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Don’t know what’s wrong and struggling to find help.

naomi_reece

Hi everyone, I’ve joined this forum as I’m at a loss as to what’s wrong with my son and what to do for the best.

I’ll try to keep this brief!

5 weeks ago my 10 year old son woke with sore legs. It was straight away bad enough to limit his mobility and keep him off school. Within 24 hours the electric shock type pain started which had him screaming in pain. The frequency of these quickly increased to multiple a minute. His legs are agony if they are only even lightly touched. Within a week we’d been to the doctors twice and to the hospital 3 times. They couldn’t see anything wrong and implied it was in his head and kept sending us away.

Over the next weeks the situation continued to get worse, multiple calls to the doctor, eventually a neurology referral was put in (but rejected as we were referred out of area). Eventually a doctor advised us to go to a&e as he was now unable to stand up and losing bladder control through the night.

From the point he spent the next 5 days in the children’s ward where they wouldn’t let me stay with him as I would have to bring my young breastfed baby with me so he had his granny with him. They would only let me visit minimally and he received shocking treatment. The nurses were annoyed if they buzzed for them no matter the reason and meals were either missing or cold, amongst a lot of other issues.

He’s had 2 mri scans and a lumbar puncture which have all came back normal. They wanted him to stay in for physio but he was hysterical and wanted home so I’ve brought him home. He’s going to be getting physio as an outpatient but they won’t refer to a neurological specialist despite all his symptoms being neurological.

I’m now at home with 10 year old who can’t stand or get around. I’m currently having to carry him to the toilet, up and down the stairs (badly) and lifting him in and out the bath. The doctors when I asked for advice said I just had to get on with it.

I’m going to call the doctors on Monday about another neurology referral.

does anyone have any thoughts on a- what could be causing this and b- where we can get advice on caring for a (hopefully temporarily) disabled child?

Thank you in advance from a barely holding it together stressed out mum!

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naomi_reece

Hi everyone, I’ve joined this forum as I’m at a loss as to what’s wrong with my son and what to do for the best.

I’ll try to keep this brief!

Thank you in advance from a barely holding it together stressed out mum!

janer1967

Hi and welcome to the community

I am sorry to hear about your son it seems you have tried everything you can to get it under control

I really wouldn't know what else you can do other than look at going private to a consultant but that depends on finances

We are here to support you and you can talk anytime to us as it is important to keep yourself well and focused too

Could you get in youch with children's services maybe they can suggest something

Also a care needs assessment where ot will recommend aids to improve his and your life You can self refer through gov website if won't ease his pain or give any medical advice but could make daily living easier

Let us know how you get on

janer1967

Hi and welcome

Sorry to hear about your son

I don't really have any medical advice but a few things to consider

You could explore going private to a neurology consultant finances depending

You could refer for care needs assesdmentbwont ease pain but an ot will recommend anything to make daily living more manageable for you both

You can self refer on gov website

Maybe also contact children's services as this must be affecting his education as well

Hope things get better we are always here to offer support or just let off steam

Sandy_123

@naomi_reece hi and welcome to the forum, so sorry to read about what your son is going through, hopefully they can get to the bottom of it, must be stressful to you both. Let us know how you get on.

Cher_Alumni

Hi @naomi_reece and a warm welcome to our online community. Blimey, it sounds like you have gone through a lot lately, I'm so sorry. How are you coping? Remember that your needs matter too so if you feel like you're struggling emotionally to speak with your doctor.

As we aren't medically trained, we'd be unable to offer advice about what might be going on diagnosis-wise. However, I'd follow your gut instinct and push for that neurological referral or ask for a second opinion. I hope you get some answers really soon.

As @janer1967 mentioned, you can self-refer for a needs assessment via this government webpage. This will involve someone visiting you from your local authority to assess what support you need, for instance:

short break services

holiday play schemes

care at home

some aids and adaptations

financial help, eg money towards travel costs for hospital visits

As part of the assessment, you would fill in a financial assessment to see if you would have to contribute to costs or whether support would be funded by the council. The council would also be able to advise on any local support groups too.

Scope also have a free service called Navigate for parents/caregivers whose children are on the pathway to a diagnosis. You can apply via the link provided and would receive up to six one-to-one sessions with a trained advisor who can help with:

organising your thoughts and feelings

practical advice and suggestions

coping strategies and insights

taking positive actions and helping you with emotional wellbeing

Just to let you know, I've merged your threads together so people can help you in this one space

Please let us know how you get on and I have everything crossed for your son. Take care.

forgoodnesssake

Hi, not much help really but this is really ringing a bell with me that I have heard somewhere of someone experiencing this in the past with a child. I'll rack my brains and see if I can remember where and what was said about it. take care, Jenny

naomi_reece

Thank you all for your kind words and advice. The council website won’t let me apply for a needs assessment online but I’ve got a number to call in the morning.

I’m going to chase up the physio tomorrow and call the gp to ask about another neuro referral being made.
A friend of mine knows a private children’s neurophysio who does free telephone consultations so going to contact her tomorrow.
hopefully by the end of tomorrow I’ll feel a bet less lost.

xxx

janer1967

Great let's hope you get somewhere let us know how you get on

Tori_Scope

Yes, please do let us know how you get on this morning with the call about the needs assessment @naomi_reece

I hope the other calls go well too, the free telephone consultation sounds good.