Brunel University – Common (or not so common) Paediatric Conditions
Last May I had the great opportunity of being welcomed to Brunel university to co-present a lecture on common paediatric conditions with the head of our local child development centre. The lecture, to second year physiotherapy students, formed part of their paediatric module. I covered the nitty gritty of the conditions that my children live with before moving onto what I think their role should be. The important knowledge that they will not learn from text books.
This year I have been invited back to do the same again and to work with them during a practical session along with one of my children. This posts looks carefully at the knowledge that I want physiotherapists to know before heading off into the real world to work with our children including some of the slides from the lecture.
Everyone is different
In our family four of us are affected to some extent by Charcot Marie Tooth disease, hypermobility, hypermobility spectrum disorder, hyper mobile Ehlers-Danlos syndrome, autonomic dysfunction, postural orthostatic tachycardia syndrome or a combination of these.
The key point is that we are all affected differently and as we all present differently our management plans will be different to.
Physiotherapists will need to have a good understanding of how each condition typically presents, it will give them criteria to watch out for and to monitor over time. Equally it is important to bare in mind that having two or more rare conditions will mean that they may not present typically.
Adopting a holistic approach
Physiotherapy works best when there is a holistic approach.
I have accessed physiotherapy a great deal over the last 40 years with varying levels of success, only when a holistic approach was adopted did it really make an impact. I would be referred to the physio service because there would be one part of me that was a particular problem, for example my knee. I would then be given exercises to strengthen it, which I always completed at home as instructed. The physio’s were right in a way, the problems with my knees did stem from overall weakness but always overlooked were my feet, which affected my gait and the way that I walked and caused muscle imbalances, my weak hips and gluteus and tight hamstrings, IT band and hip flexors. If my knee was ever really going to improve then all of this should have been addressed, it never was.
Patients may present with many different symptoms; muscular skeletal, PoTS, Depression and anxiety, fatigue, Mast Cell, Gastro-Intestinal problems etc. Sometimes pain will be the over-riding problem for example and at other times it may be fatigue . All of this will impact on an individual’s ability to participate in physiotherapy and these barriers need to be considered.
Each patient will have a different map of symptoms and everyone’s shape on this chart will be different and may even vary from one appointment to another. If you compared the charts for my children they would all look very different, because of this their physiotherapy programmes will need to be individual too.
In paediatric physiotherapy I think that it is even more important to have a plan that focuses on participation not impairments (although the impairments will need to be dealt with on the way). Remember all children want to do is join in with what all the other kids are doing and just be kids.
It is important to think about what you want to achieve and how can we get you there making sure that you address the barriers to participation like pain, fatigue along the way.
A physiotherapist role will not just be to give exercises, to provide a good holistic programme it will also need to involve elements of listening, psychology, education, interventions and communication as well as exercises. I will address each of these in turn.
Remember that we wait a long time for appointments and it can often be a battle to get a referral to physiotherapy in the first place. Often our children are seen in multiple different services, we honestly haven’t got the spare time to waste in your clinic we have to get the most out of our appointments. So please listen to what the patient or family want to gain from the session, what are the top problems at the moment, this may be different each visit.
- Ask the children how their pain is today.
- Ask the child how their pain was after the last session if it was too painful rethink the plan.
- What are the top concerns at the moment and have they changed since the last session.
- Remember that as parents we are with them 24/7 we know them best.
- Most important is to listen to the children – they have a voice, they need to be masters of their own health and wellness as they grow.
I never realised how important this element was until it was an intrinsic part of the inpatient pain management programme I attended at RNOH Stanmore. Even when I was there I insisted I didn’t need psychology input but it was a compulsory element. Looking back I think that years of misdiagnosis had taken their toll. My guard was up and no one was going to tell me it was all in my head anymore.
However the psychology element of the programme was much more than that, it dealt with acceptance, change and moving forward. Challenging my mindset and consequently my pattern of boom busting was integral to the success of the programme for me.
In paediatric physiotherapy the psychology element is two-fold.
1. Psychology of the Child
The conditions that the children are dealing with and their impact on their lives have an impact emotionally and physically. As physiotherapists you must listen and negotiate and always bare in mind that some children may have been hurt in the past or my have negative experiences of physiotherapy.
Be careful with what you say, please don’t ever accuse or even hint that a child is making it up or doing something to cause this, your words can be damaging.
[su_quote cite=”On a recent visit to the GP (not our usual one) when I described my sons symptoms I was asked if he was being bullied or exaggerating them, the doctor implied that he was copying what he has heard at home to get attention, all these questions were asked in the name of gaining a clearer picture of my child. Then he went on to suggest that the BP results I told him could not possibly be correct and that our home BP monitor may not be taking accurate results. Since that visit it has been proven that his symptoms are caused by a combination of the connective tissue disorder Ehlers-Danlos syndrome and autonomic dysfunction.”][/su_quote]
Remember that as parents we know our children best, and with genetic conditions one of the parents will be affected too, giving us a great understanding of what is going on and what it feels like.
They may also be resistant to exercise because of pain (fear, avoidance). or, constantly feeding in to the boom bust cycle causing fatigue.
I have naively been surprised at the fight I have had since having my children regarding their health, be it for understanding at school, or the correct provision to be in place, to be referred to doctors, for people to communicate with each other, for the correct adaptations to be supplied or for a diagnosis.
All families have a story that didn’t start with you in the physiotherapists room, a relationship will always take time to build with a family. Some families may come to a new service with their fists up, not because it’s personal but because of their past experiences and the system.
Please bare with us, give us a different experience because when it works it makes a real difference for our children.
Parents may also be at different stages of acceptance for their child and may approach their care differently, even within the same family.
[su_quote cite=”I had grieved for my own diagnosis and had gone through a process of acceptance therefore when our daughter was diagnosed I was at a very different place to my husband. So, I deal with things by learning and getting that team approach that will best serve my family, to pre-empt what might happen in order to work hard and prevent it. My husband likes to only deal with things as we are faced with them because they might never happen. You will rarely see my husband at an appointment for our children as he finds that side of their care hard, he deals with things practically, for example he is building a swimming pool at home because our daughter has outgrown the hot tub in the garden to do her exercises and this will be key to her being strong she grows.”][/su_quote]
You will deal with lots of different parents who deal with things in different ways and must be mindful of this.
It also will require a multidisciplinary approach. Your patient may be seen medically by different departments; rheumatology, paediatrics, endocrinology, gastroentology, cardiology, psychology, pain management or neurology etc.
They may have different therapists; physiotherapy, occupational therapist, dietician/ nutritionist, social worker or speech and language therapist.
You may also need to liaise with school.
My children’s physiotherapist talks regularly with occupational therapy and orthotics and have provided an exercise programme for school. Along with occupational therapy she has also liaised regularly with school to raise understanding about my children’s conditions both in person in professionals meetings, by writing reports and signing off health care plans.
This has been vitally important to raise awareness with school staff who were struggling with this. It has also meant that exercises can be completed in the morning at school for one of my children rather than at home when they are so tired.
Physiotherapists will be involved in providing interventions that address a functional problem, this may include orthotics, splints and aids, pacing, taping, tight clothing or hydrotherapy. Between them my children have had all these interventions provided by the physiotherapy service to improve their function and get them to participate fully.
Orthotics have been a little hit and miss but we keep trying to find the right option that works for each of them. My bug bear, they take forever to come back, so we have had boots that have been too small by the time they were delivered! At the moment all three have orthotics that are more or less working for them 🙂
My daughter wore a shoulder brace for exercise and in a busy playground to keep her safe for a few years. She also has lycra shorts for when she is wobbly but not for all the time because we don’t want her muscles to become lazy.
One son has had taping for a short time when the bones in his knees rubbed together causing acute pain.
My daughter has also had two courses of hydrotherapy. Which has been great for teaching exercises that can be done at home.
For two of my children everything is paced… everything! My daughter has a has a wheelchair part-time for family days out so that she can participate fully.
One of my children is unable to attend school and another attends on an agreed part-time basis. The physio service work closely with is to manage this fatigue and long-term plan.
Finally physiotherapy! It is really important to set realistic goals. To achieve this you must tap into what drives and motivates your patient and harness that. Physiotherapists are the motivators, it is a good idea to agree and set goals and write them down (after all goals that aren’t recorded are just a wish)
There must be a partnership with the family and the patient. Dangle a carrot rather than poke with a stick.
Make your goals achievable and have achievable time frames but always address the barriers to achieving the goals (pain/ fatigue.)
- Make it fun!
- Use sticker charts and rewards
- Invent unique exercises don’t just print off of the PC!
- Mix it up, work the same muscle group doing different activities.
The way I see if you are the conductors of this orchestra. A little bit here, a little bit there. Pulling the whole thing together.
For all this to work well communication must be high on the list. This is a partnership.
Communication is key, it is really important that everyone involved in our children’s care communicates with each other; the therapists, doctors, schools need to communicate with each other and also with us as parents.
I know this is tricky. Lots of busy people, thinking that there aren’t possibly enough hours in the day. Then take into account all the different personalities and it gets trickier still, please try hard because it makes such a difference for our children.
When communicating please be accurate. This all goes back to being good at listening to get accurate information in the first place.
The most important element is good communication with the child, take the time to talk to them and explain things to them at their level, this relationship is built on trust and belief. Be consistent.
We’ve talked about how we are all different and that we should all have a different plan well…
Child #1 Is being medically treated for the symptoms of hEDS and have been referred to the UCLH fatigue team. They have chronic fatigue, joint pain, constipation/ slow transit, brain fog, shortness of breath, chest pain, nausea, dizziness and palpitations.
Their programme at the moment just includes pacing daily tasks so that they don’t sleep all day and some consistent strengthening exercises.
The physiotherapists also liaise with OT – school recommendations for writing/ typing and pacing and with orthotics – insoles
Child #2 Has joint pain due to their hypermobility, his programme just includes strengthening exercises. Also liaising with Orthotics for insoles
Child #3 Is a little more complicated. They are medically treated for hEDS, CMT and urinary/ bowel dysfunction. They have low tone, (which is worse in the warmer weather) are wobbly, (sometimes they visibly shake). They have weakness in the feet and ankles. Have had a dislocation of their shoulder and other joints partially dislocate, sometimes they won’t relocate fully. They hyper extend their joints particularly her knees which can cause them to fall. They also have chronic fatigue and poor proprioception.
So their programme includes exercises to build strength and stamina slowly over time, increase proprioception and limit dislocations it also has to take into account pacing to manage their fatigue.
Physiotherapy liaise with OT (who make school recommendations in terms of writing/ typing, pacing, rest breaks), Wheelchair services as they use a wheelchair part-time, and orthotics for insoles, bespoke boots, shoulder brace and lycra shorts.
A final thought
As parents we learn every day, since our children’s symptoms started, we read extensively about their conditions, we keep up to date with any developments and network with other parents.
We spend the most time them and are most definitely the experts in their care. We often know as much about our child’s conditions as most doctors that we see, particularly at a local level.
We have to have the overall picture and co-ordinate their care, especially when there are two conditions and one of them is multi systemic as we are seen by many teams.
I know this may be daunting for you sometimes, faced with knowledgeable parents who may want do discuss the reasons behind your choices, we will ask you why?
It is because our families health at stake and we want to work with you in partnership.
Our conditions are not going away. Physio won’t fix us, it certainly won’t magic away the multi-systemic symptoms of our conditions.
But, access to the right management plan with a holistic approach for our zebras may mean the difference between them living a full and relatively active life to becoming deconditioned, in a wheelchair, in chronic pain and reliant on medication that doesn’t even work.
I have seen the what the benefits of a diagnosis and good management can have first hand (all be it a little too late to undo some damage for me). You may not go into paediatrics – it may not be your bag – but you may have a patient like me that has had decades of failed physiotherapy and a very complicated picture to unpick. paediatrics is where my story started.
Geography, the system or the attitude of an individual therapist shouldn’t determine the quality of life of our children.
I often think about what would have changed for me if I was diagnosed and managed correctly at an earlier age. Why do I try so hard to make it different for my children? School, dislocations, deformity, pain management, autonomic dysfunction, career choice, they all would have been better for me. So if we can work together to make this better for the next generation then it’s a job well done.
All slides ©MyStripyLife
What have I missed? add your thoughts in the comments below…
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