Jamie and Joy

Yesterday we fetched Jamie in Manenberg. Jamie is an 11-year-old neurological pain sufferer, he is a very mature and insightful young boy, so beyond his years and other kids of his age. We took him to Joy, who is an energy healer and body balancing therapist. Joy heals with an energy that is quite overwhelming at first as you feel her vibrations which are warm and enveloping, you just know that something is happening. You can be skeptical, we all are initially, but you soon realize that it works, no questions asked.

Jamie was excited to go to Joy, overjoyed that he had no more pain since his first session two weeks ago, he was hopeful that he was going to be distancing himself from this dreadful neurological pain disease that he has suffered from since he was 2 years old. Not only is he pain free, but he told us of many positive changes since his first session with Joy. He is now seeing his life without pain and in a whole new, non-stressful light, following his newfound strength, knowing that there is help out there and that people believe in him and can help him repair. The empathy and caring alone is a major factor.

Jamie has been in immense pain with no medical diagnosis for 9 years. His mom struggled to look after him in the grips of the pain and thinking that this would be their lot for the rest of their lives, she had to carry him to school on days that he could not walk. This kind of pain is extremely high on the pain scale, it is registered as the highest pain known in medical science and like CRPS, another neurological pain disease, it switches on for reasons not yet known to us, There is no medical reason for this pain, but it is very real. There obviously is some kind of intrinsic reason why these kids are prone to these nerve pain diseases, but this still needs to be determined. We do know that it is auto immune, which means the body is fighting itself, we also know it is an incorrect message of pain sent to the brain that gets stuck in a continual cycle. We also know that the brain learns to improve on this pain and therefore intensifies, the pain amplifies daily. The pain exacerbates with increased anxiety and lack of movement as it tends to spiral out of control. The lives of these sufferers become unbearable as they are unable to play with their friends, attend school or do any normal activities that kids love doing. Their lives and the lives of their family and friends are held captive by the pain disease and life grinds to a halt.

Depression and disillusionment take over, as they feel like nobody can help them, or nobody wants to help them as medically they are fit and healthy.

This nerve/neurological pain disease is a menace as it can be brought on by stress and emotions and therefore needs the type of healing that can have a positive effect on the emotions, and this is exactly what Joy does. She realigns the inner soul to cope with skills that will enable the kids to overcome the fear and panic of the pain and to realize that with a bit of understanding and empathy they can learn what it is that triggers the pain and they can face this reality with intent to overcome these triggers and have the coping skills to deal with these triggers.

Jamie is a real gem and he has been open to this holistic wellness treatment. He and Joy have a wonderful connection and we realize that her healing works well with these kids in pain. Jamie can vouch for this.

We know for a fact that CRPS can be treated, maybe not always medically but it is known to us that holistic treatments can do wonders for these kids in pain.

As Jed always says: “If we can do it so can you.”

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Shana Kagan

Co-Founder and CEO

Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

What is CRPS?

Laying out Complex Regional Pain Syndrome – in layman’s terms.

Amazing how many of us had never heard of CRPS, and how many still do not know what CRPS is. We’re here to break it down for you…

What does it mean?

COMPLEX, because it is a complex disease. It’s complex to diagnose, as there may be very slight trauma not correlating to the amount of pain, or even no trauma and it can be of sudden onset. It’s complex to treat, as pain medication does not work. Finally, its extremely complex to live with.

REGIONAL, because it initiates in a region of the body. It’s usually a joint, , but specifically, it’s usually the primary joint – the joint most commonly used. In Jed’s case, his left knee was affected.  This caused confusion as he is right handed, but when the doctor said it normally is the primary joint, we remembered that Jed is a leftie at soccer and left-handed batter in cricket…

PAIN. The pain is unbearable and continuous. CRPS-induced pain is the highest pain measured in medical science.

SYNDROME, which is by definition, a group of signs and symptoms that occur together and characterize a particular abnormality or condition.

How to Identify It?

CRPS has 4 important tell tale signs:

  • Discolouration of the skin.
  • Slight swelling or smoothing of the skin, the wrinkles disappear.
  • Allodynia, defined as extreme sensitivity of the skin to the slightest touch, or even air on the affected area. (If my hair brushed against Jed’s skin, he would scream in pain).
  • The affected area is a different temperature

The main one of these four points that identifies CRPS is the Allodynia, a very unique symptom.

CRPS can just switch on. Jed sat on a chair, and when he tried to get up, he was in unbearable pain. The onset of CRPS can be from a slight trauma, a virus, surgery, an injection, or anything that may upset the nerves in that area. Jed had a recurring chest virus. This virus caused a strepalococcus bacteria which then settled in his knee. This bacteria upset the nerves causing them to go haywire. The nerves were knocked out of synchronization, and then began sending the continuous pain message to the brain. This is how the cycle of pain begins. The pain is not on the same level to any pain the patient should actually be feeling, it is much more severe.

This pain can increase daily. Strange things start happening because the nerves are affected, and all the nerves are connected. The pain can spread from nerve-to-nerve, and to all other parts of the body. In some instances, it may spread faster than others. Some CRPS sufferers have full body CRPS. The nerves are everywhere in our bodies – in the skin, muscles, organs and our emotions are connected to nerves. Anxiety causes more pain, and more pain causes anxiety. Jed’s pain spread from his knee to his toes and up to his hip in three months.

It is a known fact that family and friends do not cope well with CRPS, as most do not understand the extreme nature of the disease. The child’s peers cannot understand and are often not supportive. It is misunderstood or even not believed at all.

Why do some people suffer from this autoimmune disease? In Jed’s family history, we know that he has a strange hereditary chromosome which showed up in our amniocenteces during our pregnancy, which we had to have it as we were a geriatric pregnancy. We also know we have a hereditary autoimmune disease in our family, so it could be related to any one of these, but there have been no studies done as to why people are susceptible to getting CRPS. Perhaps one day, hopefully soon, more tests will be done.

We do know that most scientific medical studies say that CRPS cannot be cured. We also know that people (especially children) can be cured. Maybe not scientifically. This may mean they have to literally tap into their emotions and change their mind set to empower themselves against the pain and the disease. That’s where the “complex” may be highlighted. That’s why we’re here to help.

Shana Kagan

CO-FOUNDER AND CEO

Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

If you’d like to find out more about how Horizon Clear can help you, be sure to check out our other blog posts for more information.

If you like what you’re reading, and want to get started on your journey, take a look at the packages and products we offer on our store, by clicking here.

Knowledge is Power

Shana Kagan

CO-FOUNDER AND CEO

Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

CRPS has no cure – true or false?

When Jed was diagnosed with CRPS after many weeks of confusion, no doctor could treat him.  

It was a difficult time as Jed, 10 years old, was in so much pain, unable to walk without crutches, totally anxious about any fast movement around him, talking and attempting suicide as he thought he would be suffering from this disease forever, at that stage all he knew was that no one could help him… but this was not true.

We eventually found the correct treatment and Jed is now CRPS free for 3 years.

We have really pushed all boundaries, spoken to a lot of people and asked many questions from those who have CRPS or had CRPS, or whose kids have had or have CRPS and we have learned many things. Knowledge is certainly power.  We want to empower you with what we have learnt.

We were told that there is no cure for CRPS, and this is on every CRPS website, well we learnt this may be medically true but not entirely the truth. There are many holistic or alternative cures that can and have helped CRPS kids and adults get rid of this disease, but there are no known medical cures, or medical protocols.

There are in fact strange cures for this strange and complex disease. Medication does help not on its own. It is necessary as part of the treatment, but other treatments are also needed.  CRPS is a nerve disease and not a trauma, the body has to learn to calm itself and to realign the nerves. This can be done by the state of mind and therefore, treatments like meditation, life skills and visualization help get the nerves to relax and straighten themselves out to their original position.

So we know for a fact that children and adults can be cured from CRPS, with medication and these alternative therapies, not one but a few that will work with the child’s individual personality. This is not a one-size-fits-all treatment. The child must decide with the support of the parent which treatments are best suited for them and then must be given small goals to achieve every day, and then must try to achieve a bigger goal in a few weeks time, like an outing with friends to an amusement park. It must be a big event which seems unimaginable while suffering from CRPS.

With the help of these therapies they will learn to retrain the brain without any extra trauma, no pain, no pain is achieved and the CRPS devil can be conquered. This is the cure, even after many years of having this disease, even after full body CRPS, even after being totally debilitated and wheelchair bound, we know that these sufferers can get better.

There may not be a written cure or a written protocol for the treatment, there may not be one tablet that can treat this disease but there are various treatments that if you decide to implement and trust, for yourself or for your child, can help. We want people to know that they can flick the switch. Not only with medical help but also on us shining a light on other alternative treatments.

This is not an easy mind switch. I know for myself and for Jed, we were fortunate that all our treatments were done at our hospital here in South Africa, they implemented all these alternative therapies for their CRPS treatment. Unfortunately most other hospitals do not implement this holistic approach. You have to find it on your own accord. We all are conditioned to believe that only medical help is possible.

Many years ago, we thought Jed was very ill when he screamed 24 hours a day. The pediatrician said to us “go to a chiropractor, they may help” as no medical help was improving his condition. With my medical background of working in a hospital as a radiographer for many years, my husband and I were very skeptical about this treatment, and I remember thinking “Oh my gosh, this sounds like hocus pocus.” With this said, it is a very difficult mind switch in trusting these alternative approaches. Jed had one visit and the chiropractor jerked his neck and said he had something wrong with his neck alignment.  We went home and a few days later I said to my husband, Jed has not screamed at all the last few days. We were so used to hearing him scream, we could not believe it. But yes, he had stopped.

When one is desperate for an outcome for a horrid disease we must try every solution, especially since we know that not all doctors are knowledgeable about CRPS or know how to treat it.

Jed’s CRPS prognosis and recovery is a miracle and all the other children that have been treated at our hospital in Cape Town, with the caring and empathetic, medication and alternative approaches. It is important to know that the body can heal itself and once you believe this, you can take the steps in the right direction.  Especially if the disease is neurological as the nerves form the mind and brain.

Some of the doctors that have been with us through Jed’s CRPS journey also believe that they have pain patients that they cannot medicate anymore as the medication has done what it can, now they need other methods of treatment. These patients trust the medication so much that it is very difficult to say to them “Go and look for an alternative treatment,” the doctors do not generally say this to their patients.

Alternative treatments are often perceived as “strange” and not very normal. What I can tell you though, is that they work. If you really want to trust a system, take a chance and try it. We know they work. We know that our hospital uses these holistic approaches and relaxing techniques, like mindfulness, yoga and meditation. They are starting to incorporate these practices in pain management in many clinics throughout the world.

Retrain your brain!

Look in the mirror and repeat to yourself out loud “I AM PAIN FREE!”, take your child’s hand and say “I AM GOING TO LEAD YOU THROUGH THIS JOURNEY AND WE WILL COME OUT ON THE OTHER SIDE PAIN FREE. I PROMISE YOU WE WILL GET THERE” And even though your child has to heal on their own accord, you can certainly lead them in the right direction and encourage them in every way, to get through the pain and to live a completely pain free and normal life.

Just remember, Jed did, along with all the other children who went through this journey here in South Africa and who are all CRPS free.

This journey of ours has inspired us to start our own virtual pain clinic called Horizon Clear, which can help in many ways. We have specialists who know all about pain, who can help with healing, life coaching and other therapies. A very important step in the right direction is looking towards the future and seeing your life without pain. A positive frame of mind is half the battle won, and it is this learning that we want to share with others. This is not a quick fix, it is a slow journey whereby daily goals should be set out and every day take that one step towards a pain free future.

Remember- Jed says, “If I can do it, so can you.”

Jed is now 13 and 3 years without pain.

Let It Go

Shana Kagan

CO-FOUNDER AND CEO

Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

In the many times I have spoken to moms with kids affected by this very strange and insane disease I find it strange how difficult it is for us to go beyond living without the pain.  It is so difficult to let it go, to give it up. It defines us as people, as families. It may make us feel important, or maybe it takes hold of us and it won’t let us go. I have to admit that when they told me at the hospital pain clinic that Jed was not chronic anymore, I so remember feeling shocked and feeling that I was being let down, like it was a bad thing, the disease had become such an important part of us that it was hard to let it go. Then I remember thinking, “Hey, hold on, this is actually not a bad thing. It is a good thing for Jed to be pain free and happy and healthy”. I thought I must let it go. So I did. I let it go…

Jed is now almost pain free for 3 years.

Weird but true. We hang on to the negative, it takes over and makes us feel important, like a devil inside of us, the pain defines us.

We hand out Jedi Tedis to kids suffering neurological pain all over the world, we send them so the kids know that they are not alone and that Jed is better and they can fight to get better as well.  The Tedi are called Jedi Tedis, named after Jed, my little one who suffered from CRPS when he was 10. We send the details on Facebook pages that are associated with CRPS, so we can send these Tedis to the children suffering all over the world, the mom’s supply us with the kids names and addresses and we personalise a brave box with a lot of great goodies for the kids to empower themselves against these diseases, but we had moms who were angry saying we were trying to get money for our cause and that we were in competition with their causes. I remember thinking… hey … we are all here to do just one thing and that is to help our kids get better, to do anything we possibly can to help our kids get better.

We cannot say someone is giving false information if they are saying that their child is better, we should be asking how and why, in the hope that our child may be the next to stop suffering from this terrible pain. I have been kicked off some sites and earnestly spoken to by the Facebook page founders, to keep my Tedis and stories to a minimum.  But we cannot as we continue to strive to ensure that all children suffering, get all the help they deserve. If these kids still need help, especially those that are told they will never walk again, those that are not believed, or those that are told there is no cure, we will be here to help. 

Always know that children have a good prognosis, their nerves are elastic, so keep fighting, and lets get our kids pain free. They deserve this, and that is want we must strive for in every possible way.

We know it is difficult to let it go. But we must, for the sake of our kids.

Pain can take over our lives

Shana Kagan

CO-FOUNDER AND CEO

Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

When our young children are in pain, we have to help. One thing that can keep us moms on the right path is to remember that CRPS and other neurological pain diseases have a good prognosis in children. This is a fact,…a medical fact, as children’s nerves are elastic.

There is no ‘one treatment fits all’, so each child needs to be delicately assessed and then treated within his or her personality traits. This is possible as it has been proven again and again.

Each child is unique and special and needs to be nurtured through their pain to go through their own healing journeys. There is no quick fix, it is a small step in the right direction at a time. Slowly and surely.

A strange but true example is the story of a young boy who recently checked in with pain. He is 11 he has had neurological pain for about 6 years, suffering a horrible debilitating pain that kept him away from school and his friends. His mom, a real hero, was so involved in trying to help him not miss out that she would carry him on her back to school. Why could he not get better?! He was doing it all right,… then the doctors realised that it may be because his environment was deterring his treatment. He was sleeping on a wet, uncomfortable bed, above his bed, the roof leaked. He lives in a shack and there was no space to move his bed away from the damaged roof, so he was always anxious about being cold and wet.

We decided to fix the roof and within a week of the roof being repaired this young boy is pain free…

You must not feel alone, you must get help from those that can support you and hold your hand through this tough journey.

You can beat this!

And as Jed says, “If I can do it, so can you!”

Jed is my son who has beaten CRPS and is now pain free for almost 3 years.