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My daughter has always been the kind of kid that gets ill all the time. She has always suffered from intense growing pains and I remember the nights I have stayed up rubbing her legs for hours on end. She reminds me so much of myself as a child with the growing pains and always ill. I have SLE and my grandmother had scleroderma and lived to the ripe old age of 83 and was diagnosed in the 70’s. She may have lived much, much longer then expected but her quality of life was poor.
Anyway, this past April she got ill with what seemed to be a virus. It has taken months to get over it and still it tends to flare up, her glands in her neck and just generally unwell. A week ago she complained of really bad achy pains in her hips and back. She stayed in bed then I noticed these hives on her face. She is 16 and when I saw these hives I was absolutely devastated. These hives reminded me of the chronic flare ups I would get for years until I was diagnosed. I still lived with them because I didn’t want to take any medications and just put them down to some allergy (denial). They are unsightly and itchy but not so much so as to needing treatment. Once things got out of control and I had a severe flare I was put on Plaquenil and Methotrexate and I have not had any more flare ups up the hives.
As I was saying, I look at my little girls and just pray that she is not following in my foot steps and that of my grandmother. I will be taking her to see the doctor on Tuesday and I am so thankful that my GP has a sister who has a connective tissue disease and understands these medical problems as not many GP’s understand them. My daughter has lost over 15 ponds in the last few months. She is already very tiny and petite but how she is so thin. She weighs about 90 ponds just under 6 stone and is 5 feet tall.
If she is suffering from one of these conditions or diseases how do I as a parent deal with the guilt and feelings? She keeps asking me if she has Lupus too. I tell her I don’t know but we will get it checked on Tuesday. She wants to know if she does will she end up like me. My flare a year ago caused irreversible damage to my feet joints, tendons and ligaments and I have had to stop working because I can’t walk or stand very well anymore. I know she is scared to death when she watched her great grandmother suffer all these years and how bad I am. How do you put them at ease? How do you tell them everything is OK and I am probably over reacting when she sees the same symptoms on her that I have had in the past? I can’t sit back and say she is over reacting because she isn’t. These are general and true concerns. I hope she doesn’t have Lupus or another form off autoimmune disease. For years now both my daughters have asked me how will they know if they have these diseases or not. I have always told them not to worry because there is a slight chance they could although I know that wasn’t the absolute truth and it would be when they are much older.
Thanks Stacie
Anyway, this past April she got ill with what seemed to be a virus. It has taken months to get over it and still it tends to flare up, her glands in her neck and just generally unwell. A week ago she complained of really bad achy pains in her hips and back. She stayed in bed then I noticed these hives on her face. She is 16 and when I saw these hives I was absolutely devastated. These hives reminded me of the chronic flare ups I would get for years until I was diagnosed. I still lived with them because I didn’t want to take any medications and just put them down to some allergy (denial). They are unsightly and itchy but not so much so as to needing treatment. Once things got out of control and I had a severe flare I was put on Plaquenil and Methotrexate and I have not had any more flare ups up the hives.
As I was saying, I look at my little girls and just pray that she is not following in my foot steps and that of my grandmother. I will be taking her to see the doctor on Tuesday and I am so thankful that my GP has a sister who has a connective tissue disease and understands these medical problems as not many GP’s understand them. My daughter has lost over 15 ponds in the last few months. She is already very tiny and petite but how she is so thin. She weighs about 90 ponds just under 6 stone and is 5 feet tall.
If she is suffering from one of these conditions or diseases how do I as a parent deal with the guilt and feelings? She keeps asking me if she has Lupus too. I tell her I don’t know but we will get it checked on Tuesday. She wants to know if she does will she end up like me. My flare a year ago caused irreversible damage to my feet joints, tendons and ligaments and I have had to stop working because I can’t walk or stand very well anymore. I know she is scared to death when she watched her great grandmother suffer all these years and how bad I am. How do you put them at ease? How do you tell them everything is OK and I am probably over reacting when she sees the same symptoms on her that I have had in the past? I can’t sit back and say she is over reacting because she isn’t. These are general and true concerns. I hope she doesn’t have Lupus or another form off autoimmune disease. For years now both my daughters have asked me how will they know if they have these diseases or not. I have always told them not to worry because there is a slight chance they could although I know that wasn’t the absolute truth and it would be when they are much older.
Thanks Stacie