Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 IMy consultant neph whom I saw for the first time last week said that the arthritis I was suffering was not linked to my kidneys because the pain was too severe, but I still have my doubts, I have a feeling there is a link somewhere where direct or indirect. - do we not have any studies done by immunologists on this matter? Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 My child is sixteen with MDS, diagnoised at six weeks. I find it very unsettling that the exact same same and clothing issues would come up. I do believe this is sensory and stimulation overload, as well as I found it very difficult to size her feet due to thickness and toe angle. I too dreaded shoe shopping. I used gallons of Downy and removed all tags ect..Well we survived and I promise things get better as they adapt and you do also:) Always, a Mom first, Subject: Re: (unknown) To: MosaicDS Date: Wednesday, August 5, 2009, 8:11 AM Sharon, my son was a horror to take shopping when he was your daughter's age. And, shoes were something I dreaded. I finally traced his feet on pieces of cardboard and stuck them in my purse. It was easier to take things back than to deal with the tantrums in a store. He would be happy to come home and find a box or bag on his bed that he could investigate when it pleased him and my shopping was much less stressful. Please know it gets better with time. He now loves to shop and make his own choices. He will still shutdown if something is bothering him but after he sorts it out himself we can talk about it and that could be the next day or two. I did send him to his room to take deep calming breaths when he was smaller and tell him to come back when he could be calm and smile. You need that break from the situation just as much as they do! Hope this is helpful to you. Terry, Mom to Craig (21) Strong willed child My 5 year old daughter was diagnosed at birth with MDS. She is a tremendous joy, but at the same time very difficult. Just today, we went shopping for tennis shoes for kindergarten( all I can get her to wear are flip-flops). I explained to her that she is not allowed to wear flip-flops to school and that we were going shopping for tennis shoes. At this point, she is excited. Well, we get to the store and I allowed her to pick out the shoes. So I tell her she has to try them on. This is where the excitement stops. She starts throwing a holy fit. When she gets like this even after she calms down, there is no talking to her. It's like she tunes you out. Has anyone encountered similar behavior with there child? Is this an MDS trait? If this is a sensory issue, what can I do to help her? Any advice would be helpful!! Thanks for listening. Sharon Boucher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Hugs back to you -May !! I love hugs too ! (unknown) Hey its me again, -May Minett .I have MDS. I am from England and I am 31 and I still am very affectionate. Its what everyone says about me. I love to hug people. Maybe I need the teachings when its the right time to cuddle as well. I know I'm grown up more and everything but its just the fact that I am affectionate. I've only just come across people at University who don't like hugs, and I didn't understand it at first. They kept saying " this is my personal space " like they don't like people invading their space. It's like I get it but everyone loves hugs. Thats the way see it. Have a good day 'virtual hugz to everyone'lol -May Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 I have grown to be more comfortable with people being in my " personal space " . Usually I can now read someones genuine affections and I am comfortable with being hugged by a person. I just usually do not initiate physical touch with others. Sent from 's iPhone Hey its me again, -May Minett .I have MDS. I am from England and I am 31 and I still am very affectionate. Its what everyone says about me. I love to hug people. Maybe I need the teachings when its the right time to cuddle as well. I know I'm grown up more and everything but its just the fact that I am affectionate. I've only just come across people at University who don't like hugs, and I didn't understand it at first. They kept saying " this is my personal space " like they don't like people invading their space. It's like I get it but everyone loves hugs. Thats the way see it. Have a good day 'virtual hugz to everyone'lol -May Quote Link to comment Share on other sites More sharing options...
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