My daughter is 6 years old, she was diagnosed 3 years ago w/sausage toe and PsA. We had an injection done to reduce the swelling on her toe (which it did) except the joint is still quite large. We refer to it as her "special toe" and just recently she told me how she didn't like having a special toe. Quite simply it broke my heart, she is a twin and her sister is completely healthy. My little Isabella will be facing this along with a Vitiligo spot on her face and grey hair as she goes through elementary school and high school.
We have a wonderful pediatric rhermatologist who encouraged us to do the injection to reduce the initial swelling, even though it was basically a surgical procedure. I'm glad we did, she can run and play without the pain from her toe.
I am hoping that I can be acutely aware of her limitations having this disease. So I thank you for being members and any suggestions and advice are greatly appreciated. I don't want to limit her in any way but I also want to protect her from over-exhausting herself and taking down her immune system.
Her comment inspired me to look for resources and I came upon Ben's Friends, so thank you! If you have any suggestions for her toe, or Mommy I'd love to hear them! God bless!
Hi I’ve has Arthiritis since being little I had an operation on my left knee as it would not bend or straighten it swelled up also I had a few problems with my leg aching in the winter months and I had to wear specially adapted raised shoes as I had a difference in my leg lengths but other than that it never bothered me it never held me back and I was able to do everything that any other normal child could do maybe this was because I was young just wanted to reassure you that people with this can have a normal childhood my mother never held me back nor did she wrap me up in cotton wool and I’m grateful to her for letting me be me and have a normal life as now I cannot do half of the things I would like to because of the Psa it has really changed my life and I am just about getting used to living and coping with my new life as a result of the Psa im now nearly 33 and have had endless problems with this illness for the last 3 years it has swelled both my wrists I have sausage fingers the swellings are not really painful they just affect my hand function i have problems with my knees back hips feet spine and sij joints it also locked my jaw. I hope that Isabella has a childhood like mine where the Psa never really affected me take care xx
Thank you Catherine! I truly appreciate your response! I love that I can find out what real people are experiencing and going through and I can't wait for Isabella to be old enough to reach out on her own for the support she will need someday. Thank you again
Catherine said:
Hi I've has Arthiritis since being little I had an operation on my left knee as it would not bend or straighten it swelled up also I had a few problems with my leg aching in the winter months and I had to wear specially adapted raised shoes as I had a difference in my leg lengths but other than that it never bothered me it never held me back and I was able to do everything that any other normal child could do maybe this was because I was young just wanted to reassure you that people with this can have a normal childhood my mother never held me back nor did she wrap me up in cotton wool and I'm grateful to her for letting me be me and have a normal life as now I cannot do half of the things I would like to because of the Psa it has really changed my life and I am just about getting used to living and coping with my new life as a result of the Psa im now nearly 33 and have had endless problems with this illness for the last 3 years it has swelled both my wrists I have sausage fingers the swellings are not really painful they just affect my hand function i have problems with my knees back hips feet spine and sij joints it also locked my jaw. I hope that Isabella has a childhood like mine where the Psa never really affected me take care xx
Welcome to our group, Mom! I am rally glad that you found our site; there are times when it is a lifesaver.
I have had psoriasis my whole life and was diagnoses with PsA just over a year ago. My new rheumatologist is also testing me for other autoimmune issues as after a year of treatment I am only seeing Bout a 30% improvement.
I agree that, as long as your daughter’s symptoms are mild, she should just carry on as usual. It may take some time though before you and your doc have determined the severity of her disease. There may be times when you need to be the voice of reason and slow her down a little, but as long as she tolerates regular activity well the let her live it up!
You can also tell her that there are lots of people with “special toes”. Once, I has 10 special toes at one time! This is a good teaching moment for you. She will need to accept differences with her body because this is something that she will deal with for a long time. Our moles, scars, or even our toes don’t change who we are inside, nor do they change how much our families and friends love us.
I wish you and your daughter the best of luck. Feel free to message me if you need anything!
Thank you Cat! It didn't occur to me that you might have more that one special toe at a time, that must have been very tough. Sometimes she will point out how different she is from her twin, so I'm glad I have more information on how this affects others so we can talk about it and can look for answers together.
GrumpyCat said:
Welcome to our group, Mom! I am rally glad that you found our site; there are times when it is a lifesaver.
I have had psoriasis my whole life and was diagnoses with PsA just over a year ago. My new rheumatologist is also testing me for other autoimmune issues as after a year of treatment I am only seeing Bout a 30% improvement.
I agree that, as long as your daughter's symptoms are mild, she should just carry on as usual. It may take some time though before you and your doc have determined the severity of her disease. There may be times when you need to be the voice of reason and slow her down a little, but as long as she tolerates regular activity well the let her live it up!
You can also tell her that there are lots of people with "special toes". Once, I has 10 special toes at one time! This is a good teaching moment for you. She will need to accept differences with her body because this is something that she will deal with for a long time. Our moles, scars, or even our toes don't change who we are inside, nor do they change how much our families and friends love us.
I wish you and your daughter the best of luck. Feel free to message me if you need anything!
ive had a sausage toe even before i realized i had psa. dr said at this point i might as well live with it, since the cures may be worse than the condition. it isnt painful in my case and i wear shoes most of the time so noone notices anyway.
I was dx with PsA at age 10, though I had stiff fingers and some oddness that puzzled dr's for 2 years before that. When it came on, it came on full blast and there was no doubt at age 10 what was going on.
I'm 41 now, married with 2 children. I have a good life.
There are SO many better treatments now than when I was dx. My first treatment was simply tons and tons of aspirin, with blood tests weekly to test the level in my blood. Now there are treatments, such as the biologics, that can be taken without so many side effects.
Feel free to message me anytime. I had periods of my childhood where my PsA was severe, and I missed months of school at a time due to severe pain and fatigue, and I also had a few remissions where I felt great with no meds.
Just a thought. You've got some great resources in this group, but it seems to not be too typically diagnosed in childhood. For parental support, I wonder if you might want to look into a juvenile RA group. A lot of the treatments and concerns will be the same, and you will be able to get support from other parents going through this.
I wanted to add that the arthritis foundation has a pretty good program for kids with arthritis. Way back before email, they arranged for us kids with arthritis to be penpals with each other... I had penpals from 2 different states, and one from Australia! :) Now there are camps and things.
So far we have been fortunate to find her comfortable footwear and like you it isn’t noticeable most of time. I am going to see if her pediatric rheumy has a local group we can join.
I appreciate all your responses!! When her toe first swelled we thought she had broken it. So hearing about how others have dealt w/this issue & others that may/may not arise is very comforting!