Period management in young people with disabilities

Cite this article as:
Tara George. Period management in young people with disabilities, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.31396

Ellie is 14 years old and she has athetoid cerebral palsy. She has limited use of her hands and is in a wheelchair. She started her periods 3 months ago and she finds them very distressing. She comes to see you with her mum to ask about options to help. Mum asks if “ she should go on the pill to help” because that’s what mum was given 30 years ago for her own menstrual problems.


Why might we be thinking about this topic?

Menstrual disorders are common (10% of all teens will need treatment for heavy menstrual bleeding for example). Dysmenorrhoea is very common in all young women and can be extremely disabling or frightening especially if an adolescent does not have the language skills to articulate the issue or the receptive understanding to have it explained to them. Periods and especially period products may be extremely difficult to manage for a young person with a physical or mental disability


Triple incontinence” (bowel/bladder/menstrual blood) can have serious consequences for skin integrity. There are a number of strategies to help but gynaecology is often not part of the paediatric curriculum. Here at DFTB we are going to try and fix this.


Sexuality and sexual behaviour are not the exclusive privileges of the neurotypical but, unfortunately, the risk of abuse, coercion, sexually transmitted infections (STIs) and pregnancy is higher in people with physical or learning disabilities.



What do we need to know from Ellie and her mum?

A clear menstrual history is key here but most important is focusing on their ideas, concerns and expectations. We’ve already heard from the mother that she thinks “the pill” could be the solution but we need to know more about what is happening, what is bothering them and what they think might help.

  • Is the issue simply periods per se and the manual dexterity challenges of managing pads/tampons independently?
  • Does she have heavy bleeding?
  • Are her periods significantly painful?
  • Are there concerns about relationships and sexual activity?

Remember Ellie is a teenager. She’s likely to have crushes, to fancy boys (or girls) and to be exploring her own sexual identity. This can be really hard to come to terms with as a parent of any child, but as the parent of a child with a disability, this can be particularly frightening. There is a huge taboo surrounding the idea of disabled people having sex (more to come in a future article).


Ellie tells you she has had three periods so far. She bleeds for 4-5 days each time and gets a bit of lower abdominal cramping. This settles with paracetamol or ibuprofen. She needs her sanitary pads changing every 3-4 hours and this is really upsetting as her hands won’t let her peel the sticky strips from the back of the pad and she has to get someone else to do it for her. She’s in a mainstream secondary school with some writing and mobility support but her 1:1 teaching assistant can’t help her with personal care so on period weeks her mum has to come into school 2-3 times in the day to change her pads. Ellie finds this humiliating as she is really independent with everything normally. Ellie knows about sex and relationships and has a bit of a thing for a boy in her French class. She’s open and aware of pregnancy and STIs having been to lots of PHSE lessons recently and does not want, or need, contraception currently.



What options are there for helping Ellie with her periods?


The key thing here is not to over medicalise the situation but to recognise that being a menstruating adolescent with physical disabilities can be challenging.

Consider period pants

Liaise directly with school nurses

Medication based approach

Progestogen only pill

  • Shouldn’t be used as a first line agent as erratic bleeding is common
  • It needs to be taken daily
  • 50% of young women will have amenorrhoea by six months with desogestrel

Combined Pill

  • Commonly used, such as the 150/30mcg Levest
  • Prescribers need to consider relative contraindications such as immobility, BMI and enzyme-inducing medication and absolute contraindications such as a history of migraines or family or personal history of venous thrombo-embolism
  • Targeted regimes (bi- or tri-cycling) may be used to induce the longest period of amenorrhoea
  • Loestrin can be crushed and flushed down a gastrostomy tube if swallowing is a challenge

Transdermal contraceptives

  • E.g. Evra
  • They have the same relative and absolute contra-indications as the combine oral contraceptive pill
  • Weekly application is easier than daily tablets
  • A sequentially tailored regime can be used to manage bleeding

Depo progestogen

  • 70% will have amenorrhoea by 12 months
  • This is the most commonly used method
  • Sayana-Press may be able to given by the carer – it is a subcut injection, that is less painful and easier for the teen.
  • Known side effects include weight gain, which may further impede mobility or challenge carer
  • If the teen is of lower BMI, and relatively immobile, it may increase the risk of osteoporosis necessitating the use of supplemental medication

Intra Uterine Devices (IUDs)

  • E.g the Mirena. It works by slowly releasing progestogen into the uterus
  • Licensed for 5 years
  • No drug interactions
  • Amenorrhoea common and dysmenorrhoea tends to improve
  • The uterine cavity needs to be at least 6cm
  • Needs a degree of mobility (and consent) to fit in a routine clinic
  • It may be more appropriate to fit under GA

Contraceptive implant

  • E.g. Nexplanon (etonogestrel)
  • Only a 20% amenorrhoea rate and erratic bleeding is common, though it is usually lighter and less painful
  • The 3-year license means better concordance
  • There is a risk of the teen picking at the implant site, so it may be better to implant in the dominant arm, by the triceps
  • Removal can be tricky so current guidelines suggest putting in a second implant and just leaving the old one in place



Ellie and her mum decided to try some period pants and to speak to the school nurse about changing facilities at school. After another two months she’s still struggling on days 1 and 2 with changing her pants but can manage a whole school day in one pair of “nighttime” pants on days 3-5. She opts to try the combined pill with a tailored regimen allowing day 1-2 of her bleed to be scheduled for weekend days.

Selected references

Dickson J, et al. Contraception for adolescents with disabilities: taking control of periods, cycles and conditions. BMJ Sex Reprod Health 2018;44:7-13

PEM Adventures Chapter 2

Cite this article as:
Dani Hall, Rachael Mitchell and Sarah Davies. PEM Adventures Chapter 2, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30926

Are you ready for another PEM adventure? This time the stakes are a little higher. Join us on another journey (with an inbuilt time travel machine) as we manage Grace…

Teenager holding mobile phone

Meet Grace. Grace is a 15-year-old vegetarian environmental activist. She’s thrilled because she’s recently hit a TikTok following of 10,000 – social media is SO the way to spread the word.

She spent yesterday at an illegal climate strike rally outside parliament. Buoyed up on the adrenaline of a thrilling protest, she and some buddies went back to her friend, Zak’s house where they celebrated in style with vodka pops. But this morning, horrified by the fact Grace was impossible to wake, Zak called the emergency services.

Meanwhile, you’ve just fished a pea out of a child’s ear when the red phone rings. Hearing the pre-alert, you mobilise the team and prep a bay in resus. Minutes later, Grace is wheeled in with Zak in tow and she’s transferred to a trolley.

Whiteboard containing vital signs

Your SHO, Lucy, does a primary survey:

  • A: Tolerating an oropharyngeal airway. No stridor or stertor.
  • B: Self-ventilating in 15L O2 via a non-rebreathe mask. Respiratory rate is a bit raised but her chest is clear and she doesn’t have any other signs of respiratory distress.
  • C: Warm and well perfused, heart rate 68 with normal heart sounds and normal pulse volume. Blood pressure is 115/70 and capillary refill time is less than 2 seconds.
  • D: GCS 7, made up of M4, V2, E1. Pupils are size 3 bilaterally and normally reactive to light. Tone is generally low but reflexes are normal and plantars are down going.
  • E: No rashes, no bruises and Grace is currently afebrile.

Lucy gets Grace’s mum’s number from Zak and phones her to get a bit more information. Grace is a healthy adolescent with no significant past medical history. She’s not on any medications, is not allergic to anything and is fully vaccinated. She’s been completely well with no fever, cough, coryza, or any other symptoms. She did have a cold sore a few months ago – could that be relevant?

Grace’s parents, who had gone away for the first time since covid-lockdown lifted, are running to the train station to make their way back home.

Back in resus, you put in a cannula, and send off some bloods: FBC, U&E, LFT, CRP, blood culture and an alcohol level.

Her venous gas shows a pH of 7.47, pCO2 of 2.7, bicarb 14, lactate of 2.7 and normal glucose.

Blood gases showing respiratory alkalosis

That’s odd, you think to yourself, a respiratory alkalosis with some metabolic compensation. You pause for a second and work through your list of possible causes.

  1. Could this be a central cause of hyperventilation? A bleed? A tumour? A meningoencephalitis? You put up a request for CT brain. 
  2. Could this be a respiratory cause? Asthma? Pneumonia? Pneumothorax? Better get a chest x-ray too.
  3. Could this be sepsis? You prescribe ceftriaxone and add acyclovir. There was that coldsore after all…
  4. Pregnancy?
  5. Endocrine or hypermetabolic cause? Maybe DKA? No… her blood sugar’s normal. Or thyrotoxicosis?
  6. Maybe it’s something toxicological? You remember, from your undergraduate days, learning that salicylates cause a respiratory alkalosis.

You add a salicylate level, and paracetamol for good measure, add thyroid function and ask for a catheter urine for beta HCG and a tox screen.  

But her catheter urine doesn’t give you any extra clues. Grace’s urine beta-HCG is negative, her tox screen is negative and her dip is negative.

The resus nurse gently touches your elbow and quietly says, “Do you want to call the anaesthetist?

Good question, you think to yourself. Her GCS is 7 and she’s tolerating the oropharyngeal airway, but she’s breathing well for herself at the moment. What do you want to do?

There are some compelling arguments not to intubate; Grace is maintaining her airway and she’s obtunded and may have seizures – if you give her a paralysing agent as part of her RSI you’ll never be able to tell. Sure, if you really want to monitor for seizure activity, AND you’re in a a tertiary centre with a PICU with capability of CFM or EEG monitoring, you could keep arguing you can monitor for seizure activity while she’s intubated and ventilated, but it takes a while to set up, and time is of the essence.

So you make the brave decision not to intubate. 

You later decide it was less brave and more foolhardy. While Grace is in CT she drops her GCS further and then has a respiratory arrest, which quickly deteriorates into cardiac arrest. The scanner is a terrible place for CPR. While you’re trying to run an arrest on a narrow CT bed you wish you could go back in time and make that choice again. Luckily for you, the inbuilt PEM adventures time travel machine can do just that. In you hop and whizz back to resus.

Close the toggle and this time click on the ‘intubate’ choice.

There are some compelling arguments not to intubate; Grace is maintaining her airway and she’s obtunded and may have seizures – if you give her a paralysing agent as part of her RSI you’ll never be able to tell if she’s seizing. 

But there’s something niggling you… Grace is heading for a CT scan and the LAST thing you need is for her to arrest in the scanner.

And yes, it’s true, there is a risk you could miss a seizure if she was paralysed, but you can give her a long-lasting anticonvulsant to prevent seizures. 

So… you decide to follow your gut and make the decision to intubate.

Thankfully the anaesthetist is nifty with a tube and she’s already drawn up the RSI drugs – fentanyl, ketamine and rocuronium in a 1:1:1 ratio (that’s fentanyl 1mcg/kg, ketamine 1mg/kg and rocuronium 1mg/kg). She’s intubated without difficulty. 

Grace has bilateral equal breath sounds and a mobile chest x-ray shows the tube to be in a good position, with clear lung fields and normal heart size. You mentally cross respiratory causes of an alkalosis off your list.

You’re doing great.

The anaesthetist asks you, “How should I ventilate Grace? Should I match her raised respiratory rate?

That’s a good question, you think to yourself. What should you do?

This is a very good question and you’re not sure you know the answer. Grace is hyperventilating for some reason, and maybe mimicking this is the right thing to do…

But, you’re worried about her ultra low pCO2. At 2.7 it’s likely to be causing cerebral vasoconstriction and hypoperfusion. It’s time to start some simple, proactive neuroprotective measures.

On reflection, you decide it would be better to slow Grace’s breathing so resolutely you turn back to the anaesthetist and ask him to SLOW Grace’s respiratory rate to keep her end tidal CO2 tightly between 4.5 and 5; you want to prevent secondary brain injury.

He nods his assent, while tilting the head of the bed up to 30 degrees.

But, remembering a great DFTB post by Costas Kanaris, you know you can do more than that to neuroprotect. As well as maintaining normocapnia and nursing her at 30 degrees head in line, Grace needs strict normothermia and hypoxia should be avoided at all costs. She needs vigilant glucose monitoring, tight circulatory monitoring and support and an anticonvulsant to prevent seizures. 

Close the toggle and move on to the next part of the story.

You think this through. The alkalotic pH doesn’t matter quite so much, what’s really troubling you is Grace’s pCO2. With a pCO2 of 2.7, there’ll be huge amount of cerebral vasoconstriction and hypoperfusion. It’s time to start some simple, proactive neuroprotective measures.

Resolutely you turn back to the anaesthetist and ask him slow Grace’s respiratory rate to keep her end tidal CO2 tightly between 4.5 and 5; you want to prevent secondary brain injury and so now’s the time to start some neuroprotection.

He nods his assent, while tilting the head of the bed up to 30 degrees.

But, remembering a great DFTB post by Costas Kanaris, you know you can do more than that to neuroprotect. As well as maintaining normocapnia and nursing her at 30 degrees head in line, Grace needs strict normothermia and hypoxia should be avoided at all costs. She needs vigilant glucose monitoring, tight circulatory monitoring and support and an anticonvulsant to prevent seizures. 

Great choice! Close the toggle and move on to the next part of the story.

With fortuitous timing, CT ring down to say they’re ready for Grace.

Satisfied that A, B and C are all stable, you turn to take the brake off the trolley when Lucy, your SHO, asks, “But do we only want a plain non-contrast CT?

That’s a good question, you think to yourself. Is that all I want? What neuroimaging will you choose?

“Yes”, you say to Lucy. “A non-con CT is quick and will show us most tumours and bleeds. She can have an MRI later to get a bit more detail.” 

But,” your SHO counters, “a non-con CT won’t always detect an ischaemic stroke. Perhaps we should ask for a CTA too?

You remember a case from a few weeks ago, a little boy called Tomas. You’d bookmarked the RCPCH Stroke in Childhood guideline on your phone. You quickly bring it up and Lucy’s right, the guideline says to consider stroke in children with focal neurology, speech disturbance, focal seizures, severe headache, cerebellar signs… and unexplained decreased conscious level.

Smiling gratefully at Lucy you pick up the phone and ask the radiologist if you can add a CTA. They say yes.

Minutes later, Grace has her CT with CTA… but it’s normal. No abscess… no tumour… no bleed… and no stroke.

Well that’s good news for Grace, you think to yourself, but it doesn’t give you any much-needed clues.

Great work. Close the toggle and move onto the next part of the story.

You know what”, you say to your SHO, “let’s ask for a contrast-enhanced CT. It’s still quick and will give us a little more detail than a non-con CT.

But,” she counters, “do you think we should be considering stroke in our differential? Perhaps we should ask for a CTA too?

You remember a case from a few weeks ago, a little boy called Tomas. You’d bookmarked the RCPCH Stroke in Childhood guideline on your phone. You quickly bring it up and Lucy’s right, the guideline says to consider stroke in children with focal neurology, speech disturbance, focal seizures, severe headache, cerebellar signs… and unexplained decreased conscious level.

Smiling gratefully at Lucy you pick up the phone and ask the radiologist if you can add a CTA. They say yes.

Minutes later, Grace has her CT with CTA… but it’s normal. No abscess… no tumour… no bleed… and no stroke.

Well that’s good news for Grace, you think to yourself, but it doesn’t give you any much-needed clues.

Great work. Close the toggle and move onto the next part of the story.

You know what”, you say to your SHO, “let’s ask for a CT plus CTA. The CT will show us most tumours and bleeds and she can have an MRI later for a bit more detail, but we should consider stroke in our differential, and to detect that we need to add angiography to our CT.

You think back to a case from a few weeks ago, a little boy called Tomas. You’d read the RCPCH Stroke in Childhood guideline and remember that it says to consider stroke in children with focal neurology, speech disturbance, focal seizures, severe headache, cerebellar signs… and unexplained decreased conscious level.

Smiling gratefully at Lucy you pick up the phone and ask the radiologist if you can add a CTA. They say yes.

Minutes later, Grace has her CT with CTA… but it’s normal. No abscess… no tumour… no bleed… and no stroke.

Well that’s good news for Grace, you think to yourself, but it doesn’t give you any much-needed clues.

Great work. Close the toggle and move onto the next part of the story.

You haven’t ruled out infection. So, when you’re back down in resus, you ask Lucy if she’d like to do the LP.

Really? Is that safe with her low GCS?” she questions. 

What do you think? Should you LP?

It’s fine,” you reply, “she doesn’t have physiological signs of raised ICP: she’s not bradycardic or hypertensive, she’s not posturing and she didn’t have focal neurology. Plus, her CT doesn’t look like there’s cerebral oedema.

Feeling reassured, Lucy picks up the spinal needle and performs an LP. 

But it’s not your finest decision. Grace cones and arrests. 

Luckily for you and Grace, there’s an inbuilt time travel function in your PEM adventure and you return back to resus just as your SHO asks if it’s safe to LP Grace.

You have a strange feeling of déjà vu, while a little voice tells you that although a normal CT is usually reliable for ruling out raised intracranial pressure, this isn’t failsafe and it might be safer to defer the LP for when she’s a little more stable. You’ve already started the ceftriaxone and acyclovir, so this time you decide that the LP can wait until she’s a bit more stable and can have an MRI first. 

Thank goodness for that time machine! Close this toggle and move onto the next part of the story.

Lucy’s right. Although a normal CT is usually reliable for ruling out raised ICP, this isn’t failsafe and there’s no rush to get CSF now. You’ve already started ceftriaxone and acyclovir anyway. And when she’s a bit more stable she can have an MRI to check the LP’s safe. The LP can wait for now.

Great teamwork! Close the toggle and continue the next part of the story.

You’re still not sure what’s causing Grace’s low GCS though. Maybe the bloods will help. So you log in to the computer to check Grace’s results.

Results showing a mild transaminitis

Huh, you think to yourself. Grace’s FBC and CRP are normal; it’s sounding less and less like infection.

Her urea is low and her liver enzymes are raised, with a slightly prolonged INR.

Her salicylate and alcohol levels are undetectable. This isn’t feeling so toxicological anymore.

You mull this over with Lucy. Maybe this is a viral picture. There was that cold sore…

Just then Maureen, the ED cleaner, pops her head into the office. “Might this be of any use?” she asks. She’s holding the RCPCH Decreased Conscious level guideline.

You quickly flick through. Bloods… imaging… you’ve done pretty much everything it suggests. But then you take a closer look at the list of bloods it suggests. And there, in black and white, it says ammonia.

Of course!” you say out loud. “That would explain the respiratory alkalosis!

You draw off an ammonia sample, get it on ice and ask Raymond, the dashing porter, to run it down to the lab. You give the lab a ring so they can get the machine primed.

While you’re waiting for the result to come back, Zak comes running over. He’s just been looking in Grace’s backpack for her mobile and found a high protein Diet book. Apparently she’s been trying to lose weight for TikTok. Could it be relevant?

The cogs begin to whir… Hang on a minute… A high protein diet in a vegetarian environmental activist?

The lab phones with Grace’s ammonia level.

It’s over 500! And normal is less than 40.

It all falls into place. Selective vegetarian… Recent protein load… Raised transaminases… High ammonia… This is all beginning to sound a bit metabolic.

But what should you do about that ammonia? As far as you can see, the DeCon guidance only tells you to take it, not what you do when it comes back at over 10 times the upper limit of normal.

Just a sec,” says Lucy scrolling through her mobile phone, “The British Inherited Metabolic Disease Group have got this covered. They’ve produced a whole range of easy access emergency guidelines, including this one, for the management of an undiagnosed hyperammonaemia.”

It says, turn off protein catabolism by giving a 10% dextrose bolus followed by a dextrose infusion to provide an alternative energy source. If her glucose climbs, add insulin but don’t reduce the dextrose – otherwise, she’ll just start breaking down more protein. And, finally, mop up that ammonia with scavengers like phenylbutyrate and sodium benzoate.

The words ‘ammonia scavengers’ remind you of another post you read on Don’t Forget The Bubbles, about the different types of metabolic conditions, how they present and the various treatment strategies. You make a mental note to read it again later to remind yourself of the differences between an amino acid and organic acid.

Meanwhile, you hastily prescribe…

  •       A 2ml/kg bolus of 10% dextrose
  •       a dextrose infusion
  •       And those ammonia scavengers, sodium benzoate and sodium phenylacetate

Grace is subsequently diagnosed as having a urea cycle disorder. You’re amazed to discover that although most diagnoses are made in neonates, diagnoses are sometimes made in adolescents and adults presenting encephalopathic after a big protein load or when catabolic, such as after trauma, childbirth, major surgery, major haemorrhage, critical illness, rapid weight loss or simply after switching to a high protein diet. This is particularly true for ornithine transcarbamylase (OTC) deficiency, which although is X-linked, can present in symptomatic female OTC carriers. Little diagnostic clues include autoselective vegetarianism (that protein makes them feel a bit ‘ugh’) and subtle or behavioural difficulties from chronic low-level hyperammonaemia.

You bookmark a fantastic review article to read later and flick back through your undergraduate biochemistry textbook to remind yourself about urea cycle defects… and hastily close it again when you remember how little you knew even then, at the prime of your undergrad years.

Wow, what a shift. You pack up your stethoscope and head home, reflecting on your day as you walk to the bus stop.

Grace has taught you the importance of…

Reaching for the RCPCH DeCon guideline when looking after a child with an unexplained low GCS.

Not ever forgetting to send an ammonia in an encephalopathic child, young person or even adult; these tricksy urea cycle disorders can present in adulthood. If the ammonia comes back high, BIMDG have a handy guideline telling you exactly what to do.

And, remembering that a normal CT does not ALWAYS rule out raised ICP. In a child with low GCS, put away that LP needle and neuroprotect instead.

But what happened to Grace? Let’s jump in the time travel machine and find out…

Your epic diagnosis of a late presenting metabolic disorder was the talk of the ED. The RCPCH DeCon poster was put up in the ED staff room and from that point onwards, everyone remembered to check an ammonia in a patient presenting with an unexplained low GCS. 

Lucy was nominated as employee of the month. This shift was a pivotal moment in her career as she decided PEM was her vocation.

The ammonia scavengers did the trick and Grace made a full recovery.

Grace focussed her efforts on reducing plastic waste in hospital and successfully petitioned for the introduction of plastic-free PPE, reducing plastic waste during the COVID-19 pandemic by an incredible 275%.

She hit 3 million TikTok followers (and you’re one of them).

This PEM adventure wouldn’t have been possible without some help from some amazing people. Thank you to Roshni Vara, Consultant in Paediatric Inherited Metabolic Disease at the Evelina London, Costas Kanaris, PICU and retrieval consultant at the Royal Manchester Children’s Hospital and Jon Lillie, PICU and retrieval consultant at the Evelina London Children’s Hospital.

Here are some of their wise words of advice…

As Costas says in The N of 1 matters, we’ve outlined our take on Grace’s case and how we’d manage her in our own resus bays. Medicine’s not always so clear cut and there are often different approaches to the same problem, but this is our consensus on minimising risk using, as Costas says, a rational, evidence-based and pharmacologically prudent approach (I love that phrase Costas!)

Should we intubate Grace?

Grace is self-ventilating but the fact that she is tolerating an oropharyngeal airway means some of her airway reflexes have gone. Scanning a child with a GCS of 8 or less, without securing the airway, puts them at risk. If they vomit, they aspirate. If they stop breathing and arrest in the scanner, the CT room is one of the least fun places to run an arrest, perhaps second only to an elevator. Are there any counter-arguments? Yes, and they’re soft.  One is “this patient is encephalopathic/obtunded and may have seizures; if the child starts fitting we won’t be able to tell as they’ll be paralysed”.  Costas says he usually stands his ground and says that if someone is worried about seizures then the child can be given a long-acting antiepileptic. Levetiracetam is his preference, although phenytoin would work just as well unless there’s suspicion of an overdose of an arrhythmogenic agent. The last thing you need is to tip this child into an arrhythmia.

When should a lumbar puncture be performed in a child with a decreased conscious level?

CT is a useful tool for ruling out raised intracranial pressure before proceeding to lumbar puncture. And we’d agree. But Grace has a low GCS and this changes the picture.

If we take a look at the full RCPCH DeCon guideline it dedicates a whole section to answering the question about LP in decreased conscious level. So, let’s start there.

The DeCon guideline advises a lumbar puncture if your differentials are viral encephalitis or tuberculous meningitis and advises that we consider lumbar puncture when our differentials are bacterial meningitis, sepsis, or the cause of the low GCS is not known. This is cloaked with the phrase “when no acute contraindications exist” and this is key. So what are those contraindications?

  • Signs of raised intracranial pressure: dilated pupil(s), abnormal pupil reaction to light, bradycardia, hypertension or abnormal breathing pattern.
  • A GCS equal to or less than 8, or a deteriorating GCS
  • Focal neurology
  • A seizure lasting more than 10 minutes with a GCS less than 13
  • Shock or clinical evidence of meningococcal disease
  • CT or MRI suggesting obstruction of the CSF pathways by blood, pus, tumour or coning.

What’s the evidence? Well, it’s mostly been derived by expert opinion, and there aren’t many people who’d dispute them.

But what about when you have a normal CT? The radiologists can look for midline shift and for signs of impending herniation by assessing the position of the cerebellar tonsils. So, surely that can rule out raised ICP, allowing an LP to be done?

The DeCon guideline quotes a study published in 2000 that showed that in 124 CT scans from 65 children with traumatic brain injury, CT had an excellent sensitivity of detecting raised ICP of 99.1%, with a specificity of 78.1%. But, a 2019 revision to the guideline says that no further evidence about the sensitivity or specificity of CT in detecting raised ICP in children has been found. None. Although the sensitivity in the one quoted study was very high, it was felt that one study, in children with traumatic brain injury, could not be extrapolated to all children with a decreased conscious level. And so the guideline states that a normal CT scan does not exclude raised ICP. If other contraindications are present, don’t use a normal CT to justify LP.

What does this mean in practice? Well, in a child with a GCS of 8 or less, like Grace, there’s no rush to do an LP. It’s unlikely to change your management acutely in the ED. Her infection can be treated empirically and once she’s more stable, and you have more information including, potentially, an MRI, she can then have an LP for PCR.

What neuroimaging should we do?

That’s a good question, answered beautifully by an article by Hayes et al, published in 2018. Although this article focuses on neuroimaging for headaches, it has a great section on when you might choose each type of scan.

We’d all agree that the ideal imaging to look for a brain tumour is an MRI. It gives excellent detail about the brain tissue as well as other intracranial soft tissues and the extra-axial CSF spaces.

But, if you want a quick answer, or your access to MR is difficult, a non-contrast CT can be performed easily from the ED. If there’s no possibility of a later MR, then contrast-enhanced CT might be better as it gives more detail, but it’s more radiation – this is one for discussion with the radiologist.

CT is very sensitive in detecting blood, and it can be done quickly, in an emergent setting from the ED. So, in children with thunderclap headache, when you want to exclude subarachnoid hemorrhage, a non-contrast CT will be your first choice scan. If blood is detected, then add in arterial imaging: CT or MR angiography (CTA or MRA). Contrast is injected and images taken in the arterial phase.

CTA or MRA are also useful in the investigation of suspected stroke. In practice, you need an answer fast, particularly if the child’s within the thrombolysis window and could be a candidate if there’s evidence of ischaemic stroke, so a CTA is a more practical scan. The CT component looks for blood or large areas of parenchymal infarct, while the angiography looks for filling defects in the arteries that could indicate a thrombus.

If you’re looking for intracranial extension of infection, such as from an orbital cellulitis, mastoiditis or a brain abscess, then a contrast-enhanced CT will highlight suppurative collections.

And if you suspect a venous sinus thrombosis, such as in children with coagulopathies, sickle cell disease, infective spread from meningitis / mastoiditis / sinusitis, or secondary to dehydration or renal failure? Then you need to look at the venous spaces. CT or MR venography (CTV or MRV), when contrast is injected and images obtained in the venous phase, will give you the answers you need.

And what ARE the causes of a respiratory alkalosis?

There are a few! Here are the main ones:

  • Central: brain tumours, meningoencephalitis; stroke
  • Respiratory: asthma, pneumonia, pneumothorax, PE
  • Sepsis
  • Pregnancy
  • Endocrine and hypermetabolic cause: DKA, thyrotoxicosis
  • Toxicology: salicylates 
  • Hyperammonemia: liver and metabolic disorders 
infographic of causes of respiratory alklosis

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Select references

The management of children and young people with an acute decrease in conscious level. A nationally developed evidence-based guideline for practitioners. RCPCH. 2015 update, with 2019 revisions. Management of children and young people with an acute decrease in conscious level – Clinical guideline | RCPCH

Undiagnosed Hyperammonaemia. Diagnosis and Immediate Management. British Inherited Metabolic Disease Group. Last reviewed 2017. The major causes are as follows (bimdg.org.uk)

Hirsch, W., Beck, R., Behrmann, C. et al. Reliability of cranial CT versus intracerebral pressure measurement for the evaluation of generalised cerebral oedema in children. Pediatric Radiology 30, 439–443 (2000). https://doi.org/10.1007/s002470000255

Expert Panel on Pediatric Imaging:, Hayes LL, Palasis S, Bartel TB, Booth TN, Iyer RS, Jones JY, Kadom N, Milla SS, Myseros JS, Pakalnis A, Partap S, Robertson RL, Ryan ME, Saigal G, Soares BP, Tekes A, Karmazyn BK. ACR Appropriateness Criteria® Headache-Child. J Am Coll Radiol. 2018 May;15(5S):S78-S90. doi: 10.1016/j.jacr.2018.03.017. PMID: 29724429.

Mitani H, Mochizuki T, Otani N, Tanaka H, Ishimatsu S. Ornithine transcarbamylase deficiency that developed at the age of 19 years with acute brain edema. Acute Med Surg. 2016;3(4):419-423. doi:10.1002/ams2.214

Summar ML, Barr F, Dawling S, Smith W, Lee B, Singh RH, Rhead WJ, Sniderman King L, Christman BW. Unmasked adult-onset urea cycle disorders in the critical care setting. Crit Care Clin. 2005 Oct;21(4 Suppl):S1-8. doi: 10.1016/j.ccc.2005.05.002. PMID: 16227111.

Kanaris C, Ghosh A, Partington CG389(P) A case for early ammonia testing in all encephalopathic patients: female patients with x-linked ornithine transcarbamylase deficiency. Archives of Disease in Childhood 2015;100:A158-A159. http://dx.doi.org/10.1136/archdischild-2015-308599.343

Summar, Marshall. (2005). Presentation and management of urea cycle disorders outside the newborn period. Critical Care Clinics. 21. IX-IX. 10.1016/j.jccc.2005.08.004.

Metabolic presentations part 2: children and adolescents

Cite this article as:
Taciane Alegra. Metabolic presentations part 2: children and adolescents, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.28592

Neurological symptoms in a healthy teen

Jane, 14 years old, is brought in by ambulance, unconscious after a 20-minute generalized tonic-clonic seizure at home. She’s wheeled into resus, and while she has a cannula inserted, you take a history from her father. You learn that she has been a healthy child who’s never had a seizure before, with no chronic conditions, no history of drug abuse, no acute illness, and no sick contacts. She’s a vegetarian and enjoys dancing. She’s started a new ‘intermittent fasting diet’ and yesterday hadn’t eaten since brunch. She went to bed early and this morning her mother was woken early by strange sounds coming from Jane’s room and found her seizing on the floor. 

Her primary survey shows that she’s maintaining her airway, is tachypnoeic with oxygen saturations of 98% in air and clear lungs, a normal cardiovascular examination and a GCS of 10, with global hyperreflexia.

This adolescent has an acute onset of neurological symptoms. The differential diagnoses are broad, but her symptoms were precipitated by a new diet that required prolonged fasting. This case is a red flag for a metabolic condition! 

The RCPCH Decreased Consciousness (DeCon) guideline lays out an approach to the child with a decreased conscious level, including differentials, investigations and management (take a look at the DeCon poster and summary guidance). 

You send some bloods and, as suggested by the RCPCH DeCon guideline, you include an ammonia.

Some points to remember

Common things are common: sepsis, CNS infections, intoxication (prescribed and recreational drugs), and primary seizure disorders should all be considered here, but extend your differentials to conditions that can be individually rare but are common as a group: metabolic diseases.

All children presenting with a decreased conscious level, regardless of age, should have an ammonia sent as part of their initial investigation in ED… this could be a case of an undiagnosed urea cycle defect. 

In late onset urea cycle defects, acute metabolic encephalopathy develops following metabolic stress precipitated by a rapid increase in nitrogen load from: 

  • infection
  • trauma
  • rapid weight loss and auto-catabolism
  • increase in protein turnover from steroids
  • surgery and childbirth
  • or other precipitants of protein catabolism.

Adolescents and adults with an undiagnosed urea cycle defect may be completely fit and well, but may have chronic symptoms such as headache, cyclical vomiting, behavioural difficulties, psychiatric symptoms or mild learning difficulties.

They may be selective vegetarians, restricting their protein intake.

Between episodes patients are relatively well. However, acute presentations can be fatal or patients may be left with a neurological deficit.

For more information about cycle urea disorders, check out Metabolic presentations part 1.

The take home

Always send an ammonia in any child presenting with an acute encephalopathy or decreased GCS.

Disorders involving energy metabolism

Next up is Liz, a patient with a diagnosed metabolic disorder.

Liz is a 3-year-old girl from the countryside, who is visiting her grandmother in the city. She has had diarrhoea since yesterday and started vomiting last night. In the last 3 hours, she hasn’t been able to tolerate anything orally. There has been no fever or respiratory symptoms and she is passing urine as normal. Her 5-year-old cousin has similar symptoms. 

Her Grandmother informs you that Liz has MCAD deficiency and her emergency plan was tried at home, without success. Liz is not usually treated at your hospital and you don’t have her chart. Unfortunately, Liz’s grandmother didn’t bring the plan to the hospital. 

Liz looks tired and is mildly dehydrated, but smiles at you. Her heart sounds are normal and her chest is clear. She has increased bowel sounds, a soft abnormal with mild diffuse pain on deep palpation and no masses or organomegaly. She’s afebrile but tachycardic at 165, her capillary  refill time is 3 seconds, and her systolic BP is 104mmHg.

You put in a cannula and measure bedside glucose and ketones. Liz has a hypoketotic hypoglycaemia.

What is MCAD deficiency?

Medium-chain acyl-CoA dehydrogenase deficiency (MCADD) is the most common fatty acid oxidation disorder in Caucasians in Northern Europe and the United States. Most children are now diagnosed through newborn screening. In fatty acid oxidation disorders, the body can only partially break down fat.

Let’s recap some basic biochemistry: in prolonged fasting, the body’s normal response is to break down fat to create ketones, as an alternative source of energy. However, children with MCAD deficiency can’t produce large amounts of ketones, so their ketone response is not appropriate to the degree of hypoglycaemia. 

Clinical symptoms in a previously apparently healthy child with MCAD deficiency include hypoketotic hypoglycemia and vomiting that may progress to lethargy, seizures, and coma, triggered by a common illness. Hepatomegaly and liver disease are often present during an acute episode. These children appear well at birth and, if not identified through newborn screening, typically present between 3 and 24 months of age, although presentation even as late as adulthood is possible. The prognosis is excellent once the diagnosis is established and frequent feedings are instituted to avoid any prolonged periods of fasting (Merritt and Chang, 2019).

Children with fatty acid oxidation disorders (medium, long and short chain defects) have typical acylcarnitine patterns. This is one of the reasons acylcarnitines are sent as part of metabolic and hypoglycaemia work-ups.

What is the priority in acute presentations?

Children who have MCADD, like Liz, need extra calories when sick. The most important intervention is to give simple carbohydrates by mouth, such as glucose tablets or sweetened, non-diet beverages, or intravenously if needed to reverse catabolism and sustain anabolism. In Liz’s case, she’s vomiting all oral intake so cannot tolerate oral carbohydrates, so the intravenous route is necessary. 

The key priorities are:

  • Correct hypoglycaemia immediately with 200mg/kg glucose: 2 ml/kg of 10% glucose or 1ml/kg of 20% glucose, over a few minutes. 
  • Treat shock or circulatory compromise with a bolus of 20ml/kg 0.9% sodium chloride. 
  • Give maintenance fluids with potassium once the plasma potassium concentration is known and the child is passing urine. 

Where can you find resources?

The British Inherited Metabolic Disease Group, BIMDG, has specific guidance on their website.

Disorders involving storage of complex molecules

Mike is 12 years old, presenting to the ED with cough and fever. He has been coughing for 10 days, worse progressively in the last 5  and febrile for the last 3 days. He’s been lethargic since yesterday and even when afebrile he looks unwell. His appetite is poor and he has been “sipping some apple juice”. You learn from his mother that he has a condition called Mucopolysaccharidosis (MPS) type I and is receiving treatment with “the enzyme”. Every now and again, “he is chesty and needs to come to hospital”. 

You examine Mike. He’s pink and well hydrated, but looks sick. You notice that he is shorter than an average 12 year old boy, has hand contractures and coarse facial features. 

He has a soft systolic cardiac murmur with good pulse volume. On auscultating his chest you hear creps and rhonchi on the right side. He has mild hepatomegaly and an umbilical hernia. 

His temperature is 37.5ºC, heart rate is132, respiratory rate 30, and oxygen saturations are just 88% in air.

A bit about mucopolysaccharidoses (MPS)

In mucopolysaccharidosis disorders, the body is unable to break down mucopolysaccharide sugar chains. These mucopolysaccharide sugars build up in cells, blood and connective tissue: hence the name, ‘storage disorders’.

In general, most affected people appear healthy at birth and experience a period of normal development, followed by a decline in physical and/or mental function.

As the condition progresses, it may affect appearance; physical abilities; organ function; and, in most cases, cognitive development. 

Most cases are inherited in an autosomal recessive manner, although one specific form (Type II) follows an X-linked pattern of inheritance. 

Specific treatment can be provided via enzyme replacement therapy or haematopoietic stem cell transplantation in the early stages. 

Presently, enzyme replacement therapy is available for MPS I, II and VI and is given as an intravenous infusion either weekly or biweekly, depending on the disease. 

Both enzyme-replacement and haemotopoietic stem cell treatments still have gaps and few clinical trials supporting them. (rarediseases.info; Dornelles et.al, 2014).

What treatment should be started in the ED?

Patients with Mucopolysaccharidosis don’t require any emergency treatment in the ED for their underlying metabolic disease. They are, however, at increased risk of respiratory infections.

Mike is likely to have a community acquired pneumonia and needs to be treated accordingly with oxygen and antibiotics.

References

Adam , HH. Ardinger, RA. Pagon, S. E. Wallis, L. J. H. Bean, K. Stephens, & A. Amemiya (Eds.), GeneReviews® [online book]

Merritt JL,  Chang IJ. Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency.  GeneReviews® [online book], June 2019. Available at  https://www.ncbi.nlm.nih.gov/books/NBK1424/

Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov/diseases/7065/mucopolysaccharidosis 

Dornelles AD et al. Enzyme replacement therapy for Mucopolysaccharidosis Type I among patients followed within the MPS Brazil Network. Genet Mol Biol. 2014

Subtle Signs in Safeguarding: Giles Armstrong at DFTB19

Cite this article as:
Team DFTB. Subtle Signs in Safeguarding: Giles Armstrong at DFTB19, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.22259

Giles Armstrong reminds us that curiosity is needed for all of our young patients and that without it, we cannot truly care for them. We have to be the detectives and be prepared to ask the questions, not just to the routine questions, but to the unspoken ones. Giles presents us with some challenging, but very realistic scenarios, in which it is easy to miss the subtle clues if you don’t look for them.

This talk was recorded live at DFTB19 in London, England. With the theme of  “The Journey” we wanted to consider the journeys our patients and their families go on, both metaphorical and literal.

If you want our podcasts delivered straight to your listening device then subscribe to our iTunes feed or check out the RSS feed. If you are more a fan of the visual medium then subscribe to our YouTube channel. Please embrace the spirit of FOAMed and spread the word.

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Preserving fertility in oncology patients: Dan Yeomanson at DFTB19

Cite this article as:
Team DFTB. Preserving fertility in oncology patients: Dan Yeomanson at DFTB19, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.22384
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Dan Yeomanson is a paediatric oncologist dealing with teenagers and young people with cancer. Whilst the future ability to become a parent is not something that immediately springs to mind when a new diagnosis of cancer is made, you can be sure it is on the mind of the parents and the patient in front of you.

Of the ten patients that are diagnosed with cancer on any given day in England, eight will survive and one will be rendered infertile by their treatment.

 

DoodleMedicine sketch by @char_durand

This talk was recorded live at DFTB19 in London, England. With the theme of  “The Journey” we wanted to consider the journeys our patients and their families go on, both metaphorical and literal.

If you want our podcasts delivered straight to your listening device then subscribe to our iTunes feed or check out the RSS feed. If you are more a fan of the visual medium then subscribe to our YouTube channel. Please embrace the spirit of FOAMed and spread the word.

iTunes Button
 

 

Communicating with children with additional needs: Liz Herrieven at DFTB19

Cite this article as:
Team DFTB. Communicating with children with additional needs: Liz Herrieven at DFTB19, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.21387

Communication is vitally important in so much we do as clinicians.  Without good communication we can’t hope to get a decent history, properly examine our patient, explain what we think is going on or ensure appropriate management.

How to be an LGBTQIA+ young persons ally

Cite this article as:
Dani Hall. How to be an LGBTQIA+ young persons ally, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.23101

You know what the rainbow symbol is, right? It’s become synonymous with LGBT+ identity, solidarity and support and from Pride week to day-to-day living you’re likely to spot one fairly regularly. But, you probably also know that LGBT+ people are a minority group within our society, with huge inequalities in provision of healthcare, which is tragic given that this group have huge healthcare needs. As a step towards tackling this, national health services like the NHS and HSE (Ireland’s health service) have incorporated the rainbow with their logos and put them on a pin to show that the wearer is an LGBT+ ally, someone who an LGBT+ person can feel comfortable talking to about issues relating to sexuality or gender identity, someone who will listen to them with respect, someone who’ll create a safe space for discussion.

 

If you’re reading this post, you’re probably an advocate for LGBT+ rights. You might even have an NHS or HSE rainbow badge. Great! But wearing a badge is only one step towards being an ally. The wearer must feel confident that they will treat the young person with respect and that they’ll know what to do if a young person discloses to them. The wearer may be the first person a young person has ever felt confident enough to open up to about how they feel; it may be one of the most important moments of that LGBT+ young person’s life.

So, how can you be an LGBT+ young person’s ally?

You don’t need a rainbow badge (of course you don’t) to be an LGBT+ young person’s ally. But there are a few things that will help you on your way.

First, you need to understand what LGBT+ means.

Let’s start with some definitions.

 

+: inclusive of all identities (queer, questioning, intersex, asexual, pansexual amongst others), regardless of how people define themselves.

There are some key definitions of sexual and gender orientation and expression. Let’s go through them:

Sexual orientation is a description of who we are attracted to romantically or sexually, such as lesbian, gay, bisexual, asexual, heterosexual.

Gender orientation describes an internal sense of being male, female, neither or both, a psychological sense of who we are and who we feel we are.

Transgender: a person’s gender identity is different from the gender they were assigned at birth.

Cisgender: a person’s gender identity matches the gender they were assigned at birth.

Non-binary: a person who doesn’t identify as exclusively male or exclusively female.

Gender expression is a description of how we portray ourselves to the world; how we act, speak, talk and dress. It ranges from feminine, through androgynous, to masculine.

These definitions are explained perfectly by the Genderbread person.

 

By Sam Killerman from itspronouncedmetrosexual.com

 

OK. So you know a bit of the lingo. What can you do to be an LGBT+ young person’s ally?

 

Don’t make assumptions

We live in a heteronormative environment (where being heterosexual is considered the norm) and people often make heteronormative assumptions. This means we may make an unconscious assumption that heterosexual is ‘normal’ without even realizing we’re doing it. The example on HSEland’s LGBT+ Awareness and Inclusion e-learning module is a classic example of this…

Katy is an 8-year-old girl who has been brought to the emergency department by her two mum’s, Jill and Freda. She’s called into triage and, after inviting them to sit down, the triage nurse asks, “Which one of you is Katy’s mum?” Jill replies by saying, “Actually, we’re a family with two mothers.”

The triage nurse made a heteronormative assumption here. A more inclusive approach would have been for the triage nurse to ask Katy to introduce each of the ladies accompanying her. But, until we can shake heteronormative assumptions, it can be easily done; if you do make a heteronormative assumption, apologize and move on. And make an effort not to make a similar mistake next time.

Another assumption that’s often made is about a young person’s sexual identity based on their sexual behaviour.

Suzy is a 15-year-old girl who attends the emergency department with abdominal pain and dysuria. Her urine sample is dipped – no nitrites or leucocytes, but her beta-HCG is positive. She’s pregnant. With this information in hand, you go in and, after some gentle questioning (you’re pretty good at building rapport), you ask her how old her boyfriend is.  She looks at you with disdain and replies, “I don’t have a boyfriend.” Blustering a little, you ask whether she and her boyfriend have broken up. “I’ve never had a boyfriend,” she replies.

Suzy is attracted sexually and romantically to girls and has a girlfriend called Melissa.  And you’ve just lost her trust by assuming she was straight.  Adolescent lesbian and bisexual girls are also at risk of unintended pregnancies and acquiring sexually transmitted infections.

Yet another assumption people make is cis-normativity, the belief, or unconscious assumption, that that it is ‘normal’ to be cis-gendered.  It’s explained all too well by Emily, an 11-year-old transgender girl in the Mermaid’s #IfIHadAVoice video.

 

 

Once you feel you can actively make an effort not to make any assumptions, what else can you do to be an LGBT+ young person ally?

 

Use inclusive language

It can feel artificial to start with, but try and break the heteronormative barrier and ask a young person what their chosen gender or pronouns are.

Samuel is a transgender boy. His assigned gender at birth was female and the name on his birth certificate is Samantha. He has breast buds and looks feminine. You introduce yourself to Sam and his mother, Sandra, but as you’re explaining to Sandra that you’d like to speak to Sam alone, you say, “Would you mind stepping outside the room, while Sam and I speak together first? I’ll call you back in after I’ve examined her.” Sam looks stricken and Sandra gently explains that Sam is a transgender boy and uses the pronouns he/him.

If you accidentally misgender someone, apologize and correct yourself.  We often don’t know what name or pronouns someone would like us to use, and it’s safest to assume nothing and ask (and I mean ask everyone, because you will be caught out if you don’t), “How would you like us to record your details in the medical record?”

What about sexual orientation?  A sensitive way to ask a young person about their sexual identity is to ask if they have a partner or if they’re in a relationship. If they don’t have a partner, ask them if they’re attracted to boys, girls, either or neither.  Let’s think about Suzy again.

You’re about to see Suzy, a 15-year-old girl who attends the emergency department with abdominal pain and a positive urine beta-HCG. You call her into a cubicle and introduce yourself. After taking a history of her presenting complaint and past medical history, you start a HEEADSSS assessment (more on that later). Even though you know Suzy is pregnant, you know it doesn’t mean she’s heterosexual. As you start talking with Suzy about sexuality and gender identity, you ask her, “Are you attracted to boys, girls, neither or either?”

See what you’ve done here? Suzy can now tell you that she’s in a relationship with Melissa without breaking that rapport you’d already established, paving the way for further exploration about her sexual behaviour.

 

Reassure the young person their sexual or gender identity will be kept confidential

Let’s take a step back in time. Suzy may not feel comfortable telling you about her sexual orientation as she might be worried about whether you’ll keep this information confidential. Confidentiality is a huge one. We may feel torn between sharing information about a young person who’s at risk and maintaining confidentiality. Before you start taking a history, explain to a young person that anything you discuss will be kept confidential and private, between the young person and the team looking after them, but if you discuss anything really serious, like suicide or that someone was abusing them, then you’ll come up with a plan together to get the help needed. But, and this is an important but, even if there’s something that you need to seek help for, you’ll keep their sexual or gender identity confidential if this is what they want – this is private to them and you shouldn’t be outing the young person against their wishes.

 

Adapt the HEEADSSS assessment

We mentioned the HEEADSSS assessment.  HEEADSSS is a structured psychosocial history tool.  But when you use it, adapt it.

 

H: Home environment

Up to 40% of young people experiencing homelessness internationally are LGBT+ with figures estimated to be as high as 45% in Canada and 24% in the UK, with similar patterns reported in Ireland. A report by the Albert Kennedy Trust found that more than two-thirds of LGBT homeless young people in the UK have experienced familial rejection, abuse and violence and shockingly almost 1 in 10 16 and 17 year olds have undergone or been offered conversion therapy.

E: Education / Employment

Bullying is rife in schools. 1 in 2 LGBT+ young people in the UK and Ireland experience anti-LGBT bullying at school while 1 in 4 Irish LBGTI young people skip school to avoid anti-LGBTI bullying.

E – Eating disorders

Eating disorders are sadly also much higher in LGBT+ young people. Transgender young people are 4 times more likely to have an eating disorder compared to their cisgender peers. That’s 15% of transgender young people of any sexual orientation reporting an eating disorder (data from a national sample of almost 300,000 young American students). But it’s not just transgender young people at risk of eating disorders: any LGBT+ young person is at higher risk of an eating disorder of any type.

A – Activities

Enquire about activities. LGBT+ young people are less likely to participate in sports  than their heterosexual peers. Enquiring about their leisure time may reveal risk-taking behaviour (we’ll come to that under S for Safety).

D – Drugs and alcohol

Drugs and alcohol are also a problem for LGBT+ young people. Not only are LGBT+ young people more likely to use drugs and alcohol than their heterosexual peers, LGBT+ people under the age of 13 are more likely to have tried alcohol or marijuana than heterosexual young people aged 12 and under.

S – Sexuality

LGBT+ young people are more likely to have had sexual intercourse, have had sexual intercourse before the age of 13 and less likely to use birth control than their heterosexual peers. Birth control, that’s a big one. Remember I said earlier that teen pregnancy occurs in lesbian teenagers just as it does in cis-gendered adolescent girls? The same is true for STIs. I don’t need to say that questions around sexuality and gender identity must be asked sensitively, in a non-judgmental way, without assumption, about sexual identity and gender identity.

S – Suicide, depression and self-harm

It’s widely quoted, but mental health difficulties are much higher in LGBT+ young people, very likely related to a feeling of isolation and non-inclusion and as a result of verbal and physical abuse. More than 50% of Irish LGBTI young people aged 14-18 have self-harmed; 2 in 3 have seriously considered ending their life and tragically 1 in 3 have attempted suicide. The most common age for an Irish LGBT person to attempt to take their life is 15. These are shockingly high. But Irish LGBT+ young people mental health statistics mirror those across the world, in the UK, Australasia and North America.

S – Safety

Being LGBT+ can be lonely. LGBT+ young people are more likely to use dating apps to meet people.  You can just imagine the risk this exposes them to: unsafe sexual encounters, child sexual exploitation, and grooming. Statistics support this. These young people are more likely than their heterosexual peers to be physically or sexually assaulted.  Risky behaviour doesn’t end there. LGBT+ young people are also more likely to undertake another risky behaviour, such as not wearing a seatbelt.  Gently explore risk-taking behaviour.

 

I ask myself, “Why are all these problems seen in young people with an LGBT+ identity?” It’s likely due to minority stress – the stress associated with being treated as a minority group within our society.

 

Be an ally

Knowing the different LGBT+ terms isn’t important. What is important is listening with respect, not making assumptions and creating a safe space for discussion. An ally supports equal rights for LGBT+ people and let’s face it, we’re in healthcare because we want to help people. Healthcare is for everyone.

You may be the first person an LGBT+ young person meets in their acute healthcare. You may be the person they confide in. Their interaction with you may be one of the most important moments of their life

 

 

Where can I find out more?

Watch:

Thom O’Neill’s Be a supr doc for LGBT+ youth, SMACCDub

Aidan Baron’s Crash course in LGBTQI+, DFTB17

Read:

Butler G et al. Assessment and support of children and adolescents with gender dysphoria. Arch Dis Child 2018; 103 (7): 631-636

O’Neill T, Wakefield J. Fifteen-minute consultation in the normal child: Challenges relating to sexuality and gender identity in children and young people. Arch Dis Child Educ Pract Ed 2017; 102: 298–303

Salkind J et al. Safeguarding LGBT+ adolescents. BMJ 2019;364:l245

 

 

Selected references

Charlton BM et al. Teen pregnancy risk factors among young women of diverse sexual orientations. Pediatrics. 2018: 141(4); e20172278

LGBT youth homelessness: a UK national scoping of cause, prevalence, response, and outcome: the Albert Kennedy Trust, 2015

UK Government Equalities Office. National LGBT Survey: Research report. 2018. https://www.gov.uk/government/publications/national-lgbt-survey-summary-report

Higgins et al. The LGBTIreland Report: national study of the mental health and wellbeing of lesbian, gay, bisexual, transgender and intersex people in Ireland. 2016. GLEN and BeLonGTo

Diemer EW et al. Gender identity, sexual orientation, and eating-related pathology in a national sample of college students. J Adolesc Health 2015;57:144–9.doi:10.1016/j.jadohealth.2015.03.003

Kann L et al. Sexual identity, sex of sexual contacts, and health-related behaviors among students in grades 9-12 – United States and selected sites, 2015. MMWR Surveill Summ. 2016;65:1–202

Calzo JP et al. Eating disorders and disordered weight and shape control behaviors in sexual minority populations. Curr Psychiatry Rep. 2017; 19(8): 49

School Report. The experiences of lesbian, gay, bi and trans young people in Britain’s schools in 2017. Stonewall.

Bidell MP. Is there an emotional cost of completing high school? Ecological factors and psychological distress among LGBT homeless youth. Journal of Homosexuality. 2014:61(3);366-381

Abramovich IA. No safe place to go: LGBTQ youth homelessness in Canada: reviewing the literature. Canadian Journal of Family and Youth. 2012:4(1);29-51

https://www.hse.ie/eng/services/list/4/mental-health-services/connecting-for-life/publications/lgbt-ireland-report.html

Back to School

Cite this article as:
Andrew Tagg. Back to School, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.23086

It’s the first day of school here in Australia and parents and carers are waving their young children off with a kiss for their first day.  When I first saw the size of school bags I was amazed. How can children carry so much? Surely they will just fall over and lie on their backs waving their little legs in the air like distressed turtles? What on earth are they carrying in there that needs the Bag of Holding?*

 

 

What’s the problem?

Barbosa J, Marques MC, Izquierdo M, Neiva HP, Barbosa TM, Ramírez-Vélez R, Alonso-Martínez AM, García-Hermoso A, Aguado-Jimenez R, Marinho DA. Schoolbag weight carriage in Portuguese children and adolescents: a cross-sectional study comparing possible influencing factors. BMC pediatrics. 2019 Dec;19(1):157.

With reduced access to lockers, it seems that children are taking the weight of the world on their shoulders. Surprisingly, this Portuguese group found that Grade 5 children carried more than Grade 9 kids. This trend has been replicated in New Zealand with Grade 3 kids carrying around 7kg (13.2% of their body weight) and Grade 6 leavers bearing only 6.3Kg (10.3% body weight). Most school items have a set weight, no matter what grade you are in, but one might have thought that as the educational load increases over the years so might the weight of the textbooks. Perhaps an increase in the use of personal electronic devices and e-books accounts for some of this difference.

Surely carrying those giant bags can’t be good for the growing body? Neck, back, and shoulder pain are prevalent in adolescents and are closely linked by carrying heavy school bags. These effects take place when the bag weighs more than 10% of their body weight. In nearly every study girls carry more than boys. This makes sense as although they may carry exactly the same things in their rucksacks girls are generally lighter and so the weight of their bag, as a percentage of their total body weight, is higher.

 

Mandrekar S, Chavhan D, Shyam AK, Sancheti PK. Effects of carrying school bags on cervical and shoulder posture in static and dynamic conditions in adolescent students. International journal of adolescent medicine and health. 2019 Oct 30.

This group looked at how they carry their bags. Trying to be cool and swinging your bag over just one shoulder changes one’s static biomechanics.  The head and neck move forward to compensate and the carrying shoulder rises. Then, because the centre of gravity is shifted the subject would tilt their torso away. Could this be the cause of the stereotypical teenage posture? It took just five minutes of bag wearing for any postural changes to become evident. It has also been suggested that a heavier bag weight is associated with an increased incidence of lower back pain in teens and this, in turn, is linked with an increased risk of lower back pain as an adult.

If they are not wearing their back slung over one shoulder they are wearing it slung low, rather than high and tight on their shoulders, and most of the biomechanic data suggests this puts a lower degree of stress on their lumbar spines than letting it ride high. The higher position also lends itself to more forward rotation of the pelvis and greater hip flexion. And, of course, wearing your bag on the front, instead of on the back, causes a whole new range of issues.

Harmless?

Whilst this post is focusing on just one potential downside of heavy school bags, Wierseema et al. found 247 children with injuries related to backpack use between 1999-2000. These were due to tripping over them (28%), getting hit by one (13%) or just trying to put them on (8%). Actually wearing the thing was associated with another 13% of complaints – specifically back pain.

There is also a condition called backpack palsy or, to be more accurate, backpack brachial plexus palsy. It is much more common in military recruits but can occur in children. Often unilateral, the paraesthesia, pain and sensory loss in addition to possible muscle wasting are due to neuropraxia of the brachial plexus.

Losing weight?

Does it make a difference if teenagers take some of the rubbish out of their bags?

Rodríguez-Oviedo P, Santiago-Pérez MI, Pérez-Ríos M, Gómez-Fernández D, Fernández-Alonso A, Carreira-Núñez I, García-Pacios P, Ruano-Ravina A. Backpack weight and back pain reduction: effect of an intervention in adolescents. Pediatric research. 2018 Jul;84(1):34.

This Spanish group targetted teenagers with an educational intervention. This comprised of a one-hour session on posture, the effects of backpack weight and some healthy lifestyle advice. They found that the intervention arm of the trial did indeed have (statistically significant) lighter bags moving forward in the younger cohorts but not in the older ones.

Strapping in?

Mathur H, Desai A, Khan SA. To determine the efficacy of addition of horizontal waist strap to the traditional double shoulder strap school backpack loading on cervical and shoulder posture in Indian school-going children. Int J Phys Med Rehabil. 2017;5(434):2.

If you want to reduce the usual bag-induced postural slump these authors, looking at 60 children, suggest that adding a waist strap to the usual two shoulder straps could make all the difference.

So what does this all mean?

As parents, we need to keep an eye on what our children are actually putting in their bags (compared to what they say they are putting in there). Perhaps we should weigh the bags as often as the children and limit the number of keyrings and Beanie Boos attached to the outside? Perhaps we need to further embrace technology and allow for the increased use of electronic devices coupled with a much, much older technology and let them use bags on wheels, similar to carry on luggage?

There have been a number of initiatives to make the wearing of school backpacks healthier. Sri Lanka introduced a National Healthy Schoolbag Campaign aimed at improving the lives of children. Large textbooks were split into smaller volumes to make it easier to carry just one small book around and a multidisciplinary schoolbag regulatory council was set up to liaise with industry partners to help regulate bags. In the US the “Pack it light, wear it right” initiative focussed on what the individual could do.

 

*If you really want to know what is in their bags you need to look inside. This wonderful paper from Archives suggests that the vast majority (96%) of parents had never checked the weight of their children’s bags and 34% had never even looked inside

Forjuoh SN, Little D, Schuchmann JA, Lane BL. Parental knowledge of school backpack weight and contents. Archives of disease in childhood. 2003 Jan 1;88(1):18-9.

 

Other Selected References:

American Academy of Pediatrics. How not to wear a school backpack. AAP Grand Rounds. 2008 Nov 1;20(5):58-9.

Brackley HM, Stevenson JM. Are children’s backpack weight limits enough?: A critical review of the relevant literature. Spine. 2004 Oct 1;29(19):2184-90.

Kim KE, Kim EJ. Incidence and risk factors for backpack palsy in young Korean soldiers. Journal of the Royal Army Medical Corps. 2016 Feb 1;162(1):35-8.

Goodgold S, Corcoran M, Gamache D, Gillis J, Guerin J, Coyle JQ. Backpack use in children. Pediatric physical therapy: the official publication of the Section on Pediatrics of the American Physical Therapy Association. 2002;14(3):122-31.

Jayaratne K, Jacobs K, Fernando D. Global healthy backpack initiatives. Work. 2012 Jan 1;41(Supplement 1):5553-7.

Maurya S, Singh M, Bhandari PS, Bhatti TS. Backpack brachial plexus palsy. Indian Journal of Neurotrauma. 2009 Dec;6(02):153-4.

Rose K, Davies A, Pitt M, Ratnasinghe D, D’Argenzio L. Backpack palsy: A rare complication of backpack use in children and young adults–A new case report. european journal of paediatric neurology. 2016 Sep 1;20(5):750-3.

Talbott NR, Bhattacharya A, Davis KG, Shukla R, Levin L. School backpacks: it’s more than just a weight problem. Work. 2009 Jan 1;34(4):481-94.

Weir E. Avoiding the back-to-school backache. CMAJ: Canadian Medical Association journal= journal de l’Association medicale canadienne. 2002 Sep;167(6):669-.

Wiersema BM, Wall EJ, Foad SL. Acute backpack injuries in children. Pediatrics. 2003 Jan 1;111(1):163-6.

Catch 22

Cite this article as:
Ana Waddington. Catch 22, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.19122

James was 13 the first time I treated him in A&E. He was rushed in after being hit on the head with a metal bar, but he wouldn’t tell us what had happened. Some others had seen him, rushed him, started beating him with bats and bars – that was all he said he remembered. It was clear that James was already deeply involved in the world of gang violence, and it was equally clear that if he wasn’t saved from it soon this world would destroy him. We tried to get James to stay in A&E long enough to hear the results of his scan, but as soon as he got a chance he slipped out and back onto the streets. My fear was that before long the streets would deliver him back to us, only this time he wouldn’t be able to walk out again.

Legal and Ethical Quandaries: Ian Summers at DFTB18

Cite this article as:
Team DFTB. Legal and Ethical Quandaries: Ian Summers at DFTB18, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.18919

When most of us think of ethics and law our eyes roll and we picture Rumpole of the Bailey and quiet Sunday afternoons in front of the television. But his time Ian Summers came up with something unique. Pushing the boundaries of simulation as an educational medium he introduced us to a series of hypotheticals. Take your time to watch rather than just listen to your iDevice. You’ll learn about ethical practice in paediatrics but if you pause, take a step back, and press play again, you’ll see a masterclass of simulation in action.

 

 

 

This talk was recorded live at DFTB18 in Melbourne, Australia. With the theme of ‘Science and Story‘ we pushed our speakers to step out of their comfort zones and consider why we do what we do. Caring for children is not just about acquiring the scientific knowhow but also about taking a look beyond a diagnosis or clinical conundrum at the patient and their families.

 

If you want our podcasts delivered straight to your listening device then subscribe to our iTunes feed or check out the RSS feed. If you are more a fan of the visual medium then subscribe to our YouTube channel. Please embrace the spirit of FOAMed and spread the word.

 

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An approach to irritability and pain in the severely neurologically impaired child.

Cite this article as:
Henry Goldstein. An approach to irritability and pain in the severely neurologically impaired child., Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.18178

Logan is a 6yo who is presented to ED by his mother, one Tuesday evening as “just not himself“. Logan is well known to your local paediatric team for management of his GMFCS 5 spastic quadriplegic cerebral palsy. He has a long list of comorbidities, frequent hospital attendance and multiple unplanned admissions for, variously, aspiration pneumonia, seizures or irritability ?cause.