Circle of care: Managing CIDP

How a family’s perseverance brought a child with CIDP to his feet
Paul Lewis
April 10, 2015
By Paul Lewis
Guillain-Barre Syndrome (GBS), first documented in 1916, is the most common cause of acute paralysis in North America and Europe – it is diagnosed 80-120 times per week in Canada and the United States alone.

Some doctors say that it is much more prevalent than reported, as some patients who do not have organ involvement may continue on in pain, thinking they merely have a “pinched nerve” or something of the sort. It is a neurological disorder in which macrophages of the body’s own defense system strip myelin – the fatty covering that wraps around and protects nerve fibers – from axons in the peripheral nervous system. It can occur spontaneously or after certain events such as viral or bacterial infections. It may also result from the immune system’s response to food-borne bacteria (Campylobacter jejuni in 40 per cent of cases), viral infections, surgery or the swine flu vaccination (very rare, less than one out of one million vaccinated).

Also called acute inflammatory demyelinating polyneuropathy, GBS is characterized by a quick and severe onset usually developing into a medical emergency, as numbness and tingling in the extremities progresses from the feet upwards to result in flaccid paralysis bilaterally. It may advance to loss of function in the respiratory muscles, with approximately 30 per cent of its victims requiring ventilatory assistance. Postural hypotension, arrhythmias, facial flushing, sweating and urinary retention are common. If the disorder affects cranial nerves of the face, facial weakness, pain and difficulty with speech – a condition known as Bell’s Palsy – may develop. Reflexes become dull or disappear. Loss of sensation moving in an ascending, or proximal, direction accompanies excruciating pain usually settling into the hips, back and pelvis. Symptoms progress in quantity and intensity for two to four weeks before they plateau – usually as a result of medical intervention.

In contrast, symptoms of chronic inflammatory demyelinating polyneuropathy (CIDP) tend to progress slowly for more than eight weeks and may manifest similarly to GBS, but the symptoms tend to come on more slowly and patients may experience them for longer periods of time without stabilization.

Treatment may involve intravenous immunoglobulin (IVIg) therapy or plasma exchange (PE), otherwise known as plasmaphoresis. PE is a process where some of the blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. The procedure works by removing harmful antibodies contained in the plasma from blood.

Gradual onset
The departure that one family experienced from their normal routine began two and a half years ago when their son turned eight years old. The parents had noticed their son was displaying increasing deviations in his regular movement patterns. Initially, these variations were attributed to growth cycles, but soon, the changes were very apparent in his gait during walking, climbing stairs, as well as getting up and down from the floor. The changes were gradual – the child did not know what was happening because he did not feel any pain. He only experienced lack of strength, difficulty in movement and reduced ability to do daily activities.

One day, the parents noticed that although their son was able to get into the bathtub, he is unable to get out. This was the point at which the parents knew something was really wrong and proceeded to seek help.

They went to their family doctor, followed by an appointment with a pediatrician. Finally, they ended up at The Hospital for Sick Children, where the child was admitted initially for GBS. After a more thorough investigation, this child was diagnosed with CIDP. The initial symptoms persisted continuously for more than eight weeks and were consistent with the definition of CIDP.

Immunoglobulin treatments
The child is now 10 years old – he was nine years old when I first saw him. He had gone through different treatment regimes since he was eight years old, including corticosteroids and hormone replacement. It was finally determined that immunoglobulin treatments was the most effective treatment for him. Approximately every four weeks, the parents would take their son to the hospital for intravenously administered immunoglobulin (IVIG) treatments. IVIG is administered directly into a vein and the infusion could take up to four or more hours. The process introduces antibodies that the patient’s body should be making, and repeat doses are needed approximately every three to four weeks. In this case, this procedure proved to be the best for helping to slow down the effects of the disease, and showed signs of reversing the disease process as the child appeared to regain some strength – at least prior to the next relapse.

Circle of care treatment
Like all parents, this child’s mom and dad wanted him to get well, and were willing to try whatever might help. Therefore, in addition to conventional medical interventions, these parents tried some complementary therapies, such as acupuncture and physiotherapy. Unfortunately, none of these resulted in any positive change in their child’s condition.   

The parents found me through an Internet search, and read about my experience with GBS patients and the Dynamic Angular Petrissage (DAP) therapeutic massage technique. They contacted me in February of 2014. However, because of their other commitments and appointments, they were unable to bring their son for massage therapy treatment until five months later in July.

On the day of their appointment, the parents slowly walked towards my clinic accompanied by their son. The patient wore L-shaped prosthetics up to his knee to help him walk. Climbing a two-inch step into the clinic would prove to be challenging, requiring him to bend and transfer weight as he pushed off the alternate foot – a fundamental principle of ambulation that is physically difficult on the patient. The parents had to step in to help him across the threshold but he finally made it in and over to a chair in the waiting room, where he sat, patiently waiting for the introduction to his new therapy.

Assessment
Usually, when a patient comes to see me for a treatment, I assess them carefully to determine where to treat, what to treat and the techniques I plan on using to help with the issues they present with. In this context, the purpose of clinical assessment was to aid in finding the cause of the client’s dysfunction. In short, I wanted to find the cause/source and treat that cause – not just the symptoms that the patient presented with. More specifically, in this boy’s case, I was not searching for what the doctors had already diagnosed, but rather the causes inhibiting movement; that is, the reasons for lack of extension/flexion at the joints and reduced strength – all from a soft tissue perspective. With this information, I could create a treatment plan that was well within my scope of practice. 

The boy had been battling CIDP for about a year when I started seeing him, and his condition was true to the disorder – weakness of the legs and arms, muscle atrophy and poor balance. I assessed the child for active free movement (where one moves under his/her own strength), dermatomes (sensation, sensory nerves of the skin), followed by passive relaxed movement, and finally, active resisted movement, including myotomes (strength and ability to overcome gravity).  He was unable to support his own body weight with the legs bent, unable to lower himself down to the ground from a standing position nor able to stand up from sitting on the ground. In order to lift his arms above his head, he required his complete focus and strength.  

Treatment plan
The patient’s goals were not complicated and were best described by the phrase, “anything you can do to help.” Based on results from the assessment, our objective was to help him gain confidence, strengthen muscles that would aid in everyday movement patterns and reduce any soft tissue or joint restrictions to movement. This would involve breaking simple functions down into their basic components and working with each element to maximize function.

Walking, for example, requires that with each step we must consider the muscles involved in balance, weight transference/distribution. All the stages in movement from the stance phase – where the foot is bearing weight and is in contact with the ground – to the swing phase where the foot is not weight-bearing and not in contact with the ground. Each of these phases is further divided into sub-phases. When we walk we push off of one toe and touch down with the heel of the other foot. These actions were not part of this patient’s daily activity – he had lost the ability to perform them and had replaced them with movements that compensated for his acquired physical limitations. Our job – as a circle of care involving the therapist, the family and the patient himself – required that we work together to help this boy re-adopt these phases in order to return to some level of daily activity. The treatment plan, therefore, was to harness cooperation from all parties involved, the parents and the child with a little guidance from me, while the patient was undergoing therapeutic massage sessions in addition to his conventional medical interventions. 

At each visit, there was a re-assessment, a review of exercises, the addition of more exercises and/or an increase in difficulty of the previously learned exercises. This is followed by a massage to the feet, lower legs, anterior and posterior legs, back, gluteus medius muscles, head, neck and arms, including hands and joint mobilizations. 

I employed a massage technique that the parents had seen on the Internet – DAP. It is a treatment technique that I use for able- and non-able-body patients alike. The technique requires that the therapist support and passively move the limbs of the patient while treating and staying within the clients pain-free, comfortable range of movement to help with soft tissue issues and range of motion restrictions.

Standing up to the task
Once every two weeks, when the family came, I would increase the difficulty of the exercises based on the child’s ability to perform. Once their child was able to do a particular exercise, I added additional exercises not only for muscle strength, but for daily activities that able-bodied individuals don’t usually consider when intricate movements are involved.

Four months after we started, the family called to set up an appointment. The father was not himself – there was a quiet silence as he said, “I have something to show you.” I felt mixed emotions. I could only imagine how the parents must have been feeling, having to stand by and watch their son’s suffering but, at the same time, I was worried about what had happened to the boy since our last appointment, to make the father sound so choked up.

Sometimes parents blame themselves for things that happen to their children – I hoped this was not the case with these parents, as they had been so dedicated to helping their son get better. Even though doctors and evidence suggest otherwise, I believe that deep down parents feel responsible for the wellbeing of their offspring. I also felt for the boy, having to go through so much at such a young age. With some trepidation, I waited for the day of their appointment – hoping that all was well with the child.

When they arrived, the father was anxious but calm and simply said to his son, “Show him.” I was mentally prepared for the worse – I was not prepared for what did happen next.

The boy went from a standing position to a sitting position on the floor and stood up again – with a little stability help from a nearby chair. The task was not effortless but his determination and willingness prevailed. The smile on the father’s face showed how proud he was. The smile on the son’s face showed pride in his accomplishments and something more – he was hopeful. I was almost speechless, overwhelmed with joy. I held back the tears and was momentarily at a loss for words. I was so proud of the family, for diligently working together to get over this hurdle, and of the child for his determination to get better. 

The family still takes their son for IVIG treatments while continuing with our massage therapy sessions. The improvements in strength and confidence in movement that we are seeing in this child are quite noticeable. We will continue to push forward adapting the treatments and exercises to his progression. 

Our visits are once every six weeks now. Our next objective is to be able to control the deceleration of the lead foot when he is coming down the stairs. The circle of care approach – made up of integrating therapies, involvement of the patient and family in treatment, and the guidance of the therapist – while proving effective in managing the complications of CIDP, has strengthened this family, as much as it is strengthening the child’s muscles. As a team, we are effectively addressing his issues, while providing a supportive environment and ultimately giving him hope as he works to progress toward better function and health.

Movement exercises
CIDP1-photo.jpg  
 Weight-bearing full body movements
Photo credit: Irina Bouzenkova
 
CIDP2-photo.jpg  
 Proprioception, balance and weight transference
 
CIDP3-photo.jpg  
 Non-weight-bearing upper body work

 
These exercises were performed by the patient in seated and standing positions, as well as in weight-bearing and non-weight-bearing positions. The goal of non-weight-bearing positions is to allow him the opportunity to correctly go through a complete range of motion without overtaxing his system. Over time, we gradually increased resistance for both the non-weight-bearing and weight-bearing movements. At the beginning, diaphragmatic breathing exercises were introduced and used to coordinate breath and muscle engagement. 

These exercises were meant to help with balance, strength and movement. Over time, these would help the child support himself through full ranges of motion.

Weight-bearing full body movements
Narrow then progressing to wide leg lunges, bending forward simulating picking up items to coordinate legs and upper body movement; progressing to actually picking up light items placed on the floor

Proprioception, balance and weight transference
standing countertop balance moves simulating a wobble board movement without the board to help with balance; weight transference/distribution using a stool (try using a countertop for more stability), shifting the weight from side to side, then forward and back, circumduction, and then moving and lifting one foot off the ground, then the other; progress to moving while alternating, lifting one hand off the stool or tabletop.

Non-weight-bearing upper body work
simulated bench press changing arm positions, bicep curls; hand to the thigh (sit-ups), progressing to holding water bottles

For a complete list of exercises used for this CIDP patient, visit www.paullewis.ca


Paul Lewis is a registered massage therapist and combined decongestive therapist. He presents courses on Dynamic Angular Petrissage (DAP) in Canada, U.S.A. and Europe.

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