Friday, July 16, 2021

Curing the Incurable Cough

I accidently deleted this important post! WayBack Machine and Dennis at habitcough.com helped me get it back. 
From Nightly Despair to Electrified Hope - The Cure of The Non-Stop Cough

Regular readers, oh, readers kind and fair: 


I wrote this feature to send to a newspaper. They want to do their own report about Tess' s miracle cough cure. So, I saved you the inside story of our 2020 - the year Tess coughed a hundred times a day, every day, until a retired Californian doctor cured her on Zoom. 


Spoiler: It's a 5 minute read and there's a happy ending. 


 

2020: Our Daughter Coughed for a Year, until a Retired Doctor Cured Her on Zoom. 






 

            In January 2020, my husband and I sat down to watch a DVD. It was called 1917, a glossy war film, full of gunfire, bombs and men screaming for their lives. I thought I heard our daughter coughing in bed. She has asthma, so I went to check. I found her doubled-over in a kind of whooping cough struggle, that came from nowhere. It was a horrible sound - a choking 'bark', and her eyes were wide in shock.


            Trying to hide my panic, I grabbed her inhalers and we abandoned the film and spent an hour, trying to soothe her to sleep. We had no idea, she would spend all of 2020 coughing every day, hundreds, even thousands of times a day, without any hope of healing.


            That January, we followed our GP-led asthma treatment: more inhalers, oral steroids (miserable for her) and antibiotics for a chest infection. I had a ledger book to record her symptoms. 


        Previous months of blank pages and the odd note - No issues -became a thicket of handwritten bewilderment: nightly coughing fits / rocked to sleep again / distress and exhaustion / cough loads worse / tight chest / WTF?


             I used a yellow highlighter pen for small improvements, blue biro for frown-face emojis, beside details of relapse and deterioration. 

By February, my dread was fuelled by reports of 'Corona Virus' coming from Wuhan and Italy. She didn't have that, no? It wasn't here yet? It was surely on its way. 


            I spent hours clicking on Dr Google. Someone on an asthma message board suggested VCD - Vocal Cord Dysfunction, something I'd never heard of. I found a Facebook Group, four thousand strong, of people who had coughed and struggled for breath, for years. My heart ached for them all. There was no cure, and the only 'treatment' was Speech and Language therapy and 'breathing techniques.' 


            The 23rd March, 2020 was Tess's tenth birthday, and the first ever day of UK lockdown. "I never thought I'd be having my birthday in lockdown!' she announced. Me neither. And the brutal coughing fits continued. 


            I sent video clips of the cough to her asthma specialist: Tess in a dressing gown, her head thrown back, as if gulping for air, her small frame wracked by hacking. He prescribed yet more harsh steroids, 'although, I don't expect them to work.' He suggested it could be 'post viral cough,' and would, 'go away after a few months.' 


            A locum GP said it could be 'a habit cough' and we should focus less on it. I would gently plead with Tess to try and supress, or swallow the cough - or every second cough - but she would sob, and tell me she couldn't do it. 'You don't know what it's like Mum! Stopping the cough is like trying to walk on clouds.' 


            I read that 'silent' reflux could cause cough and our GP prescribed anti-reflux tablets, which helped at first, but the effect faded after a couple of months and another paediatrician told us to wean off the pink pills. They are dangerous long-term. 


            I consulted private dieticians over Zoom. Clear-skinned and enthused, they hinted that serious diet change would be needed for healing. One advised six months of treatment that cost as much as an all-inclusive holiday in Majorca for a family of four. It also involved giving up most things that kids live on - pasta sauce, pizza, milk. Still, I was tempted. I wondered if it was our only hope. 


            Tess was so miserable, we decided to grant her the life-long dream of getting a dog. We took a private skin allergy test beforehand, just in case. To her elation, the test showed no significant allergy and Sita, a five-month-old puppy who looked like Bambi, arrived from a Romanian rescue charity. Daily summer dog walks were peppered with Tess's dry coughs and spells of her feeling 'puffed.'





            Schools reopened in August. Tess would come home saying her throat was sore 'as a hot rock' and she was breathless and 'coughy' in the playground. Other kids would look at her, wondering if she had Covid. wondered if she'd had Covid. 


            'You can't say 100% about anything, but I'm 100% this isn't Covid,' said her asthma doctor, over the phone. We were still in wretched coughing limbo. 


            By mid-Autumn, the cough was too intrusive and exhausting for Tess to function at school, so she stayed home. There was also the daily threat of catching Covid, but this was secondary. 


        We were referred to Ear Nose and Throat at the children's hospital. An intrusive throat scope identified vocal nodules ('like singers have?') and Muscle Tension Dysphonia - basically, tightness and imbalance in the vocal cords. The test was stopped early when Tess nearly fainted. We were put on a waiting list for Voice Therapy. Like the rest of the world, we were glad to see the back of  2020.

 

            I found a palm-sized click-counter in an old drawer. Tess was starting 2021 with an average of 100 to 150 coughs, before sleep. I recalled the anniversary of the 1917 war film DVD. For a year, it had been impossible to watch any DVD in the evening, with our girl coughing her throat raw. The heart-sink sound from her bedroom was audible in the living room between ten and eleven pm. 


            'It's like an alarm going off in my brain, I can't help it, it just comes,' was how Tess described the 'tickle' that triggered the coughing fits, and kept them going. It's like an itch that you have to scratch. 


            Could it be a tic? An overwhelming physical compulsion? For what seemed like the millionth time, I battered into Google. Search: tic cough, habit cough. And there it was, a video popped up that would change our lives:

 

Documentary - The Medical Doctor Who Permanently Cures the World's Coughs



 

        The ten-minute version. Are you kidding me? On You Tube, a retired American doctor is coaching a young girl called Bethany (who looks just like Tess!) and he helps Bethany supress her cough. 


        Bethany's Dad, Dennis Buettner, has filmed the event, and packaged it, complete with music, subtitles and filmic parental commentary - 'What you're about to see, shocked and amazed us.' 


            In the film, Dr Miles Weinberger beams from his photograph, like everybody’s favourite Grampa. He radiates goodwill and compassion. His voice can be heard on Bethany's laptop, as he coaches her through the 'waves' of the massive urge to cough. 


        Bethany sips her water, winces and swallows. This is clearly effortful for her. Dr Weinberger has the tone of an air traffic controller who's guiding a jumbo jet away from disaster, to a safe landing. 


            He tells Bethany, 'Your taking control, you're not letting it control you. I know it's not easy, but you're doing it. You've done three minutes now, I bet you can do four. And the longer you can do it, the easier it's gonna get. You may have to do it for a while, but gradually, it's gonna get easier...'


            It is indeed miraculous to watch. I went from nightly despair to electrified hope. Yes! Rewiring is needed! The brain and the throat have been tripping like a faulty fire alarm. They are stuck, trapped. This is both physical and mental. But, there is a way out, and Dr Weinberger has the expertise to uncover it. 


            At the end of the video, Bethany is filmed the next day, on her way to full healing. 'If I can do it, you can do it too,' she says, 'Thank you, Dr Weinberger.'

             

        I can't wait to show the video to Tess, but I have to play it casual. I don't want to overload her with crushing expectation. 'There's a girl, like you on You Tube,' I say. "I think the video might help us too.' 


            Tess agrees that Bethany is 'pretty' and lovely and, 'it might help.' I email Bethany's dad, thanking him and telling him we will try the video at bedtime, peak-cough. To my amazement he replies immediately and copies in the God-like Dr Miles Weinberger himself. They wish us luck. They are confident. 


            And, so it was. How right it felt.  I have written 'Miracle Day' in my ledger. 


    It is now three weeks since Tess started to heal. She watched the same video of Dr Weinberger curing Bethany. It was tricky at first; the urge to cough was so strong, Tess was whimpering and groaning, restless in bed. But she did it.  She resisted the cough. 

        

    The compulsive 'tickle' started to recede in frequency and strength. No one is listening to the blare of the false fire-alarm. Soon, its power will run out.

            

        It amazes me that we could have missed this; that countless other children (and adults) are stuck with daily, barking 'horror' coughs they could fix, if only they knew how. None of our UK doctors told us about this. They were dedicated and well-meaning, but unable to help. 

            

        Bethany's dad made it his passion to spread the word about this cure. His website, www.habitcough.comreads like an advert, but he is not asking for money, he is simply spreading the small miracle that transformed his family life. He hopes to translate the video into many languages. 


            Dr Weinberger, it turns out, is a Professor Emeritus of Paediatrics at the University of Iowa. He has a lengthy CV full of medical plaudits and positions, but his expertise is matched only by his radiant kindness and compassion. He is a true healer. He offered to talk to Tess from his home in San Diego, on Zoom, about any lingering concerns re asthma or symptoms. We accepted.


            As we waited to connect, Tess clicked on the option for fake Zoom background.


'Come on, Tess, show the man some respect!' joked Tess's Dad.


            When Dr Weinberger appeared, he, himself, sat like a Medical Messiah in front of a photo-shopped background of a Californian beach sunset. May he bask in it. 


            'Spread the word,' he said, as he wound up the call, gently, patiently, after an hour, and we thanked him again. 


            I'm spreading the word: if your child has a chronic cough, Dr Miles Weinberger might just save your family from years of suffering. He's a miracle worker. Pass it on. 






Thursday, July 15, 2021

My Righting Career


 photo - Gordon Terris.

I have forgotten how to blog. Bless me Father, it has been four months since my last blog post. (For the 'non-catholics' this is a lapsed-catholic joke). 

I don't so much have a writing career, as a Right-ing career, trying to make things 'right.' Things like the escalating Climate Emergency and the soaring rates of infection in the Covid pandemic; just wee things like that. 

The photo above was taken by a photographer from The National where I did an interview as a 'concerned' parent, urging better school safety mitigations and saying I'd be keen to get my kids 'Pfizered'. 

Hugh (who didn't wish to be photographed) is now 12. He would be eligible for the jab, if they will finally allow it. Tess (above) is 11 and has been on daily asthma medications since she was 5 years old. 

I'm aware I have a couple of friends who would disagree with vaxing kids, but parental choice would be good, and I think it could help lessen the risk of Long Covid (estimated at 1 in 7 child cases, according to the Office of National Statistics).  

But summer. Ah, summer. I love it. It's a balm! It reactivates all the memories of happy summers gone by. Oops, here's a sneaky wee link to Don Henley singing The Boys of Summer.  

We had a short break in bonnie St Andrews. We took our scaredy-cat, rescue dog. She got excited about rabbits. (She ain't never caught a rabbit, so she's still a friend of mine). Tess and I swam in the open sea. Baltic then exhilarating. I would do it again. 




I have been reading my Dad's new book of stories. Even if I wasn't biased, I'd have to say they were quite brilliant. They seem as effortless and natural as afternoon sunlight in a familiar room you want to sit down in.  Out August 5th, online or at your local bookshop. Perfect for the beach.  

Now, get in that sea. It'll do you good. 

Tuesday, March 02, 2021

Testing Testing, ENT

 We are just back from the Childrens' Hospital. 


Tess was meant to be having a test for Vocal Chord Dysfunction (VCD).

The test involved a 'scope' camera being slid up her nose (eek) to film her vocal chords / voice box. She was meant to cycle hard on an exercise bike, for five minutes, to see how the vocal chords respond to exercise. For the past year, she's had coughing fits when she exercises.

Poor girl didn't even get that far. The camera was only in her throat for a minute or so, before she started to feel, 'dizzy'. 

'She's very white,' said one of the doctors. 

Tess, two ENT surgeons, three technicians and me  - a  'Chicken Licken' crowd of us  - all stood, masked-up,  in the small windowless room, crammed with hi-tech medical equipment. 

They had to help her off the bike, and she looked wobbly and pale, like a rag doll. They let her lie on a leather examination bed. 

'I'm never doing that again,' she said to me as soon as we left.

However, the surgeons did get some footage and the 'cool surgeon' (Vans sneakers),  was able to say, straight away, that there was evidence of vocal nodules on Tess's larynx and clear evidence of 'Muscle Tension Dysphonia' or MTD.  MTD? WTF?

Let me get home to Google that, I thought immediately. He told me MTD is an umbrella term for inadvertent maladaptive muscle use in the throat - often following a viral infection. Kids can try too hard and their muscles over compensate. 

He replayed the video. Tess's vocal chords were supposed to open and close like lift doors. Instead they looked like two bed sheets flapping in the wind. Well, not quite - but there was a fluted, shaky look to them. 

The good news is, the ENT surgeon would refer us to 'Voice Therapy' and that might help. I confess, I am desperate for more than a 'might', but I'll take anything. 

I realised there was still the big unanswered question of, does she or doesn't she have VCD - in addition to the MTD?  How many acronyms can a girl have? How many can she bear?

The surgeon agreed that Tess  had, 'been through enough today' - ie - they weren't about to throw her back on the exercise bike and re-scope her. I don't think she'd have agreed to that, anyway. 

On the way out, the technician admitted that lots of people can faint, when you start poking around inside their heads. Go figure. I had a flashback to the time I fainted, age 15,  when I got stitches removed from my ear. 

So, we will chase up the Voice therapy. The doc warned we would have to 'adhere' and work hard at it. Ready and willing. 

Hit us with your crossed-finger emojis. Not literally, but metaphorically will do. 

We'll check back in with the asthma doctor too. Indeed the body is a complicated place to live...as if we didn't know. I'm pointing at you, 2020. And you can start to behave, 2021?



Saturday, February 06, 2021

Don't make the Schnauzer feel bad, Mum!


Every day we go on a dog walk. THE dog walk. We build our lockdown day around it. We pass through the grounds of the old Gartnavel Royal Hospital - once called 'The Glasgow Lunatic Asylum'. What a phrase to mug the heart. Ooft. 

It's a spooky old building, half occupied, half derelict - a castle from a Gothic Novel. Mr Rochester's stricken wife must be weeping in one of those turrets?


We walk until we reach, 'The Field of Dogs.' Our Romanian rescue dog, Sita, gallops like an antelope to meet the other dogs. I coo over the cute dogs, (a labrador puppy?!) but Tess warns me to be more egalatarian in my coo-ing. 

Don't make the Schnauzer feel bad, Mum! she whispers. So, I have to make 'cute noises'  in the general direction of less-cute dogs.

Tess is not above some comparison, herself. She likes to decide which dog would be a suitable 'husband' for our Sita.  This is subject to change. One recent 'front-runner', is now demoted, due to his lack of doggy recall and discipline.

He'd turn out to be one of those husbands who wear grey joggys and stays on the X-box all day, says Tess. Quite. 

Disclaimer. I'm sure those husbands are nice too. No husbands have been harmed in the making of this blog. 

Gartnavel Sculpture - Two Hearts by Jephson Rob. 


We meet other dog walkers too. A lovely, older couple with a 'blonde Lab' who lollops. Somehow, the dog reflects their kindness.

We make regular small-talk in gentle morning ritual. How we slept. What we are watching on TV. We stand at least 2 meters apart, hovering, cautious. 

I like to think of us,  in time-lapse photography, viewed from a distance, viewed from above. Clouds billow rapidly, appearing and disappearing. We are all stick men in the field, and the dogs move five times faster than all of us, lapping us with their excited abandon. 

The sun goes in and comes out. Shadows flicker accross the 'Glasgow Lunatic Asylum.'
The hopes and fears of all the years. I had my own struggles with anxiety and OCD, in the past, but the passage of time and a couple of wonderful NHS 'shrinks', led me out of the forest, to the peaceful meadow beyond. 



 Now, I have Tess - the daughter I thought I might never have - to keep me in check, and prevent me from inadvertently offending any passing Schnauzers. Fair deal, I'd say. 









Friday, January 29, 2021

The Pasta of Disownment

My son had a dream about, 'the Pasta of Disownment.'

Oh really. Now what's that? (Clearly not the Le Pastie de la Bourgeoisie).

'It's the pasta that Harry Potter had to eat when he had no friends. There was a big neon sign above it.'

I don't think that bit was in the books. 


But hey ho, The Pasta of Disownment could feature in future tales. And it feels like my staple diet at the moment. Oh, the un-splendid isolation! Good people, can you bear it? 

Every disgruntled thought I have these days, is countered by another thought, telling me I can't complain.

But this winter lockdown is long and hard and boring!

YOU ARE NOT A DOCTOR OR NURSE IN ICU.  YOU ARE NOT A PATIENT IN ICU.



I miss my friends and the life we had before - but it's so far away now, I forget what it feels like. What if I become 'comfortably numb'?

YOU HAVE A WARM HOUSE AND A FAMILY THAT CAN BEAR EACH OTHER.



You should have written a book by now! What's kept you?!

YOUR KIDS NEED HOMESCHOOLING, FEEDING AND MEDICAL APPOINTMENTS. YOU ARE KINDA BUSY. Oh, and the dog says it's your turn at Scrabble. 




So, talking of medical appointments, poor Tess has coughed every day for a OVER A YEAR.

It is currently the main weight on my heart. You are only as happy as your unhappiest child, said someone once. Not a monk. 

We have seen several doctors, tried many medications. None have worked. She was due to get a throat scope last week, but the poor ENT doctor had to self isolate. More Pasta of Disownment over here please, waiter? Grazie! More for everyone, including the kind surgeon! 

Our local neighbourhood had been planning a Winter Window Art Festival. I am not one of these 'natural crafting mothers' (NCM's?) but we did our best this afternoon - only to find out later that it has been cancelled, due to lockdown. Doh! of course it has. 

Here's our inside-out windaes, for one night only:






Ah well. It is Friday. We nearly have January 2021 tucked under our belts. We haven't resorted to playing Barbara Dickson.  Oops. I just have. It's a bit Cliff Richard, when you think of it. Must dig out my Walkman, roller-skates and satin shorts. 

Here's some beautiful children and a dog. Thank God they're mine. 


 February's on it's way. Keep ploughing your furlough. 






Friday, January 08, 2021

Can I help you? Working 9 to 5, in the Gift Shop of Life

It's 2021! 

Here we are, in a full-blown Covid crisis. Honestly, I can barely look. Time to deploy some Memoir Nostalgia, as a distraction. Let me tell you about my first ever job.  

I was a Saturday assistant in an island shop. Can I help you, Madam? I was way too shy for that kind of chat, but here is my tentative 80's grin.


It was a shop of lovely things, for locals and tourists. We sold Wrangler jeans, Lopi jumpers, silver jewellery, chunky pottery - painted with puffins, books and cards; waxed green jackets and carved walking sticks (bring your own Labradors).


The shop smelled of new books and clean wool. The door made a ding. Postcards poked from a revolving rack. (Photos of our island, looking almost tropical).  There were big windows to stare out of,  and a secret kitchen at the back, full of shoe boxes and coffee mugs.

My early tasks included making Camomile tea with honey (for the boss) and arranging the Hallmark greeting cards, via price codes. I was only 14; nervous about getting things wrong. 

On the first day, I gave someone too much change.  An extra pound note from a fiver! I was shaking, as if I'd accidently killed someone's dog. 

The other shop assistant was called Janet, or at least, I'm going to call her that - in case she is embarrassed at me celebrating her, years on. That's the thing about memoir - maybe people don't want a cameo role. 

Anyway, 'Janet' reassured me that my incorrect-change-catastrophe wasn't a handcuff situation. I think she dipped into her own purse, to make the numbers add up. Aww, Janet.

Of course, I looked up to Janet. She had long curly hair, a curvy figure and she oozed capability and  kindness. She twirled her curls in her fingertips, and gave wonderful throaty laughs. She wore a diamond ring that clicked on the counter top. She was great at helping all the customers. 

I was the opposite. My number one goal was to avoid 'pestering' customers. I stood at the side of the shopfloor, trying to look available, but not pressurising. A key distinction in my 14 year old mind. I hid under my 'Lady Di' fringe.

Beside shelves of denim (of every size), there was a small changing room. Inside, a window looked out, far over Loch Indaal. The window had no curtain. Seals and seagulls would blush.



One time, a local scuba-diver guy was back from the oil rigs. He was famous for owning a speed boat. Janet was doing brilliantly, trying to help him choose a present for his girlfriend, or his 'fiancé'.

'Money's no matter!' he announced,  as Janet offered him an array of  jumper and jewellery options. 

Money's no matter! He repeated, waving his generous arms about the shop. 

Money was a matter for me. I got paid £5 per Saturday, and it felt like a fortune at the time. My mum encouraged me to save, so I stashed the cash in my Bank of Scotland hippo. 



After a few months, Janet mentioned that I'd be expected to work right through the school summer holidays. What? I was practically winded. Give up childhood summer to work 6 days a week? Indoors? 

Call me spoiled, call me a work-shy fop, but at fourteen, no amount of money was going to be worth the sacrifice.

'You'd better tell him,' said Janet. 

The boss seemed surprised. Frustrated. 'I've trained you, you have responsibilities,' he said.

I don't know where my Jane-Eyre audacity came from, but I replied plainly -

'I'm too young to have responsibilities.' 

Today, I can see both sides. It was a privilege to be offered a job, so young, in this shop of lovely things; to have the chance to learn; to watch Janet in action and have her watch over me.  

'Which boys do you like?' she'd ask me, as we stared out the window at cars driving up and down Main Street. I'd confide. She'd concur,  'Oh, he's a nice boy. And he's lovely too.' It was sisterhood. 

There was a dress in the shop that I used to adore.  It was displayed prominently, on a spotlit hanger.  Black satin with a red sash around the waist. Imagine Lady Di at a Gala ball. Madonna in a Material World.  


I knew I would never own it. It was £60. Twelve weeks wages!  But I loved projecting myself into it. A secret Cinderalla dream. How blessed I would feel. Surely it was made for me?

Or maybe, it was made to teach me patience, when things I longed for, were just outside my reach. 

I don't rememember the day that I left the shop for summer, I just remember that I had to. I won't forget the joy of summers on the island, on those postcard beaches, string bikinis and 80's slogan T shirts. Ce'st L'ete! Joe Cool. Choose Life. 




But I won't forget working in the shop either. Tea break and biscuits in the tiny, yellow kitchen. Christmas shoppers blown in from the blustery cold. The glass revolving jewellery case, the tartan carpet.  Growing up slowly, in hush of the upstairs fashion floor. Wide windowsills to watch the world from. A gift shop, it certainly was. 

So, after lockdown, if you're lucky enough to be on Islay, pop in to the gift shop for a few postcards. Or maybe a new dress: glorious in the spotlight, the perfect fit, waiting for you... still.  



Wednesday, December 23, 2020

A Different Kind of Christmas

 

In our garden, there is a 15 foot hedge. An evergreen laurel, to be precise. 

Every couple of years, I pay 'a man' on a ladder to trim it. I don't trust myself with a chainsaw. Who does? Yesterday, on the darkest/shortest day of the year, I began to attack it with a £3 saw from Lidl. (Try cleaning the Titanic with a toothbrush). 

There is something addictive about hacking through a forest (I can see how Sleeping Beauty got her prince). I was getting all my 2020 anger out. Take that, you stupid thicket! You dumb plant! Rampant growth, Out of Control.., you Pandemic Metaphor, you! 

The saw made pulsing noises, like electricity down a train track. It was rhythmic and soothing, in the still winter air. The sawdust fell, pale and petite as snow in a snow globe.

I have missed you, readers.

I have wanted to 'talk' to you more frequently, but poor Tess has been off school again, since early December, and that means I am immersed in stay-at-home Mummery. Her chronic cough just powers on (like the hedge) and she needs soothed to sleep after 11pm. 

We are waiting for more tests, more advice in 2021, though doctors are kinda busy right now. She's cheerful enough, between coughs. 


Doctor Sita, checking Lung Function. 

If 2020, has taught me anything, it is this: my kids need me and I should drop the vague 'guilt' or 'not enough-ness' that comes with being a Stay at Home Mum. I have carried that  feeling for a decade, like a wee battered suitcase.

I'm generally in a minority. Most of my pals have jobs and children. 

I feel like my writing is not a 'job'. It's something I attempt to do, when the kids are at school and coasting.

But this has been a year like no other. And it continues to be. Often, I think this is just the beginning of massive planetary turbulence and climate emergency - something I have to try to hide from the kids.  

I've enjoyed writing a few memoir type posts - escapist nostalgia - and I hope to get back to that, maybe at a time when the kids aren't constantly asking, 

Are you excited for Christmas, Mum?

On a scale of 1 to 10? Are you 10 YET?!

 


The jury aren't convinced. I'm guilty as charged, for having an inner Greta Thunberg.  But I am proud of my hedge trimming, instead of hedge funding. 


Have yourself a different kinda Christmas. Put that chainsaw down.  Love the ones you're with.