Alternative Medicine and Joint Pain

When faced with a chronic condition you are always on the lookout for something that might help.

So what do you do when you hear about acupuncture, reflexology or some other form of alternative medicine that claims to help with joint pain?

Simon Singh has written a number of books about science, and I’ve always been impressed by how thorough he is and how well he can explain complex topics.

Most recently he has written Trick or Treatment? Alternative Medicine on Trial. After watching the 15 minute ABC Fora session featuring Simon (view below), I plan on getting the book.

If you are working with, or considering working with a chiropractor, the book presents information on chiropractors that you may find relevant. An article by Simon Singh published in The Guardian has some very specific claims.

Link to the ABC Fora page: Choose Your Poison, July 2009

A description of Trick or Treatment from the book’s website:

In Trick or Treatment? the truth about the efficacy of alternative medicine is rigorously addressed for the first time by the scientist uniquely qualified to do so: Professor Edzard Ernst, the world’s first professor of complementary medicine. Having spent over a decade at Exeter University meticulously analyzing the bewildering evidence for and against alternative therapies, this former practitioner of both traditional and complementary medicine brings no bias to the subject.

Writing with him is the respected science writer, Simon Singh, who also brings his considerable scientific knowledge and scrupulous impartiality to this most controversial subject. Together, they deliver a hard-hitting, yet honest examination of more than thirty of the most popular treatments, such as Acupuncture, Homeopathy, Aromatherapy, Reflexology, Chiropractic and Herbal medicines.

Whether you are an ardent follower, sceptic or just plain baffled by the subject, Trick or Treatment? is a groundbreaking guide which finally lays to rest the doubts and contradictions that have dogged this subject for so long. Written with authority, integrity and clarity, this book delivers the ultimate verdict on alternative medicine.



How To Get Resources for Your Child At School

At the parent group today one of the mothers celebrated that after four years her daughter finally had a lap top at school.

To a lot of people it would seem incredible that a child in chronic pain would have to wait that long.  There are resources out there but it can take a huge effort if you don’t have the right words on the right bit of paper for the right person.

In this case the process for change followed these steps;

  • The child had an assessment by her specialist.
  • He wrote a letter to the school outlining the child’s condition and the effect this condition would have on her.
  • The specialist wrote a referral for a private occupational therapist to visit the school and make an assessment of the school environment.
  • The occupational therapist then produced a report for the school on the changes that needed to be made for the student to fully participate.

The school explained to the family that once the school has the report it must act on it immediately. Apparently there is considerable accountability to Disability Services once such a document is tabled.

In this case all the efforts to lobby the school for extra support had not been effective.  It was not until the family asked the specialist to assist that action was finally taken.

The assistance children can access depends on many factors-

  • The time and energy parents have to knock on doors and ask for questions. (Are both parents working full time?)
  • Access to a specialist with a willingness to assist. (Do families understand that their specialist can help?  Is that person approachable and helpful on this practical level.)
  • The attitude and internal resources of the school. (Some schools have experienced caring staff who will help.)
  • Resources within disability services in that particular area.

If your child needs extra resources at school you might try the process described above.

My husband also recommends writing a letter to the school Principal describing your child’s needs and asking what you need to do to access the available resources – from the school and any related government agencies.

I’d be interested to hear how you have tackled it and what your experience has been.

PS. We had a lap top provided for our daughter by the Centre for Inclusive Schooling. We found these people difficult to deal with.  Once it was too difficult for my daughter to attend school we transferred to School of Distance Education.  Our daughter continued her education from home. The Centre for Inclusive Schooling then asked for the laptop back.  Apparently she could only have a lap top if she went to a day school. Good one guys!



Peer Training for Parents of Kids In Pain

I think parents of kids with chronic pain need some form of training as well as peer support.  I’d love to be part of working out a model that can be used anywhere.

This is what I would like to see.

I am imagining a programme where parents who have raised children with chronic pain are recruited and trained in the latest research in helping kids in pain.  This would provide a valuable mix of theory and experience.

These parents would then run a workshop every three months or so for any new parents coming through the hospital system.

A Parent Friendly Code
I’d like to see a very parent friendly realistic training set up.  I think of identifying a set of common situations and giving them all a colour.  Code Red, Code Blue etc.  I’d develop a big fridge magnet to remind parents of the code colours.  That way parents can speak to each other in their own short hand and navigate their way through tough situations.

I imagine parents might suggest to each other, “Hey could this be a code blue situation”.  Parents agree to just consider the possibility and decide whether a different approach might be better.

Use Social Networks
I would like to see a community development model applied whereby each new group of parents are encouraged to form there own social network and meet again every few months to discuss what issues they have been able to identify and diffuse.  They might add new code colours.

Perhaps the full time care parents could use Twitter as a way of keeping in touch and chatting to each other about how they are going using the techniques they have learnt.

Help In Many Forms
I think this would be helpful in a few ways -

  • it would break the isolation parents feel when they are home caring for a child with chronic pain
  • it would provide a positive peer group to reinforce using coping techniques and self care
  • it might help to support couples staying together by encouraging people to identify predictable pressure points for families
  • it would give parents a framework and shared language for approaching problems.

What do you think?  I really believe that parents who understand the pressures can transform the experience for others.  It is a very dark road and it doesn’t need to be.

Summary
Here is a summary of what we might do -

  • Find experienced parents interested in working with parents new to having a child with chronic pain
  • Organise a review of research about parenting kids in pain
  • Develop a workshop for parents of kids with chronic pain
  • Run the workshop for new parents led by trained experienced parents


TMJ – Arthritis and the Jaw

I’ve just published an article by physiotherapist Kerry Read about arthritis in the jaw.

Kerry first responded to Christine’s TMJ story about her daughter in Rachel and Her TMJ Journey.

“Hi Christine,
I stumbled across your post and wondered if your daughter is still having problems? I am a jaw physio and know how difficult these jaw problems can be when you have an inflammatory arthritis. The usual type of physiotherapy approach can often be way too much and actually counter productive.
I am hoping you are getting some good solutions now she must be around 16 yrs old, but just wanted you to know that she is not alone, and she hasn’t exaggerated her pain.”   Kerry Read

I asked Kerry if she would consider sharing some more of her insights with us to help parents learn more about the condition and strategies that can be helpful.

My thanks to Kerry for taking the time to write for us.  Here is her helpful article Arthritis and the Jaw.



Pediatrician’s Guide to Ehlers-Danlos

Every time I meet a parent whose child has Ehlers-Danlos they tell me how many years and doctors it took to finally get a diagnosis. This condition is not widely known or understood just yet.

Armed with the right resources each of us can help educate doctors about the care of children with Ehlers-Danlos.

The Ehlers-Danlos National Foundation have published an excellent checklist of things that you might want to get your child checked for.

This is prepared in a PDF so it is easily printed out. Ehlers-Danlos Pediatric Summary.

By sharing this information with your doctor you are helping spread the word about Ehlers-Danlos. This may help in the early diagnosis of other children in the future.



Growing Up With Juvenile Arthritis

I’ve just published a story by Cathy Cottam about growing up with juvenile arthritis.

It is so interesting to see the universal themes come into our lives when joint pain is the problem.

Cathy reflects on the types of issues that came up for her when she was at school. After reading about some of these experiences I have to admit feeling a little relieved to see that it wasn’t just us. We had lots of difficulty negotiating sport and physical education side of things.

People really struggle to come to terms with something they can’t see. If they notice that a child can run one week they don’t accept that the child may not be able to run a week later.

Kids who suffer fatigue are often regarded as lazy or uncooperative. If that same child had a sling or bandage to show injury they would be treated with more care and consideration.

Children with arthritis experience many occasions when they feel they are not believed. This is a difficult one because any normal healthy kid will try to get out of things they don’t like by saying they are sick. It can be a challenge for parents and teachers to work out when to back off and when to push a little.

Even people who know the child well like a parent or class teacher can sometimes get it wrong. People who don’t know the child well, like the once a week sports teacher, are even less likely to make a good call.

I found reading Cathy’s story comforting. It clarifies for me that despite these difficulties, it is possible to lead the life you want to.

I recommend you check out Growing Up with Juvenile Arthritis.



Ordinary is EXTRAORDINARY

The ordinary is the new extraordinary. Have you noticed that the ordinary things that we do are now seen as extraordinary.I am a housewife and everyday I take the steps of becoming extraordinary in doing just ordinary things. Being a housewife I treat each day like I have a spring in my step and I challenge myself to achieve great things by completing the ordinary tasks well. The degree of difficulty I have behind the spring in my step is my twin daughters have Ehlers Danlos Syndrome, EDS, so my message to you all know matter how difficult some days get, I challenge you to make your ordinary day EXTRAORDINARY and add a dash of PINK into your world…I have entered the SMITH’S “Do us a flavour” competition here in Australia and I am hoping to become one of the four finalists. My original flavour is PINK Rock Salt. I will keep you all posted. PINK has a lot of meanings to different people, so what does the colour PINK mean to you?



Comedy for Comfort

Just in case you were feeling a little down today, just sit back, relax and have a laugh with Dustin from Washington D.C.

Dustin called me today from D.C. and wanted to share with me what helps him get through the day.

Dustin Wood lives with EDS too and sent a YouTube link.

You may hear words from people that don’t really fit in with your personality. We all hear those harsh words and it is up to us to to file what needs to be filed and take on board the best parts of those conversations to enhance our own D.N.A.

Living with E.D.S. is invisible and it plays on your mind, some days.

So today is the day that you take ownership of your D.N.A and build a platform for your personality. Greatness comes to those who have the desire to grab. WITH BOTH HANDS!

Check out this.



Those Ouch Moments

When we gather as a group of mothers and talk about our experiences parenting kids in pain it is common for one of us to cry.

It’s wonderful and welcome for some honest emotion to be on show. Everyone can relate to why this parent feels sad or overwhelmed – we have all felt the same at times.

There are another sort of tears that come from what I call ouch moments. These tears fall like a tropical storm – enormous splashes with each drop.

They come from the recollection of times when something small happens and it pierces our coping and shoots straight into the heart.

Once my daughter was in a very painful flare up time and her school musical was on. The stage was full of dancing, singing, smiling shiny teenagers. My daughter sat to the side of the stage looking tiny and ghostly pale.

I felt overwhelmed with envy for health and normality of the other kids. These feelings took me away from how gutsy my kid had to be just to show up that day. It was awful jumble of feelings.

Sometimes ouch moments can be brought on by a few innocent words. Once someone was showing us over equipment at the Independant Living Centre. As we walked past the wheelchairs she said, “oh you don’t need those yet”.

The word “yet” ricocheted around my head to such an extent that I struggled to find my way out of the car park. (Our specialist later said he felt it was unlikely that my daughter would need a wheel chair.)

Ouch moments can be accompanied by all manner of difficult emotions – envy, fear, shame, embarassment, rage and feelings of competitiveness can all show up.

We all go out into life wanting everything to be perfect for our kids and when it isn’t, well it hurts like hell. The hurt is felt in little tiny windows of pain.

That’s why getting together with other parents is so helpful. Sharing ouch moments can normalise and neutralise very difficult feelings. The tears then become a spring of joy and laughter.

If you are feeling too sad and the hurt is too raw to talk to other parents maybe a counsellor could help with some of this heavy lifting.

Then perhaps later you will find yourself friends who understand what it is like to parent a kid in pain and you will feel joy again.



Ehlers-Danlos And Your Eyes

There is a world of difference between information about a condition that is text book and information that is written by someone with personal experience.

Sometimes you get lucky and you find a professional with personal experience.

I recently came across a great blog post on The Eye Doc Blog that talked about Dr Diana Discoll’s address on the ocular effects of Ehlers-Danlos Syndrome (EDS) at the Ehlers-Danlos National Foundation meeting in Houston last year.

Dr Discoll has Ehlers-Danlos and she was able to put together information that people with Ehlers-Danlos can print out and take with them to their eye doctor.

Follow this link to The Eye Doc Blog.