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 ?

I hope someone can help, I'm helping a friend get help for her ds, (he is austic non- verbal), an advice was given by a health worker that it would be beneficial if he went on AAR (Admission Avoidance Register) due to reasonable concerns. Mum is scared that if given such a label that he would be put away in a mental ward etc or if he was to ever hurt anyone he would be treated badly. The health worker insists this register is designed to stop such mistakes and young people that are put on there will be protected rather than put in such institutions because research has shown it does not work for them. I am usually very confident in giving sound advice but because she is very anxious about it I need to hear more about AAR.

Pp’s who say osteopathy is a pseudo science have an absolute right to their opinion.
Osteopathy is recognised as a profession by NHS England.

My experience of osteopathy is that it has helped my back problems when a rheumatologist said exactly what the paediatrician said in op, that I was not in pain and it was in my head.

A good osteopath will never claim to treat anything other than muscular skeletal problems. They do not manipulate routinely.
They always take a thorough history and if they can’t treat you they will tell you.

This

“A good osteopath will never claim to treat anything other than muscular skeletal problems. “

My consultant neurologist told me to go to an osteopath.

There’s also an arguement that with a clinically normal level of vit b12 if someone has symptoms then a trial of vit b12 injections could well be indicated. There’s national guidelines about this....see if symptoms improve with the injections.

Please complain. And then go back and ask your GP to refer you to another Consultant.

I had exactly the same with Ds1. Consultant was so dismissive I was furious. I paid to see his colleague privately. Then I got refered back into the NHS. A doctor later told me that the original Consultant was Later questioned about the first appointment and he wrote in the notes that "maybe things had been overlooked".

My one private consultation cost £100. That may be a lot of money to you but let me reassure you it was money well spent because once I saw him privately, very quickly, I then had the ammunition to demand/politely request that I was referred back to the NHS.

and then I then had the evidence and I walked in to the second NHS meeting with a totally different attitude because I had evidence in my hand.

Could that work for you? That way of doing it?

@Solongsugar, if you are thinking about doing some blood test such as vit d, vitB12 etc... id encourage you to go to see a nutritionist.

You can get those tests done quite easily, most of those can be done at home with a pin prick test (a few drops of blood on paper or in a tube). However, it’s the interpretation that can be tricky.
Eg your vit d level might be considered ok (over 50) but it might not be optimum (so the person can still experience symptoms). Same with vitB12 where many people consider you can have neurological symptoms even if your vitB12 level is above 200 (which is considered ok by a gp).
So the interpretation can be tricky and you might want support there.

Also if she already has had some issue with iron deficiency etc... I would want to look at some digestive issues which could stop the absorption of vitamin and minerals.

I'd seek a second opinion and keep pushing for an answer. Get the blood results for iron (including serum ferritin for her iron stores and vitamin D to see how far they are into the normal range as you can be in the normal (but not optimal) range and still have symptoms. If she eats a varied diet, is it possible she is having trouble absorbing nutrients? Something like undiagnosed celiac as they can have issues with vitamin D.

You mentioned your daughter was previously assessed as hypermobile, how hypermobile was she? Sometimes people with Hypermobility Syndrome are no longer hypermobile (the muscles have seized up around the joints), but still have HMS. I have read that hypermobility + pain = HMS, not sure if that is the case.

I'm hypermobile in many joints, had what seemed like fibromyalgia/HMS. To illustrate how sometimes doctors do miss things, I saw a consultant privately who was the authority in the UK on hypermobility for severe chronic arm and back pain and he didn't pick up the hypermobility! Just discharged me saying I didn't have arthritis and there was nothing he could do. To be fair, at the time I didn't know I was hypermobile and thought everyone could put their hands flat on the floor and bend their elbows when they did a forward bend from standing, it was my normal.

Years on, I'm a better place but it has been a lot of trial and error. I've never had a diagnosis, my physio put me on to a remedial massage therapist who helped so much. More torture chamber than spa treatment, very much like old school physiotherapy where they manipulated the muscles rather giving exercises but it worked for me. It was the very tight muscles causing the pain, they were all bunched up with lots of little granules and when it was at its worst caused nerve pain. I felt like my arms were on fire along the nerves. The remedial massage therapist was registered with LCSP www.lcsp.uk.com/, they have a list of therapists. I'm not sure if they work with children but I'm putting this out there for any adults with similar issues.

For the fibro, over the years I've used yoga (the gentle kind), find meditation helps with anything muscular to help unwind, body scans (where you imagine every muscle relaxing in turn) seem to help a lot at the moment and am not getting so much muscle tightness and have managed to reduce the physio/massage routines down completely.

Just coming back to say, you've all been very kind giving your opinions, thank you for the sound advice

Good luck x

Good luck, I hope you get some answers for her x