My brother - Down Syndrome Message Board

matthew67 · 05-21-2002, 10:00 PM

I have a 35 year old brother who has down's syndrome. He lives at home with my mother who is 72 years old. Matthew has a variety of health problems including: asthma, grandmall seisure(taking Dilantin), bronchitis, overweight, thyroid problems, a goiter( the drs won't even talk about this one), ear problems( has had mastoid operation), fungus in toenails( when shopping we have to put him in wheelchair), insists on sleeping on couch because he has to sit up to breathe properly, he cannot lay down to sleep, arthritis in arms and hands. The doctors will not do much to help so we rely on what we can find at health food store in the way of supplements to help him. Any help anyone could give would be appreciated. We also have an extremely hard time finding pants to fit him. He has a large belly, short legs and no hinny. You cannot find proper clothes to fit him. In shirts sleeves are too long because he is big and broad in the sholders with short arms. My mother is on social security and gets ssi for Matt. If anyone knows of any resources that can help with any of these problems and concerns please let us know. Thank you. Debbie White

bigsissy · 05-25-2002, 07:13 PM

Oh, I just read your post and thought "this is going to be in a few years, except I have a ds sister. She lives at home with our mother and sleeps on the couch!!
I keep her on the weekends to give everyone a break, plus she is helpful and great with my 2 kids.
She is also short with a nice big belly. We cut off and hem her pants. ELASTIC waist on most only cause they are more comfortable for her. Same with long sleeve shirts cut them off and hem them under with elastic or buy 3/4 sleeves. She can only wear Nike shoes cause they don't squeeze her little chubby feet. Julie is overweight and we are working on it, with a reward system. Like tonight she got to go shopping and she picked new shorts. We don't have any agencies to help buy clothing for her. She has to be tested to make sure she is really "mentally retarted for life" before she can get any SSI benefits. Talk about red tape and the SS office.
Sorry I couldn't be of more help.

matthew67 · 05-27-2002, 05:50 PM

To bigsissy,
It was good to read your reply. Matt started having serious health problems a few years ago. It seems as if he is about middle aged healthwise. Matt has too many serious breathing problems for exercise to be of an option to him. He sleeps on the couch because he cannot lay flat down because of his breathing. I know that you are a real blessing to your mother because my mom says that I am the only one she can trust to be with Matt when she is not there. Mom was glad to hear about the Nike shoes because she has a real problem finding shoes for Matts feet. We will try them for him. How on earth does ssi think that your sister will wake up and the ds will have gone away. If you guys pull that one off let us know how you did it. In spite of any problems, ds children are really a blessing to your life. When you do get ssi for your sister she is also entitled automatically to get a medicaid card which is extremely important with the health problems that can arise with these special children. It is really fun when you go to the doctor, and the child has arthritis so bad that they can hardly step on their feet and all the doctor can tell you is your kid don't need anything. A kid like that does not need anything for pain. How ignorant. Good luck with your sister. Give her a hug for us.

Debbie (sister) Lois(mom) Matt ( most special boy in the world.)

bigsissy · 05-28-2002, 07:45 PM

I do have the best little sister I could of ever asked for waited 15 years good thing she was a special one. Couldn't take being the middle child any longer. Julie is great. You all sound so much like our family. Suzanne
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[This message has been edited by moderator3 (edited 06-20-2002).]