Permanent treatment for arthritis

[Montaha]

Hi good folk

my 12 years old daughter has arthritis today she is going to steroid injection on her kne and elbow .please if there is way to get rid of this disease whatever it cost we are ready to pay.

[bpeal1]

It’s very hard to see children suffering, but unfortunately there is no cure. Are you in the UK? If so call the NRAS helpline 0800 298 7650, they will be able to explain the treatment pathways. Also make sure you talk to your daughter’s Doctor, tell them how you feel and ask what the long term treatment plan is.

[Montaha in reply to bpeal1]

No am living in Iceland.

[strawberry567]

So many advances have been made so far I hope that eventually better medications and even a cure will be available. Stay positive - as long as you follow your doctor’s advice and keep to the treatments your daughter will grow up to have a happy active life ❤️ My granddaughter of 5 has a weekly injection and then another one as well every 2 weeks for her eyes. Her parents use an epipen which does not hurt her - or so she says. The illness is under control and hopefully there will not be flare ups. Certainly she shows no signs of slowing down! I hope she will eventually go into remission.

[Montaha in reply to strawberry567]

You have no idea how we feel when her docter said she need another steroid injuction we were crying un able to control ourself it is most hard time in our life ،the treatment she is taking its second one she started with Methotrexate it was very bad for her then docter change it to amgavita but, still not helping her.she is very tride psychologically 😒

[strawberry567]

I know the heartbreak. My son, his wife and I have been overwhelmed. I was devastated when my five year old beautiful grandchild was diagnosed in March. So devastated that I couldn't cry and I didn't sleep for days. She had to start taking 2 steroid tablets daily (which she hated because they were large and she did not like the taste and then she had to have steroid eyedrops - she has uveitis - the inflammation of the eyes which untreated would lead to blindness . At first the eyedrops were every hour and slowly they were reduced. Thankfully, the tablets were stopped last week and the eyedrops were dropped the week before. Instead she has a Methrotexate injection every Friday for the general arthritis and then every two weeks she also has a biologic injection - Adalimumab - because the Methrotexate cannot deal with her eyes. After the initial pain and rebellion over the tablets she has settled into her routine. She finds the hospital appointments boring through now they are not so frequent and the school has been wonderful in administering the eyedrops when she needed them. Schools will help children with any illness now by ensuring they receive their lessons via Zoom - the pandemic has brought that technology forward. So your daughter will not fall behind in her schoolwork.

If you were to see my granddaughter now you would not find anything wrong at all. She has so much energy and is so active that the physiotherapist did not think that she needed special exercises. Currently she does "Ninja" classes but when they move to their new house she will start on her swimming again (she is a good swimmer) , acrobatics and ballet. Ironically her ballet teacher developed Rheumatoid Arthritis after the recent birth of her little girl so she understands about my granddaughter and has stated what all the experts say - movement is important to keep the joints flexible. Methrotexate does not work for everyone and there are a lot of alternatives that can achieve a good result. It is just a question of being patient until one is found. The doctors are doing their best for your daughter so she does not suffer joint damage and can look to a positive future. They are developing new and better medications all the time. Obviously if you are not happy with the treatment and can find a better local hospital then you can go to it. Twenty years ago your daughter would have ended up in a wheelchair. That will not happen now if she is looked after properly. With all the research there is tremendous hope for a cure. My initial reaction to my granddaughter's illness was to go online and do a lot of research into the illness, about remission and there are two wonderful groups out there with plenty of information and help /support for you. The first is JIA.org. I phoned twice to ask specifically about outcomes, hopes for the future etc . The ladies i spoke to both had JIA and yet they have achieved so much in their lives. On the website there are details of young people who have achieved great things - degrees and careers eg a doctor, a volcanologist, a model (!) who also gained a degree etc. They travel and live life to the full - more than others who have no illness. A good life is now possible whereas twenty years ago so many ended up in wheelchairs and blind .

It seems overwhelming for you at present and certainly cry to let out your grief as I did but then take all the practical steps to help yourselves. So phone JIA :01628 823524 (number is on their website). You will feel so much better when you talk to them since they have the experience and the sympathy. There is another organisations called CCAA with lots of information on support groups and support weekends for families. Once you are with others who experience similar things you will feel better. So will your daughter who currently feels she is alone. Ask the JIA people as to what you should do to help her not to sink into depression. Life is there for her - to achieve a career, get married, have children etc The worst part is now - it will get better.

Can I say that I have a son who developed schizophrenia 22 years ago. He was the top boy at school, , musical, artistic and handsome. Everything was open to him. He and went on to gain two Masters Degrees - one in Aerospace Engineering from Bristol University and one in Computing Science after he developed his illness and whilst on heavy medication. He worked for a number of years but his life has been punctuated by psychosis and 7 or 8 hospitalisations - the last one lasting five months As a result of that he has realised that he cannot work full time because it brings stress and stress lead to the illness. When he first developed the illness, I was like you - willing to give every bit of money I had to find a cure for him. There is no cure and no hope. He lives on dreadful anti psychotic medication (he went through all of the different medications with horrible immediate side effects) . The medications are 70 years old - no new ones as yet and toxic to his body. It is well know that the anti psychotics kill them - they die "twenty years younger". He cannot work so he lives on benefits and recently his benefits were cut by a huge amount. For 20years I gave him a huge amount of financial aid but I cannot afford to continue since I retired ten years ago and need to keep money now for myself He lost most of his friends . He has one male friend who does not live close by and a girlfriend but she has a lot of mental health issues so i cannot say that the relationship is an easy one. My heart broke 22 years ago for a brilliant talented young man - his future destroyed and now living on the edge of society. and now I have a little grandchild with a current incurable illness.

Two serious illnesses in my little family. I don't believe in god because of what has happened to my son and now to my granddaughter. However. in her case there is so much more support and far less stigma than my son has faced. . With JIA there is a lot of support, the hospitals and doctors give good advice. My granddaughter is going to two hospital in Oxford - the John Radcliffe and the Nuffield and they are world leaders in medicine and medical advances. She is so amazing - now she does not need her tablets she does not mind the injections - the Friday for injections is the night when she gets treats. . Currently the second injection makes her feel tired but she perks up. Her positive and enthusiastic nature has lifted my spirits and those of her parents.

They are looking for the right medication for your daughter and when they find it her illness will be controlled. Stay positive. I have had double heartbreak but in my granddaughter's case I know that she will have a bright and happy future. So will your daughter. The doctors are not giving up!!!! You can always get a second opinion but each child is different so not everything will happen straight away.

Lots of hugs and love to you all.

[Montaha in reply to strawberry567]

oh dear what a hard time you passed throgu? i read your story mor than 2 times i dont know what to say really your son story made me crying am really sorry for him and for you. I wish all the best for him and for your grandchild.in fact i live in Iceland as you know Iceland is a small country with small population maybe you dont belive we have only one doctor who is spcialist in kids arthritis (the doctor did her best to find the treatment , but till now the midication did not help her last thursday theyvtook blood sample to find out why the midication she is taking not helping her the result take ariund 2 weeks so we will wait for the result . it is not easy to contact her doctor as she is the only one in Iceland she is busy most of the time not easy to find an appointment with her long waiting to see her when ibasked for phone call she call after few days.thanks for sharing your story

[strawberry567]

I didn’t realise you lived in Iceland. I am sorry that you have such few medical facilities. Is there a parent support there ? I am sure you could find one online and discuss with others in Iceland what they do. Or try and set one up. Just sharing with others helps. I joined a support group and then did voluntary work with mental health and in the process I made one very good friend who understood my situation. Most people who don’t have issues cannot truly understand. I became seriously depressed over my son and sought help from a therapist which allowed me to work through my grief.

There are so many people with different problems but children and their illnesses are the worst. Your daughter also needs help and reassurance not just to deal with her physical pain but also her emotional one. I wonder what other parents of children with JIA do in Iceland?

Do they travel to a nearby country to consult with a medical expert? It seems shocking that in such a relatively rich country you don’t have enough help. The most important thing for your daughter is to find the right treatment so she does not suffer joint damage and if you can afford to travel somewhere where there is excellent help you might find that would set your minds at rest. My granddaughter also has regular blood tests to check how the medications are working but she is lucky to have such an excellent medical team. Don’t give up. The main thing is to look after yourselves because you need to be strong for your daughter so she does well. All my thoughts and best wishes are with you,

[Montaha in reply to strawberry567]

People here are wondefull the thing is that they are less experience because of the small population .imagine if the doctor of my daughter left to her country what will happen who take care of all kids with this kind of diseases ??? it is really disaster.there is a group for parents of kids with these diseases they never share their stories !!! some times i wrote about my daughter feeling thinking they will share their kids feeling, but they didnt !!!

[strawberry567]

Well if ever you just want someone to listen to you please write to me. I find it strange that people don’t share their feelings. I hope the doctor remains in Iceland and that another one will come along as well. I am thinking of you. 🌸🌸🌸

[Montaha in reply to strawberry567]

Thanks so much .you really gave me great support.your words give me power .i really appreciate it.GOD BLESS YOU.