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ashu

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About ashu

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  1. Hello, My daughter has the same problem, she can;t open her mouth completely when I try to feed her .But she ia better after medicatation, this is apart of disease process, you need to do stretching exercises. you can as well do with chewinggum. m//oashu
  2. Hello mam, Thank you so much for sharing such informative experiences with sclero family. My daughter who is 11 years, cute girl, is receiving cyclophosphomide infusion. She has received 3 cycles. She has Raynaud's and skin thickening. Worst part is she walks on her toes so she is unable to do daily routine because of contractures as well as progression in skin problems . I would like to know how many cycles did you receive? What is the dosage schedule? How is your well being after drug? You can PM or email me if you like. Thank you so much. with regards m/o ashu
  3. Hello. I was very happy to hear some time back one at least from sclero family is going for remission. But bad luck,.dont worry things will get better soon. Methotrexate is immunosuppresant that prevents progression of the disease more over that prevents contractures of the joints. It is a good drug for initial stages. m/o ashu Dr; Damayanti
  4. ashu

    My Child

    Hello TJW, I can understand how you must be feeling. My daughter who is now 12 years old, she had been diagnosed with scleroderma at age of 7 years. From then on she is been having series of complications one after the other. Just go through the stories of scleroderma patients in this site, it is very helpful. Get a good rheumatologist. You need to observe carefully for the progression of the disease. If you have any queries you can post in the forum. BEST OF LUCK M/O ASHU Dr. Damayanti
  5. Hello monica, There is no point having sleepless nights as this is going to aggravate your disease. 80% of people with scleroderma have Raynaud's. Stress, exposure to cold environment like winters will trigger Raynaud's. Finger tips & toe tips are most affected areas; very painful toes &finger tips, change of color either very pale or bluish discoloration. You've got to be very careful in the sense you have to keep your fingers &toes very warm by wearing gloves or socks otherwise you could get digital ulcers and end up losing fingers. There are also medicines available to control Raynaud's attacks. My daughter who is 12 years is suffering with this. BEST OF LUCK. M/O ashu Dr; damayanti
  6. Hello, Morphea is nothing but part of a sclerodema. It affects a particular area, meaning localized scleroderma. Best of luck, m/o ashu Dr. Damayanti
  7. hello STRESS is one of aggravating factor in this disease. Have stress free life . cellcept is a good medication m/o ashu Dr;damayanti
  8. Hello welcome to our forum, Physical therapy is of the utmost importance. If you neglect at this stage you are putting yourself into trouble .How much ever is possible you do it. You shouldn't go to the doctor for advice and then say you hate medicines. If your doctor says you should take medicine, give it a chance. My daughter who is 12 years old is suffering from scleroderma with dermatomyositis. I neglected physical therapy and she is now partially crippled. My advice is to see a rheumatologist and take his advice. If you are still frustrated go through the stories in this forum. They are very heart breaking. Best of luck. M/O ASHU DR. DAMAYANTI
  9. Hello Nina Lynn, My daughter was on methotrexate (MTX) for about a year. She tolerated it quite well. This drug in scleroderma is very helpful It prevents contractures, meaning stiffness of the joints. She was given a weekly dose every Saturday, and folic acid on Friday or Monday. Anything will do. Don't neglect physical therapy. Goodluck, m/o ashu
  10. Hello friends, In spite of all the medications her digital ulcers, nonhealing big ulcers over the joints, partial loss of head control, walking on toes, contractures, unable to do day to day activities, unable to squat, painful injections. It is unfortunate that 11 years cute little daughter of mine is suffering. Has anybody recieved cytoxan infusion? if so what is the improvement ? How many cycles received? What are the side effects? THERE IS NO ABLE TO DO IN HER DICTIONARY EVERYTHING IS UNABLE. m/o ashu
  11. Hello. My daughter who has scleroderma since 4 years has painful ulcers over the joints, which don't heal for months together. Because of that she has difficulty in walking and great difficulty in doing physiotherapy. Can anybody help me? Is there any role for cyclophosphamide infusion in healing the ulcer? m/o ashu
  12. Hello , My daughter has recieved I.VI.G when she was very sick. This drug is given as an adjuvant to immunocompromised patient. This is an immune booster which is given intravenously in a monthly schedule for 2-3 doses depending on doctor. m/o of ashu
  13. It is nice to hear form both of you. Don't worry everything goes well. When you get some time can you mail me the procedure and medication that she underwent. It provides some knowledge when I need it for my daughter. Best wishes m/o of ashu. :)
  14. Hello Jeannie Mc Clelland, Thank you so much for your reply . I am from India staying in Andhrapradesh near to Hyderabad. Her doctor says we need to give physiotherapy she has painful ulcers over the joints because of that it is difficult to flex the limbs. Can you help me, one of the doctors name you mentioned if possible I can take his appointment. Thanking you so much. m/o ashu
  15. Hello, My daughter who has scleroderma since 5 years old, she is walking on her toes. She can walk only for 10 steps. She used to run around and participate in running competition until 1 year ago. Can anybody as well as sclero expert give suggestions? It would be a great help if my daughter walks around with anybody's suggestion. More than her disease walking on toes is a mental agony for me. With regards m/o ashu
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