to think a brain injury as a baby couldn’t cause these problems 13 years later?

[Sicklyworried]

Worried sick
DD has been having problems with her ankle joints for the last few months
MRI ruled out anything structurally wrong
Physio noted slight “ clonus “ in one of the reflex tests although others all completely normal
I’ve googled and worries sick this could be related to a brain injury she had as a baby
can anyone shed some light?

Have you spoken to your doctor?

The clonus could be related but if physio was concerned they would do a referral back to the GP.

As for the ankle pain I assume your DD is around 14. This is around the age both myself and my teen son started with joint issues. We both have hypermobility syndrome (i very rarely get issues now at 44yo but mine was my knees). My DS was knee and ankle. His has settled a lot more now but still gets flair ups with growth spurts so maybe worthwhile looking into that.

A traumatic brain injury can cause permanent damage but if you’ve only just noticed it now it’s not going to be related unless it was always there but barely noticeable until she injured her ankle.

When I say only just noticed it now, I mean within the last few months. Brain injuries from years ago don’t cause spontaneous problems as far as I’m aware.

Did she actually have a brain injury or are you extrapolating backwards?

She had a haemorrhage after an accident
It was dreadful
She recovered well and all follow ups were clear and she reached all normal milestones and was discharged from seeing anyone
She does have ADHD but I’ve never linked that as we have a lot of this in the family on fathers side
She suddenly had joint pain / clicking and feeling of dislocation over recent months which was concerning
GP didn’t make any link and went down hypermobility route with some blood tests to rule out rheumatoid issues
We’ve seen lots or people privately about this as the wait for physio on the NHS was so long ( including a private physio ) and no mention of this clonus until today so I’m now very worried this is the onset of MS or something similar

I was told that problems can crop up as they grow and as such my child is being monitored until 18. The had a hemorrhage at 3 months old. Hope your DD is ok.

I don’t know why she was discharged then
I’m so worried now
I can’t get my head around a perfectly healthy and incredibly active child getting to 13 before any sign of a problem

My child is younger than yours so might be change in policy. I'd talk to the GP.

I would also say that joint pains can be arthritis and a blood test cannot rule that out. A lot of doctors think if you a rheumatoid factor negative, you are negative, but that isn’t true. My daughter has juvenile idiopathic arthritis which took a long time to diagnose, despite numerous tests, scans, etc. Blood tests were negative.

But it sounds like the first thing to rule out is whether this could be related to the prior injury.

Hope you get some answers soon.

Weve seen the GP about 10 times since all this started as I’ve kept going back
They said all reflexes completely normal and no links have ever been made to the injury
What other tests could I be asking for re arthritis?

Hi op, I totally understand that you are worried about your daughter but I think you might be panicking and going to the worst outcome here. A historic brain injury wouldn't cause MS. Obviously if you google clonus a long list of terrifying conditions appear but I think the fact that the physio noted 'slight clonus' means that is probably not of major concern. If they are worried they would refer you to a neurologist.

You mentioned that you've been back 10 times, how bad are the problems affecting her ankles? Is she able to walk, run, do sport? Is she in pain? Could she just have weak ankles or more supportive shoes?

They are referring to a paediatrician
This covers neurology hence my concern
Its been horrendous - missing school, waking in agony when they are “ locked “ in a certain position, having to be collected from school as can’t bear weight.

It’s completely random, some days she can go abiut her day completely normally and is part of the school netball team and practises for 2 hours after school with no trouble and other days just walking to the toilet can set it off

It doesn’t sound exactly like arthritis from your description but I wonder if it might be something similar. My daughter’s was diagnosed from the same scans that orthopaedics and paediatrics had used to rule it out. They were viewed by a rheumatologist who immediately diagnosed it. I wonder whether pushing for a referral to rheumatologist might be worthwhile?

I believe Neurodiversity is quite often accompanied by hyper mobility. I wonder if your DD sometimes overdoes it and that sets off her symptoms. Has she seen a podiatrist/ gait analyst? My DN had similar ( not as severe) symptoms and some shoe insets and exercises have really helped. I think growth spurts really exacerbated it too.

it’s understandable that you are concerned but, very gently, do you suffer from anxiety? Might be worth a chat with your GP.