Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hello Neese, Unusual hand movements can be a symptom of a rare disorder called Rett's Syndrome. You might look at this website to see if the characteristics are similar to those of your granddaughter. http://www.ninds.nih.gov/disorders/rett/detail_rett.htm Suzy Granddaughter Hello to everyone, My name is Neese, I have a two year old Granddaughter that is doing some things that have me really concerned. She started about 6 months ago making movements with her hands, kind of a cross between the motions you would make playing patty cake with the " roll em up " gesture, and the hand washing motions with her fingers moving. When she is doing this she has her mouth open in an O and her little tongue is just a working. She seems to do this when she gets excited or is in a stressed state. I have tried to talk to her Mother about getting her checked out but the mother says that it is just a nervous habit. Which I guess it could be, but then again if it is, what is making her so nervous? I would still want it checked out. I wanted to get more information on what the possibilities might be before I " stick my foot in it " so to speak with my son. She does this off and on all day and only stops when someone distracts her. She is perfectly normal with everything else and is even doing well with potty training. I have no idea where to start researching this to determine if there is a problem that needs to be addressed professionally. Any advise that can be offered would be helpful. Thank you Neese __________________________________________________________ Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. http://tv./collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi Neese, Hand movements that occur with associated mouth movements can be an indicator that work is needed with the Babkin Palmomental reflex and that this reflex is weak. Weak reflexes are can be seen when the body is under positive (e.g. excitement) or negative stress. I have a couple of extra manuals from the Integration of Dynamic and Postural Reflexes course we just held in CA that has information on the reflex and how to work with it. If you are interested in getting one, please contact me at val-freitas@.... Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi, I just heard about this yesterday am trying to figure out if Samters might be what my granddaughter has. She is 12 years old and is going to have her 7th surgery for sinus polyps in two weeks. Her first surgery was when she was 3 y.o. She has asthma but I am not sure if she has a sensitivity to aspirin. We are unaware of it if that is the case. Do children have Samter's? Do any of you have any suggestions as to what to try? She has had allergy shots and has done the nettie pot irrigation. She is becoming very discouraged and depressed. Thanks Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Children can have Samters, unfortunately. There was a mother who would post often about her son. They tried desensitization but his stomach could not handle it. I'm so sorry she has to go through so much pain during her childhood.PamOn Mar 28, 2008, at 8:09 AM, Ot wrote:Hi,I just heard about this yesterday am trying to figure out if Samters might be what my granddaughter has. She is 12 years old and is going to have her 7th surgery for sinus polyps in two weeks. Her first surgery was when she was 3 y.o. She has asthma but I am not sure if she has a sensitivity to aspirin. We are unaware of it if that is the case. Do children have Samter's? Do any of you have any suggestions as to what to try?She has had allergy shots and has done the nettie pot irrigation. She is becoming very discouraged and depressed.ThanksNever miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 > > Hi, > I just heard about this yesterday am trying to figure out if Samters might be what my granddaughter has. She is 12 years old and is going to have her 7th surgery for sinus polyps in two weeks. Her first surgery was when she was 3 y.o. She has asthma but I am not sure if she has a sensitivity to aspirin. We are unaware of it if that is the case. Do children have Samter's? Do any of you have any suggestions as to what to try? > She has had allergy shots and has done the nettie pot irrigation. She is becoming very discouraged and depressed. > Thanks > Your message about your granddaughter really touched me. My grandmother had a very classic case of Sampters (although it was never diagnosed as that). I had my first polyp surgery in the third grade. I have never had anything but very slight asthma and have always been told that I was aspirin sensitive, but have never had a reaction. I had several surgeries, tons of shots, nose sprays, irrigations, medicines, and countless antibiotics. Most recently (just 3 weeks ago) I underwent aspirin desensitization, which is going very well. I am already feeling my sinuses open up. Because I had such an early onset of polyps and because I never satisfactorally presented aspirin allergy or asthma, my doctor was unclear if I was truly a Sampters patient. He spoke with the docs at the Scripps institute and they confirmed that I was indeed a Sampters patient. My suggestion is look into aspirin desensitization. It is the least invasive, best hope for a " cure " for her. And please tell her to not give up. I know first hand that this illness is very hard on children. I remember after recovering from my first surgery at the age of 8 and realizing that headaches were not a normal part of a day. I had no idea that people were walking around feeling so good. It is a very isolating feeling. Please tell her that she is not alone! Even though this illness is very uncomfortable and a daily fight, life can be lived to the fully despite it!!! I am now 37, with a college degree, a happy marriage and two great sons. The treatments for this illness are better and more effective than ever and will only be getting better. There is a lot of hope. Also, I recommend hanging around this group. It was because of this group and some very wonderful people on it that I pursued the desens. There is a ton of good information and support to be had from this fine group. > > ______________________________________________________________________ ______________ > Looking for last minute shopping deals? > Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 I had my first aspirin exacerbation when I was just a few months over the age of 21. I had extremely uncontrollable allergies growing up with the typical puffy eyes, sneezing, itching, and rash. They called it " hay fever " and I still have these issues to this day at the age of 31. I think the most common onset of Samster's is mid to late 30's -- at least that's what I've read. The only " treatment " that I've seen in this forum that make the polyps manageable are 1.)aspirin desensitization and 2.)Xolair. Unfortunately I cannot speak to either as I am in preparation for the desensitization and didn't pass the preliminary Xolair clinical trial. I wish you and your granddaughter the best of luck! Quote Link to comment Share on other sites More sharing options...
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