UPDATE | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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Last week wasn’t a very nice week, at all.

Mr 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 Talipes and Benign Paroxysmal Torticollis. We haven’t had any attacks with the accompanying sickness and drowsiness since Eli’s 1st birthday; it has been just his head tilting to his shoulder. He’s been teething quite badly (well, he’s been teething constantly since he was 8 weeks old…). His Torticollis tends to flare up more when he’s teething – or when he reaches milestones. We were so hoping he’d started to outgrow the attacks.

His neck had been tilting to the left side since 24th October – coincidentally, OH’s birthday. It finally straightened up, to a perfect mid-line by Friday 1st November, 8 days later. Then on Tuesday 5th November Eli’s head started to gradually tilt towards the right. He had been unaffected for just 3 days. By the evening of Wednesday 6th November, poor Eli looked horrendously uncomfortable and was very clingy. We had a physio appointment at the local hospital at 11am on Thursday 7th November. This would be the first time our physio had seen him so badly affected with the Torticollis.

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Eating an apple after breakfast on Wednesday 6th November.

On Thursday 7th November, Eli woke up crying. He never wakes up crying… apart from when he’s been severely affected with his Torticollis, and we’re due an attack.

I struggled to get Eli into his high chair, he was so off balanced and crying in discomfort. He barely ate any breakfast. His head was completely touching his shoulder.

I got us both ready for the hospital appointment; we walked the 25 minute journey and Eli was fast asleep as soon as he went into his pram. He NEVER sleeps in his pram when we’re out and about now. He’s too nosey.

When we got to the hospital he started to wake up with the lights and noises. As he gradually came round, I noticed his eyes weren’t quite right. They looked misaligned. I pulled him out of his pram for a cuddle and closer look. And as I did so, he projectile vomited. EVERYWHERE. He was having the first full blown Torticollis attack in 3 months. His eyes rolled back and he passed out into my arms. There were such lovely people in the waiting room, rallying round with tissues and water for us both! It’s so scary and upsetting when it happens. This is the first time it’s happened outside of our house too.

I then went into the physio room. Our physio was in a state of shock I think – she’s always seen him when he’s been unaffected and his usual jolly self. She admitted she never realised the extent of the attacks and began noting down everything that had happened, so she could write to the big hospital in Chelmsford for a referral to a specialist.

We know that there is no treatment or cure for Torticollis. It is something that Eli must grow out of, and should grow out of by the time he is 3. But I would still like him to be seen by a specialist.

He was sick a further 3 times in the physio room. The physio took a video of how the Torticollis was affecting him during his attacks; so we can use it as reference for any further appointments, where hopefully Eli will not be affected. OH and I watched this back on Thursday night together and it was very, very distressing to watch back.

Eli continued to be sick all of the day on Thursday – something that doesn’t usually happen. Eli had changed through 6 tops, 2 pairs of trousers and I used 12 muslins and 4 tea towels to clean things up. It was too chilly to not have his clothes on. I kept him nil by mouth… aside from syringing water into his mouth as he just couldn’t drink from anything else. He slept on me in-between the sickness. As he snored in my arms, I sobbed. I don’t think there’s anything that quite prepares you for feeling so helpless as a parent – not being able to make Eli better is just the WORST feeling in the entire world. For his last nap that day, I put him into his pram – where he slept for 90s mins.

When Eli woke up, he was chatting away. I pulled him up and out of his pram for a cuddle. He wanted to be down and straight away grabbed his beaker! He was almost back to his usual jolly self again – aside from his head was still tilting to the right, just not as severely; but it was a huge improvement on how it had been when he woke up that morning. It was almost as though the earlier part of the day hadn’t happened.

He ate toast, a banana and some biscuits for his tea that evening, along with 2 beakers of water. He went to bed normally with his bottle of milk.

He was clingy on Friday 8th November and looked very uncomfortable still. His balance was still affected by the Torticollis so he was very clumsy and couldn’t sit upright on the floor or in his highchair, choosing to slant to the affected side.

Fast forward a few days to today. Eli is much better now, sitting comfortably and back to his usual routine. His head is more or less perfectly straight in the mid-line again. After previous attacks, his head has straightened back during the course of the day. So this has been a lengthy process, this time.

Eli has an appointment to review his Talipes at the end of this month – which we’re so looking forward to as his feet are remarkable now. His referral regarding his Torticollis will be at the beginning of December, at the same hospital.

If you or your child has been affected by Torticollis, or indeed Talipes, please do get in touch. I’d really like to hear your experiences with both – Torticollis a rare condition and there is not a lot of information out there.

MM.

4 thoughts on “UPDATE | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

  1. My daughter is also suffering from BPT. She was diagnosed at 4 months but didn’t have her first episode until 7mo and they’ve continued regularly, every 30-52 days. The doctors here seem totally unfamiliar with it. Did you have a hard time finding your son’s specialists?

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