Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Hi Welcome to the group.I'm here not for me but for 3 of my children with rp. I'm from France (french) Amitiés Marie-pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi Anne, and Welcome to the group. This is the first time that I know of children with RP, how old are they? I am sorry to hear this. I will keep them in my prayers every day. Welcome Anne! HiWelcome to the group.I'm here not for me but for 3 of my children with rp.I'm from France (french)AmitiésMarie-pia DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Anne , You have entered a site where evryone cares about everyone else . My Mother had RP , I don't know what I would have done without this group . They seem to know what you need before you do . We are a close nit family of sorts . Where are you from they may be someone near you from the group . Ask all questions that you need too , that's how we learn .Sherry Yolanda Romo wrote: Hi Anne, and Welcome to the group. This is the first time that I know of children with RP, how old are they? I am sorry to hear this. I will keep them in my prayers every day. Welcome Anne! HiWelcome to the group.I'm here not for me but for 3 of my children with rp.I'm from France (french)AmitiésMarie-pia DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hi I'm new to the group also. I had a time finding it then joining glad I'm here now sounds like you guys are an awesome group. I'm sorry for the fact that I need to join..It is my son he has RP he is only 16 years old looks like he has had it for about 4 years, but we only recently got the diagnosis very fustrating..I would love to hear from Anne who has 3 children with it, also from the rest this is so new to us Thanks, Phyllis ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hi Phyllis, Welcome to the best support group, these folks will inform you more on stuff you need to know than you can find anywhere. We hate you had to find us, but glad that you did since you needed us. I'm sorry to hear your son has RP but there is hope. There is so much you can learn here also please take the time to visit our web site which has lots of info on it, the address is www.polychondritis.org We are here for you, so ask any questions you may have or vent to us, and I'm sure Anne will answer you soon. Please take care, Love, Lu Hi I'm new to the group also. I had a time finding it then joining glad I'm here now sounds like you guys are an awesome group. I'm sorry for the fact that I need to join..It is my son he has RP he is only 16 years old looks like he has had it for about 4 years, but we only recently got the diagnosis very fustrating..I would love to hear from Anne who has 3 children with it, also from the rest this is so new to us Thanks, Phyllis ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Thanks for the welcome Yes it is very hard for me to watch him suffer. The worst was not knowing what he had. We are thanking God for a definite diagnosis it was a hard one to get.. he just got started on Metheltrexaate this week.. one rheumy put him on Dapsone first I don't think he believed me how bad his flares were. He hasn't been in remission for a year now. He has been through every test in the book over this past year. I have prayed for God to give the pain to me if it would take it from him. But God doesn't have that in His master plan! I told once when he was hurting severly " I just wish Mom could take it all from you " he lookes so upset and said " Mom I would never want you to hurt like this, please don't ever say that again " his father and I would take him to the ends of the earth to help him get better.And he know that..these have been some long 4 years. he was in remission once for about a year. everything looked like it was back to normal then boom he came down with the pain again..each time more test more quesses from doctors..this time like I said we have the diagnosis and now know what we are dealing with/We are not real sure he is dealing with the diagnosis okay, he will not talk about it right now, just tells me make sure the school knows I have a " rare disease. " He has been a real trooper through it all! He is a fine young man. How I deal? Right now alot of prayer & crying, I keep my chin up for him though , we talk alot about using this to help others so he doesn't focus on himself. We take each day at a time now and do stop to smell the roses, count our blessings alot more, we are praying the Metheltrexate with the prednisone will be the key for him to be reileived from his paain or make it tolerable. I am sorry I have babbled on I quess I am excited to have found this site Thanks again, Phyllis,'s MOM Quote Link to comment Share on other sites More sharing options...
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