http://www.mdjunction.com/forums/williams-syndrome-discussions/feed http://www.mdjunction.com/forums/williams-syndrome-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sat, 18 May 2013 21:12:57 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/lounge/10572311-young-adult-living#10573085 Thanks for joining us, Mom! I am very intrigued by the condo idea. ~Mary... Sun, 24 Mar 2013 19:34:53 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/3782802-advocating-for-a-teen-with-williams-syndrome#10572307 I had a horrible time in public school getting a good program for my son.Our school district was mute on anything that could benefit him. It went on this way until I got an actual Special Ed Lawyer for my IEP's and then the wheels and help started moving! Sad it took so much. My son attended an excellent special education private school run by The Help Group, which is for Autistic children. They are not the same as our kids, but it was the best school experience he had.... Sun, 24 Mar 2013 13:28:26 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/introductions-personal-stories/10366685-lost-mom#10572294 Hi There! I am a Mother to a 28 year old young man with Williams. I do remember he was biting when he was about 2 or three and would get angry and scream. I realized that he was not yet able to Say with words, what was going on with him. Biting was his way of communicating his anger and frustration. I worked a lot with him to use his words to say how he felt, and as the language came to him more, the behavior stopped. I recommend you give your child a way that is acceptable to express h... Sun, 24 Mar 2013 13:21:36 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/10554349-how-to-begin-discussion-with-the-parents#10561499 I guess I would start with generalities first, then maybe if the conversation is received well, suggest genetic testing. I would probably say something like, You know I've gotten this new job that I just love, and the kids are so adorable, but this also has given me some concern about your daughter. I've noticed that she is not quite as talkative and engaged as some of the children in my care. I know every child and situation is different, but have you ever considered maybe having her scre... Tue, 19 Mar 2013 19:44:23 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/2286274-talk-about-behavior-issues-with-williams-syndrome/limitstart/20#10503626 Ty... Fri, 22 Feb 2013 15:07:41 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/3419661-constant-screaming#10496154 Have you had the baby checked for any heart problems. He could be screaming because of chest pain. I don't want to scare you by asking that. But my WS son has already had 2 open heart surgeries before he was 2 months old. He was not a fussy baby though. He now at 3 1/2 is starting to have some fussy nights where he doesn't ant to sleep. I find he needs a very dark room and quiet to sleep. I hope it is getting better.... Tue, 19 Feb 2013 17:52:40 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/2256987-working-with-toddler-with-williams-syndrome/limitstart/20#10491705 http://www.wschanginglives.org I wanted to share this site. Great information on this site... Mon, 18 Feb 2013 00:15:26 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/introductions-personal-stories/10474260-need-someone-to-help-me#10476350 Hi Havana, I'm sorry you are having so much difficulty. I know how hard it is to deal with an inconsolable child. Has your son ALWAYS been this way, or is this a recent development? My oldest son (non-WS) had colic and was inconsolable from birth to 3 months old, but eventually it passed. I don't know if this could be the problem, or not. Have you spoken with your pediatrician? There are many, many different kinds of pacifiers out there, and I've tried a few out on my kids. Each ki... Mon, 11 Feb 2013 15:55:56 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/10180396-hi#10318114 Hi Kyla, My daughter is 3 and there have been plenty we have dealt with since birth. Like Mary asked what specifics were you wanting to know and how does WS affect you? Dawn we also had feeding issues early on with her and switch to soy formula which worked well with her. As she got older the feeding issues continued but she is doing better now and is currently in a Food School class at a therapy center. Its great and she is starting to chew better and eat a few more items besides fren... Mon, 10 Dec 2012 18:40:01 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/10243598-immunizations#10250044 Hi Dawn, I don't think there would be much difference between immunizations for a child with Williams vs one without, but I really couldn't say with any degree of certainty. I really don't even know if my son has Williams, I just suspect it. I do understand your hesitations with immunizations, though. Two weeks following my oldest son's MMR, he was dx'ed with Type 1 diabetes. The immunization was suspected as the trigger . For that reason, I was VERY, VERY hesitant to immunize my othe... Sun, 11 Nov 2012 11:57:17 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/2401568-heart-defect-support-group-also-available#3993068 Thought I'd repost to this thread to make it more current in case this info would be pertinent to any newbies on the site. ~Mary... Thu, 09 Aug 2012 05:46:16 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/3529375-school-project#3750312 Hi Trappar21! My name is April and my son Daniel has Williams syndrome. He was diagnosed at 2 weeks old. He is now almost 3 years old. His symptoms are Delayed communication,fine and gross motor skills. He has high blood pressure. He is very happy. He has lots of other things that are not well. I'm just not sure what you want to know. 2.Daniel receives Physical and Speech Therapy and sees a bunch of different dr.s. Daniel loved his time in music therapy. He sees cardiology, vision, feeding a... Thu, 17 May 2012 21:12:23 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/3677524-me#3750246 Hi, Chayene! So glad you joined us. How old are you? What is your favorite kind of music? I will try and be on here more often. I homeschool my children and don't have much extra time for the computer. Talk to you later. ~April... Thu, 17 May 2012 20:37:59 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/3237275-a-movie-about-ws#3238668 I just saw the trailer. Looks like an interesting documentary. ~Mary... Fri, 25 Nov 2011 14:44:52 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/medicine-treatments/3142098-pulmonary-stenosis#3238656 Thanks, April, for your input! ~Mary... Fri, 25 Nov 2011 14:36:41 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/introductions-personal-stories/716360-intro#3227366 Hi there! They repaired his pulmonary valve and then later replaced it. they also repaired his co-arch and his right and left pulmonary arteries. They are watching all of those areas and also watching his descending aorta(2cm smaller than should be), his valve for when to replace again, and the lower side of his heart where it is thicker from pumping against the closed pulmonary valve. He also has high blood pressure in his arms so they watch that closely too. Looking at him you'd never kno... Sun, 20 Nov 2011 20:21:37 -0800 http://www.mdjunction.com/forums/williams-syndrome-discussions/introductions-personal-stories/3145514-hello#3146428 Hi April, I think what you're choosing to do for your S-I-L is fantastic! Though I can't give you any kind of documented facts, or even speak factually about WS, as my son may not actually have that dx (I just suspect WS). The fact that Tina can memorize means to me that she can most certainly learn to read! To generalize her abilities solely on a WS dx is ridiculous. But, I understand back in the day , doctors just accepted what they were taught, and special education in schools was... Fri, 21 Oct 2011 14:18:17 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/medicine-treatments/3142094-kidney-failure#3144610 Now see, this post I can't help you with. I've not encounter this in my experience... YET -- so I can't advise you on it. However, you could also join a kidney/renal forum on MDJ also, and ask there. Perhaps someone there may have heard, or seen, something and could give you some guidance. I know that help is hit-n-miss here at MDJ. Some groups thrive (like the bipolar, fibro, and Lyme's Disease groups) and others flounder (like this one!). Can't hurt to look around. ~Mary... Thu, 20 Oct 2011 20:27:57 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/general-support/796678-sleepy-situation#3144554 Don't know how I missed this one. Can't say that I ever saw the post (though I should have!). I usually comment on all (or most of!) the posts even if I know nothing just so that they don't go unanswered -- and certainly would have noted the hernia surgery, if nothing else, as my son had that, too. I must have been asleep at the switch. Noting the date, it was back-to-school time and I was probably overwhelming with filling out forms and burnt out with reading posts. Can't imagine how y... Thu, 20 Oct 2011 20:01:36 -0700 http://www.mdjunction.com/forums/williams-syndrome-discussions/introductions-personal-stories/3142090-nice-to-be-here#3144502 I can certainly see why you call yourself supermom9 ! Wish I could say I was half as proficient as you. ;) I'm glad you could join us here. I keep hoping that this group will get of the ground. We've had a couple of good spurts, but it always dies back down... unfortunately. I think because of the rarity of Williams, and the availability of other groups elsewhere, it is tough to get all the parents in one place talking and staying active. I hang out here 'cuz I'm a glutton for punishm... Thu, 20 Oct 2011 19:36:55 -0700