If ill children worry clinicians, then the child with a complex medical background must be terrifying. Paediatrics is full of syndromes, most of which are so rare that you will probably never encounter them, but these syndromes number so many that the total number ends up being significant. The end result is that if you work in General Practice or an Emergency Department, you are guaranteed to see a child with an underlying syndrome every so often.
These syndromes are not the only reasons for children to have complex medical histories. Sometimes a single disease is enough to dramatically change how a child presents and responds to illness. Intuitively, these children make all of us anxious, and I include paediatricians in that collective of worriers.
So what should you do when faced with a child who comes to you and has a complex medical history? Most of us would like to practice medicine well within our area of expertise and this scenario is going to be way outside of that? Well, it doesn't have to be a case of complete panic and run. No, when faced with unfair odds, if you choose to engage, you just need to know how to balance the playing field. My approach is simple. I cheat.
Here's a clinical scenario to illustrate what I am talking about:
A three year old girl presents with a history of pulling her ear. She has had a raised temperature but this has responded well to antipyretic medicine. Examination is normal apart from a runny nose and a left sided inflamed tympanic membrane.
You see from the child's medical records that she has Aicardi syndrome and has regular followup with a paediatrician for this.
I'm guessing that this all felt safe for the first bit. There is something particularly unnerving however about finding that a child has a thing that you've never even heard of. This is a protective instinct that clinicians have (quite rightly) to let them know that they are outside of their area of expertise.
However, you do have options here.
You should of course look at the child's medical records. This will often give you the diagnosis but not the detail about what the specifics of the thing, how the thing affects this child, or what the plan is for a child with the thing when they become unwell.
You could ask the internet for information about Aicardi syndrome. Clinicians often feel that this would make them look foolish or lacking in knowledge. The truth is that the parents do not expect you to have the first clue about their child's rare condition. If you ask for two minutes to get a bit of information about the thing, they are most likely just relieved that you are not planning to ignore the fact that their child is different. If anything, they will be pleased that you are taking the time.
The next option is to ask the parents what the deal is with their child's condition. This approach works really well, assuming that the parents are reasonably in the know. While the internet can give you an overview of a syndrome, no disorder ever affects two individuals in the same way. For this reason, I find it useful to ask the following questions:
Note that this is cheating at the highest level. You can't just expect to be this good straight away, but it's something I feel everyone should be aiming for.
What I've done there is to find out about the underlying medical problem, exactly how it affects this child in front of me and to find out what is expected of me. This immediately gets me past a few of the most common barriers:
- Possible gaps in knowledge of the condition
- The way that a disease/ syndrome manifests is variable
- There may be specific requirements or expectations when a child with this underlying problem becomes unwell
- It is very difficult to spot an unwell child if you don't know how they look and behave when they are well.
- The gut feel that we use when assessing children is less reliable if a child has a complex medical problem.
These children may or may not have good immune systems. What they all have in common is that they will not respond to illness in the same way that a child who has no underlying medical problems would. The reasons for this may be physiological, neurological or even due to human factors. These children with complex medical backgrounds experience a normalisation of illness that other children do not. As a result, they do not necessarily even know how sick they are themselves.
Putting a little bit of extra work into the assessment of these children does make a big difference. It maximises the chances that the will get seen by the right person, in the right place, at the right time. Sometimes there are specific things that can be done early on, which will help the child to get better.
Sometimes, being admitted or referred is not the best thing for the child or the parent. I the case of the child above, it turns out that Aicardi Syndrome doesn't affect immunity and that this child is not one of those severely affected. The end result is that Mum is confident that she can recognise when her child is seriously unwell. Today she feels that the problem is pain rather than concern about being dangerously ill.
More importantly, Mum has a physiotherapy appointment in an hour, so a referral 'just in case' is going to make her miss that. After applying the full list of cheats, you decide to manage the child's illness yourself.
Epilogue: The following week, you find a card and a box of chocolates on your desk. They are thanking you for taking the time to manage this girl's illness rather than refer to the local hospital, which is what often happens to her.
Edward Snelson
Finding the easy way since 1996
@sailordoctor
Disclaimer: Cheating is only wrong if you get caught.
If you have your own tips and tricks for looking after children with complex medical problems, please post something in the comments box below.
