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Help - daughter and strange head jerking

9 replies

Beaaa · 28/03/2023 18:54

Hi,

Sorry for the length of this - I really would like to know if anyone has been in a similar position as I am very much stressing.

Last month, my daughter (then 9 months) started jerking her head to the left. At first, I assumed it was a sore ear but became more worried as the day went on. I rang the GP who sent us to A&E. The doctor (who was a neurologist) admitted us and wanted a video done overnight as she was worried about infantile spasms. As we were getting settled on the ward, I asked about the video and the nurse had no idea and the doctor had left. The next morning a new doctor came and said she wasn’t worried and to come back if she started regressing.

She continued jerking her head to the left in clusters and sometimes raising her arm. She was admitted back to hospital a few days later unrelated to the the head jerking (she had bronchitis and had to have oxygen). We mentioned the head jerking and both doctors that checked her agreed it was odd and we got an appointment with the neurologist for the 11th April.

On to today, she has continued to sporadically jerk her head and sometimes rub her head against her shoulder on the left side. Recently, she has began jerking in her sleep. I’ve spoken to a doctor who has forwarded the videos to the local paediatric neurologist. I’m just waiting for a response now.

I suppose I’m just wondering if anyone has had similar. The wait till the 11th now feels an age away and I’m desperately trying (and failing!) to stay calm.

Thank you!

OP posts:
Beaaa · 28/03/2023 20:54

Hopeful bump

OP posts:
TheMorningBird · 28/03/2023 20:56

Could it be a tic?

Zola1 · 28/03/2023 21:18

Are there any other concerns around her development?

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Beaaa · 28/03/2023 23:07

Thanks for replying @TheMorningBird and @Zola1 .
The doctor said it was unlikely to be tics at 10 months.
Her development is completely normal except she still wakes up at least 3 times a night often more - I don’t know if she’s waking up due to the jerking motion.

OP posts:
karthikraj · 22/03/2024 07:09

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foreverhopeful1uk · 07/12/2024 05:54

Hi was there ever an update on this?

Beaaa · 07/12/2024 18:49

foreverhopeful1uk · 07/12/2024 05:54

Hi was there ever an update on this?

Hi,
It’s been a bit of a journey. We went to the paediatrician on the 11th and she had to have an emergency ECG which came back abnormal. We were then told she could have a brain tumour or learning disability and had to have an emergency MRI. Thankfully, no brain tumour but it did show a cyst in her brain. The neurologist said they would continue to monitor and she might need more investigation as she grows. The jerks have mostly stopped but she does jerk in her sleep sometimes.

OP posts:
foreverhopeful1uk · 08/12/2024 06:19

Goodness what a worrying time for you all. I'm glad they have mostly stopped and I'm hoping all remains well for you!

thanks for replying x

Mischance · 08/12/2024 06:37

It is good to have a known cause and that she will be monitored. What a worrying time you have had.

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