Have you tried complementary/alternative treatment?

OZange

Hi, I am new to this forum and so happy that I found this place where families of kids with JIA can talk and share. I live in Australia but hope it is ok that I join your conversations.

I am a mother of a 3 year old boy who was diagnosed with oligoarthritis in his left ankle when he was not even two. Since then we have been through 3 steroid injections and medical treatment with Naprosyn and Methotrexate. In dec they have discovered arthritis in other joints too, so now they are considering biologics.

I always feel very uncomfortable with the idea that my little son has to take so many drugs at his young age. I have been reading a lot about complementary and alternative medicine to support my son’s treatment and make his live as healthy and painless as possible. We are making sure he is eating a healthy diet, lots of fish for omega 3 and other healthy food they recommend for kids with arthritis. We even tried homeopathy, but it didn’t convince me, but maybe that was the homeopath who wasn’t giving me a good feeling, I should give it another go. In generally I find it really hard to get good information on alternative treatments.

Has anyone of you had experience with alternative ways to support your kid’s treatment? Do you avoid certain foods, do you give certain foods more often? Do you see benefits in homeopathy or have you tried chinese medicine? I am open to hear about other ways that help our kids. And if you have links or literature where I can find more information, I am very interested in hearing about them too.

Thank you very much for your help!
Angela

MumV

Hi I am sorry to her about your little boy, my daughter has JIA polyarticular and is now 20......currently she is leading a great life at Uni, where she has joined walking/climbing clubs...is starting up an orienteering group and rides her bike as transport....

She is, as you have probably gathered ...on a well spell...fingers crossed and positive vibes....

She advocates keeping busy, surrounding herself with friends, laughing a lot and mainly in her words " when I am happy I seem well"...a type of alternative therapy...

It wasn't always this way ( I have posted previously "hospital visits" and "School and JIA"), with more details of our struggles and constructive thoughts, so I won't type again here.

Initially, or while there is a "flare" control is definitely the key, as preventing damage to joints is crucial. In the UK in children, they like to have two years flare free before they reduce/stop treatment (my daughter is reducing presently...positive thoughts for her...), she has just returned from a walking week in the snow in the UK and is revising for year 2 Uni exams..Go girl!!

I am sorry I know nothing about biologics as we have not been prescribed these. Below I have found some links you might like to take a look at.



http://www.arthritisresearchuk.org/arthritis-information/complementary-and-alternative-medicines/complementary-therapies.aspx

http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets/main_content/Biologicsfactsheet2011.pdf


"Arthritis Care shared a link.
11 hours ago
Do complementary therapies help you?
vhttp://www.bbc.co.uk/news/health-20937753

Alternative arthritis care queried

Few complementary therapies help arthritis, say experts who have looked at all the available trial evidence."


I find Face Book (Arthritis Care and Arthritis Research UK) very useful for
following stories and latest research reports, as a parent you feel on the outside looking in, I believe the only people who can really understand are others living with Arthritis, I am eternally grateful to others sharing their experiences, for me I can write the words, and have observed the child in pain, but do not truly know.
If I could I would trade places with my daughter, and take it away from her, she is my heroine and an inspiration to me.

Kind regards and positive wishes to you, your son and family.

My heartfelt empathy and deep respect goes to all who live with Arthritis, only you will truly know, but we can all care.

OZange

Hi MumV,

thank you very much for all the information and good to hear that your daughter is doing so well. I love her positive thinking and how active she is. We are trying to teach our son the same. He is still too little to fully embrace it, but his warm and happy soul is helping him a lot.

Australia doesn't offer near as much information on JIA as you find in the UK (unless I haven't found it yet). So a lot to read for me there. Great

Have you and your daughter made good experiences with food? I make sure my son eats oily fish regularly and has enough Vitamin D, E. I have read a lot about food you shouldn't eat when you have arthritis but not sure what to think about it (appart from junk food and heavily processed foods of course). Does your daughter avoid certain foods?

Thank you so much for your reply again and all the information you connected me to. You helped a lot already!

I wish that your daughter keeps up her positive mind and good spirits for you too.

MumV

Hi,

Food and my daughter, go hand in hand....obviously as she is away at University she is catering for herself...... :roll:

On her walking weeks, they eat lots of carbohydrates, pasta, potatoes etc for energy, she loves her food they cater for each other.

As a family we have always been interested in healthy eating, lots of fresh vegetables and fruit, beans and pulses we are and she is vegetarian, I don't believe we altered our/her approach to eating and believe because of our approach she is quite well tuned into her body, from observation she now naturally eats more yoghurt and drinks full fat milk, Methotrexate will have an impact on bone density, her continued activity (putting impact on her bones without joint damage) and eating habits should hopefully go some way towards counteracting this.

Our Rhematologist did not seem to believe change to diet would make any difference.....however all the things you are doing..are what we should all be doing if we want to be healthy, and therefore you are teaching your son to do this naturally as he grows.

I know this does not answer your question, I believe the answer is variety and balance of the food groups not to much of one thing, and defiantly some treats. .

If you are adding supplements the advice is always, speak to Consultant/GP/pharmacist to check there is no interaction with medication, or prevents it working.

I know how you feel about putting drugs into your child's body, we were advocates of "only when really necessary" and my other daughter and her dad is healthy, I barely take anything other than paracetamol.......however I now praise medical science and hope it evolves to the extent that a cure is found......without methotrexate...where would my daughter be today, certainly not climbing mountains and leading a normal life. (Yippee)

Early intervention is crucial...stop Arthritis in its tracks....hopefully re -boot their over active immune system......(our bionic children).......and maybe.......gain remission, it can happen!!!!

Keep up the good work, you sound like a great mum, keep reading, don't scare yourself with all the details, keep talking, and slowly educate those around you about JIA. Oh yes they will be eternally young as they will always keep the label Juvenile!!

Young AND Bionic for ever!!

Good Luck with Biologics.

Kind regards MumV

OZange

You are right MumV, healthy diet is the key for all of us. I started to add more of the stuff that is said to reduce inflammation, Vitamin E, D and try to reduce processed food as much as possible. I also started giving my son green lipped mussel extract. Our rheumatologist said it was fine to go with MTX and Naprosyn. Not sure if it does anything, but it doesn't harm, so worth giving it a go.

We are having our next appointment with our rheumatologist on Monday. That might give us a better idea if we have to start biologics. Really hope he says no more joints are affected and inflammation levels went down.

Thank you so much for your support and the kind words.

Wish you and your daughter all the best and much fun for her in the walking/climbing clubs.

All the best!

stickywicket

Hello OZange. I've nothing really to add to what MumV has written. (She's good, isn't she ?) However, I did want to add my welcome to you to these forums. I'm 66 now and have had RA since I was 15. I have a 3 yr old grandson and I know how devastated I'd feel if he got this disease. However, there is life - and good life - after diagnosis and I do hope all goes well for your little fellow.

OZange

Thanks stickywicket! It is good to hear all your encouraging words. It is too easy to just see the negative side of this disease. But after all my little one is really happy and such a fun loving soul. JIA hasn't changed it and we will live with it. Life with a 3 year old is too exciting to worry too much .

MumV

Hi OZange,,

Thank you for your returned support and wishes. I like the sound of all the things you are doing for your little 3 year old, what a lovely age, what a fun time. You are building a wealth of good advice you are sharing with others, thank you.

Good luck on Monday, hope the appointment goes well.

I am with you on a great and positive outlook, it does work and rubs off and pays off, even when times are tough;but the "negatives" of the disease (even that word makes you shudder), can really get to as a parent, you kind of hold it all inside to keep your child happy, when really you just want to scream.....sorry. The main thing I found helped me through when I found it hard was telling myself, "look at the child, not at the disease, and all those worse case scenarios that go through your mind, look at the child...she copes better than me, look at the child not the disease".

Through the adversity of living with this disease, my daughter has definitely learnt to focus on what she wants to do, and what is unimportant. It has definitely given her an inner strength. If you see intolerance or impatience, it is probably justified as sitting and waiting can be painful( and you cannot see it), and ther can be a general "just not feeling right".

Below is another link for a positive leaflet lives of teenagers (yes I know it's ahead of time for you but I only just found it.....wish I had found it earlier)


http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/Booklets2/main_content/Breakout2011.pdf


I hope you get some replies about eating different foods....maybe you will be armed in a few years to write about what has helped your son, when he is off living his life, and you are wondering what to do with yourself, like me, he he, just joking about that, but I do hope so!!

Stickywicket, is the one who has helped me with my inner niggles more than she will ever know, and I am most sincerely grateful to her replies to my outpourings!! Thank you Stickywicket.

Have a lovely time with your little boy time will fly by so quickly. Why don't you put a post on the face book pages about different foods, it's worth sharing. .

The Face book pages are worth a look as you get regular updates on your news reel!! (I think I am addicted to Face book!!!! He he).

Take care, we have snow on the way here in the UK forecast to last 2 weeks
I guess you will have lovely lovely sunshine.

Kind regards MumV

stickywicket

That was a lovely, kind thing to say, MumV. I don't think I deserve such an accolade (I certainly don't remember 'inner niggles') but that's what we do on here. I'm very grateful to others for all their care and generosity with their time. This is a good place.

MumV

Hi Stickywicket,

You do deserve praise in the way you reply to people on here. For us Parents we appreciate you sharing, well I do, how life is, and has been and can be, you give us hope for our children/ young people. You don't know what my worries are! But by sharing your life you have all but ironed them out!!

Your words are great, and yes this is a good place.


I hope things are good for you, I appreciate completely pain free is a luxury for most on here.

Kind regards MumV

PS I use my face book to get updates from my local paper, arthritis Care, Arthritis Research, my Brothers Charity work, woodland Trust, my daughter at Uni, the ladies I used to work with, and a few other people, it is good as you control what/who you want to include/ how you want to use it.