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 ?

It can all be in the mind. From the age of about 10 to eighteen I was backwards and forwards to the doctors with every problem under the sun. Constipated. Diarrhoea. Headaches. Aching. Numbness. Nightmares. Turned out nothing clinically wrong but I was craving attention. My Mum left my Dad when I was 3 years old and when I was 6 my half sister was born. After that I was ‘dumped’ and second class citizen. Took years of therapy to work that out.

@JacobReesMogadishu

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.

Another one here too. I went through similar symptoms for years. You sound like my Mum, Jacob, she fought tooth and nail for years as the dr kept dismissing me as 'just not wanting to go to school'. He had to apologize once the specialist diagnosed me. Finally diagnosed at 16 with EDS and Fibro, then years later discovered I had Refractory Celiac disease (no one knew about this disease when I was a kid).

Celiac disease is much more nasty than people believe, it can damage your bodies ability to absorb vitimins and nutrients, even when you have been on the strict diet for years. It is just not a case of a gluten free diet and you're fine!

a

For fibromyalgia to be diagnosed, certain criteria usually have to be met.

The most widely used criteria for diagnosis are:

you either have severe pain in 3 to 6 different areas of your body, or you have milder pain in 7 or more different areas
your symptoms have stayed at a similar level for at least 3 months
no other reason for your symptoms has been found

Copied and pasted the above from the nhs website. If they can’t find another reason for pain it sounds like she meets the criteria for fibro....depending on how many areas are affected? So if it’s not coeliac and not Eds and they have no other suggestion surely they have to diagnose her as having fibromyalgia? I’d be asking why they’re not?

On what basis did they rule out EDS/JHS? She sounds a lot like I was as a child and I was passed from pillar to post. I didn’t get diagnosed till I was 40, after a particularly bad episode which seemed to trigger lots of twitching and muscle spasms.

@user1468538201, I'm very sorry you had so much to bare. My eldest had m.e / c.f.s after glandular fever too; I have a previously very fit pain free mother who got polyfybromyalgia aged 84, and a sister with m.e. None of them were negative people and so to state that diagnosis implies a negative mind set largely pisses me off. I wish you best of health, as a mum that watched her daughter be 3/4 of the child she was. On a positive note she's so much better now xx

If they think it's a functional neurological disorder or somatic/conversion disorder they should tell you that (not hypochondria at all, but the body converting trauma or stress into pain and tremor - nothing to do with making it up). If your dc does have trauma/family issues/stress then seek a CAMHS opinion but with low expectations. If not, then definitely seek answers elsewhere.

Sometimes doctors are wrong and they don't know everything. You have to advocate for her. I'm an expert on my daughter even if I don't understand medicine. Last month a GP was no help. What she offered was ridiculous. I rang a different one. Immediate referral. Appointment in two weeks with specialist.

Keep on.

DD has had problems. Doctor forgot about her when went to have a baby. Years of paying for private treatment. Second appointment with someone new, dd diagnosed, finally getting somewhere. Something else happened. Great GP not happy. Sent to hospital. Consultant asked questions. Listened when I told her stuff I thought was irrelevant. Suddenly DD is seeing who she should have seen at 2 and thankfully no lasting damage and she will be okay.

None of this wouldn't have happened if I hadn't kept asking until a doctor listened.

Please get a second opinion. If they don't like it then should learn more.

If they think it's a functional neurological disorder or somatic/conversion disorder they should tell you that (not hypochondria at all, but the body converting trauma or stress into pain and tremor - nothing to do with making it up).

They should also make a referral to an OT for help with pain management and CAMHS to help manage the source of the pain. Whether the root is in something physical or something psychological, it is still pain and she still needs help to manage it.

My DD2's somatic pain improved considerably after she started meds to help manage her anxiety.

Do whatever ti takes to get to the bottom of this.

keep going OP. Your daughter will be grateful all her life x

In terms of cost, start asking around about osteopaths. I know you are nervous. Ring a large physio practice locally and ask if there are any osteopaths they recommend (everyone is competing for work so you will have to be persistent).

Ideally you want to find out who on the old primary school playground was a health professiona and ask them.

sorry!

£50 for a proper osteopath assessment.

That’s terrible, but I’m not surprised.
My DS (16) has had pain in legs, but can be in other limbs/parts, since he was 12.5. Always been dismissed as (related to) growing pains (he’s tall but he’s pretty much finished growing now). we did get a hyper mobility diagnosis from a private physio. Not sure how much weight that would carry with the NHS. Have you tried anyone private?
All the GPs were concerned about was whether it was sinister and did initial bloods, but apart from needing more vit d they were not interested when it was ‘just’ pain. Painkillers make no difference either.

The prevalence of coeliac in the U.K. is 1 in 100 - goes up to 1 in 10 if someone in close family has it.
That doesn't sound to me that unlikely especially if child is showing symptoms that need ruling out.
It took months to get my child diagnosed with coeliac even though he had classic symptoms and a close family member with it.

Please don’t get panicked into seeking a private consultation.
I suggest you wait until the letter reporting back from the paediatrician is received by your GP so you know what has been concluded then request a GP appointment. You can discuss this easily over the phone (as surgery visits are reduced) and explain that it was dismissive and not at all satisfactory - there are some great reactions in posts above to quote!
Have a list of questions ready and ask to be referred for a second opinion or an alternative specialist consultation.
You’ve got nothing to lose and the right to seek advice from your GP
What a worry? Good luck!

You say you saw a paediatric rheumatologist, so I would assume that they are saying the problem is not rheumatism/arthritis. Thats not saying there is nothing wrong or that it's in her mind, just that it isn't part of their remit. The next step would be for a referral to a different discipline such as general orthopaedics or neurology.

Go to PALs, they really do make a difference.

Bumply, a woman I know was told she had anorexia and it turned out to be coeliac. The final doctor she went to asked her if she had any Irish or Welsh ancestors, and Bingo!

Hope your DC is doing ok.

Am assuming she has been tested for Lyme Disease.
Our DS contracted it. Luckily we had a clued up GP.

Has she got ehlers dangles hypermobility

took thirty years to get my diagnosis. I wasn't very persistant though. put up with pain when walking for decades.

OP, you really shouldn't have to go private. Instead, go back to your GP, tell them you are not happy with the way you were treated and ask for another referral to a different consultant. If your GP won't do that, change your GP.
When my DCs were little, I occasionally apologised to my GP for bothering her over something that turned out to be nothing much. She told me that a child in pain should ALWAYS be taken seriously.

She needs paediatric neurologist first to investigate and rule out various neurological causes (that would involve a full battery of blood tests, so if it is something inflammatory/rheumatological etc, blood tests would indicate this as a possibility. Then, if it does turn out to be psychiatrically based (or rheumatological/gastroenterological etc) rather than having a neurological cause, they should refer her on to the appropriate specialist.

@Coffeecak3

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.

Osteopathy is a pseudo science.

My grandson has hyper mobilty and possible EDS . One consultant said missing a lifeline on his hand was a sign but they would not do a genetic test .

B12 deficiency can cause pain and tremors ( check out the b12 deficiency Facebook page ) in fact it can mimic parkinsons .

Not sure what to suggest but don’t give up yet .

That sounds awful and it would be reasonable to complain. When I read your first description I thought cealiac too. Has she had her b12 tested? Low b12 can cause all kinds of issues, including neurological damage.