed she pulls her head...
Milagros, Patrick used to arch his neck back because he had sleep apnea. He was trying to open his airway so he could breathe better. After his tonsils &...
hi Sarah: i am not sure about these symptoms. Jacob's autism spectrum is more displayed by non-verbal, stimming and rocking. The only time he became...
My son becomes aggressive when he is reacting to chemicals and other things in his environment that is making him feel bad. He can't speak at all, so his only...
Paul & Robin Barrett
paulbarrett@...
Aug 15, 2007 1:34 am
56
Yes, I believe they are possibly signs of autism.I would first bring the concerns to your pediatrician. If he can't provide a satisfactory explanation to this...
Paul & Robin Barrett
paulbarrett@...
Aug 15, 2007 12:08 pm
57
Thank you so much for your answer. I took her to a neurologist but he told me it was to early to diagnose autism. I am going to try another Doctor. Thanks, ...
In a message dated 8/14/2007 8:34:54 PM Central Daylight Time, paulbarrett@... writes: nutrasweet, HI MY NAME IS TINA, HAVE ONE SON, KEVIN WITH PWS WITH...
TTerr100@...
Aug 15, 2007 8:17 pm
59
Dear Terri: Thank you for answering my e-mail. Chanel had a sleep study 3 weeks ago but I do not have the results yet. I will definitely check that ...
Unfortunately, my son is not just delayed, but will probably never speak. He will be 7 soon and has never spoken a word. ... From: TTerr100@... To:...
Paul & Robin Barrett
paulbarrett@...
Aug 16, 2007 1:23 am
61
I'm sorry, Robin. It's really difficult when our children can't speak. Patrick said a few words, but lost them all by age 2. It would make our kids lives...
My son Jacob is 10 and also has vitually no speech, just mama and car. I agree with you , Terri, he has so much inside and is so bright in so many ways. His...
Renee, That's awesome that a child could start speaking at age 10! That gives me some hope! Do you live near Kansas? That's where we are at - about 30...
Thanks--I did see that mother and child on TV. I may be wrong, but I don't think Oliver can understand letters. He does have a Dynavox, which the ST has been...
Paul & Robin Barrett
paulbarrett@...
Aug 16, 2007 11:44 pm
65
Hi Terri: No, I am just outside of Boston.... pretty far from Kansas! I have several friends with kids with PWS due to the local chapter of the association but...
Renee, I was hoping you were closer! It would be nice to have a dual diagnosis child near us. Our children are about the same age. I don't go to the PWSA...
... diagnosis child near us. Our children are about the same age. I don't go to the PWSA Conferences anymore because I don't feel like I fit in that well...
Ivy, That's fine if you forward on my message. I'm sure Dr. Merlin Butler already knows this as he is Patrick's dr. at Children's Mercy Hopsital in KC, MO...
Ivy, I am glad you are forwarding it because I also feel like a lot of the conference doesn't apply to life with jacob. There was a doctor at the NY conference...
Hi everyone, I have been reading the messages on this list with interest. It seems many have mentioned Autism on the national survey. In fact, it was 13% of...
I have been reading the posts from this group and I very much agree with Ivy. The PWSA is more than committed to serving the children with autism and PWS. This...
Linda Gourash
Wfgourash@...
Aug 20, 2007 11:18 am
73
Dr. Gourash, Thank you for taking the time to view the posts on this list. I have heard you speak at the National conferences and still refer to my notes from...
Jennifer, Thank you for the feedback. If you bring Nolan to a National conference please let me know ahead of time; I would like to try to meet him in the...
Linda Gourash
Wfgourash@...
Aug 21, 2007 9:04 am
75
Hello: My name is Milly and my daugther is 7 1/2 months (PWS/UPD). She is a 32 week premature baby. She is not in GH yet. I am a little concerned because she...
I would be concerned about the lack of eye contact. My son had good eye contact as a very small baby, but then lost it between the 13th and 17th months. He is...
Paul & Robin Barrett
paulbarrett@...
Sep 1, 2007 12:14 am
77
One other thing, although I know Oliver regressed into autism, we didn't seek a diagnosis of it, because there may have been negative insurance ramifications....
Paul & Robin Barrett
paulbarrett@...
Sep 1, 2007 12:15 am
78
My son would look up alot,too. At his worst, he almost acted as if he were deaf and blind, although he was not. He would not recognise me at age 15 months...
Paul & Robin Barrett
paulbarrett@...
Sep 1, 2007 12:17 am
79
Is you son UPD? My daughter is UPD and I was reading that Autism is seen in 25.3% of children with PWS and that UPD at greater risk for autism. If you have a...
Hi all! This week the PWSA (USA) office is sending out the attached survey to people who had responded Yes to Autism and PWS. The office was going to mail...
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