Child lame (ataxia) after the flu

[Laffydaffy]

Posting here for traffic. I use the word lame, because it is a direct translation of the word they use in the country I am in.

DS (14) had influenza B a six weeks ago and became lame. He cannot walk. He can wobble himself along for very short stretches with support assistance but jerks and is exhausted. The multiple tests so far have not shown that the flu is the definite cause (blood tests show no sign of inflammation, and EEG ans MRI were fine), but there is also no clear sign yet of where the problem is coming from.

At the moment, we continue physio and wait for an improvement or a deterioration, of which there are neither, and then further, more invasive tests next week. If this continues, he will be wheelchair-dependent.

Has anyone else experienced this sort of neurological problem or something similar after the flu? For what it is worth, we were all immunised and we all had a really bad time with it.

Are you sure it was flu and not covid? It sounds potentially like long covid if he's exhausted. Or general post-viral fatigue.

Look up "guillain barres following flu". Whilst it is incredibly rare and unlikely, it is a possibility. It can happen spontaneously, but the majority of cases occur in the 6 weeks after an infection, and flu can be a trigger. As i said, unlikely and rare, especially given his age, but worth considering.

Your poor DS. Is it Guillain-Barré syndrome? That causes neurological problems after a viral infection.

My DS got an infection at 12 which gave him very severe neurological symptoms (we never found out what it was - probably either bacterial or an early case of covid). He couldn't walk properly, was dizzy and twitching, had a tremor, couldn't use stairs or stand straight, kept falling etc. This went after a few months (although it tends to resurface when he is ill or getting ill). There was never a sensible diagnosis for why it happened but it turns out that it is a known side effect of some infections.

I hope your DS recovers.

Post viral neurological changes aren't common but can happen. What treatment have the drs tried so far? It is often an over activation of the central nervous system causing inflammation and it to attack itself, such as the guillain barre mentioned above. Have his inflammatory markers have come back high?
At this stage any physio should be very gentle, he is likely to still be in the acute phase if it is guillain barre, so any treatment should be aimed at reducing the inflammation and allowing his body to rest and recover, pushing him too hard could be unhelpful.

When my Dd was 18mths old she stopped walking and reverted to crawling.

She was diagnosed with Irritable Hip Syndrome (I’d never heard of it either). She was prescribed antibiotics and recovered in a week.

She had had an incredible snotty nose the week before and the doctors said that IHS is often caused by a virus. Not sure why the antibiotics were prescribed but they seemed to work.

Is it possible for a teenager to have the same thing?

M.e can start like flu and be like this. It isn't just fatigue.

A friend‘s husband once mentioned something similar happening to him after a virus. He would have been 15 and spent a year in a wheelchair. As I understand it, it then just cleared up. However, I didn’t ask him what medical support he’d had.

Now, early 40s, he’s as fit as a fiddle, and has worked since about 17 in a quite physically demanding area. No advice, no knowledge, but it did make me think of what he’d said.

Wishing you and your DS all the best, good medical support and a full recovery.

My niece had something very similar to this. A post viral effect that made her unable to walk and need to use a wheelchair for some time.
She is fully recovered now but had to use a wheelchair and then crutches for almost a year.
It's now two years on and she's absolutely fine.
Sorry you are going through this OP, it's hard but if it's the same thing there is a definite end in sight.

You guys are brilliant. Thank you all very much!!!!!! I have felt so alone here, trying to push for answers without knowing what is really going on. It really sounds like GB. I don't know why I had not thought of it (nursed some adults with it). At least next week, we can push for a lumbar puncture to find out if it is. DS had these symptoms at the end of the flu accompanied by sudden stridor and requiring regular salbutamol, and the rest of his symptoms follows a possible GB trajectory. If it isn't, at least we know that it it will take a while for recovery.

At the moment, he is just resting.

My big fear was him just losing muscle mass, which we have sought to try to mitigate by regular, short walks. He does it bravely, too, jerking and wobbling and joking (because if we don't laugh I will cry).

Again, thanks so very much. I feel so much better for all your stories and experiences.

It might be coincidence, but the onset of DS's neurological symptoms was accompanied by stridor, very poor peak flow and acute breathing difficulties (which he tends to get from chest infections). We don't know if he had GB or something else brought on by infection.

My DD had similar years ago. She suddenly wouldn't/couldn't walk. She had lots of investigations and even a brain/neck MRI. Lots of things were considered, but in the end it was put down to "one of those things"!

She needed to use her chair or be carried for some months (she already has a chair as she's hyper mobile/hypotonic and disabled). It was frustrating for us as her recovery took about 6 months, but after the first month or so the doctors kept saying she was walking normally for her. (She wasn't.)

We're now years on and she's fine. She picked up where she had been and after a year we couldn't tell the difference. She did have the odd post-viral episode of not being able to walk for a year or so, but it cleared up much more quickly.

Not the same as the flu but after a viral infection my son is prone to Transient synovitis (someone up thread mentioned irritable hip syndrome), basically inflammation in the hip joint after an illness. The longest it lasted in my son was 6 weeks, a few courses of antibiotics when it didn’t clear with rest and physio, and they just monitor him now after any viral or bacterial infection. No reason given as to why he is prone to this, it is like the remnants of the infection settle in his hip and don’t want to leave.

So far, he has had blood tests for inflammation markers (post-flu), head MRI, EEG, plus an ECG and heart ultrasound (last two he gets yearly anyway for a dodgy valve). Nothing really showed, so next week he will get another check-up and scheduled for a lumbar puncture, spinal MRI and some electrical stimulation test I am not familiar with.

His little sister had a lumbar puncture last year for a completely unrelated problem, and although she is pretty stoic, it really, really hurt. No local, just a numbing patch which did very little, and nothing for the second try. DS remembers this very clearly, and believes this will be a painful procedure, which I cannot dispute. Do they do local anesthetics in the UK for children's lumbar punctures? My only other experience is with them under a general, and usually combined with other procedures (kids oncology) so I am not sure if I can advocate strongly for a local.

Are there other tests I should be aware of?

Edited: grammar

And thanks so much, everyone. You have been a real source of help.

I have chaperoned LP's with teenagers and we have given mild sedation when necessary for the proceedure.

They can do a local for a lumbar puncture.

The electrical test is a conduction test, they put an electrical current through specific muscles to see how they respond, this can be quite uncomfortable unfortunately.

I can't think of any other tests they should be doing at this point.

Thanks @Bushmillsbabe

Do you mean uncomfortable like a TENS machine on high or uncomfortable as in pain like a needle?

For the lumbar puncture, I will be pushing for sedation of some sort. Children's pain is often not well managed, in my experience, and I will not have him suffering more than he has to.

If it's the one I think, it's pain like a needle. But best to ask your child's medical team about this. My daughter has had various tests and they have done their absolute best to make her as comfortable (both physically and emotionally) as possible.

The only other test I can think of which DS had (he had bloods and a cranial MRI etc which showed nothing) was for Lymes Disease just in case. This is (obviously) only worth doing if there is a chance your DS might have been infected.