Son just diagnosed

56lu25

Hi Everyone

I'm mum to harry 12 who has been diagnosed with arthiritis today . He's been referred to a reumatologist as they unsure what type he has. Apparently his symptoms are strange and confusing :roll: It began 6 months ago when he started getting swelling to his knees, ankles and calves, but over the weeks it has spread to his thumb joints, back, neck and shoulders. I think whats confusing them is that he can have the swelling for a day or a few days and then it's gone before it returns again.

I'm just looking to hear from people who are going through the same thing. How do you cope with it ? Especially with the tiredness. Harry is completly drained constantly and spends all his time lying on his bed with no energy and has lost his zest for life. Of course now he's back to school and he's struggling. I am so devastated because he loves his sport (being dyslexic he struggles academically), he just got signed up to a local semi-pro team and the arthiritis is stopping him from playing. Will it always be like this. Life feels like it's really dealt him a blow, something he can excel at when he finds school so hard and now he can't even do that.

Thanks for reading guys

xx

elnafinn

Hi Louise,

I am very sorry to read your thread. I am sorry I cannot help but I do send you my heartfelt sympathy.

Lisa11 has posted recently about her 12 year old - I will bump up her thread for you in case you have not seen it.

I do hope things improve for you all soon and that you are able to "speak" with other mum's on here in similar circumstances.

Luv
Elna x

valval

hi feel for u both it does make u exhausted when meds working feel much better so fingers crossed once they get him sorted he will get back to his sport good luck and (((big hug)))

elnafinn

Hi Louise

Bexmum has posted on the young persons zone about her 12 year old daughter who was diagnosed at the age of 3 and their story. She is such a brave girl along with her mum and they have quite a story to tell of their journey together in all this, so far. I hope you will be able to find and read it and perhaps get in touch. You can always private message her.

I was extremely touched by the thread as I am them all but the 70 injections from her toes to her jaw does not leave my memory. What a brave girl and mother. There is light at the end of the tunnel but fighting for the right help seems a must.

Love
Elna x

eckstardeluxe

Hello and welcome to the site.

I was very saddened to read your post about Harry. I really hope he gets the best of care and attention to keep him well. I have OA and mines also started at 12 years old. I didn't find out until this year until I was 33. I really wish I'd known earlier so I could have prevented the arthur accelerating so quickly and been given the meds I needed.

It is very scary and frightening hearing the words arthritis but through knowledge you learn the key to dealing with your illness and become more aware that it isn't the end of the world as you'd thought at first.

You'll get lots of help and support here, people genuinely want to help you and there is no clique at all. I hope you can continue posting to let us know how Harry is doing.

take care

Eck

xxx

woodbon

Hello, After reading your story about Harry, I wish I could do something to help. Its such a young age to have to cope with these problems and the dislexia, I dont think I can spell that, as well sometimes life just dosn't seem fair. Its good that he likes sport, as it probably means he'll have stronger muscles to help the joints, a thing physios try to teach me. Also it may well be he can still do some of the sports and it will help his arthritis. When he gets a proper diagnosis, he can have medication to help him and hopefully things will improve a lot.

But at the moment, you'r shocked and upset, so you need try and relax as much as you can. I don't have children and I'm 54 with oa, but their are lots of people on here who are young and their is the young Peoples forum for your son if he wants it, maybe it could help you. Also the Helpline, number on the top of the page, is very good if you need to talk. We are hear too, if you feel like getting things of your chest! Good luck, I hope things go well for you, Love Sue

56lu25

Hi Everyone

I wanted to say a huge thankyou to every one of you who has posted me.

It's so nice, when you have got the diagnosis to be able to talk to people who are living with the same thing and can identify with your experiences. It's fabulous to hear from those of you who are experiencing the disease yoursleves because I can only imagine what Harry is physically feeling, and he's not a vocal boy so I find it difficult to know how to support him. Equally it's great to hear from those of you who are parenting children with arthi because you can identify with my feelings. And i realy really really need to know all you can tell me. Coping strategies and how i can support Harry emotionally and mentally as well as physically. I will definatly read and talk to the ladies you suggested who have children living with arti, thank you.


The most positive thing is that Harry is being amazing. We lost my mum to cancer in may, and there have been things he has had to deal with. I asked him how he felt about the arthi and he juust said " I'm ok mum, it bothers me a bit but it's not as if it's the end of my life is it". He's a fighter and a trier. As I'm sure many of the children and adults are on here, it's very humbling.

Will speak to you again soon
Louise
xxxxx

woodbon

hi, He sounds a very brave boy and thoughtful too. The mental attitude is very important and helps us to keep going. Its amazing what people here do. You should read some of the treads on here, someone walked up Snowdon recently!

Take care all of you, Love Sue

elnafinn

Dear Louise

Harry sound such a lovely boy. He certainly is a fighter and trier. No doubt there. I want to send him a big gentle hug and to you too and I hope that you do not feel so alone now with all this and can be in touch with these other mums. Even if you live far away from each other it is that re-assurance that there are others going through similar. It is great that we can private message on here too and things can go on from there - who knows you may arrange to meet each other one day.

Carry on with the good work, you are doing all the right things and please call in any time, we are here for you.

Love
Elna x

debbierose

I'll share some of my love, optisnisum(?) luck, happiness, blessings,and care with your Harry
lol
Debbie

skezier

Hi Louise,

I am sorry Harry has got this. I really hope that once they know exactly what is going on they will get him some meds that will help him to continue his sport and have a chance to be him.

All I can do is send you hope and a ((( ))). Take care Cris x

page35

Hi Harrys mum
i totally sympathize with you.
i have a 13yr old boy, he doesnt have arthritis thankfully, but he is dyslexic and loves sport mostly football. he has Osgood slaters disease which is a problem with his knee, but something that he should grow out of. he had to stop all sport for a while and it was very hard for him as this is what he enjoys and is so good at.
does Harry like swimming? swimming is good for most kinds of arthritis i belive and it will keep him doing sporty things and something he can do with his mates. i have RA and find swimming good.
well the best of luck to Harry and you
best wishes
page
ps Harry sounds like a great lad

frogmorton

Hello louise
Just want to say hello from me.
I am so sorry about Harry's diagnosis
I hope he gets on some meds soon which might help with the tiredness. IS he on any? Feeling exhausted is awful and when you are a young active lad - it doesn't bare thinking about.
As Elna has said there are other parents in your position and unfortunately other kids in Harry's (did you look at the young person's forum?) so you should not feel too alone.
You take very good care
any time we will be here for you both
Toni x