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 ?

Are your daughter's iron and vitamin D levels now optimal? Did you get a print out of her test results to confirm it? Some GPs will say your levels are ok when you are still just below the range and in some people unless you are near the higher part of the range, you still have issues.

We saw a private paediatrician for £120, in an area that's not known to be cheap, but tests cost a lot more (luckily had insurance at that stage).

My daughter has just had a consultant appt privately and it was £150.

MRI and blood tests £1400, a follow up consult £150 and another one in six weeks at £150.

We have insurance but the bills have just come through so have seen the pricing.

In your position if you can I'd at least go for a private consultation.

Could it be hyper mobility?

We were told today that it's definitely not hypermobilty (despite being told age 8, slight hypermobilty and lots mobility in feet)@Lifeaintalwaysempty

I'd wonder about EDS/HSD as well. I'm sorry the consultant was so rubbish. That's really not acceptable.

YANBU but there does seem to be a strain of docs like this - mine stops short of calling me a malingering hypochondriac (just). It's ironic when we are all told to take our health seriously

If you get a different diagnosis from a £65 initial private consultation with a non specialist but private Dr, they can refer the necesary follow up tests & Specialist Consultant appt back to & via the NHS.

@RedMarauder I give her vitamin d3 daily, an iron tablet , multivitamin and a magnesium. Paediatrician questioned why magnesium- I said as recommended in pharmacy for energy as it is so low, any thing to help.

OP this happened to me!

I was told it was just growing pains. Turns out I had severe vitamin D deficiency, normal supplements weren't doing anything so was put on 10,000iu oil capsules. Also had osteoporosis!

I know it’s costly but I would pay for private. The nhs doctors dismiss things easily and it’s like they want to get you out as quick as possible. I have no experience with private but my sibling does.

As a child i was taken to regular paediatric appointments for joint pains, told it was growing pains. I'm 40 + now and haven't grown for a very long time but am still getting pain... it seems to be a very long 'phase'.. rock on 30 years and my DS has severe hypermobility - beighton score of 9... and being investigated for genetic causes.... hmmm...

Please please be persistent. Aged 12 I contracted glandular fever, it was a relatively mild dose and I recovered from it but from then on I suffered pain throughout my body but mostly legs,shoulders, hands and arms. It would keep me awake at night, I'd try sleeping with my legs propped up against the wall, arms hanging off the bed, all sorts of things but always struggled to get comfy and pain free. I remember describing it as my blood was hurting me because the pain was all over and throbbing. My father used to call me Princess after the Princess and the pea. I didn't have the energy I used to have and my grip was effected also so writing was difficult. My parents were wonderful and never doubted me, they took me from doctor to doctor, R.A. was diagnosed but my blood tests were inconclusive, MS was ruled out but I got worse not better. By 19 I was on daily painkillers, I got pregnant at 20 and those months were the first painfree I'd had in years but afterwards I was even worse, I would drop things or my hands would lock on something and I'd struggle to let go, finally aged 24 I was diagnosed with chronic fibromyalgia, I was also told not to have any more children because my body reacted so badly after my son was born. With medication I managed to work full time in a job I loved, study hard,start a part time business with my new boyfriend (who I married) and build a house (before I met my husband - I was determined to support my son myself) but by my mid 30's I was medically discharged from my job, I was losing the power of my limbs, falling over, pain levels went crazy and I was constantly exhausted. I'm almost 50 now, I'm still in pain every day, I need prescribed opiates to cope, I manage but it's not the life I wanted,I'm fortunate my husband is understanding and supportive but I miss the life I had planned. Sorry for going on, didn't intend to write all that, what I wanted to say is my parents knew me, they knew I wasn't faking pain, they knew there was something wrong and they didn't let up fighting to find out what. Ironically lately there has been lots in the media about the dangers of longterm damage from a viral infection which is what happened me,please find a doctor to help your daughter, the sooner she gets the help she needs the better for her longterm. I really hope you find someone soon, do not let them talk down to you and never stop standing up for her. My mother stood up in a private consultants office and said 'get your coat on Sharon, this man has no intentions of listening to us so I have no intentions of listening to him or paying him either' that was back in the 80's here in Ireland, I hope things are better now and that your daughter is helped to feel better soon.

Rheumatology in my area are like this. They kept dismissing me and my GP kept referring me back to them. In the end I went private and had 2 mri scans with showed signs of joint inflammation from rheumatoid arthritis and sacroilitis.

Private Dr sent results to my GP, they then referred me back to rheumatology who said just because that has shown on scan does not mean it's the reason for your pain. You could have been like that for years. And dismissed me again!

At yet another appointment with my GP for the pain she called the consultant rheumatologist secretary in front of me and was very stern with them. They fitted me in the very next day and agreed that I did have rheumatoid arthritis and I am now on biologics!

I have no idea why they have this attitude.

At one appointment with the biologics nurse I was asked my pain score out of 10. When I said 7 she said that can't be true because you have got make up on!

I hope that you get to the bottom of it for your Dd.

Coeliac here with vitamin D deficiency. I would echo what has been said about pursuing these. Be aware if she's coeliac she may not be great at absorbing vitamin D from supplements, I'm not so she may need a higher dose or actual winter sunshine for the best results.

I would also recommend acupuncture.
I’ve seen have some amasing results with fibromyalgia etc...

@user1468538201 I know exactly what you mean about the recent ‘discovery’ that people don’t always recover from a viral infection.
I have ME, have been reading about the signs of long Covid and though ‘well yes. Just like what I have but you didn’t want to believe me’ :(

Sadly I think that if it was a DS, aged 13, experiencing pain for years-- the doctor would not have dismissed you immediately. I wish it wasn't so, but I believe it is.

@Solongsugar

We were told today that it's definitely not hypermobilty (despite being told age 8, slight hypermobilty and lots mobility in feet)**@Lifeaintalwaysempty**

Did they do a Beighton test?

Sorry, seen she has.

www.ehlers-danlos.org/what-is-eds/information-on-eds/children/

Lots of info here & EDS UK can help

Have they said why they thjnk it’s not coeliac?

Has she ever had her vit d level retested? If coeliac she won’t be absorbing and all the pills in the world won’t raise levels.

I was wondering about fibromyalgia, too. Please don’t go to a private walk in GP, they aren’t for cases like this. You need a specialist paediatrician. If you are short of funds then pursuing a diagnosis privately may be a bad idea- bloods, scans and repeat appointments will cost £££/£.

I suggest talking honestly to your GP and say you feel dismissed and just because they haven’t found anything yet it doesn’t mean there is nothing wrong.

If you are near London there’s the London hospital of complementary medicine next to GOSH which does a lot with things like fibro. ( which is a process of elimination).

Do take on board any ideas that may be put forward regarding mindfulness/ relaxation etc, they definitely can help pain. And physio/ hydrotherapy may also be helpful. Unfortunately not all conditions have a cure but most can be managed.

Just jumping on to say twitching could be dystonia, which is a neurological movement disorder. I suffer myself and it took over a year to get a diagnosis as it is quite rare. I saw many physios/osteopaths who were stumped, until one suggested this and was correct. Mine is easily managed with botox injections in the affected muscles (the neck in my case. This website is good for further info. Good luck OP.

www.dystonia.org.uk/what-is-dystonia