\ Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis. | The Memoirs of Maternity
August 23, 2013 12

Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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I have been looking, with interest, at some of the posts that have been published during the This Is My Child awareness campaign via Mumsnet. We live our life day-to-day as normal. Because THIS is our ‘normal’. Eli is our first born and we know no different. But I suppose, our story is different. I’ve not really highlighted Eli’s Talipes or (recently diagnosed) Benign Paroxysmal Torticollis on my blog before. I have mentioned in a few posts about his Talipes. But nothing in depth. So here it goes!

Everything stems back to when I was pregnant. I had a very tough first few weeks, after a bleed we were told that the pregnancy might not be viable at a 5 week early-pregnancy scan and told to return in 3 weeks time; where we saw the most amazing and incredibly tiny flickering – a heartbeat! PHEW!

We so looked forward to that 12 week scan. The sonographer was lovely, but seemed concerned. Eli was jumping ALL OVER, I thought she was just having difficulty measuring up dates because he wouldn’t keep still. She then turned the machines off and said she was sorry to tell us that our bundle of joy had a “nuchal fold measurement on the cusp of high”. The exact measurement was 3.5 mm. This was indeed the cusp before they offer you further investigation. We needed to know. We were informed that a high NT measurement could mean a multitude of conditions, including Down Syndrome. This was heartbreaking. This baby was so wanted – we needed to know what we were facing. We had ‘counselling’ and I had bloods taken. The nurse then called University College Hospital London and told us they had a referral for the the very next day. We were told we could have a more in-depth scan at the Fetal Medicine Unit; where we would also be offered the option of CVS – which would indeed confirm any anomalies, through a horrendously invasive procedure. After the lengthy scan with several specialists, we were advised that we could either go ahead with CVS there and then, or wait… It had been picked up that there was a lack of nasal bone; another marker for Down Syndrome. Our world shattered. HOW WOULD WE COPE?! We went ahead with the CVS there and then. It was like a whirlwind.

The procedure was horrible. Just horrible. I had soreness and tenderness for a few days after. Not to mention the constant worry and stress of the risk of miscarriage. It was a very very hard time for both of us, waiting for the results. 3 weeks passed and we received a letter confirming that everything was spot on with Eli. He didn’t have any of the common anomalies that CVS tests for.  We were over the moon to say the very least. PHEW!

But this was not the end of our hospital visits. To cut the (very!) long story short – we had a total of 9 scans. Because of the NT measurement, Eli’s heart, organs and growth was routinely monitored. He developed fantastically. At the 25 week scan, it was found our baby had a degree of Bilateral Talipes.  But it was “extremely mild”. PHEW! It was corrective. We were happy. In the grand scheme of things.

Fast forward to almost 42 weeks pregnant, I was just a HUGE pregnant ball; unable to move, pretty much. That little boy was so so squashed up inside my petite 5 ft nothing 1″ frame. I was eventually induced. Which, shock horror was just the WORST thing ever. (Incidentally, I would never recommend an induction. Just bloody wait till the baby wants to arrive!). After 30 hours of labour, Eli was pulled out of me in an emergency situation using Ventouse. He was out, safe, at long last. PHEW.

Or so we thought.

We both immediately looked at his feets. Yes, they turned in, but probably weren’t half as badly affected as we were imagining.

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Again, fast forward to 8 weeks old. We’d not been seen by a specialist. Not even had a referral. At Eli’s 8 week check the GP who was head of the surgery, told me that his feet would ‘correct themselves when he learns to walk’. I wasn’t happy with that. We’d been massaging, manipulating and exercising Eli’s feets since birth, but at about 8-10 weeks had hit that brick wall. They weren’t getting any better. With the encouragement from @BexandMic on Twitter, who’s beautiful son Hugo was also born with Talipes, I kicked off at the Health Visitor. I got a referral to see a Physio about his feet. At the very first appointment our lovely Physio, Jenny, pointed out that Eli’s head was tilted to the left. I couldn’t understand what she was referring to, he just couldn’t hold his head up yet… She explained it looked like he had something called Torticollis. Possibly from being so squashed up during pregnancy, possibly from the trauma of being pulled out so quickly. I was given exercises to do with his neck regularly, after a week, his head was straight! I still to this day can’t believe we didn’t notice it. Looking back at photos, his neck is completely to his shoulder on every single one. There was still tightness after a few sessions with the Physio and more manipulation on our part. We eventually saw our consultant, Mr Tuite at Broomfield Hospital on 31st October. Eli was almost 14 weeks old. Worryingly, most children with Talipes begin their treatment shortly after birth.

We were devastated when Mr Tuite said that Eli would in fact require plaster casts to begin the correction process. Mr Eli was pretty mobile at 14 weeks old! He was used to his bedtime routine and his bath. We knew the casts were for the best though. We had to do it. We were told Eli had really mild Talipes, again, so would require 2 weeks worth of casts…

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6 weeks later Eli was still in casts. It was incredibly tough.

Being the age Eli was, we got a lot of stares. You could just tell people must have thought he’d been dropped and had broken legs. When people asked what had happened, they didn’t understand. They made me feel like the story I was telling was a pack of lies. It was just a horrendous feeling. We did however have luck on our side, in the fact that it was Winter when Eli was in casts. It wasn’t hot, he would have been so much more uncomfortable if it was! He spent a lot of time in long socks and snow suits! In hindsight, I wish I’d been more confident with his casts. Embraced them more. Decorated them, even. The casts did not hinder Eli in any way, he was rolling over in them and they were SO heavy and awkward. He kicked his legs up and down and bashed the casts to bits! He was so brave – he didn’t sleep at night, but hey, he doesn’t now either!

The Torticollis would occur when Eli seemed to meet new milestones. It wasn’t constant. It was irregular. His neck tilted for around a week when he started rolling, sitting up and crawling. But also seemed to coincide with teething too. We continued to repeat the exercises and manipulations.

Mid-December 2012 and Eli went into Ponseti Boots and Bars 23 hours a day. He got an hour “free” where we gave him his bath and he had a kick about afterwards. This was a huge relief. We could get back to normality somewhat. We hadn’t even thought about the visual  impact the Boots and Bar contraption would have on other people. After our journey, we had just accepted what we had to go through.

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In the coming weeks, I had an array of comments and conversations about his B & B’s.

“They’re funky boots” “Thanks! They’re to straighten his feet” “ohh… I thought they were just fashion accessories! I’m so sorry. Didn’t realise your son was ill”. “He’s not ill?”

“Does he have broken legs?”

“Does he have broken hips?”

“Is that a contraption to stop him wriggling away from you?”

“Do they make him taller?” “WHAT?!”

 Etc. Etc. Etc.

We had a lot of nasty glances. A lot of nasty sniggers. I’m REALLY not thick-skinned at all. Like I say, I’d completely accepted that this was his treatment. It did not bother me. This was normal to us now – this was part of our every day lives! Until someone pointed his feet out, or made that eye contact, that’s when I’d think. Then it would upset me. But, I needed to get through that for him. It was in his very best interests. He wouldn’t be able to walk without it! Had we just been too blasé about the entire thing?!

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Eli wore his B & B’s for 23 hours a day, for 6 months. Most children wear them for 23 hours a day for just 3 months, then hours are dropped throughout the day until they eventually just wear them at night time. To our surprise, Eli went straight down to just nights at our next review. This was just insanely cool. It was just magical seeing him so free. His feet look PERFECT! We’re so so pleased. We’re also convinced though, that Eli struggles at night time because of his boots and bar. He’s free all day long, then come bedtime he’s confined. He can’t move with ease. It’s uncomfortable and heavy. He will sleep for 2-4 hours at a time. Then I will need to settle him. There has been nights where I have taken his bar or both his boots and bar off, and he’s slept soundly. I’m sacrificing my sleep so he can walk. Easy decision. I do worry it’s not good for him, the broken sleep. But what can I do?!

At 10 months, he started pulling himself up and cruising around his play pen. I can’t tell you how proud we both were. It was just so special; still is! SUPER PROUD PARENTS!

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Not long after Eli started standing up, there was an afternoon where Eli was particularly miserable. Anyone who knows Eli knows he is a jolly boy. Barely cries. He’s only ever grumpy in the night! He was super grizzly. I put it down to teething. Then he projectile vomited. His neck was tilted. He went floppy in my arms, the colour drained from usual his rosy cheeks, his eyes rolled back and he seemed to pass out. I was beside myself. Naturally. I rang my OH who calmed me down. I’ve never been so frightened, it was seriously scary. This had happened previously, but I wasn’t there. Another bout of sickness and drowsiness and I let Eli sleep. We then recalled another time when he projectile vomited (he was never a sicky baby so could recall these occasions clearly). Within in a few hours, his neck was back to its mid-line straight position. Without any manipulation. We worked out that they all coincided with his neck tilting. Could the Torticollis be causing this?

I took Eli to the doctors – who were, USELESS. He googled Torticollis and told me what Wikipedia says… He said he’d seen just one other case of this and to go back to the Physio if I was concerned. Hell yeah I was concerned. We didn’t know if it was underlining with something else. I went to Portugal for 4 days. Eli had another bout of the sickness and drowsiness with the Torticollis. Again, his neck had straightened up itself by the next morning. It was all definitely linked.

I went to the Physio again after my trip. She was lovely, she explained that the condition was Benign Paroxysmal Torticollis. This variation of Torticollis comes in waves, or ‘attacks’. The attacks can last anywhere from minutes, to hours, to days and is accompanied by vomiting, pallorataxia, agitation, infantile migraine, unsteadiness of gait upon learning to walk, general malaise and nystagmus. All sounded about right. The periods in which the child’s head is tilted and other symptoms appear can last anywhere from a few minutes to a few days, with a frequency of anywhere from two per year to two per month. Looking back at the frequency of the attacks, we’ve found they seem to happen at the beginning of the month – every month, so far. It seems to surround teething, more than milestones now.

So now we know.

But what to do about it. Well, we’ve been told my several doctors and the physio (as well as Google) that Benign Paroxysmal Torticollis is something that Eli will grow out of, probably by school age.

His most recent attack was on 6th August, his 1st birthday. His neck didn’t straighten up quickly this time though, it’s taken a good 10 days this time.

The additional care that Eli requires surrounds his Talipes and his Benign Paroxysmal Torticollis. We don’t know when he’ll be out of his boots and bar, could be at his next appointment (28th August), could be when he’s 3 or 4 or 5. We also worry about relapse; there’s also cases where the feet have been over-corrected so they point outwards. We also do not know when he will have another attack of Benign Paroxysmal Torticollis, or the severity. I have to carry dozens of muslins with me, just incase he projectile vomits. I often worry it’s just going to come out of nowhere. I also worry about when he goes to nursery – are there people who are going to be able to look after him if he has an attack? Luckily, at the minute, I can work from home. But he will need to go into nursery sooner rather than later, for him to be able to socialise with children his age, more than anything else.

We currently do not receive any help, support or funding. I do know of people who have been granted Disability Living Allowance for their children with Talipes.

I’d absolutely LOVE to hear from others who have experiences with Talipes or Benign Paroxysmal Torticollis. The latter being quite rare, so not heard or seen anyone else who has had a child with BPT.

Would we have had it any other way? Ideally, I’d love to have Eli without all the discomfort and challenges he’s faced – of course I would. But my goodness me, he’s a brave boy. He’s SUCH a character. And frankly, it’s made me and my OH better people. We’re stronger. We understand.

Worry, worry worry – isn’t that what all parents do?

MM.

12 Responses to “Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis.”

  1. Samantha says:

    What an interesting read, gorgeous Mr Eli is not the only brave one, you’ve had such a tough time, I think you are amazing. I complain about things being hard work but not sure how I would have coped with one thing after another like that…you must be so strong and like you say it’s made you stronger! Eli is lucky to have you both. Hope things get easier soon, and hope you are getting more sleep! Lots of love xxx

    • admin says:

      Ah thank you for your kind words Samantha. We know people are much worse off than us; we’re so lucky Eli is a happy boy and a very brave one at that! But thought it would also be good to highlight his conditions, to raise awareness and hopefully also speak to others who have or have had children with these conditions too :) xxx

  2. Anne says:

    What a lovely little boy Eli is, I do hope that things improve for him, I know lots of parents with children who have had talipes and are now fine. I’ve not heard of benign paroxysmal torticollis, that doesn’t sound nice at all, fingers crossed he does grow out of it. My daughter currently has torticollis caused by her hypermobility, we’d not heard of it before.

  3. admin says:

    Hello Anne,

    Thanks so much for sharing. You’re the first person who I’ve “met” that has a child affected by Torticollis. Eli is hypermobile too. Wonder if that could be the reason behind it? How old is your daughter? How often does her Torticollis flare up?

    xx

  4. Genevieve says:

    Hi. My oldest son has talapies and is fairly hyper mobile too. He has just come out of boots and bar at age 5. The longer you keep the boots on the better the correction. We now have had several doctors say that if we hadn’t told them about the talapies then they would not have been able to guess. His feet were a little over corrected initially (the penguin look) however that has corrected itself over time. If you haven’t already talked to them STEPS are worth a call or email. They are a charity focusing on lower limb issues and they are great. They would want to hear about your experiences with your hospital as they are trying to target institutions that are not applying ponsetti correctly as you are right your sons treatment should have started a soon as possible after birth.

    I used to dress my boy in surf baggies and say he was training to be a snowboarder. Interestingly enough even though he is hyper mobile and not great with his balance put him on a surfboard and you wouldn’t know. An interesting side benefit.

    Sending you good vibes

    • admin says:

      Hello Genevieve,

      Thank you so much for your comments. Really nice to hear your experience too. Fantastic that your son is now out of his boots! What a wonderful feeling that must be – such an achievement. Will he still have regular check up’s to review his feets?

      I did contact STEPS in the very beginning whilst struggling to get a referral for a physio appointment; and then appointment with a specialist. There is only one hospital in a 2 hour radius that specialises in Talipes treatment unfortunately. Thrown into the mix, I can’t drive. In hindsight though, I do think we should have had a second opinion from SOMEONE in the beginning. I know people who’s children have had Ponseti treatment in London at Chelsea and Westminister and had incredible care and support. The hospital we’re at has not been great overall. Lack of bedside manner, support and consideration for us as a family – as well as for Eli as a patient. There was always the worry that if we complained to PALS that Eli’s treatment would be ceased at the hospital and then we would be left in a bit of a pickle with regards to getting to the closest next hospital… We’re just happy that Eli IS developing as he should be and IS reaching his milestones at the same time as any other child. Talipes and Torticollis have definitely not stopped our little soldier that’s for sure! BUT I may still contact STEPS irregardless, just to give them an update on the care we have been given thus far. Like you say, I do think they would be interested in hearing what’s happened since our last chat.

      Thank you again for sharing.

  5. […] I love, love, LOVE these pyjama’s. They’re so, well, COOL! With Eli wearing his Boots & Bar on a nighttime, we have to cut holes into his baby grow’s so that we can fit the bar through. […]

  6. […] Eli has been suffering with his Torticollis more frequently since I wrote my epicly long blog post, Mumsnet: This Is My Child | Mr Eli has […]

  7. […] Eli was diagnosed with Bilateral Talipes when he was 25 weeks old, in utero. We were told it would be mild when he was born. Granted, it […]

  8. Sascha says:

    Hello! Just wanted to leave a comment as I have a 10.5 week old son who has Talipes. We recently went into BnBs but he developed a sore so had to come out of them. The night he came out of them he slept for 9 hours and has slept for roughly that long (continually) for the past few nights, so I definitely think the BnBs and casts have an impact sadly.

    I was also born with Talipes, but that was pre-Ponseti so unfortunately mine weren’t corrected and I’ve been left with a disability. Interestingly, I had Wry Neck at one point too; I was reaching for something and my shoulder just locked to the side of my face and it was intensely painful, so I really feel for your son! Thanks very much for a great post xx

  9. admin says:

    Hello Sascha,

    Thank you for your comments.

    Yes, unfortunately the sleeping issue is just one to bare with – for the sake of your child being able to walk. It’s beyond worth it (and you kind of get used to the zero sleep!). Eli has just started walking and is just the most precious thing in the entire world! So worth the trauma, stress, strain and sleepless nights!

    So sorry to hear your son had a sore though, I hope it clears up quickly. Luckily, Eli has never had any sores, blisters or marks – but think a break from the boots is probably best to ease the pain.

    Sorry to hear your feet were not corrected properly. I really hope you do not have discomfort with it. Is there anything that can be done now?

    Many thanks again and wishing your family all the very best on your Ponseti journey! xxx

    • Sascha says:

      It’s so funny you should say that as I would say I’m more tired now he’s sleeping for long lengths as opposed to when he was waking me up every 2-3 hours! Strange that isn’t it?!

      I realise it’s probably a bit of a controversial approach, but I do think in a way we end up more bonded to our children when we have to experience things such as Talipes correction with them as we get to see just how amazing they are at coping and adjusting which allows us such a huge amount of pride! It’s always me that can’t handle the trauma we have to put them through (after his Tenotomy I returned expecting a crying and screaming mess to match his mother, but he was fast asleep…) rather than him as he takes it all in his stride :)

      Sadly there is nothing that can be done with my feet as I had too many ‘corrective’ procedures that backfired. I’m on crutches and I walk on the outside edge of my right foot; not great but I’m used to it!

      Thanks again for such a great post and I hope you’re having a great New Year! xxx

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