Extra Strategies to help with toilet training

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This is something of a personal issue for me since my 3.5 year old daughter has autism. She has twice shown an interest in toilet training and it was a disastrous affair since she simply lacked the interoception necessary to sense and control her bladder. At the time, she hadn’t been diagnosed and I simply accepted that she wasn’t ready.

I had researched toilet training by attending workshops, reading books, searching through blogs, and talking to other parents. I also wrote a series of articles myself which are aimed at neurotypical kids. These covered:

These are methods which will work for most families; however, some children need an extra level of support. For me, and others I know, it is because our children have special needs such as autism (ASD). Miss 3 struggles with sensory issues in a range of ways, including an awareness (and interpretation) of internal body signals such as the need to go to the bathroom. She’s not alone in this; many kids struggle with the leap from nappies to toilet for eliminating waste. Modern nappies wick away moisture and allow our little ones to stay comfortable without feeling a need to pause their play. We then place them in underwear and expect an awareness of being wet (sensory input) to result in a desire to be dry (perception) and a change in behaviour (action). In reality, these are all separate steps controlled by different regions of the brain and requiring different foundational skills; putting all of these together in a fluid and reliable manner is a complex change.

Extra Strategies to help with toilet training

Start by writing down all the challenges you associate with toilet training. Sort these into challenges for you (as a parent) and challenges for your child. Think about how you can address these challenges.

Write down goals for yourself and your child. Your long-term objective might be toilet training but there might be a number of short term goals that you need to address first (and this is where it comes in really handy that you’ve already written down all the challenges you need to work through).

Your child needs to feel safe and comfortable in the bathroom. It’s often a very functional room that adults spend little time in but the journey your child is embarking on means spending a lot of time in there. For those with autism and/or sensory issues, identifying triggers can be critical.

I knew my daughter didn’t like the bathroom but I thought it was because of associating it with nappy changing and discomfort as a result of very sensitive skin. I patiently worked as a detective to try and observe her behaviour and work out what she couldn’t tell me with words. One morning, I sat down with all the towels on the floor and struggled to find the right questions to elicit a response. I could see the progress in sensory integration and vocabulary work we’d been doing for months but she finds it impossible to answer general questions. At last I narrowed down my questions to ‘Which colour makes your body feel most safe and comfortable and still?’, ‘Which colour makes your body feel most muddly, shaky, and unhappy?’

Through a mixture of words and gestures, we were able to establish that a warm palette of soft sandstone and mocha were acceptable (as were accents of pink, white, and gold) but the jewel-like mix of towels in brightly coloured greens, red, and blue were highly upsetting. Other triggers, included the bright light (with the noisy ceiling fan powered by the same switch), the strong smelling soap, and the toilet paper (which to her felt like sandpaper).

I needed to identify which of these I could change (like the soap and towels) and which ones I could only minimize (like using the light in the adjacent room unless we were having a shower).

Sitting on the toilet requires both proprioceptive and vestibular skills; your child needs to be able to sense their body’s position in space and be able to balance. Consider sending time practising activities like naming which body part you are touching while they have their eyes closed, running, jumping, climbing, and walking on a balance beam.

The sensory feel of the potty or toilet seat is important. Some kids are happy balancing on an adult toilet seat, others are terrified by the feeling of space beneath their bare bum and the fear they might fall in. There are lots of options available on the market, my favourite is a cheap one – buying a toilet seat with an integrated flip-up junior seat.

Help your child understand how they need to be positioned on the toilet (and this requires modelling by a parent or sibling). Show them how they need to sit or move for each part of the process. For a girl, I’ve needed to teach her that her bottom needs to sit near the back, her knees need to be together, and her pelvis needs to be tilted down. I have a large textured sticker on the toilet seat (rear-middle) which she can feel with her hand to help guide her bottom. I also bought a super cheap mirror which we decorated together in colours she chose and which I hung opposite the toilet so that she could see herself and how she was positioned. The mirror also has the advantage of keeping her entertained!

Be aware that using the toilet is a complicated process; you can help your child by breaking down the steps into manageable tasks. Consider making a social story for potty training and putting visual reminders on the bathroom wall.

“Our sensory integration occupational therapist handed me pages of pictures showing the individual steps for using the toilet. Frankly, I felt overwhelmed. It’s such an automatic task that it hadn’t occurred to me how many micro-steps there are!”

“One game we play is ‘What’s under my bum?’ She stands with her eyes closed while I put a tiny plastic animal on a chair behind her. I guide her into sitting and she has to try and feel which side the toy is, roll her pelvis, and reach with her hand for it. She thinks it’s hugely funny; more than a game, we’re building skills she will need for the toilet – sitting, balancing, and movements associated with wiping.”

Help your child understand how using the toilet will fit into their daily routine; for instance, needing them to sit on the toilet as soon as they wake up in their morning. Communicate what your expectations are and consider making a poster about how the toilet fits into their daily routine. Some parents find it helpful to use a digital timer or a smart watch with vibrating alarms (like the FitBit) to help remind children to take regular toilet breaks. Teach kids phrases like ‘pause my play‘ for going to the toilet; this is less frightening (and less likely to cause a power struggle) then ‘stop’ as it means they can return to their task after sitting on the toilet.

Create an elimination diary so that you can get a feel for how often they are eliminating; this is incredibly useful for identifying patterns. You may also want to seek advice from a nurse if they are regularly holding urine for 6-8 hours or have no bowel motions for four consecutive days or more. Constipation can become a vicious cycle when combined with dehydration and anxiety; it hurts when they eliminate and so that makes repeating the experience seem like a bad idea! There are great articles on how to help strong willed children who may have anxiety around bowel motions; this one includes a template for an elimination diary. These child friendly resources from Continence Foundation of Australia explain how the bowel and bladder work and can be helpful to support discussions.

Think about your stance on motivations vs rewards. A motivation is something that encourages your child to do something (a behaviour or action), a reward is something that comes after an action is successfully completed. Often parents use rewards for toilet training, this may include everything from stickers to jellybeans. Instead, consider creating a special toilet treasure box as a motivation for sitting on the toilet and tying reward charts to keeping underwear dry (rather than eliminating waste). Be consistent with your child that the treasure box can only be played with while sitting on the toilet.

An ideal treasure box will have a lid and can be decorated with the child’s name and any potty party theme you are using. It’s a good idea to include several books (including at least one relating to using the potty / toilet). Give careful thought to your child’s interests and sensory needs. Try to include a few small toys they can choose at the shop; pictures they can look at; things they can manipulate with their hands; things that make sounds. Get inventive!

“We found a dog toy that looks like a rubber zebra and makes a hilarious laughing noise when it’s squeezed hard enough.”

“She has a few princess dolls that sit on their own potty while listening to the music from a wind up jewellery box.”

“We got one of those dinner trays with a bean bag base, painted the top black and added white lines. He zooms cars around the race track.”

Find underwear they feel comfortable in. It’s a big step moving from nappies to something which feels completely different; this is even more true for children with sensory issues, sensitive skin, or eczema. Some children find it helpful to have a breathable material, no elastic, and to be seam free. Lulu Funk is one such online retailer specializing in New Zealand made underwear for sensitive bottoms.

Accept that accidents will happen. They do and sometimes in the most ridiculously awful of places; remember that if you are calm and matter of fact about it that your child stands a better chance of internalizing this without getting weighed down by shame. It can also be helpful to focus on praising them for keeping their underwear dry (rather than focusing on eliminating in the toilet).

“One exercise we did was to bring out a favourite soft toy, two identical pairs of underwear, a bowl, and some room temperature juice. Elmo put on some dry underwear and a pretend Elmo did a ‘wee’ in the other underwear. We practiced touching ‘dry’ and ‘wet’; I talked about how sometimes it can be difficult to feel warm wee when the weather is really hot. I froze the wet underwear and later we practiced ‘wet’ and ‘dry’ again.”

It’s a good idea to teach your child where they should touch their underwear to check if they are wet or dry; boys are often wet higher at the front, whereas girls tend to be wet lower down.

Consistency, consistency, consistency. Having worked out your game plan, share it with everyone else involved in your child’s toileting. It helps to have teachers at daycare, kindy, or school following the same methods and routines as at home (as much as possible).

Decide what success looks like to you. It can be easy to assume that every family has an easy time toilet training but I promise you that there are plenty that struggle. As adults, we may have a reasonable expectation of using a toilet 100% of the time whereas lots of young kids simply get excited or distracted and forget. Think about your child’s developmental age, temperament, and the challenges you wrote down. Success may involve focusing on a single micro-task and then adding a second step once that has been reasonably mastered. Remember that the long term goal is not only to help your child master a skill that gives them another step towards independence, it’s also about helping them to feel positive about themselves and successful along the way.

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Stories still to come

I was so thrilled to have two of my seasonal pieces published by Spinoff Parenting in the lead up to Christmas. They were about tips and strategies to help ease the pressure and navigate the challenges of Christmas  for kids with autism and kids in general. I’m aware the website has been fairly quiet since (although the Facebook page is still ticking along) and it’s not due to a lack of ideas when it comes to writing. If I could have some telepathic decoder capture the articles I write while driving the car that would be brilliant!

During the school term I have 3-6 hours per week away from Miss 3 (who has a variety of special needs) and although that time is mainly spent running errands or undertaking domestic tasks that cause her sensory distress, sometimes I can squeeze in some writing as well. Those precious hours are also a much needed pressure valve to release some of the tension from being constantly with a little person who studies my every facial expression,  who is incredibly sensitive to emotional undercurrents and needs me to project happy calm 16 hours per day, and requires enormous amounts of support for everything from emotional self-regulation, to being comfortable in her body, OT work, communication, self-care, and play.

During the school holidays this turns into no hours per week and her anxiety being hugely escalated by the disruption to our routines. The summer holidays mean that not only is kindy on holiday but so are all of our other support staff (from occupational therapist to doctors). Events like severe summer storms can cause massive sensory distress and trigger several days of almost constant dysregulation that is exhausting for both of us. She sleeps in my bed because it gives her a sense of stability and security.  We use a lot of social stories and visual communication to talk about our plans for the day. There’s an increase in alternative communication: selective mutism, echolalia, and needing repetitive (and repeatable) scripted dialogue exchanges.

It all adds up to is me investing my energies into my daughter and storing story ideas (like nuts for the winter) for when I have more time. What I want to write about this year is the importance of embracing the new year with a growth mindset, how to encourage and develop character (rather than content) in our young children, how the Danish / Scandanavian parenting and schooling model compares to the NZ / UK / USA model and why we should consider adopting it. I also want to write more gardening and cooking pieces. I’m particularly interested this summer in the exploring the economies of a kitchen garden as well as taking a look at making use of vegetable parts that sometimes end up on the compost (like carrot greens, radish leaves, and squash blossoms).

Show love to your kids at Christmas (even when you’re exhausted)

Tantrums leading up to Christmas

I wrote recently about what it’s like parenting a child with autism at Christmas and I find myself continuing to reflect on the challenges different families experience at this time of the year. One of the topics under discussion in parenting forums this week is ‘Should children be punished for bad behaviour leading up for Chistmas?’, more specifically, should they be threatened that Santa is watching and won’t give them presents?

One side of the argument, is that children should be told that Santa (or a designated Elf on the Shelf) is watching and will punish children by leaving them a lump of coal (or a potato) in their Christmas stocking if they are naughty in December. Others suggest spending Christmas morning in bed and refusing to give out presents until 4pm (or a few days later) once children are suitably chastened. Some suggest that each time children are really naughty, a present is removed from under the tree and the child has to give it to charity.

My heart goes out to parents who are exhausted and struggling at the end of a long year, wishing for some much needed rest for themselves to recharge batteries, and all of the stress (logistical and financial) that planning Christmas involves. The reality, however, is that we need to constantly put on our superhero costumes, dig deep for forgotten reserves of energy, and remember that our tiny egotistical bundles of dark energy are exhausted children struggling with a see-saw of excitement, fear, change, and emotional confusion. They are also tired at the end of the year; they are tired from growing, from learning, from trying to keep their emotions in check, and they are likely to explode at home because that’s where they feel safe to do so. They are trusting us to love them unconditionally (even if it’s through gritted teeth).

Stop and have a think about what may be triggering your kids to explode. Are they tired? Are they hungry? Are they eating a lot of ‘seasonal treats’? Are they excited about school holiday adventures but then lashing out at the end of the day (or the next day)?

School holidays mean that all of their usual structure has suddenly disappeared and that can be as frightening as it is exciting. Talk with them about what routines are going to stay in place (i.e. will television still be restricted to certain times of day, will bedtime still be at the same time, will parents still be working on certain days). Come up with a visual planning chart for the school holidays and talk with your kids about any planned activities, holidays, play dates, or family visits. Make a list of activities they can do at home (or cut them up in strips and have them pull them out of a hat).

Talk to them about any expectations you have: to spend time reading a book each day, do an art activity, spend time outside, and play quietly with toys? Some kids might feel more comfortable having their free time largely unstructured, while others may thrive on digital timers and structured activities for at least part of each day.

If you’re at home with the kids, take the opportunity to try changes to diet. Put them on a wholefoods diet as much as possible and avoid anything with artificial additives and preservatives (they have a cumulative effect in the body, especially in little bodies, and can have a big impact on behavior). Drink water and milk, eat lots of fresh fruit, make salads, do home baking. Ditch the muesli bars, chips, and cookies, and make smoothies, carrot cake, or flourless pancakes.  Help get the kids involved in meal planning, supermarket shopping, meal preparation, and gardening.

We spend eleven months of the year taking responsibility for our parenting decisions, lets not shift the blame to Santa just because Christmas is approaching. If you want to factor Santa into discussions with your kids then try shifting the discussion from a negative / blame framework to a positive one; instead of threatening coal, try saying something like ‘Mum and Dad and Santa can see how hard you’ve been working all year and it seems like you’re tired and struggling at the moment.” Talk with them about the things they like about themselves and feel they are doing well, and also about the things they feel are difficult. Praise them when they are doing things well.

Consider giving only a few small presents from Santa that they can play with before the main gifts are unwrapped. Maybe I’m selfish but I want my daughter to be thrilled that I’ve spent time saving up and planning her main present rather than thinking it’s magically appeared from Santa’s workshop! Knowing that their main presents have come from family reinforces an understanding of being loved.

Spend time in the lead up to Christmas talking about what it means to your family. In some parts of the world, it’s a time of beautiful lights, decorations, and fattening foods because the outside world is pitch black most of the day and covered in snow (which might look pretty on Christmas cards but is icy and cold most of the time). It’s a little bit different when Christmas is celebrated in the middle of summer with blue skies and sunshine! Even if you’re not celebrating the birth of Christ, talk about why you are giving gifts as a family. Talk about celebrating all the good things you have, the things you are grateful for, and the people that you love. Maybe you could make a gratitude jar, flower, or tree. Older kids might like to keep a gratitude journal for the holidays (bonus – it also helps them practice their writing!)

Step away from the commercial aspects of the holidays, help them to make their own Christmas cards, make Christmas crackers, and write letters to friends they’re going to miss over the holidays. Encourage them to think about others by choosing something they like to eat to donate to a food parcel collection, or by mowing the lawns for grandparents, or washing cars during church service.

Tell them every single day that you love them.

 

For more helpful strategies – consider attending a free Incredible Years Parenting Programme which provides useful strategies for play, praise, academic, social and emotional coaching, positive reinforcement, limit setting, natural and logical consequences, problem-solving and effective communication skills.

How to overcome writer’s block

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How do I overcome writer’s block?

The most obvious answer is: write. Life isn’t always that easy though. I have written very little on the blog since the night the ambulance came and took us both to the hospital E.R. My little one was in respiratory distress with croup and I can still vividly picture sitting on my kitchen floor with the lights on, trying to count breaths out loud by keeping a finger on the base of her barely moving throat and praying for the ambulance to hurry. Bless the calm emergency dispatcher talking to me the entire time on the speakerphone cellphone. To further complicate matters, I was desperately trying not to throw up (even more so when three burly paramedics entered the kitchen). I spent the ambulance ride sucking on a homemade ice-block, my unconscious daughter in my arms, trying not to vomit in a very unladylike fashion all over the ambulance interior.

I’m extremely fortunate that my parents live in the same city as me; they spent an hour driving in and arrived around 3am. The nurses then whisked me off to the adult E.R. and I only caught a short glimpse of my daughter the next morning when she got discharged hours before me. I turned out to have a nasty cocktail of gastro, flu, and possibly a sprinkling of croup to top it off. They wanted to keep me in hospital for a few days but that wasn’t an option as a solo parent of a special needs child (with 24/7 care). As it is, she still has nightmares, months later, about being separated from me at the hospital.

The website continued ticking along as if by magic. That’s the wonder of online publishing, you can have posts lined up weeks or months in advance. You can add new ones and shuffle old ones around and simply let things take care of themselves. The website continued looking bright and shiny while, in reality, our lives have been a valley of darkness with quarantine (due to her fragile health), her surgeries to clear her ears, reduce her turbinates, remove her adenoids, and remove her tonsils, and a horrifically painful recovery period.

There’s been the very difficult, painful, time consuming, and paperwork laden process of having her autism, anxiety, and sensory processing disorder identified (as well as the recurrent abdominal pain + Irritable Bowel Syndrome). There’s been all kinds of behavioural and safety issues because she simply could not cope with the world. I haven’t written up posts but I have shared a few about fatigue, disruptive behaviour, sensory anxiety, and the daily struggles of neuro-divergent kids. There all kinds of ways in which she needs extra support and that means my days tend to run for 16-18 hours with hopefully 6 hours sleep.

Take today, for example. She slept in till 4.45am (sleep is a major issue in our household). As well as actively looking after her, there’s been: laundry, changing bed linens, making herb bread rolls from scratch (which also included grinding the sorghum flour and picking the fresh herbs), making bread from scratch, supermarket shopping, mowing the lawns, spraying weed poison along the edges, cooking chicken (pan frying to brown the skin, baking, making chicken stock with the juices and bones, and then making chicken broth soup with dumplings), dishes, so many dishes, giving Miss 3 and the dollies a bath due to a major poo incident, tidying up all the miniature toys that have covered the floor since this morning, practising counting, cutting out cardboard wheels and using push-pins to turn a box into a car, doing occupational therapy / sensory regulation exercises, etc…Her soy allergy, which includes emulsifiers and vegetable oil, as well as needing to follow a Failsafe list of additives to avoid, means a whole foods diet which means a lot of time in the kitchen (both preparing and cleaning!).  The only reason I could do the outdoor stuff or write up this post was because I paid a special needs carer to be with us for 3 hours this afternoon. If it sounds like I’ve chosen a busy day to write about, the reality is that every day is that busy (normally busier because there would often be a medical appointment to fit into the morning as well as everything else) and what’s unusual is that I actually had some help today instead of being entirely on my own.

Our circumstances are isolating so it’s nice to know that there are people from all around the world that read these posts. Hopefully, I will start writing more often – if only because there are so many recipes floating around on scraps of paper!

Rewards for Potty Training

Reward Charts can help potty training.

Reward Charts can help potty training.

When starting potty training it’s a good idea to think about how you’ll keep your toddler motivated. Some toddlers will simply want to be ‘just like my big brother/sister’; others will respond to lots of praise; others need something tangible to work towards and that’s where reward charts can be useful.

Potty Training! It’s something that we all experience as parents as we help our children transition out of nappies. I’ve posted previously on:

Reward Charts

Sometimes toddlers need a little extra positive reinforcement to start (or stick with) potty training. Reward charts can be a great way of helping them to see progress, learn about delayed gratification, and learn about working towards achievable goals at a young age.

There are lots of great ideas online for printing out your own reward chart that you can stick on the fridge (like these free to print charts). The important thing is to choose a theme that will tie in with your toddlers interests. I liked this magnetic one from Kmart because I knew Little Miss would like moving the magnets around.

Tip: If you have multiple children, it’s a good idea to instigate reward charts for siblings as well to prevent tantrums, jealousy, and rivalry! If your 2 year old is toilet training, maybe your 5 year old can have a reward chart for homework or chores.

Rewards

These need to be relevant to your child’s interests, realistic for your budget, and appropriate in scale. A trip to the park, a book, a small toy, are more realistic then promising a trip to Disneyland! Also, keep in mind that a reward comes after the action has been successfully taken (and a bribe comes before).

Sit down with your child and be really clear:

  • what they will receive points for (i.e. stickers on their reward chart),
  • what rewards they are working for, and,
  • how many points they need to obtain those rewards.

Encourage your child to brainstorm with you what those rewards are going to be. Possible rewards include:

  • Items (toys / books)
  • Activities (trips to the park, library, the zoo)
  • Food (jellybeans, McDonalds, restaurant)

You may want to start off with reward stickers for:

  1. each wee / poo in the potty (or toilet), and then move towards
  2. stickers for staying dry at home that day,  then,
  3. staying dry at kindy, then,
  4. staying dry overnight.

The important thing is to scaffold your expectations and help your child towards success at a pace that’s realistic to them. Remember that every child is different.

Items

Toys or books can be easily tailored to your child’s interests. It’s a good idea to have a mix of rewards that they can work towards (with larger or more expensive items requiring more points).  If you take them to a store to choose rewards, it’s a good idea to guide their choices by offering them a few options and letting them select one.

It’s also a good idea to guide them towards choosing toys that you were thinking about getting them anyway and which you can afford. Consider items that will encourage open-ended imaginative play and remember that you don’t need to buy ‘branded’ items for your kid to have fun.

We chose a (non-branded) My Little Pony and a wooden pizza – each slice and topping has to be earned so it has a good mix of short and long term gratification.

Activities

Again, these can be easily tailored to your child’s interests. You may want to have activities close to home, or that are free, cost fewer reward points and then have costly activities be something they have to save more points to earn. Not all activities have to be away from home either!

  • At home: build a tent out of sheets & chairs; make a collage; parent play with cars / dolls / animals / trains for 20 mins without distractions; have a tea party with toys; invite a friend over for the afternoon.
  • Free: go to a park; feed ducks; favourite playground; go to a beach; bike ride; art gallery; museum.
  • Paid: go to an indoor attraction (like a playground or trampoline park); go to zoo; go to observatory to see stars; movie.

Food

Food can be a controversial choice because it risks weighting food choices to show that some foods are inherently more desirable than others. In saying that, plenty of parents have chosen to use a jellybean or other small treat as a reward.

For more creative options, why not choose food related activities instead. Reward points could be saved towards things like:

  • doing baking together,
  • helping to make dinner (or choosing from a list of dinner options),
  • buying and planting vegetable seedlings, or micro-greens for the windowsill,
  • going to a cafe for a fluffy or scone,
  • going to a restaurant for lunch / dinner.

What are turbinates and why do they need surgery to reduce them? (Are you sleeping badly? This may be why!)

What do swollen turbinates look like

What do swollen turbinates look like

If you’ve never heard of turbinates before then you’re not the only one! As long as they’re working well then the subject is unlikely to ever come up; they are also not something that your regular doctor (GP) is able to review – finding out there’s a problem first requires a referral to an Ears Nose Throat (ENT) specialist because of the symptoms you are experiencing.

Your turbinates can have a surprisingly large impact on your quality of sleep; this is especially true in young children and the problems are even more exacerbated if they also have troubles with their ears, adenoids, and tonsils.

What are turbinates?

Turbinates are bony structures (covered in moist tissue called the nasal mucous membrane). Inside your nose there are three sets of turbinates: upper (superior), the middle, and the lower (inferior).

Lateral nasal airway

Lateral Nasal Airway: Turbinates, Adenoids, Eustachian Tube Opening

Why do we need turbinates? What do turbinates do?

The turbinates have several important functions:

  • Help warm and moisturize air as it flows through the nose.
  • Protect the openings into your paranasal sinuses.
  • Help create airflow through your nose (important for your sense of smell!).
  • Trap micro-organisms (like viruses) and pollutants (like pollen).
  • Help the voice to resonate (i.e. they affect how we sound).
  • Produce mucous to help clean out the nose and assist the cilia in their work.
  • Help to regulate pressure in the sinuses.
  • Help the nose and sinus cavities to drain.
  • The turbinates play an important mechanical function when we sleep.  When you sleep on the right side, with the right turbinate down, over time the right turbinate fills up with fluid and expands so that it pushes against the septum; this makes you turn on the left side until that side fills up and turns you again. If the turbinates are not functioning correctly then you may wake up feeling cramped and sore with achey muscles.
Turbinates and sinus cavities

Feeling the pressure? Healthy turbinates help regulate pressure and drainage of the sinus cavities.

What causes turbinates to swell?

One of the most common causes of swollen turbinates (turbinate hypertrophy) are airborne allergies (allergic rhinitis) such as grass or weed pollen, birch tree pollen, or dust mites.

Other causes can include repeat upper respiratory infections, hormones, drugs, medication (i.e. as a complication from long-term nasal spray use).

Healthy inferior turbinate

Healthy inferior turbinate – you can see quite clearly that there is a tunnel for air to flow freely past the turbinates.

Swollen turbinates

Swollen turbinates – you can see how they have swollen and are bulging out across the airway to the nasal septum.

What are the possible side effects of swollen turbinates?

  • Stuffy nose
  • Headache
  • Facial Pain
  • Pressure (often in forehead). In young children this may result in behavioural issues, trouble concentrating, or head banging.
  • Nasal drip
  • Loss of Sense of Taste and/or Smell
  • Mouth breathing, noisy breathing, and/or snoring. This is especially problematic if adenoids and/or tonsils are also swollen and obstructive sleep apnea develops.
  • Fatigue. Children might seem like they’re getting enough hours of sleep but in reality the quality of sleep is poor because their body is struggling to get enough oxygen through the night. It’s a bit like starting each day on a half tank of gas.
  • Sore, cramped, achey muscles in the morning. Healthy turbinates play an important mechanical function when we sleep; they are key to helping us unconsciously change which side we are sleeping on through the night.
  • Developmental delays. Sleep is critical for young children. During those early years, they are rapidly growing and learning. They need sleep to focus during the day; to have time for their brain to make connections between all the things they have learned or experienced; and their brain releases a growth hormone while they sleep. Poor sleep, fatigue and pain/discomfort, trouble hearing: these can make it harder for them to stay on track.
  • Behavioural difficulties. Poor sleep, fatigue and pain/discomfort, trouble hearing: these can result in daily misery that children don’t know how to express.

Why do turbinates need surgery?

An Ears Nose Throat (ENT) specialist will be able to examine the interior of the nose quickly and painlessly during outpatient appointments; they may also opt for imaging scans such as x-ray or CT.

It is likely that they will suggest trying non-invasive means initially to see if this reduces the swelling, This is likely to involve a steroidal nasal spray and anti-histamine medication (in the case of allergic rhinitis). They may also recommend additional saline spray / drops to help keep the nose irrigated, or using a humidifier.

If these options do not work an symptoms have not been alleviated then they are likely to recommend surgery. Note: it is important that turbinates are reduced (not removed) and they will slowly regrow; in order for them not to become swollen again, any other underlying issues must still be addressed.

What does turbinate reduction surgery (turbinoplasty) involve?

Turbinates perform highly important functions and removing them entirely can cause a raft of new issues; surgeons will normally opt to reduce the turbinates. There are different methods that can be used; some remove tissue and others aim to shrink them through other means.

A procedure called submucosal resection is a common technique used to treat enlarged turbinates. With this procedure, the lining of the turbinate is left intact, but the “stuffing” from the inside of the turbinate is removed. As the turbinate heals, it will be much smaller than before surgery. Sometimes, this resection can be performed with a device called a microdebrider. This device allows the surgeon to remove the “stuffing” through a small opening in the turbinate. In some instances, more of the turbinate is removed.

Some of these methods shrink the turbinates without removing the turbinate bone or tissue. These methods include cauterization, coblation, and radiofrequency reduction. In each of these methods, a portion of the turbinate is heated up with a special device. Over time, scar tissue forms in the heated portion of turbinate, causing the turbinate to shrink in size.

Turbinoplasty is generally an outpatient procedure performed under general anaesthetic and patients can go home the same day.

Want to find out more about surgery or risks? The American Rhinologic Society has useful information.

What happens after surgery?

You can expect to have pain, fatigue, nasal stuffiness, and a clear fluid nasal discharge for several days after surgery. If this was the only surgery being performed then pain is generally mild  and typically well controlled with pain medications. A saline spray and/or steroidal nasal spray are likely to be recommended to use for several weeks after the surgery.

Swelling as a result of the procedure means that there may still be snoring for a week or two after the surgery, as well as a general feeling of stuffiness. The fluid discharge will generally begin to improve and crust after the first week.

Patients may be off school or work for a week and are recommended to avoid strenuous activity for two to three weeks afterwards.

 

What are tonsils and why do they need removing? (What is a tonsillectomy or adenotonsillectomy?)

How inflamed tonsils compare with normal tonsils

How inflamed tonsils compare with normal tonsils

What are tonsils?

Tonsils are soft tissue located at the back of your throat; they are part of the body’s lymphatic system (so are adenoids). When they are working properly, they help to recognise bacteria and viruses entering through the mouth and produce white blood cells to fight off infection.

Tonsils are particularly useful during childhood while the body is still encountering new bacteria and viruses for the first time and building up the immune system. Doctors seem to be of differing opinion as to how useful they are as adults; I’ve some that have called them redundant and unnecessary, I’ve also met other doctors who view removing them as an absolute last resort.

Why do tonsils need removing?

Tonsils may temporarily swell while fighting infection, sometimes they become so swollen that they result in a very sore throat and fever (tonsilitis), they may also partially obstruct the airways and not respond to non-invasive treatmeants.

Surgery may be recommended to help treat:

  • Multiple case of tonsillitis (seven cases of tonsillitis or strep in the last year, or five cases or more over each of the last two years).
  • Breathing problems related to swollen tonsils
  • Frequent and loud snoring
  • Periods in which you stop breathing during sleep (sleep apnea)
  • Bleeding of the tonsils
  • Trouble swallowing chewy foods, especially meats
  • Cancer of the tonsils

Back in the 1980s, having your tonsils out was kind of a childhood rite of passage. It was a very common procedure and often parents had already experienced a tonsillectomy in their own childhood. Medical opinion has now swung in a different direction and there is a more stringent list of criteria that often needs to be met (as well as requiring parent consent / advocacy). For a balanced medical opinion, try this post by Christopher Johnson (a pediatric intensive care physician) .

What is tonsil grading?

Surgery is most likely to be recommended if tonsils are consistently swollen at Grade 3 or Grade 4 coupled with other complications (such as snoring and/or sleep apnea).

What are the 4 grades of swollen tonsils

What are the 4 grades of swollen tonsils?

Basically tonsils are graded based on how much of the airway they block.

  • Grade 0 = tonsils are within the the tonsillar fossa
  • Grade 1 = tonsils obstruct 0-25% of oropharyngeal airway
  • Grade 2 = tonsils obstruct 26-50%
  • Grade 3 = tonsils obstruct 51-75%
  • Grade 4 = tonsils obstruct 75%

What are the possible side effects of swollen tonsils?

  • Fever / temperature. Keep in mind that children can react in their own individual ways – they may keep getting low grade temperatures instead of a fever.
  • Runny nose and congestion (as well as the sore throat).
  • Difficult or painful swallowing.
  • Swollen and tender glands (lymph nodes) on the sides of the neck.
  • Bad breath.
  • Fever and chills.
  • Tiredness and headache.
  • Stomach upset or pain.
  • Mouth breathing, noisy breathing, and/or snoring (due to enlarged tonsils blocking the airways). Obstructive sleep apnea. The swollen tonsils and/or adenoids can intermittently block airflow. It sounds like your child is silent and then there’s a big noisy sucking in of air.
    • In Miss 2 it can be so loud that I can hear it through her closed bedroom door and can sound like something’s fallen off a shelf and hit the floor! It’s a crappy and frightening thing as a parent that can result in just sitting with them in the dark either to check that they are breathing or to give them a gentle nudge to help them breathe again. If you’ve spent time with them hooked up to an oxygen saturation monitor then you’ll be familiar with what a stark difference there is between their oxygen levels when alert and upright versus lying prone to sleep.

  • Fatigue. They might seem like they’re getting enough hours of sleep but in reality the quality of sleep is poor because their body is struggling to get enough oxygen through the night. It’s a bit like starting each day on a half tank of gas.
  • Developmental delays. Sleep is critical for young children. During those early years, they are rapidly growing and learning. They need sleep to focus during the day; to have time for their brain to make connections between all the things they have learned or experienced; and their brain releases a growth hormone while they sleep. Poor sleep, fatigue and pain/discomfort, trouble hearing: these can make it harder for them to stay on track.
  • Behavioural difficulties. Poor sleep, fatigue and pain/discomfort, trouble hearing: these can result in daily misery that they don’t know how to express.

Keep in mind that young children (i.e. toddlers) may not be able to describe their symptoms to you and it may not even occur to them to do so (especially if they chronic health issues). They may also be confused by referred pain; the ears and throat share nerves (as well as being linked by eustachian tubes) so they may say their ear is sore when the infection is actually in their throat. Another possibility is if they keep exhibiting teething type behaviour well after all their teeth are in (i.e. chewing on fingers or a dummy constantly, lots of drool) combined with a temperature and bad breath – the cause may actually be their tonsils!

What does surgery (a tonsillectomy) involve?

Surgery will normally take place at a hospital (probably as an outpatient). The doctor will review medical history in advance and make recommendations about pausing medications. You will normally be advised not to take anti-inflammatory medications within 7 days of surgery. They will also discuss post-operative pain medication.

The day of the surgery will involve a period of fasting; food or water won’t be permitted because they can impact the anesthetic. It’s a good idea to have family support and a game plan of how to distract your child; an older child may understand why they can’t eat but a toddler is likely to just focus on the fact that they are off routine and they are HUNGRY!

During surgery, your child will be under a general anesthetic. The surgeon will enter through the mouth and the tonsils will be removed with an electrical cauterizing unit.  You can watch videos of surgery on YouTube but they can be a bit difficult to stomach; I preferred this video of a digital tonsillectomy surgery.

adenotonsillectomy

Adenoids and tonsils

Often the adenoids will be removed at the same time as the tonsils (if they are also swollen); this is termed an adenotonsillectomy. Click here for information about the adenoids.

What happens after surgery?

Depending on the age of your child, they may keep them in the hospital overnight for monitoring or they may go to a recovery room and then go home the same day. You should be given a pamphlet with information about post-op care (i.e. like this tonsillectomy guide).

Your child may feel quite groggy and tired for the next few days and also have some nausea; vomiting once or twice is normal but contact your doctor if vomiting persists.

A light, cool diet for the next few days is generally recommended (avoid hot liquids or spicy food) but doctors will often recommend that children eat whatever they want – the abrasion from bread or crackers will actually help to clean the area. (That’s not to say there won’t sometimes be screaming pain because a sharp cracker edge has just struck the surgical site).

Some doctors will prescribe antibiotics. They will normally be prescribed painkillers (like Pammol and Tramadol) and anti-inflammatories (like Nurofen); if your child won’t take the fully funded options consider buying over-the-counter replacements (for kids) that have been flavoured.  It is important to keep on top of their medication (including waking them up around the clock for a few nights) as the pain is severe; it will often peak somewhere around around Days 5-9 due to the way the membranes heal and can be excruciating.

It’s important to keep them rested and hydrated – even if this means just getting small regular sips of water, lemonade ice-blocks, or melty ice=cream into them; overall, the fluids are more important than food.

Common side effects will include:

  • Swollen tongue
  • Bad breath (like a hyena!)
  • White coating on the tongue
  • White scabs over the tonsils

Your doctor will talk you through potential complications and when to seek immediate medical care – i.e. if bleeding occurs (it can be life threatening); they may be able to resolve with medication or surgery may be required.

They need lots of rest for two weeks to promote healing and will be off school during this time due to the risk of infection.  They will also generally have several weeks off sports, exercise, and swimming.

Keep in mind that removing tonsils may only be one part of a wider treatment plan. If the chronic inflammation was linked to allergies then you will still need to work with a doctor to create an ongoing allergy treatment plan.

How to give your toddler a spa bath in winter!

Spa bath in a flexi bucket

I love flexi buckets! I have two: one big pink one and a small yellow one. They can be used for so many things from hanging out laundry, to clothes hampers, packing stuff to visit relatives, toy storage, and winter spa baths!

Miss 2 loves asking for a bucket bath when the temperatures start dropping. Just sit the bucket in your bath, fill it to a nice warm temperature from the taps, add a gentle-on-the-skin bubble bath, and pop in your toddler.

The Goldilocks principle applies when choosing your flexi bucket: not too big, not too small, but just right. You want your toddler to be able to sit upright comfortably and have water up to their armpits (parental supervision is recommended as per any bath). You’ll find that you use much less water than a normal bath and they’re warmer because more of their body is consistently covered.

The great thing is that this also works in a shower! I’ve also seen friends put multiple buckets in one bath (of assorted sizes) so that siblings can spa together (and without fighting).

You can even do this during summer! Put the empty bucket outside on the lawn (water is heavy) and ferry warm water to it. Presto! An outdoor bath in the sun and a happy excited child!

Tip: These are also great to take to a beach so that you can create a mini pool for younger siblings or wash off sandy feet.

Spa bath fun!

What a nightmare! Getting hospitalised for Mother’s Day at the same time as my toddler!

Hospitalised for gastroenteritis

Hospitalised for gastro

Being a solo mother for a medically fragile child with chronic health issues (including multiple food and airborne allergies) poses a heap of challenges at the best of times. Having us both hospitalised at the same time was incredibly difficult and it frightens me to think what would have happened if my family hadn’t been willing to spend an hour driving in to us and forgoing sleep for about 40 hours.

We actually had quite a pleasant Mother’s Day to begin with. We went to a playgroup for a short time and then went on to a wonderful Solo Mother’s event that was being held.

I’d spent Saturday cleaning like mad (which takes hours because of her dust mite allergies) and then feeling unwell with a nose running like a faucet. I still wasn’t feeling well on Sunday and figured I might have a mild cold.

Things all went downhill at 1am (so, I try to tell myself in an upbeat way that really Mother’s Day had finished) when a loud barking noise coming from my daughter’s room woke me and I found her struggling to breathe. Her story is here.

When the ambulance crew arrived at 1.30am, I was deperately trying to keep my daughter upright (who was determined that she wanted to be alone, prone, and asleep), trying to wake her up to full consciousness, and trying not to throw up.  There’s no time to be sick when your a solo parent with a sick child – I also had a sufficiently high embarassment reflex not to want to hurl in front of the three lovely (male) paramedics; there’s something that’s just easier about vomiting in private.

I spent the ambulance ride sucking on a home-made coconut milk ice-block trying to convince myself not to vomit and looking after Miss 2.

I’m so grateful for all of the lovely staff that helped us at the hospital. A nurse read Miss 2 picture books while I was busy vomiting in the hospital bathroom.  My embarrassment reflex declined as I got sicker; I ended up just drawing the curtain for her room and being grateful for the many vomit buckets the hospital stocks.

My parents spent an hour driving in to us and while Nana stayed with Miss 2, Poppa drove me (in the opposite direction) to collect the car seat and various things from home. This took a long time as the vomiting and diarrhoea kept me in the bathroom a lot and the pain often felt like a thousand glass daggers writhing through my intestines. At times I was crawling through my home on my hands and knees on gritted teeth determined to pack. Poor Poppa! he so wanted to help but couldn’t do more than watch quietly as I assembled everything we needed; it can’t have been easy either having me dry wretch all the way back to the hospital.

We finally got back to the Children’s Hospital and the nurses transferred me to the adult hospital’s Emergency Department. Nana and Poppa stayed with Miss 2 while I got admitted. I was so wracked with constant vomiting that I couldn’t even speak to the doctor unless it was in-between the waves of pain (and more importantly once the anti-emetic had kicked in). They did various tests for infection, a chest x-ray, and were monitoring me in case my appendix burst or my gallbladder (squeezed dry by that point) did anything gnarly. Apparently I was horribly pale, shivering uncontrollably (bless the nurses that brought heated blankets!), and looking pretty crap (aside from the vomiting and hobbling to the adjacent toilet), I went through two IV bags of fluids and a bunch of drugs before I was stabilised enough to sip water. As really awkward timing, Miss 2 got discharged almost 6 hours before me! Thank god Nana + Poppa were with her as I’m not sure what would have happened otherwise – it certainly would have been a far more traumatic experience for both of us!

Overall, they thought I had a severe case of viral gastroenteritis with severe pain from the inflammation + a cold/flu virus, and possibly Miss 2’s croup as well. I was unwell enough that they were considering admitting me into of the other wards but Miss 2 needed me so I got discharged to family care and monitoring instead (as there’s still a risk the appendix could progressively worsen). I’m so grateful that this has happened at a time when my family can help care for us as I can’t walk much without the pain starting and am pretty much living on mum’s Fail-safe Porridge and Rehydration Therapeutic Tonic.

What is croup and how does it effect toddlers?

What does croup look like in toddlers?

What does croup look like in toddlers?

Croup is a viral illness in young children which causes narrowing of the upper airways. Croup is often a mild illness but can quickly become serious, so do not hesitate to get medical help.

The funny thing about croup is that it’s like the vampire of toddler illnesses. During the day it may not have a visible impact beyond your toddler eating little (and lets face it sometimes they do want to live on air and crayons) and sounding hoarse. For Miss 2, it was that she woke up on Mother’s Day having largely lost her voice, was eating little, and had a mild temperature in the afternoon.

Toddlers have softer windpipes than older children so it’s often when they lie down to sleep that the narrowed airways will become more apparent. Their breathing may start to wheeze and become progressively more of a struggle; it can also cause a strange cough (stridor). What does a croup cough sound like in a two year old? It sounds a bit like a lion purring or a seal bark; personally I think stridor sounds most like a lion coughing up a fur ball.  The animal metaphors might sound cute but the cough can be so loud that it’s enough to travel between rooms and wake you up at night; it can also be frightening if it’s the first time you’ve heard it and you have no idea what it means!

For many children, croup will be a mild illness (which can recur) and which can be treated at home. For others, they need to see a doctor or require urgent medical care. In New Zealand there is a registered nurse available 24/7 to provide free health advice on Healthline (0800 611 116); they can help assess your child and advise whether to ring for an ambulance or wait to see a doctor the next morning.

Personally, I think that croup is worse for children that have allergies. In fact, as well as viral croup, there is also a form of spasmodic croup which may be caused by Gastric Reflux Disease (GERDs) or by allergies. I’ve also read blog posts from other allergy families where croup has become a recurrent problem for their toddllers.

For Miss 2, I was woken at 1am by her strange noises (the croup cough) and found her struggling to breathe; she’d also started a mild fever while she was sleeping. She already has enflamed adenoids, turbinates, and tonsils as a result of her airborne allergies (and any undiagnosed food intolerances) so having her airways swell further was frightening.  My gut instinct said she needed immediate help and I rang Heathline to check if I should was right, if I should drive her to the children’s hospital (which would delay things) or ring an ambulance. After listening to her breathe, I was told to ring an ambulance.

She was so sick that she slept most of the night in the Emergency Ward bed; she needed to be kept semi-upright (to help her airways). Her fever worsened, even with parecetamol, and didn’t break until morning. The recommended treatment for croup is oral steroids. This made me nervous as:

  • she’s allergic to topical steroids
  • even temporary steroids can cause massive behavioural changes and tantrums in toddlers.

Her allergy to topical steroids results in awful periorficial dermatitis rather than anaphylaxis and having her airways potentially constrict in life threatening ways – so I opted for the oral steroid.

It definitely helped with her breathing. She still had virtually no voice on Day 2 or 3 (it might take a week to return) and I still had to sit up with her on Night 2 but her breathing was manageable at home and no where near as bad as the night she was hospitalised. Thankfully she also hasn’t had any major tantrums so far; mind you, she’s probably too tired to tantrum yet. She’s eating very little as her throat is so sore and is mainly sticking to formula, sips of water, and the occasional mouthful of soft foods.

NOTE – Thank you to all the readers that have shared their stories with me!

I continue to feel that croup can be a much more serious illness for families with medically fragile children – including food allergies, airborne/environmental allergies, asthma, and reflux. Doctors will most commonly look for croup in babies and very young toddlers but plenty of allergy families have shared that their children have continued to have viral croup up to age 10!

If you’re familiar with what a croup cough sounds like then do advocate on behalf of your child for medical care if it’s needed – you’re the one awake in the wee hours of the night hearing it (and they may not have the cough during the day)!  Don’t hesitate to ring for an ambulance at night if your child is struggling to breathe!

It’s worth investigating what charges there are for your local ambulance service and if they have a subscription service. If you live in New Zealand, it’s around NZD$90 for each medical emergency (non-ACC) call-out of a St John’s ambulance but you can get an annual ambulance subscription for the whole household for NZD$65 per year. I’m so glad that I signed us up for membership after her ambulance trip just before Christmas!