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Our CRPS frustration

I am totally devastated and now even more passionate to carry on with my initiative for CRPS awareness in children. Our Jedi Tedi foundation, which we started when my son Jed was diagnosed with CRPS and we eventually found that the Red Cross War Memorial Children's Hospital was one of the few institutions in the world that could treat these CRPS kids.

This week a mother called us to say that her daughter has had excruciating pain since June and is now unable to move or even sit in a wheelchair. They went to one of the top neurologists in their area and this doctor diagnosed that the pain was in her daughter's head, he never gave any medication and left it at that (he did charge his normal consultation fee)

Now I would like to know if this specialist or most others know what pain diseases are because they actually are in your head, but that does not mean they should be brushed aside as if they are not tangible, they are so real. In fact the pain is known in some of these diseases to be more painful than any other pain known to medical science. How then would a doctor choose not to treat a child who is in so much pain.

And more distressing, this happened to another young girl a few months ago and so many children maybe even daily are being pushed aside because the specialists say they are imagining their pain or that it is in their heads or even that they are autistic. These kids are even sometimes not believed at all. They are said to be ¨spoilt princesses”

I believe that no doctor can or wants to treat these horrid complex pain diseases in kids that seem to be occurring more and more frequently. My son Jed presented with this unbearable pain in Dec 2016, the last child was a year before him at our hospital. Our doctor who diagnosed Jed had never seen it in a child and then 6 months later another child presented with the same symptoms.. and then three months later, the same doctor saw another kid with CRPS. And now there could be one almost every month and still most specialists and doctors do not know what these diseases are or that even exist and if they do would never know how to treat them. The disease has no medical number, so cannot be treated in private hospitals, the medication is not recognised even though many adults suffer from it and it is chronic.

I want to know how anyone can let a child suffer in suicidal agony and not pay attention. How do doctors turn a blind eye and leave it to mothers like me to fight for these kids who are suffering in such pain. Who does this? Who allows this? Who has no feelings?

Is it too complicated for most of them to want to work out. Thank goodness for Red Cross. How lucky we are in South Africa that our local government hospital has taken the time and the effort to work out how to treat these kids and give them their lives back. They are amazing and one in the world! But I cannot sit back and keep quiet about these professionals that can say it is in these kids heads and do not bother to care or treat them in any way, or to at least see that they are pushed in the right direction of care.

We have one doctor in Cape Town who us mom's refer these kids to without them even having to go to a GP, we can call him directly and make the appointment with him, he will diagnose and refer the child to Red Cross. But what about the children in all the other cities and towns. He can't speak to all of them, at the moment he does when we ask him to, he has become our "go to" and he is totally amazing! He does it because he really cares for these kids, they are not his patients. He does not get paid for these consults. Is he the only one?

Who else could say they even know a specialist that would do that. When we met him 2 years ago he had never seen CRPS in a kid before, but he is prepared to learn about it.

Why can't other doctors?

Someone should see that changes are made. Someone should make a noise about this.

We will shout. Jedi Tedi Will shout.

We will look after these kids and make sure they get the help they need.


May the year 2019 bring an abundance of health, compassion, happiness and blessings

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