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 ?

@SunshineCake

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

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

DD was in a terrible car accident (run in the back of) which has left her with back pain so bad she could not sleep. She now sees an Osteopath once a month and is pain free. The other party's insurance pays for this Osteopath. Can't see an insurance company paying out for something that does not work.

My daughter was fobbed off with growing pains and turned out she had hyper mobility. From what I've read I think hyper mobile joints are in the EDS spectrum.
Did the Rheumy rule out juvenile arthritis?
I've just seen a neurologist for same symptoms as your dd & today had an MRI to rule it in or out so could you not insist on a neurology appt? There's some good advice on here. Good luck xx

Meant to include rule MS in or out.

Well, anecdata, placebo effect etc

Read a few good quality papers on it. It's woo.

@AfterSchoolWorry

Well, anecdata, placebo effect etc

Read a few good quality papers on it. It's woo.

It is a shame you are so closed off.

I wouldn't bother with an osteopath. I would try a private physiotherapist who sees children. Won't be more than 70 for initial appointment.

Look up Ehlers Danlos. My kids have it (hyper mobility type) it’s genetic and I had it as a kid but back then was obviously fobbed off with various growing pains.

Saw geneticist/rheumatologist privately. Not cheap was about £600 I think per child. Orthotics in shoes etc. Various minor (but expensive) things that help.

Solonsugar:

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.
...
You will not have a mark against you. As for a referral to another specialist, that is your, or rather your daughter's right. It happens all the time. All that will happen is her notes will be sent to the new specialist for reference. Personally I would ask for a neurological opinion.

Probably available on nhs I’m sure if you ask right questions

@Oaktree55

Probably available on nhs I’m sure if you ask right questions

Yes a second opinion is always available on the NHS.

OP, your daughter needs you to be persistent on her behalf, please do not be intimidated. Oh and do consider the weighted blanket, it really will help her.

Appalling.

I would get a second opinion for things like RA.

If she has chronically low D and iron, what is her digestion like? Does she eat meat? A private test for B12 could also be helpful. TheNHS test for B12 is not very accurate.

I would also get a test for celiac

A few people have mentioned Ehlers Danlos syndrome. I have this, and so does my son...my daughter is suspected also. The hypermobility type is diagnosed with a physical assessment and the Beighton test score, as well as history of personal injury. Your story really resonated with me, as I was told for years that my aches and pains were due to depression and anxiety, reading too many books (I am a medical epidemiologist) or chronic fatigue. It was only when my internal organs started falling apart 40+ that it was taken seriously, and I was diagnosed by a rheumatologist who just watched me walking down a corridor (gait is a clue). If you take a look at this link, it may be helpful: www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

I have lots of medical conditions apart from Ehlers, and some are rare and not easily identified like Freiberg disease. I have had a bit of a battle to get the right tests, but at nearly 50 my body is broken from poor clinical management in previous decades. I have lost count of all the fractures I have in my skeleton. If you can afford it, see a private specialist to exclude any suspected diagnoses. My daughter has ASD, auditory processing disorder and severe dyspraxia. The school were rather dismissive of the possibility of anything being wrong apart from mental health issues. However, once I got her into the right NHS and private clinics, it really helped with onward management.

Had this with my DD for 14 years. She was an undiagnosed breech V delivery. She is able to turn her legs right the way round with ease. She had pain and falling over her own feet. Been back a forth to various doctors, physio and about 100 different people and told come back when she is older. Finally saw a consultant that said she will never heal as her hips aren’t in socket or aligned. Just had the first major surgery on one leg. Thigh bone cut and pinned, hip in socket with months of recovery and now have the joy of going through it all on other leg. Point of my story (tangent) is trust you instincts, be ready to have to go to battle but you can get the right help it’s just sometimes long coming.

[quote Solongsugar]@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.[/quote]
OP you never answered my question whether you got print out of your daughter's test results. You just listed the supplements she took.

If you haven't then get them as you should not presume that they are normal.

I had severe vitamin D deficiency and when I was getting my levels up one GP I saw said they were "normal" when they tested me. I got a print out and they were below. I wasn't surprised as I was still in pain. (Like a PP myself and lots of people I know have to take higher doses to maintain our levels.)

Also when your daughter was tested for vitamin D and iron, what reason did the doctor give to test her for them? As this may give a clue to what is wrong with her.

Has your daughter had blood tests for vitamin D and iron this year? If not she needs them as with lockdown she would have needed to take a higher vitamin D supplement unless she is a sunbather. If the GP refuses to do them as she doesn't fit the clinical criteria, then you can arrange direct private tests yourself.

Where could I get a private b12 test please ,@calledyoulastnightfromglasgow

Osteopathy is absolutely pseudoscience, much like homeopathy but more dangerous since the physical manipulations they attempt can cause actual physical injuries where none existed before. Please keep advocating for your daughter with actual medical professionals but don't listen to the deluded souls here who are suggesting osteopaths.

Where could I get a private b12 test please?

OP, your GP surgery will do this. There is no need to go private.

OP - Thriva do an excellent fingerprint test.

You need to consider why iron is chronically low. There is a reason for this and this is your way ahead.

As well as double checking with another consultant too.

You are right to take the magnesium - it helps with absorbing vitamin D

Sorry @RedMarauder, she was 9/10 when referred to orthopedics due to general aches pains then. She has slight twisted thigh bone but this doesn't effect her at the moment and they never discussed this today. At that time he did blood test as low d causes aching . She had slight deviciency dispite a daily 2 mile walk to school, loads of sunlight, good diet. She also had low iron before she even started periods and so I've kept on top of yearly at least to check. She was slightly low back in April, just told to give d3 which I do, the spray one for better absorbency(I think)

YANBU and I think taking your daughter to a good osteopath is the way to go... particularly if you have private health care?

No you are not. For years in my late teens, early 20s I kept going to the GP because I was exhausted and in pain and the GP actually told me it was just modern day life. It turns out I have arthritis but it took 10 years for a doctor to actually listen to what I was saying. Keep fighting.

It sounds as if the message isn’t that there is no problem. It’s that there is no problem they can identify in order to provide a treatment. Or they might identify something but there is no treatment.

If she’s been achy and tired for 7 years that may well be her reality given the limitations of medical knowledge. Sounds like there are many similar family problems, all without effective treatments. So labelling a child with a chronic condition that can’t be treated isn’t very helpful for her.

Ask for a second opinion via PALs if needed, there won’t be a mark against you for this. From what you say possibly the iron and vit D deficiencies need more consideration rather than EDS. Sounds like pain management would also be helpful if there is such a service in your area, you don’t always need a diagnosis for this.

A Beighton Scale score of 3 at 13 is ‘normal‘ and EDS will not be considered with this score even if you go privately. It is a quick assessment/screen. Some joint laxity in younger children is quite normal so not unusual for score/presentation to change as we get older.

Ehlers Danlos syndrome is not actually that rare. One good estimate of diagnosed cases puts the prevalence at about 1 in 500.

bmjopen.bmj.com/content/9/11/e031365

If you assume a lot of cases are not diagnosed then the prevalence would be a lot higher than this.

I certainly know people who definitely seem to fit the diagnoses (e.g. really stretchy skin and joint problems) but have never been diagnosed because they've never complained to a doctor about these symptoms!

You are quite wrong, Osteopathy is a very useful and recognised profession. In earlier days it was viewed with scepticism but not for a long time. It cannot be compared to homeopathy. Many medical doctors refer patients to osteopaths who often achieve better results than a physiotherapist, depending on the problem.

www.osteopathy.org.uk/training-and-registering/becoming-an-osteopath/