Everyone I talk to who knows what psoriatic arthritis is, is shocked that my 6 year old was diagnosed. She has all the classic symptoms so Im pretty confident in the diagnosis she got. Was anyone this young when they were diagnosed? If so, any tips on handling this disease and going to school, trying to keep up with friends, etc? My daughter has never liked to tell me if something hurts or is bothering her, so she will basically just scream or cry instead of just talking to anyone about it. Then when I ask questions (do legs hurt? tummy hurt?) she gets furious!! Thanks!
I so hate to hear when little kids are suffering with things and they can't quite understand or explain how they feel. It's so sad! The pain and fear she's experiencing probably puts her in a bad mood because it's just so frustrating for her. Is the doctor talking about meds--biologics?--or don't they prescribe them for little kids?
This sounds like my daughter, with the unwillingness to talk. I would let her do whatever she is feeling up to. But I would also get some support. The National Arthritis Foundation likely has resources for children living with arthritis, and depending on where you live there may be local support as well. You may want to consider getting a family therapist to work with your daughter and the family as a whole, as this impacts you all.
I know that on the site that we have some people who were diagnosed in high school, so it's not quite the same. Oh, and the school nurse can and should be your best friend in all of this.
She gets methotrexate every week and humira every other week. It makes her very tired also... so some days when she's feeling ok and not as tired she will open up more and tell me whats been bothering her. It also scares me though that she started these medications so young!
Her teacher and school nurse know about what is going on. BUT she won't complain at school at all. Before she was officially diagnosed she would almost fall down from stiffness and pain after sitting in the desk so long, and she told anyone at school :(
I think Stoney's suggestion about the family therapist is a good one ... they have a number of ways (tools of their trade, if you like) of encouraging children to talk and express what is going on for them, often through toys, role play, or art.
So hope that the treatment gets your daughter into remission.
I have had PsA since I was very little. I started verbally complaining when I was 9 and was sent to a bazillion doctors. I wasn't diagnosed until I was 30 years old. Everyone was convinced I was the unluckiest person in the world with over 70 symptoms that just never stopped coming- it was always something new and alarming. It wasn't until I was told to go to a Rheumatologist that I started to realize that almost everything that happened to me was connected to PsA.
So as hard as it may seem, being diagnosed at 6, even if that sucks, is so much better than not knowing. Plus, you can start preventative care now to slow the progression of the disease, which may put your daughter's prognosis in a better light than someone who is diagnosed at 50. Also, theoretically by the time nanobots will be skilled enough to maybe cure this disease or greatly impact it, I will be quite old, but your daughter will be a reasonable age, so it may improve her quality of life someday.
I suppose that is cold comfort, and probably impossible to explain to a 6 year old girl. I am not a parent, so I have no idea how a parent deals with the day to day issues, and the pain of seeing a child be ill. I realize she is not terminally ill, but I bet there are support groups in your community for parents of children with serious illnesses like cancer, who are probably also taking MTX. Maybe they have special insight or at least can empathize, and have a place where you could meet once a week or once a month and have a coffee and support each other.
I am sure your little girl will develop character and emotional depth from her experiences that will make her a strong person, and having physical limits may help her to develop intellectually. It sucks to see your kid in pain, and I am really sorry that you have to go through this.
Hi there Dtillery!
I've only just caught up with this thread. What great responses you've had.
I used to be a teacher and have worked with or been around children in various capacities most of my life. One thing that strongly impressed me as the mother of 3 sons is just how competent young girls can be (sorry sons!). It often struck me that many girls could quite possibly run a small country by the age of 11 or so! I'm not sure if this trait is quite as apparent at home and I think there's a good side to the fact that she feels she can safely let rip around you. Many of us who cope well with the disease need one safe place to show our pain & fear occasionally and I don't see why that would be different for children.
If you do think your daughter is one who is developing that need and ability to take charge of things, or possibly even if this is not apparent, I think it would be a good idea to encourage her to be in control of her disease and her treatment to a certain extent. For example, perhaps she could have responsibility for noting symptoms etc. in an online or paper diary and then for going through and 'pruning' it in advance of rheumatology appointments by identifying which symptoms or signs have lasted or seem most important. That way she will start to take control and also it may help her to realise that many unpleasant aspects of PsA either come & go or don't last. That in itself can be reassuring.
The more time I spent around children, the more I realised that many of us adults vastly underestimate their capacities. And that would be the capacity to understand fairly complex ideas, the capacity for happiness even in difficult circumstances, the capacity to adapt ingeniously and well to the things life throws at them. With a loving family your daughter has every chance of a great life ahead of her despite PsA.
I'm now wondering about other ways in which young children can make a start in 'being the boss' with regard to long-term conditions ......
Dtillery, I am so sorry to hear that your daughter is dealing with this monstrous disease. I was diagnosed few years ago and I am still in my 20s so sorry I can't help you with my experiences. But this is one of my biggest fears. I have a two year old daughter and I think it is going to be my lifelong fear that she might get PsA from me.
Lots of love to your little fighter!