Solving a mystery

For the past two years, Lil Z has been a great sleeper. She goes to bed between 6.30 and 7pm and gets up between 7 and 8am. It’s all very civilised. Plus, it gives us time to give Vegemite a bit of undivided attention and for QB and me to recharge our physical and emotional batteries. Of course, there are nights when she wakes up, but it is usually for an obvious reason, such as she’s sick, her feeding tube is leaking (our fault!) or her seizures are on the increase. It is also usually easy to resolve the problem and get her back to sleep – reposition her (her back brace makes it difficult for her to roll over), give her a cuddle, or – worst case – give her some Panadol. There are nights where she is distressed after a seizure, nights where I just have to cuddle her and rock her until she calms down and falls asleep, but these are rare, and I know what to do, however exhausting it may be…

It wasn’t always like this. As a baby, Lil Z rarely slept more than 2 consecutive hours during the night and spent her nighttime waking hours screaming – unless I was holding and feeding her. Whereas Vegemite fell into a decent sleep routine early on in her life, Lil Z just never seemed to find hers. I bought every baby sleep book on the market, tried every expert recommended routine – nothing worked. We stayed in the room but avoided eye contact (meaningless for a child with CVI), we shushed, we patted, we walked the floors, we left her to cry, we kept her up later and put her to bed earlier – it was all useless. The only thing that would buy me more than 2 hours of sleep was sharing a bed with Lil Z, so when she woke, she could breastfeed, snuggle and go back to sleep without me getting out of bed.

This was a unique kind of hell for me, because I LOVE my sleep. And I need sleep to function properly. When I’m tired I fall into a bad cycle of living on caffeine and sugar to keep myself functioning at work, but don’t have the energy to exercise, and end up being short-tempered and grumpy. So, the first year with Lil Z was tough.

Then we had a breakthrough. First her seizure medications were adjusted – increased significantly, in fact. Second, Lil Z and I spent a week at the Ellen Barron Family Centre – a sleep clinic for babies and children in Brisbane. The combination was amazing and suddenly Lil Z was calmer and more able to sleep and we were back on a reasonable routine with Z sleeping in her own bed. And that has been the situation ever since.

Until recently, anyway. It started when Lil Z had a cough that kept waking her in the middle of the night. She didn’t seem unwell during the day, maybe a little snottier than usual, but at night the tickly cough would return. It would wake her up and eventually she’d cough up some goo, which would make her gag, which in turn would make her vomit. The trick is to leap out of bed and dash into her bedroom before she was sick – to prevent a middle of the night pyjama and bed linen change for her. I am the master of the half-asleep 10 meter dash. I was even able to hurdle the dog when we experimented with letting him sleep outside his crate. I guarantee that if Usain Bolt and I were in a race that started with us both deeply asleep and the starting gun was a cough from another room, I would totally win, dog hurdle or no.

But in addition to the coughing, Lil Z has also started waking up for no apparent reason. And she wakes up angry. She kicks her legs, scratches her ears or pulls her hair and cries. She is a picture of unhappiness. And it is difficult to calm her down and get her back to sleep. She doesn’t want cuddles, holding her hands or legs only gets her more frustrated, and Panadol doesn’t always work. There was obviously something waking her up and distressing her, but I had no clue what it was.

This is one of the biggest difficulties of having a daughter who is a medical mystery. I could take her to the doctor and describe the symptoms, but they wouldn’t have any better idea than me. In fact, they’d probably have less of an idea since I know Lil Z and know what possible causes can be ruled in or out. Often, I’m left to figure these things out myself and devise my own plan to address it. At first, I didn’t want to do anything without first getting a doctor’s authorisation, but as we’ve gone along, I’ve started to have greater confidence in my own mystery solving abilities.

So, tired of getting up to soothe Lil Z multiple times each night, I pulled my deerstalker firmly down on my head (figuratively speaking – it’s much too hot for that type of hat here) and set to work.

The clues:

* The cough has disappeared and she hasn’t shown any other signs of being unwell.

* Antihistamines helped her to sleep, but probably because they cause drowsiness and not because she might have allergies.

* She hasn’t shown any signs of seizure activity, like shivering or having unusually stiff arms and legs when I went into her room, so it is unlikely that nighttime seizures are causing it.

* Her sheets are a mess in the morning. She can be a bit dribbly, but lately I’ve had to put a clean sheet or muslin under her head several times during the night. And it isn’t just dribble – it is formula on the sheets, even when I haven’t heard her cough or vomit all night.

* She goes to bed fine, but wakes up beginning around midnight – so after her overnight feed has been running for a couple of hours.

* The crying reminds me of a 3-year old’s tantrum. Vegemite never went through the Terrible Twos, but she did have her moments as a 3-year-old. Lil Z’s middle of the night squawks and cries, kicking and grabbing remind me of tantrums, making me wonder if it isn’t all behavioural.

This morning, I was in the shower when I had an idea that could solve the mystery. Perhaps it is caused by reflux. Reflux would fit with the messy sheets, the tantrums (since it would hurt a lot), the midnight timing and why it is present with or without a cough. Elementary my dear Watson! (or is it…)

So, QB and I have decided to increase the dosage of her anti-reflux medication by giving her another dose at night before her nighttime feed. We’re also going to try to give it to her dissolved in less water, to maximise the chance that she’ll keep it down (Lil Z has a bad habit of bringing her meds back up) and apart from her other meds (some of which can interfere with its effectiveness). I’ll stick to the new routine for a week or so to see if it improves her sleep. If it does, I’ll talk to her doctor about increasing her anti-reflux medication permanently.

If it doesn’t, then I guess it is back to Sherlock Holmes mode. Living with a medical mystery isn’t easy, but getting back a good night’s sleep is a good motivator to solve the mystery.

Sleep tight... all night

Sleep tight… all night

 

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