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

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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 ?

I think the paediatrician was wrong to dismiss your daughter like that. Please do ask for a second opinion.

In the meantime buy her a weighted blanket (if you haven't already); they do help with such symptoms and having a good night's sleep may make a difference. There are also meditations (music type) on Youtube for aiding the healing of neuropathic pain and they can be quite effective.

Do let us know how your daughter gets on. She may well outgrow it - if she is still growing - but that does not mean she is imagining the pain and twitching, it is certainly real. Somebody else may have better ideas of how to manage her symptoms.

If your daughter has had all reasonable tests and investigations, and they are all normal, then I am. Not sure what you expected them to do?
I don't think it sounds great "bedside manner" but if all pathology has been ruled out, then you are left with limited things as a doctor you can offer.

OP, it's not satisfactory but if you remain unhappy when the referral is closed, return to the GP as ask for a new referral and choose a different hospital, possibly a regional centre. If you feel more assertive, after the coeliac results return negative, rather than allowing the consultant to close this referral, ask them to refer to a specialist centre.

Good luck.

This happened to me when I was 12! They said it was because of my weight (was slightly over weight) and told me to lose weight ASAP and discharged me and also gave me a mild eating disorder!! Fast forward to age 19 and multiple doctors appointments and hospital admissions later (and multiple diazepam prescriptions because they blamed anxiety), I was diagnosed with EDS and POTS. Keep pushing OP. I really wish my Mum had done that for me.

@Pizzaistheanswer I was about to say that I had this and discovered it was EDS. It wasn't until I was in my 30's though and my file happened across the desk of a physio with special interest in it. I cried with relief when he said he believed all the pain I was in

GPs are being offered cash payments not to refer patients to hospital, in a move which leading family doctors have criticised as ethically questionable and a risk to health.
2018 article www.theguardian.com/society/2018/feb/28/gps-offered-cash-to-refer-fewer-people-to-hospital

Osteopathy is not rubbish .

Don’t be afraid of making a complaint, sometimes that is the only way to get anything done! pALS are really good. Your poor daughter it’s not fair, and poor you to be dismissed like this. I would probably take her to a private consultant too, whilst I was waiting for a definitive answer from the original doctor via PALS.

Good luck!

Osteopathy is alternative therapy, right?

So unlikely to appeal to everyone, and in this case OP is seeking diagnosis for her DD. Alternative therapists can’t provide that.

YANBU. As a child I had severe pain for three months and the dr kept telling my mum I was just starting my period and was being dramatic mixed with a low pain threshold, to send me back to school and I would snap out of it.
I eventually collapsed while walking to school and nearly died, resulting in having emergency surgery to remove multiple tumours.

I hope you get your answers, I wouldn’t care about black marks against my name and I would keep pushing for the benefit of my child.

This is SUCH a common story - particularly with younger girls.

Mine - like many others on this thread also turned out to be EDS. My symptoms became bad at age 15 and it took me just under 9 years to get diagnosed. Studies have shown the average time it takes to get a diagnosis is 10 - 20 YEARS.

I know someone currently who is around age 19 and has been suffering with her stomach tremendously for a year. Not being able to eat, feeling sick, unable to go to the toilet. She's ended up on a feeding tube, and every time she sees a doctor they accuse her of having an eating disorder. She doesn't.

Please keep fighting for your daughter. I, like many others, found most doctors don't know anything about EDS until you get to the specialists. I'd suggest Great Ormund Street, or there are private EDS doctors. Professional Grahame, Dr Hakim and others in London.

It's terrible how this condition is treated.

@SunshineCake

Osteopathy is not rubbish .

It is I'm afraid.

I haven't RTFT but keep pushing for a second opinion, go private if you can. If you can get referred into great ormond street rheum and physios they're amazing and I know there's teenagers there with similar experiences. They're v good at teaching them how to manage pain, both with physio and mental exercises.

You know as her mum whether your gut says she's unwell. If your gut is telling you, you're right. I wish drs would pay more attention to parents' instincts.

Osteopathy is not rubbish hmm.

It's certainly not universally acknowledged as being a true evidence-based therapy.

As a qualified nurse, I wouldn't consider paying to go to an Osteopath, especially if I didn't have a medical diagnosis for my pain.

There is a connection with pain and it being psychological.
I would look into it. This is a bit of a useless post as I can't remember what it's called. It's not to be sniffed at either. It causes some people to be in a wheelchair sometimes.
I think there is a centre , may be Bristol , that treats this using physiotherapists and clinical psychologists.
I'm not saying this is what your daughter has but it may be worth looking into it , if only to dismiss it.
Good luck. It's so hard when you're not heard.

So sorry this is happening OP. Our dd has limb pain and many issues and we are getting nowhere so far with it.

Whenever DS (now adult) had pain and 'strange feelings' in his legs which we couldn't explain we had to inform his GP bc. he once contracted Lyme's desease. It was caught early and treated, but his GP wanted to be sure.
Last time we went he was diagnosed with B12 deficieny.

And - sad to say - some doctors tend to dismiss girls bc. - you know - hormones.

Don't be afraid, @AfterSchoolWorry. Just educate yourself.

My dc and I have had very great treatment and experiences with osteopathy and acupuncture.

Sorry you both experienced this op.

It’s wrong that some medical professionals can be so dismissive. Similar happened to my dd more than once. She experienced tingling in her right leg which moved up her body and sometimes in her arm, which two docs said was “all in her mind”. Turns out it was epilepsy. Manageable, but nonetheless.

Don’t give up!

@andannabegins It is such a relief to be believed. I realise I was lucky to get an EDS diagnosis at 15/16, although they said they couldn't help me and prescribed Ibruprofen. I did get a diagnosis of inattentive ADHD in my mid-30s and it was so good to have recognition.

My daughter has had joint pain for a number of years. I found the GP very dismissive. They just suggested pain relief. Private physio was a lot more helpful - carried out a full assessment and worked out what the problem actually was.

I had joint pain from a 9, took until 14 when a physio diagnosed me I was hypermobile, and probably had the syndrome. Referred me to a consultant and that's how I got diagnosed. Then just Dumped on medication. Had a lot more issues, got told it was my age, turns out rheumatoid arthritis. It may take a while, agree with above go to pals, second opinions etc

Whilst YANBU to expect basic decency and a genuine investigation into these problems, I had low vitamin d and iron and I have honestly never felt pain like it. It happened during my pregnancy and I was hospitalised for months whilst they did tests on everything and scans - I was in worse pain than labour some of the time. I'm not a doctor, but from my experience, when my vitamin d and iron levels got back up, the pain just went away.

• your daughter has had all reasonable tests and investigations, and they are all normal, then I am. Not sure what you expected them to do? I don't think it sounds great "bedside manner" but if all pathology has been ruled out, then you are left with limited things as a doctor you can offer.*

Not necessarily as some conditions are diagnosed by history and examination alone. Some conditions have different types some of which can be diagnosed by blood tests/tissue biopsy and some of which can’t. Some doctors if not experienced in identifying a particular condition can rule it out due to not knowing enough about its various manifestations and completely misdiagnose something.

DD started with heel pain on walking around age 12. We were told it was growing pains. In her 20s she started with hip, lower back and knee pain and referred to the National Orthopedic Hospital who strongly suspected Ehlers Danlos syndrome. I had been diagnosed with fibromyalgia in my 30s and had a history going back to early childhood of fatigue, tendonitis, cricked neck, problems with digestion, intolerance to heat, cold, high blood pressure, sprains and bruising. I only got diagnosed after DD was asked for family history (my DM had very similar history to mine and died from the complications of throat laser surgery which caused her to haemorrhage. ). DD and I had an appointment together and were both finally diagnosed with EDS. I am not particularly flexible now I’m older but have lots of subluxations, arthritis, skin fragility and pain as well as fatigue.

I wouldn’t bypass paediatric care for osteopathy or acupuncture as this could end up with your DD not getting a diagnosis or the medical help she might need. It’s not like she’s sprained her ankle here. There needs to be a proper look at possible causes for her symptoms rather than just treating them in isolation. It’s not ok that she has been fobbed off here. It’s important to press for a referral to a general paediatrician who can start again and try work out what is going on for her. I would hate anyone else to get to their mid-40s before getting an accurate diagnosis like I was. I got to the point I was so worried about being thought of as a hypochondriac that I stopped going to the GP.