Paediatrician dismissed us before we sat down, a.i.b.u

[Solongsugar]

To avoid drip feed, dd 13 has experience pain in limbs for years. Slight deficiencies in iron and vitamin d but supplements keep them at ba, but pain and tremors/twitching is getting a lot worse.Got a referral with rheumatoid paediatrics; was told her pain was just a phase, that she shouldn't think she has something when she hasn't. I did politely insist during the meeting that she wasn't a hyperchondriac, we are positive people and don't focus on I'll health and left it like that because I knew that pedeotrician and physio had already discussed and the session was to say there will be no diagnosis and you have to get on with. Which is what she's been doing since aged 7!

A.i.b.u to think that at least 6 years of low level aching/pain is not a phase and a lecture in positive thinking was not warranted actually ?

No YANBU. I despise how quick most doctors are to dismiss issues. Easy for them to think its in your childs head when they don’t have to live with it everyday.

Is there anyway you can ask to get referred to someone else for a second opinion?

PALS... contact them and let them feed it back through the system!

You have been left feeling dismissed, unheard and in limbo regarding anything that my or may not be wrong with your DD - who deserves some active treatment even if she is 'only imagining' it!

www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

Have they referred her anywhere else to help with this "positive thinking" ?

For example, people to help her with strategies to deal with chronic pain eg. healthy young minds

What about her tremors & twitching though? That sounds neurological . Why have they put that down to? That is not normal. Can you ask for a private referral. It's about £60 for a private appointment at private walk in Drs in London , tho no idea how they're operating since Covid. Skype probably. Worth googling ?

Take her to a recommended osteopath.
An osteopath will check that her muscles and joints are all aligned correctly.
Osteopaths are usually very honest and will advise if they think further treatment is needed.

Funny isn't it? We can come up with a couple of possible actions that would be very easy and cheap to do and leave OP and her DD feeling listened to, valued, possibly leading to an effective treatment plan, physical or psychological. But somehow, someone somewhere has made a judgement that has prevented it from happening!

@CSIblonde

What about her tremors & twitching though? That sounds neurological . Why have they put that down to? That is not normal. Can you ask for a private referral. It's about £60 for a private appointment at private walk in Drs in London , tho no idea how they're operating since Covid. Skype probably. Worth googling ?

Agreed. Private referrals for children don’t cost much as it’s just the consultant face time you need to pay for - tests and follow up etc can be referred via NHS.

I had pain like this as a child, mainly focussed on my knees - it was dismissed as growing pains, dismissed as me making a fuss, dismissed as so many things I gave up going to the doctor. Don’t let them fob you off, try for a second opinion, see if you can find a support group on the internet to self diagnose and consider going private if you don’t get anywhere. I had hoped that their attitude would have changed since I was a child. My condition, whatever it was, finally self resolved at about 45 but I keep expecting it to return. Why do doctors pretend these conditions are not real just because they don’t know what they are? It makes me cross.

Hope you find an answer or at least someone to help.

This happened to me - growing pains, they said! Eventually saw a different doctor who referred to a different specialist who diagnosed EDS and POTS, but I think my parents must have been really persistent.

Sadly, pain in girls and women is dismissed more frequently than for boys and men:
there's one study here

YANBU. Could you manage a private appointment? Did they refer on to any pain clinic or specialist?

You can call or email these: londondoctorsclinic.co.uk, £65 for video appointment, clinics in London & Birmingham. Also, doctap.co.uk ( £34 an appt).

I’ll second the osteopath - they are very knowledgeable and would help you rule out anything muscular or skeletal.

Sounds similar to symptoms my Dd had for years and was fobbed off for nearly a decade. I’ve had to push for diagnosis as I knew it wasn’t right. She is now diagnosed with coeliac disease, POTS, elher danlos syndrome and fibromyalgia.

She was also low in vit d which can cause aches and pains. Is your DD’s vit d levels rising.? I’d certainly say maybe wait until vit d levels are normal and then you know that isn’t the issue. Though in the mean time I’d ask your gp for a coeliac blood test because anaemia and low vit d along with aches and pains could be coeliac.

If not coeliac and not vit d then you need to push for more answers. Ask for a second opinion, definitely go to PALS.

Is there any swelling around her joints? Has she had bloods taken by the rheumatologist to check ANA? It may be worth going to private x

I dunno we watched embarrassing bodies or something recently and the girl and her mum had been seeking help about the girls blindness after she had a car accident
The drs went to town on the girl, she said she was 10/10 for pain scale or something yet was sitting fine and happy in the Dr office. So they hooked her brain up and showed her photos and low and behold her brain reacted to each photo ..because she could see and wasn't blind in her eye
They diverted her to mental health because there wasn't actually anything medically wrong with her. Could be the same for your daughter.
This girl's mother was just ignorant to the fact her daughter was making it up, probably for attention.

I get twitches in my legs and arms, it's just muscle spasms and they don't hurt at all

My teen dd has a heart condition and for 2 years her cardiologist has dismissed her chest pain as anxiety and every six month visit resulted her in being upset. He has now obviously had a complete U turn as we had a letter recently saying next time she experience it she needs to go immediately to A&E for ECG and troponin bloood test.

OP i would ask for a referral to another hospital, although not sure if that is going to be easy with the Covid situation.

They are going to run a coeliac test but told it was extremely unlikely; in fact it sounding virtually like this- "you've had most blood tests there are so the only one you haven't is ceoliac and of it isn't that don't bother us again."

I'd said that the everyday pain she gets left her wondering if she had Ehlers danlos syndrome or even m.s and that's why we wanted to rule out and manage. She said definitely not physical feature of eds; when I said sometimes eds doesn't look like what it should look like, the physio jumps in laughing and within her 2 min rotation of leg and hand (Breigton score of 3).

I'm scared I'd have a mark against me on record if I complained or asked for second opinion? I haven't a lot of confidence or money but will pursue this with my daughter's wish.

@Horehound was it diagnosis detectives? If it was, I thought it was functional visual loss, more she genuinely couldn’t see but the cause was psychological.

@Horehound I don't think over 7 years, she could keep up the belief, if anything she'd grow out of that. I know what you mean about the possibility of mental health but again, I believe that she's smart enough to say by now with regard to working out of it was indeed mental health formost

If I go private, how much would I be looking at?

I wish people wouldn't flippantly use the phrase "in his/her head" as it sounds like saying they're making it up. Psychosomatic pain hurts. Functional medical conditions are down to mental health disorders, but they still genuinely make you ill. It isn't about making it up, or pretending, or faking it, or malingering. I have no idea whether the OP's DD has a physical disorder or a psychological one. But both types are just as real, only if different ways.

I thought coeliac disease too, OP. Beware a false negative, and make sure she's eating plenty of gluten before the test.

YANBU. I don't know what happened or when our medical service became so useless in so many ways, but it did and is.

Sorry that you and your DD were treated that way.

Private paediatrician likely to cost £250 upwards per consultation, plus costs of any tests. That’s what I’d do if funds allow.

Would get copies of any tests already done, with dates etc, so that if you do go private the dr can have a copy.

Nocool @nocoolnamesleft, I did assert the fact that she isn't s hyperchondriac and felt like saying, it's s good job we can Google because fat chance of finding out otherwise.

I definitely felt like she was shut down. She was asked a question, then dismissed. The physio explained to her if she does activity Monday, don't do one Tues , We'd; naturally I wanted to say well I was able to at her age and its yous telling her to be negative now, not me!