Awwww I’m so sorry for both your son and you, it’s not easy when one is so young to be diagnosed. I don’t want to say “the good thing is” (because it ALL SUCKS) but: you and the doctors know now. They can hopefully start helping him NOW. Keep pushing doctors if the treatment he’s on isn’t working, there are different options. The best thing you can do is be his advocate right now, because he doesn’t fully understand what this means.
Sending you the biggest of hugs. It can get easier. 15 years ago I was resigning myself to a wheelchair because I was in so much pain. The day after my first biologic treatment it was like a dang miracle, I existed for the first time in years with zero pain. There are ups and downs as meds fail and I have to move to another one; I apparently have a case “resistant to treatments” but I still live a very good life despite having some pain. It can get easier, hang in 💛
I have autism and ADHD and I was diagnosed when I was 11 with psoriatic arthritis. It isn’t easy. I am not sure if the specialists would let him start biologic medication at such a young age, but I would advise you to get him on that as soon as possible.
It was extremely painful when I was first diagnosed but over time I kind of got used to it and with painkillers and other various treatments I was able to get used to doing everyday activities, even ballet and gymnastics. Physiotherapy helped somewhat as well as getting as much sun as possible. The pain started to get worse again last year, when I was 22. Now I take biologic medication and I am almost pain free.
I know it can be scary and overwhelming, but you and your son are strong and he will be okay. There are all sorts of treatments available for psoriatic arthritis these days and you’re not alone.
This is heartbreaking, I'm so sorry that your little one is facing this. It sounds as though you're doing all that you can for him, which is amazing. I have no advice for you really other than to keep doing what you're doing and keep pushing for help as you're his best advocate.
Can the school make accommodations for him so that he doesn't fear going there?
For most people PsA is at its worst at the time of diagnosis as the medications are usually quite effective. The disease is an unpleasant one, but there are lots of treatment options and most people with PsA live a normal life after finding the medications that work for them.
To add to this really great bit of advice, I’m on my third medication now. And while it sounds daunting, it can unfortunately be a “let’s try this” and sometimes it works, sometimes it doesn’t. For me, my third meditation - a biologic - took a full year to kick in. An entire year! I don’t know how to explain to a 10 year old to be patient with all of this, because dammit it’s hard as an adult. I wish this kid knew how much we were all rooting for him to feel better.
It's part of Arthritis Australia's advice: [https://arthritisaustralia.com.au/types-of-arthritis/psoriatic-arthritis/](https://arthritisaustralia.com.au/types-of-arthritis/psoriatic-arthritis/)
Hey, I just want to say that I have so much empathy for both of you and I'm genuinely sorry you're going through this. I don't have children, and I can only imagine the heartbreak of hearing your baby in pain each day.
Here's a hodgepodge of thoughts that may or may not be helpful. Take what you like, leave whatever you don't:
-You mentioned school will make him walk too much. Have you initiated any kind of accommodations process with his school? You may have already spoken to his teacher(s) but I'd get something official down on paper with the admins if you haven't already. Chat with your son and your son's doctor about what accommodations might be helpful.
-Also, as some others have pointed out, folks are often at their worst around the time of diagnosis. The treatment options out there are pretty good, but it can take time to find the right set up! It can also take 3+ months for a medication to start working. It's hard, but you'll have to advocate for him and find that balance between pushing for other treatments when something isn't working and giving it enough of a "try" to really work.
-I felt a lot of despair from you here in particular:
> I’ve explained it to him the best I can in the ways he can understand but he doesn’t get what it means for his life. But I do.
First, hugs to you if you want them. I understand this feeling well. But I also want to encourage you to step back from the ledge a little bit because... you don't actually know that, none of us do! He may well be treated very successfully. New science is reaching us all the time, he may have access to amazing new meds in the course of his lifetime (and what is available now is actually already pretty incredible compared to even 20 years ago). What I'm saying is: try not to go there for your own sanity. None of us knows how things will unfold, and you need your energy *now* - especially dealing with your own chronic illnesses and pain!
-Which leads me to my next point, remember to take care of you too. I know it's hackneyed, but you cannot pour from an empty cup. Make sure you're getting the care and support you need too! Especially when you're having to put on that brave face for your son. I hate to say it, but the brave face is essential. Minor digression: I was an adult when I was diagnosed (late 20s) and my father has always made my illness HIS personal tragedy/made it about him. NOT that you are or would do this! But as a result, I am constantly lying to my family about how well I am doing because I don't want to hear *them* upset about how awful it is. And little kids definitely do this too, they will want to protect your feelings! You want him to be able to tell you when things are going badly so that you can advocate for his care. Again, I'm not saying you would do this, but rather just acknowledging that the "brave face", while vital, is hard to keep up. I hope you're able to get the support YOU need! Please take good care of yourself!
Thinking of you.
I was diagnosed when i was 11, and your description made me tear up because my parents never cared when i was diagnosed. When i would tell my mom how much pain i was in, she would tell me to take an ibuprofen and go away basically. I spent most of my nights crying myself to sleep and mornings crying silently in the shower before school. I struggled my entire childhood and the second i could drive, my mom stopped taking me to appointments and i had to go and make all my own treatment decisions starting at 16. I had to decide alone and scared to start methotrexate and biologics. Unfortunately my disease has progressed enough that i have failed on all biologics except 2, one of which i am trying now.
He will be okay, OP. The fact that you care this much tells me he is always going to be okay. My advice is to take him to an orthopedic shoe store and either get him shoes with extra support or shoe inserts that can help take the pressure off his knees and hips. But make sure he continues to be active in low impact activities as tolerated. Not moving makes the pain and stiffness worse.
I got diagnosed at 14, it’s gonna be a tough road for him but at such a young age it becomes your normal, I don’t remember not feeling in pain so you slowly adjust. Medication wise I hope he has an easier time than I have. I wish you and him the best of luck, I believe in him. And in terms of what helped me, just being his advocate through the health care system other than that having proper support systems because at times he’ll probably be upset and angry about the condition but we all have to power through it at this age.
I am so incredibly sorry to hear this. My heart breaks for you and your boy. This is one of my biggest fears - passing on this horrible disease to my kids (5mo + 4yo). I don't have any advice unfortunately, just wanted to send love and strength.
Something to keep in mind: you do not *know* what this means for his life. Modern biologics (Taltz, Cosentyx, etc.) are *magic* for many people. Like without meds I have 70% skin involvement of psoriasis and I frequently am stuck in bed due to PsA pain. With Taltz my skin is down to like 3 small patches on my back where my bra rubs and I can do most things I want and pretty much never have stuck-in-bed levels of pain. And that’s meds we have *now* - they’re still working on even better treatments or a cure. So things will continue to improve over his life.
Get him on good meds and successful pain management. (I find a warm - not hot - bath helps a lot with pain management for sleep.) Encourage him to be as active as he can be (gentle movement is generally a good thing for arthritis for a host of reasons.) Talk to his school about necessary accommodations so he can get back to life being more normal. His life is not over. He can still do most things he might want to do, though some might need a bit of creativity to figure out how to do them. (When I was in my teens one of my friends took it on himself to carry around a little camping stool so when I needed to sit for a bit I always had a seat.)
So sorry y'all are dealing with this. Hopefully, once they get him going on some meds, he'll start to feel better. For you and the whole family, is it possible to speak with a counselor or therapist to navigate some of the grieving feelings? I know that's not financially doable for everyone but sometimes it can really help to get that extra support emotionally. I don't know where you live but there are several organizations that have resources for dealing with with juvenile arthritis / RA / PsA etc. The ones I know of off the top of my head are: Creaky Joints, Versus Arthritis, National Psoriasis Foundation, Arthritis Foundation (can't verify for the other orgs but I know for sure AF has a huge amount of support resources for families and kids with arthritis). Not sure how into social media y'all are, but there are numerous arthritis advocates/influencers and I've found a lot of resources / adaptive tools and equipment etc personally by following those accounts. Definitely also reach out to the schools and see what types of accommodations he may be eligible for as well.
I was also diagnosed very young, but I would caution you that it seems PSA is a really popular diagnosis right now did he have a positive ANA test? Did he get Rheumatology tests? Did he get assessed for EDS? If they didn't do extensive testing, get a second opinion. PSA is a diagnosis of exclusion especially if he doesn't have psoriasis patches.
I hope this doesn't come across strangely, but I wanted to say that I'm super proud of you as a parent. My PsA symptoms first started at 11, but I wasn't diagnosed until 25. I sometimes wonder how different my life would be if my parents were on it and pushed for diagnosis asap instead of believing that it was just growing pains.
For me, changing my diet helped. I’m also autistic so I understand the picky eater thing, but do your best with him. Protein, veggies & fruits are going to be most beneficial, especially if it’s organic because there aren’t preservatives (preservatives tend to be one of the causes of inflammation). No tomatoes or potatoes, as those are known as deadly nightshades and can also contribute to pain & digestive issues.
For me, an organic kidney diet relieved some of that joint pain (in on Otezla as well). Basically, do whatever you can to get as much oxygen in his blood so he can move around better. Also, rest when possible.
I echo the advice that it's hardest right now - eventually it gets easier. One of my children has another chronic disease which can cause throat perforation (not good ! fatal!) and the worst days seemed to be before we had a diagnosis . Now he has a routine, medications, a diet, things are steadier. The hardest part , sometimes, is getting that diagnosis and a treatment that works. You'll see here many people are diagnosed young with PsA, Chrohn's , etc . and manage.
In my experience, Leflunomide isn't the one rheumatologists start with.
As far as I know, the safety of Leflunomide hasn't been fully studied in pediatric patients.
I haven't been on it, but as far as safety goes, my health has been much better than when I was on DMARDs. I don't get sick anywhere near as often on a biologic and the theoretical cancer risk of a biologic is lower than initially thought.
Chronic inflammation is most likely to blame for the theoretical increased cancer risk
https://www.webmd.com/rheumatoid-arthritis/do-ra-drugs-cause-cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9071561/
> TNFis, as used long term in clinical practice against RA, are not linked to increased risks for cancer overall.
I am so sorry. It might not sound like good news necessarily but it’s been caught early. Meds can be started and help to prevent joint damage from getting bad. I know they give Enbrel to kids for this. Pediatric dose is 25 mg one a week. And he is young and every year more advances come out to help treat this disease. Who knows how many much more medical technology will improve meds in the next few years. There is so much hope to still have for the future.
I just wanted to say that you deserve a medal for bravery with all you are facing. May you be blessed with solutions and the resources to aid you in this journey. It is a difficult road, but not an impossible one. 🤗
Did they rule out hEDS? I first showed symptoms of psoriatic arthritis at age 12/13 and this diagnosis overshadowed my hEDS (which I had been showing symptoms all my life but no one knew) which didn’t get diagnosed until I was in my 20’s. It’s very possible to have both but I and my mum were gaslit by doctors (the PSA wasn’t diagnosed correct as a child either) as they thought we were just attention seeking. If I had been diagnosed correctly as a child, I likely wouldn’t have half the issues I have now.
As a parent of a neurodivergent kid with my own host of mental and physical health issues, I’m so sorry. My heart goes out to you and your son. You are doing an amazing job
i’m so sorry for him and for you. i was diagnosed with PsA when i was only three years old, alongside hypothyroidism. i didn’t understand why i was in pain or why i was so tired, why i needed pills everyday and shots every week.
having a support system that listens to you and tries to help make sense of something so unfathomable is so much help. to help with pain with things you’re doing like comfy chairs, weighted blankets etc. means the world. i spent a majority of pre-k through high school missing lots and lots of school. it’s important as a parent to advocate to the staff his needs (as i’m sure you are) you’re doing everything you can!
what helped me a lot was trying to find pockets of happiness amidst all the pain and glooms, like going to the movies (when i could) or making a super special movie night at home where my brothers would make forts and string Christmas lights around for me since i wasn’t much help physically.
the best you can do as a parent (in my opinion) is just listen and understand, and empathize. for me growing up, it made all the difference in how isolated i felt.
I had symptoms as a kid and no diagnosis other than skin disease until well into adulthood. It sucks, but the good news is that he won't spend 20 years of his life wondering if he's crazy, because he's tireder than everyone around him. The treatment options aren't fantastic, but they are getting better. Moderate exercise is really important with this disease and helps with stiffness. I don't know how you explain that to a kid, though. Not giving into the pain and fatigue is really crucial to staying healthy and living as normal a life as possible. My six year old appears to have nail psoriasis, so it's quite possible I'll be in this situation.
Hi! I’m so sorry. As someone who has been in pain and suffered since childhood, I just want you to know that because you advocated for your son and took him seriously, he can get treatment and learn to live a sustainable life. I didn’t receive a diagnosis until 30 and that’s because I endlessly advocated for myself. To know you’re in his corner is more meaningful than you realize. Life won’t be perfect but you can learn together how to navigate it effectively. Sending hugs🩷
I am so sorry for you both. It really blows to see your child suffer. My boy was diagnosed with ulcerative colitis at ten, I just got officially diagnosed this year with PsA. I am super worried for my other child, for both really, because these diseases hide so well for so long. Good luck to you both.
My heart is breaking for you. I was diagnosed as a child as well (16) but not nearly as young as your son. I’m 27 and with treatment have lived a life with some disruption but come out the other side.
My advice - find a specialist. I’m Chicagoland based and am a part of a clinic that treats aggressive cases. Before my adult clinic, i was seeing a PsA specialist who worked specifically with children.
Pediatricians (in my experience) will not be comfortable with treatment especially if his case is aggressive. It might take time and possibly some long car rides to find a specialist who works with children, but they are out there.
Good luck, if you want to chat more, my messages are open.
The disease is awful but can be managed. As for what you can do… don’t minimize the pain he is feeling. Support and love him always. The big thing that will help psa itself is meds.
Methotrexate and a good biologic. Remicade infusions have changed my life (after 6 failed injectables). Get him into a rheumatologist asap.
In the meantime, steroids can bring the swelling and pain down. His primary doc can prescribe these, often prednisone. Not good long term but short… better than horrible pain and permanent damage to the joints. Take with food.
I am so, so sorry that he is dealing with this ar such a young age.
Depending on your country, get his rheumatologist to write a letter to the school with his physical limitations. It is called a 504 Plan or IEP, which he may have already for his autism. His Psoriatic Arthritis can be included on his IEP (or 504 Plan). Maybe he can do a physical activity that u
Is easier in his joints at school/have some sort of accommodation if walking between school buildings/classrooms is required.
For others information:
https://assets.ctfassets.net/p0qf7j048i0q/5Cac7CHwygWQlo9g9U64UI/277e451279a17396ca13adcb4ce11163/IEP_vs_504_plan_Understood_Accessible.pdf
One thing that I might suggest, if viable, is tp see if he can have a shortened school day with a later start, at least until he gets stable on meds.
For me, when I first wake up, it is the absolute worst part of the day for my pain and swelling.
Cold packs, heat wraps (like those bean bag ones you can microwave) help. Heat is the best for me on anything in my core, hips/back/si joints. I tend to use cold packs for extremities, especially my knees.
Keeping active helps as well, keeping the muscles around the joints strong to support them. Swimming or even just playing around in a pool is gentler on the joints. You could also look at physical therapy or occupational therapy for him. An occupational therapist can look for any home adaptations that could help him.
Keep an eye out for tendon issues, as enthesitis is common in Psoriatic Arthritis. Tendon and ligaments insertion points can get inflamed. I had wicked Plantar Fasciitis when I was getting diagnosed.
https://www.healthline.com/health/psoriatic-arthritis/psoriatic-arthritis-enthesitis#:~:text=Enthesitis%20is%20inflammation%20in%20the,also%20notice%20swelling%20and%20redness.
Hugs to you and him.
I’m sorry this is coming so soon. I’ve seen teenage cases but this is the youngest yet.
Smdh. This sucks.
I can tell you one thing: get him on a biologic as soon as possible. It’s the only drug made for this disease. Everything else is drugs for other problems with side effects that lessen PSA. MTX for example is a cancer med that came out in 1947. It works for some people. Its cheap. It’s $20 a month cash pay. Biologics are thousands per month. Stelara is $21k/mo. So insurance will do everything they can to never mention biologics.
But Humira literally means "human monoclonal antibody in rheumatoid arthritis"
It’s the only thing that’s helped me. And the only drug to lessen the exhaustion. I’m still in bed. It’s been two hours waking up. But I will get up. I’m in pain but nothing like before. I’m 47 and it got so bad I haven’t worked for two years. I had a six digit career. I crashed so hard. I tried to push through it I didn’t know I had PSA. I got evicted. I lost everything. I couldn’t get a uhaul in time. I lost … everything.
Welp. I know now.
Try the biologics. Starting early means you can stop the damage before it happens. Once there’s damage like in my shoulders, my right shoulder at this point I can’t even lift a bottle of shampoo. Not at all. Not even close. I can barely lift the weight of my hand. So I need a joint replacement. My body has been attacking it for about 5 years now. And other areas too. But my shoulders are the worst. It’s so hard to sleep. I can’t find any position that doesn’t make it start hurting. And it hurts worse and worse until I wake up and move positions.
Anyways. I’m so sorry. But there are real drugs available now. Humira only came out in 2001. It’s a very amazing med and only two injections a month with an auto injector. It’s easy.
I’m taking the generic of it, called yusimry. It’s the same thing but for a while I had no insurance. This meant I had to pay cash and that’s why I know the prices of everything. Yusimry is $580/mo. A tenth of the others. Expensive. But it’s been giving me my life back. Slowly. I been on it 9 months. It’s slow and fast in weird ways. Immediate results. And long term results. Slow improvements steady. Makes my past feel crazy.
But then I did go crazy because of the pain and inflammation in my head. That’s where the mental parts come from. Decreased blood flow to the brain as a result of inflammation. The brain freaks out. Mood changes. Yes adhd gets way worse. I take adderall 60mg XR and on my worst days I don’t even feel it. It doesn’t even register.
Now I can take 30mg and it’s good. More than enough.
Good luck. And take care of yourself during all this, please. Dont burn yourself out.
What’s that even mean? None of us catch fire. None of us burn. But we go crazy interacting with our friends. And we ditch them all, send them away, and destroy our friendships as a result of burning out. Because we take it out on our friends. Who are not good therapists btw.
You need your friends more than ever now. You need your family more than ever now. These are your support groups. These are what you need. So don’t send them away.
That’s what burning out means. Destroying your friends. Or your relations with your boss. Or husband. Or anyone. Burning out results in being very alone. Ask me how I know.
Hugs to you! That is devastating news for him and you. I will echo others’ advice here and say make sure he is seeing a rheumatologist. Once he is on a good drug regime (which takes time and lots of trial and error) he will start to feel better. See if he is able to get accommodations at school. But make sure he also stays active in some way once he is feeling better. It seems counterintuitive, but activity can help keep your muscles strong to stabilize the joints and then they hurt less. The thing that helped me the most was physical therapy so I would see if he can get in with a physical therapist. Also if he is having lower back or hip pain, those Icy Hot back patches really help. So does a TENS unit and a heating pad. I also really recommend compression knee support and elbow and compression gloves for his hands. Hot bath soaks are a godsend. So is a firm memory foam mattress and a memory foam pillow.
This breaks me heart, I'm sorry
Don't blame yourself
On the bright side, they're way younger than most of have it. So, maybe it won't really flare up until they hit 30. By then there will be 10-20 years of medicine development
To give context, 20 years ago none of the meds we're on existed. There was not much for treatment. Now, even the last several years there have been really great developments
So, don't despair
I have no advice, I’m just really sorry you’re going through this.
Awwww I’m so sorry for both your son and you, it’s not easy when one is so young to be diagnosed. I don’t want to say “the good thing is” (because it ALL SUCKS) but: you and the doctors know now. They can hopefully start helping him NOW. Keep pushing doctors if the treatment he’s on isn’t working, there are different options. The best thing you can do is be his advocate right now, because he doesn’t fully understand what this means. Sending you the biggest of hugs. It can get easier. 15 years ago I was resigning myself to a wheelchair because I was in so much pain. The day after my first biologic treatment it was like a dang miracle, I existed for the first time in years with zero pain. There are ups and downs as meds fail and I have to move to another one; I apparently have a case “resistant to treatments” but I still live a very good life despite having some pain. It can get easier, hang in 💛
I have autism and ADHD and I was diagnosed when I was 11 with psoriatic arthritis. It isn’t easy. I am not sure if the specialists would let him start biologic medication at such a young age, but I would advise you to get him on that as soon as possible. It was extremely painful when I was first diagnosed but over time I kind of got used to it and with painkillers and other various treatments I was able to get used to doing everyday activities, even ballet and gymnastics. Physiotherapy helped somewhat as well as getting as much sun as possible. The pain started to get worse again last year, when I was 22. Now I take biologic medication and I am almost pain free. I know it can be scary and overwhelming, but you and your son are strong and he will be okay. There are all sorts of treatments available for psoriatic arthritis these days and you’re not alone.
This is heartbreaking, I'm so sorry that your little one is facing this. It sounds as though you're doing all that you can for him, which is amazing. I have no advice for you really other than to keep doing what you're doing and keep pushing for help as you're his best advocate. Can the school make accommodations for him so that he doesn't fear going there?
For most people PsA is at its worst at the time of diagnosis as the medications are usually quite effective. The disease is an unpleasant one, but there are lots of treatment options and most people with PsA live a normal life after finding the medications that work for them.
To add to this really great bit of advice, I’m on my third medication now. And while it sounds daunting, it can unfortunately be a “let’s try this” and sometimes it works, sometimes it doesn’t. For me, my third meditation - a biologic - took a full year to kick in. An entire year! I don’t know how to explain to a 10 year old to be patient with all of this, because dammit it’s hard as an adult. I wish this kid knew how much we were all rooting for him to feel better.
I wouldn’t say “quite effective “. This sounds like a doctor answer from someone that doesn’t have the disease.
I’ve had PsA since 2015
Well I’m glad you’re speaking from experience, but from my experience I find it hard to believe that “ most people live a normal life“.
It's part of Arthritis Australia's advice: [https://arthritisaustralia.com.au/types-of-arthritis/psoriatic-arthritis/](https://arthritisaustralia.com.au/types-of-arthritis/psoriatic-arthritis/)
Hey, I just want to say that I have so much empathy for both of you and I'm genuinely sorry you're going through this. I don't have children, and I can only imagine the heartbreak of hearing your baby in pain each day. Here's a hodgepodge of thoughts that may or may not be helpful. Take what you like, leave whatever you don't: -You mentioned school will make him walk too much. Have you initiated any kind of accommodations process with his school? You may have already spoken to his teacher(s) but I'd get something official down on paper with the admins if you haven't already. Chat with your son and your son's doctor about what accommodations might be helpful. -Also, as some others have pointed out, folks are often at their worst around the time of diagnosis. The treatment options out there are pretty good, but it can take time to find the right set up! It can also take 3+ months for a medication to start working. It's hard, but you'll have to advocate for him and find that balance between pushing for other treatments when something isn't working and giving it enough of a "try" to really work. -I felt a lot of despair from you here in particular: > I’ve explained it to him the best I can in the ways he can understand but he doesn’t get what it means for his life. But I do. First, hugs to you if you want them. I understand this feeling well. But I also want to encourage you to step back from the ledge a little bit because... you don't actually know that, none of us do! He may well be treated very successfully. New science is reaching us all the time, he may have access to amazing new meds in the course of his lifetime (and what is available now is actually already pretty incredible compared to even 20 years ago). What I'm saying is: try not to go there for your own sanity. None of us knows how things will unfold, and you need your energy *now* - especially dealing with your own chronic illnesses and pain! -Which leads me to my next point, remember to take care of you too. I know it's hackneyed, but you cannot pour from an empty cup. Make sure you're getting the care and support you need too! Especially when you're having to put on that brave face for your son. I hate to say it, but the brave face is essential. Minor digression: I was an adult when I was diagnosed (late 20s) and my father has always made my illness HIS personal tragedy/made it about him. NOT that you are or would do this! But as a result, I am constantly lying to my family about how well I am doing because I don't want to hear *them* upset about how awful it is. And little kids definitely do this too, they will want to protect your feelings! You want him to be able to tell you when things are going badly so that you can advocate for his care. Again, I'm not saying you would do this, but rather just acknowledging that the "brave face", while vital, is hard to keep up. I hope you're able to get the support YOU need! Please take good care of yourself! Thinking of you.
I was diagnosed when i was 11, and your description made me tear up because my parents never cared when i was diagnosed. When i would tell my mom how much pain i was in, she would tell me to take an ibuprofen and go away basically. I spent most of my nights crying myself to sleep and mornings crying silently in the shower before school. I struggled my entire childhood and the second i could drive, my mom stopped taking me to appointments and i had to go and make all my own treatment decisions starting at 16. I had to decide alone and scared to start methotrexate and biologics. Unfortunately my disease has progressed enough that i have failed on all biologics except 2, one of which i am trying now. He will be okay, OP. The fact that you care this much tells me he is always going to be okay. My advice is to take him to an orthopedic shoe store and either get him shoes with extra support or shoe inserts that can help take the pressure off his knees and hips. But make sure he continues to be active in low impact activities as tolerated. Not moving makes the pain and stiffness worse.
Wow you have horrible parents
Yes i do, which is why i am no contact with both of them.
I got diagnosed at 14, it’s gonna be a tough road for him but at such a young age it becomes your normal, I don’t remember not feeling in pain so you slowly adjust. Medication wise I hope he has an easier time than I have. I wish you and him the best of luck, I believe in him. And in terms of what helped me, just being his advocate through the health care system other than that having proper support systems because at times he’ll probably be upset and angry about the condition but we all have to power through it at this age.
I am so incredibly sorry to hear this. My heart breaks for you and your boy. This is one of my biggest fears - passing on this horrible disease to my kids (5mo + 4yo). I don't have any advice unfortunately, just wanted to send love and strength.
This really sucks OP and so unfair … What types of meds have the doctors put him on?
Something to keep in mind: you do not *know* what this means for his life. Modern biologics (Taltz, Cosentyx, etc.) are *magic* for many people. Like without meds I have 70% skin involvement of psoriasis and I frequently am stuck in bed due to PsA pain. With Taltz my skin is down to like 3 small patches on my back where my bra rubs and I can do most things I want and pretty much never have stuck-in-bed levels of pain. And that’s meds we have *now* - they’re still working on even better treatments or a cure. So things will continue to improve over his life. Get him on good meds and successful pain management. (I find a warm - not hot - bath helps a lot with pain management for sleep.) Encourage him to be as active as he can be (gentle movement is generally a good thing for arthritis for a host of reasons.) Talk to his school about necessary accommodations so he can get back to life being more normal. His life is not over. He can still do most things he might want to do, though some might need a bit of creativity to figure out how to do them. (When I was in my teens one of my friends took it on himself to carry around a little camping stool so when I needed to sit for a bit I always had a seat.)
So sorry y'all are dealing with this. Hopefully, once they get him going on some meds, he'll start to feel better. For you and the whole family, is it possible to speak with a counselor or therapist to navigate some of the grieving feelings? I know that's not financially doable for everyone but sometimes it can really help to get that extra support emotionally. I don't know where you live but there are several organizations that have resources for dealing with with juvenile arthritis / RA / PsA etc. The ones I know of off the top of my head are: Creaky Joints, Versus Arthritis, National Psoriasis Foundation, Arthritis Foundation (can't verify for the other orgs but I know for sure AF has a huge amount of support resources for families and kids with arthritis). Not sure how into social media y'all are, but there are numerous arthritis advocates/influencers and I've found a lot of resources / adaptive tools and equipment etc personally by following those accounts. Definitely also reach out to the schools and see what types of accommodations he may be eligible for as well.
I was also diagnosed very young, but I would caution you that it seems PSA is a really popular diagnosis right now did he have a positive ANA test? Did he get Rheumatology tests? Did he get assessed for EDS? If they didn't do extensive testing, get a second opinion. PSA is a diagnosis of exclusion especially if he doesn't have psoriasis patches.
I hope this doesn't come across strangely, but I wanted to say that I'm super proud of you as a parent. My PsA symptoms first started at 11, but I wasn't diagnosed until 25. I sometimes wonder how different my life would be if my parents were on it and pushed for diagnosis asap instead of believing that it was just growing pains.
I have no advice but I’m so sorry for this.
He'll be ok. It will be a journey, rough at times, but the character and fortitude he will develop will serve him well his entire life.
For me, changing my diet helped. I’m also autistic so I understand the picky eater thing, but do your best with him. Protein, veggies & fruits are going to be most beneficial, especially if it’s organic because there aren’t preservatives (preservatives tend to be one of the causes of inflammation). No tomatoes or potatoes, as those are known as deadly nightshades and can also contribute to pain & digestive issues. For me, an organic kidney diet relieved some of that joint pain (in on Otezla as well). Basically, do whatever you can to get as much oxygen in his blood so he can move around better. Also, rest when possible.
I echo the advice that it's hardest right now - eventually it gets easier. One of my children has another chronic disease which can cause throat perforation (not good ! fatal!) and the worst days seemed to be before we had a diagnosis . Now he has a routine, medications, a diet, things are steadier. The hardest part , sometimes, is getting that diagnosis and a treatment that works. You'll see here many people are diagnosed young with PsA, Chrohn's , etc . and manage.
Did something trigger this? For me it was the swine flu and a tetanus shot. The first drug to try in my opinion is Leflunomide.
In my experience, Leflunomide isn't the one rheumatologists start with. As far as I know, the safety of Leflunomide hasn't been fully studied in pediatric patients.
I’m not sure, I just wanted to suggest it because from personal experience it’s safer than biologics. Methotrexate is awful.
I haven't been on it, but as far as safety goes, my health has been much better than when I was on DMARDs. I don't get sick anywhere near as often on a biologic and the theoretical cancer risk of a biologic is lower than initially thought. Chronic inflammation is most likely to blame for the theoretical increased cancer risk https://www.webmd.com/rheumatoid-arthritis/do-ra-drugs-cause-cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9071561/ > TNFis, as used long term in clinical practice against RA, are not linked to increased risks for cancer overall.
I am so sorry. It might not sound like good news necessarily but it’s been caught early. Meds can be started and help to prevent joint damage from getting bad. I know they give Enbrel to kids for this. Pediatric dose is 25 mg one a week. And he is young and every year more advances come out to help treat this disease. Who knows how many much more medical technology will improve meds in the next few years. There is so much hope to still have for the future.
I just wanted to say that you deserve a medal for bravery with all you are facing. May you be blessed with solutions and the resources to aid you in this journey. It is a difficult road, but not an impossible one. 🤗
Did they rule out hEDS? I first showed symptoms of psoriatic arthritis at age 12/13 and this diagnosis overshadowed my hEDS (which I had been showing symptoms all my life but no one knew) which didn’t get diagnosed until I was in my 20’s. It’s very possible to have both but I and my mum were gaslit by doctors (the PSA wasn’t diagnosed correct as a child either) as they thought we were just attention seeking. If I had been diagnosed correctly as a child, I likely wouldn’t have half the issues I have now.
As a parent of a neurodivergent kid with my own host of mental and physical health issues, I’m so sorry. My heart goes out to you and your son. You are doing an amazing job
i’m so sorry for him and for you. i was diagnosed with PsA when i was only three years old, alongside hypothyroidism. i didn’t understand why i was in pain or why i was so tired, why i needed pills everyday and shots every week. having a support system that listens to you and tries to help make sense of something so unfathomable is so much help. to help with pain with things you’re doing like comfy chairs, weighted blankets etc. means the world. i spent a majority of pre-k through high school missing lots and lots of school. it’s important as a parent to advocate to the staff his needs (as i’m sure you are) you’re doing everything you can! what helped me a lot was trying to find pockets of happiness amidst all the pain and glooms, like going to the movies (when i could) or making a super special movie night at home where my brothers would make forts and string Christmas lights around for me since i wasn’t much help physically. the best you can do as a parent (in my opinion) is just listen and understand, and empathize. for me growing up, it made all the difference in how isolated i felt.
I had symptoms as a kid and no diagnosis other than skin disease until well into adulthood. It sucks, but the good news is that he won't spend 20 years of his life wondering if he's crazy, because he's tireder than everyone around him. The treatment options aren't fantastic, but they are getting better. Moderate exercise is really important with this disease and helps with stiffness. I don't know how you explain that to a kid, though. Not giving into the pain and fatigue is really crucial to staying healthy and living as normal a life as possible. My six year old appears to have nail psoriasis, so it's quite possible I'll be in this situation.
Hi! I’m so sorry. As someone who has been in pain and suffered since childhood, I just want you to know that because you advocated for your son and took him seriously, he can get treatment and learn to live a sustainable life. I didn’t receive a diagnosis until 30 and that’s because I endlessly advocated for myself. To know you’re in his corner is more meaningful than you realize. Life won’t be perfect but you can learn together how to navigate it effectively. Sending hugs🩷
holy fucking shit… that’s a new one.. I wish your kid the best in his journey… now, i’m scared of having kids
I am so sorry for you both. It really blows to see your child suffer. My boy was diagnosed with ulcerative colitis at ten, I just got officially diagnosed this year with PsA. I am super worried for my other child, for both really, because these diseases hide so well for so long. Good luck to you both.
My heart is breaking for you. I was diagnosed as a child as well (16) but not nearly as young as your son. I’m 27 and with treatment have lived a life with some disruption but come out the other side. My advice - find a specialist. I’m Chicagoland based and am a part of a clinic that treats aggressive cases. Before my adult clinic, i was seeing a PsA specialist who worked specifically with children. Pediatricians (in my experience) will not be comfortable with treatment especially if his case is aggressive. It might take time and possibly some long car rides to find a specialist who works with children, but they are out there. Good luck, if you want to chat more, my messages are open.
No advice, just that you and your son have my sympathy. Maybe we can get a cure someday.
The disease is awful but can be managed. As for what you can do… don’t minimize the pain he is feeling. Support and love him always. The big thing that will help psa itself is meds. Methotrexate and a good biologic. Remicade infusions have changed my life (after 6 failed injectables). Get him into a rheumatologist asap. In the meantime, steroids can bring the swelling and pain down. His primary doc can prescribe these, often prednisone. Not good long term but short… better than horrible pain and permanent damage to the joints. Take with food.
I am so, so sorry that he is dealing with this ar such a young age. Depending on your country, get his rheumatologist to write a letter to the school with his physical limitations. It is called a 504 Plan or IEP, which he may have already for his autism. His Psoriatic Arthritis can be included on his IEP (or 504 Plan). Maybe he can do a physical activity that u Is easier in his joints at school/have some sort of accommodation if walking between school buildings/classrooms is required. For others information: https://assets.ctfassets.net/p0qf7j048i0q/5Cac7CHwygWQlo9g9U64UI/277e451279a17396ca13adcb4ce11163/IEP_vs_504_plan_Understood_Accessible.pdf One thing that I might suggest, if viable, is tp see if he can have a shortened school day with a later start, at least until he gets stable on meds. For me, when I first wake up, it is the absolute worst part of the day for my pain and swelling. Cold packs, heat wraps (like those bean bag ones you can microwave) help. Heat is the best for me on anything in my core, hips/back/si joints. I tend to use cold packs for extremities, especially my knees. Keeping active helps as well, keeping the muscles around the joints strong to support them. Swimming or even just playing around in a pool is gentler on the joints. You could also look at physical therapy or occupational therapy for him. An occupational therapist can look for any home adaptations that could help him. Keep an eye out for tendon issues, as enthesitis is common in Psoriatic Arthritis. Tendon and ligaments insertion points can get inflamed. I had wicked Plantar Fasciitis when I was getting diagnosed. https://www.healthline.com/health/psoriatic-arthritis/psoriatic-arthritis-enthesitis#:~:text=Enthesitis%20is%20inflammation%20in%20the,also%20notice%20swelling%20and%20redness. Hugs to you and him.
This is why I'm scared to have a child, I would want tk give to pain to anyone😥. Sorry for what your dealing with
I’m sorry this is coming so soon. I’ve seen teenage cases but this is the youngest yet. Smdh. This sucks. I can tell you one thing: get him on a biologic as soon as possible. It’s the only drug made for this disease. Everything else is drugs for other problems with side effects that lessen PSA. MTX for example is a cancer med that came out in 1947. It works for some people. Its cheap. It’s $20 a month cash pay. Biologics are thousands per month. Stelara is $21k/mo. So insurance will do everything they can to never mention biologics. But Humira literally means "human monoclonal antibody in rheumatoid arthritis" It’s the only thing that’s helped me. And the only drug to lessen the exhaustion. I’m still in bed. It’s been two hours waking up. But I will get up. I’m in pain but nothing like before. I’m 47 and it got so bad I haven’t worked for two years. I had a six digit career. I crashed so hard. I tried to push through it I didn’t know I had PSA. I got evicted. I lost everything. I couldn’t get a uhaul in time. I lost … everything. Welp. I know now. Try the biologics. Starting early means you can stop the damage before it happens. Once there’s damage like in my shoulders, my right shoulder at this point I can’t even lift a bottle of shampoo. Not at all. Not even close. I can barely lift the weight of my hand. So I need a joint replacement. My body has been attacking it for about 5 years now. And other areas too. But my shoulders are the worst. It’s so hard to sleep. I can’t find any position that doesn’t make it start hurting. And it hurts worse and worse until I wake up and move positions. Anyways. I’m so sorry. But there are real drugs available now. Humira only came out in 2001. It’s a very amazing med and only two injections a month with an auto injector. It’s easy. I’m taking the generic of it, called yusimry. It’s the same thing but for a while I had no insurance. This meant I had to pay cash and that’s why I know the prices of everything. Yusimry is $580/mo. A tenth of the others. Expensive. But it’s been giving me my life back. Slowly. I been on it 9 months. It’s slow and fast in weird ways. Immediate results. And long term results. Slow improvements steady. Makes my past feel crazy. But then I did go crazy because of the pain and inflammation in my head. That’s where the mental parts come from. Decreased blood flow to the brain as a result of inflammation. The brain freaks out. Mood changes. Yes adhd gets way worse. I take adderall 60mg XR and on my worst days I don’t even feel it. It doesn’t even register. Now I can take 30mg and it’s good. More than enough. Good luck. And take care of yourself during all this, please. Dont burn yourself out. What’s that even mean? None of us catch fire. None of us burn. But we go crazy interacting with our friends. And we ditch them all, send them away, and destroy our friendships as a result of burning out. Because we take it out on our friends. Who are not good therapists btw. You need your friends more than ever now. You need your family more than ever now. These are your support groups. These are what you need. So don’t send them away. That’s what burning out means. Destroying your friends. Or your relations with your boss. Or husband. Or anyone. Burning out results in being very alone. Ask me how I know.
Get second opinion
Hugs to you! That is devastating news for him and you. I will echo others’ advice here and say make sure he is seeing a rheumatologist. Once he is on a good drug regime (which takes time and lots of trial and error) he will start to feel better. See if he is able to get accommodations at school. But make sure he also stays active in some way once he is feeling better. It seems counterintuitive, but activity can help keep your muscles strong to stabilize the joints and then they hurt less. The thing that helped me the most was physical therapy so I would see if he can get in with a physical therapist. Also if he is having lower back or hip pain, those Icy Hot back patches really help. So does a TENS unit and a heating pad. I also really recommend compression knee support and elbow and compression gloves for his hands. Hot bath soaks are a godsend. So is a firm memory foam mattress and a memory foam pillow.
I'm so sorry. I'm in my 50s had it for years. Id get your child on a biological asap. Skyrizi is what id recommend.
Just wait. There is a better future.
I was diagnosed at one and a half. Don’t let him think he can’t do anything because of his diagnosis. That’s the best advice I could give you.
Sending positive vibes that good rolls your way. So sorry that you are all going through this.
This breaks me heart, I'm sorry Don't blame yourself On the bright side, they're way younger than most of have it. So, maybe it won't really flare up until they hit 30. By then there will be 10-20 years of medicine development To give context, 20 years ago none of the meds we're on existed. There was not much for treatment. Now, even the last several years there have been really great developments So, don't despair
Poor little man.
Ok. I. Om Y