ok, what do you think about this attitude in doctor i saw, it relates to my thread about my daughter's hip problem.

[piratecat]

Ok this is long, but it relates to my thread here
where my child has had hip pain for 2 weeks

Baically, dd has on and off pain in her hypermobile hip, which has got worse. But this is the conversation i had today with another doctor in the hospital.
To recap, i saw 3 gp's the first week, went into A+E on two occasions the pain was so bad, and she was admitted for 5 days.
We got home saturday, as the pain had gone. Then 24 hrs later it was back, so i went in with her yesterday. We came home last night, only to go back in again this morning to see this doctor, as told to do so. We are shattered, as it's not a close hospital by any means! i just need to rant, and get maybe some more expereinces of yours. Just need support or whatever. i am considering asking for a refferal to another hosp tbh, if the pain gets worse or doen't seem to be going. thankyou in advance. x

oh my fucking god.

We saw a doctor, who was very very scathing, and very uncommunicative with me. She thought she was totally IT.

her, we can't find anything wrong.
She got up on the bed ok.

me, well, what about some physio to help whatever is causing this.

her
I thought she was having physio onthe ward when she was in last week.

me-no noone has mentioned any physion, where do yuo get that from, is it in her notes, should she have been/

her, no i just thougth she was, would you like me to refer her for some.

me-I DONT KNOW, here we go again, you are all asking me what to do. This is ridiculous. What about seeing a rheumatologist, i know someone whose children have hypermobility syndrome, and whilst they are at the other end of the pain scale, maybe thats the way to go?

her-Oh, i don't know about that, but i don't think it wil help in this instance, but i will refer herif you want.

me-what about a chiropractor or osteopathy?

her- none of that is medically proven to help, it makes no difference and most of them are money grabbers. All alternative stuff like that is not proven to help.

me- I cannot belive you are saying this, you are really telling me as a mother , that you advise me not to go down that route. is that what you belive or all alopathic drs belive,

her--it's not proven.

me -what about accupuncture?

her-oh someof that has been shown to give relief.

me-- OH GOOD becuase my gp reffered mw to my local physio dept where i recieved some accupuncture sopme yrs ago.

her-I also thik she should come off the pain killers, unless there is the big pain hit.

me, so why did the doc last night tell me to keep givning them to her regularly.

her -- it's not good she is building up resistence. (to whic i could kinda see)

me-so thats it then, no more can be done.

her -maybe you shudl consider taking her back to a counsellor.

me--maybe i will, but she has gone thru alot of stuff with her dad, that hasn't resulted in this, so i don't agree that emotional upset is the whole cause.

I left., almost in tears. I spoke to head nurse who was really shocked she'd said all that stuff, and suggested i make a formal complaint. I said i have no energy right this minute. She said, well inmy view, if your daughter gets in that severe painagain you are to come right back in, and i said no, whats the point, they all think i am fucking mad. She said no, she needs to comein if she's in that much pain for pain management.

lets hope it goes then eh.

[fidelma]

Thats Shit.

You need to be in control.Speak your mind and be assertive.Make sure you see whoever you think you need to see.Get 2nd and 3rd oppinions.

could it be bad growing pains.I have some hypermobility and I suffered very badly from growing pains when I was young.dd1 aged 10 has grown alot since Xmas. she has been in alot of pain and had to be on painkillers.

[piratecat]

thnakyou for your respone. i am not sure i should have started another thread, as it prob adds to confusion. But i did want to talk about the actual doctor we'd seen yesterday!!

the nhs seems to be all over theplace re it's advice !

[ladylush]

Can you ask to see another doctor? Was it a consultant?

[CharlieBoo]

I agree that it's crap. Have they done scans, bloods etc? I would ask for another opinion and ask to see consultant. It isn't good enough and they seem to be wanting to gob you off. Hope you get to bottom of it.

[piratecat]

they've done all they can do they say! have had mri, xray, blood test. have seen countless docs, main consultant.

she is doing much better to day. they said they may never know what the cause was. maybe it's growing pain? but on one side? The pain was so severe, when it flares up in hosp they had to give her a type of morphine!

[OtterInaSkoda]

Without wishing to defend the doctor too much, she has a point regarding (some?) chiropractors or osteopaths - perhaps she was concerned that you might be exploited by one? [runs and hides]

[OrmRenewed]

Oh FFS! "All alternative stuff like that is not proven to help."

You don't need scientific proof that chiropractic or osteopathy helps. You just need to talk to someone who has used it and found it eased pain and mobility. Which by and large it does.

She does sound dismissive. Hope you get some answers soon

[SparkleRainbow]

Sorry if I am coming in, in the middle of your chat, but I have been watching and reading messages on Mumsnet for a long time, but your message made me join today so I could answer you.

I am not a Doctor, but I have a lot of experience with joint pain. I was diagnosed with Ehlers Danlos Hypermobile Type about 20 years ago, and my seven year old son was diagnosed when he has one. You mentioned your DD had a hypermobile hip and this was causing her great pain, which doctors do not seem to understand....been there! EDH can cause great pain in joints, and even deferred pain mid bone, some days it can be a general ache, some days it is so acute it brings you to tears. Xrays, scans and MRI's appear completely normal, in my experience even inflamation doesn't show up, but the pain in real. You need to speak to a Rheumatologist who knows of this condition, they diagnose by a checklist and differential diagnosis as there is no genetic test yet. Physio really helps, good pain management is essential, a health plan for her in school, and look on the Ehlers Danlos Support Group website, and articles written by Prof Rodney Grahame, he is the top guy in the country for this. It might not be Ehlers Danlos, but it is worth asking the question.

[cory]

More support for the hypermobility/Ehlers Danlos there from SparkleRainbow, who is thinking along the same lines as I am.
(Ehlers Danlos III or Ehlers Danlos hypermobile type is another name for hypermobility syndrome).

Intermittency is typical. And your dd is of a very typical age to be getting the hip pains, being just the age for the pre-puberty growth spurt.

Dismissive doctors is par for the course with this condition.

I think you should go to every appointment you get offered in the hope that someone will know what to do. And wherever you go, keep repeating the phrase "do you think we should see a rheumatologist". This is likely to get a more favourable reception than mentions of alternative medicine, and the advantage is that a rheum can actually diagnose. If it is HMS/Ehlers Danlos, she will need that diagnosis, not least for use in schools.

[piratecat]

hiya, Sparkle, thanks for jioning this discussion. Also thanks otter, cory (again!) and Orm.
the arsey jumped up doc from yesterday, has written in our discharge notes that she has reffered dd to physio, and to rheumatologist. I told her about what you had said Cory, and she said well i don't thik it will help, but i will refer you if you want. So i said yes do that.

Now, the Ehlers Danlos/hypermobility thing is interesting.

One of the symptoms/ponters it stretchy skin. DD doesn't have this, BUT ex dh, dd's dad had this skin thing. You could pull his skin away from his body, by about 1- 11/2inches. It was as tho the actual skin wasn't stuck to the fat underneath!! Not that he had much as he was super skinny. Could be a connection?

[cory]

Super skinny is another symptom- google marfanoid habitus and you will see what I mean. Ds is very typical: tall, very skinny, no flesh at all on his shoulders or arms, people must really think we don't feed him. Another sign can be funny scarring.

And yes it is hereditary (as mentioned on other thread), dominant trait which means that if one parent has it, there is a 50% chance they will pass it on (though child may not go on to develop fullblown condition).

[piratecat]

ex dh is tall and super skinny! dd is slim at the moment, but is only 8.

[SparkleRainbow]

Sounds like Ehlers Danlos to me, if dd's dad had the skin element, did he have any joint pain or flexibility? There are three categories types of Ehlers Danlos, one which predominantly involves skin, one which involves the vascular system and one which involves joints. It is a connective tissue disorder in which the collagen of the body is too elasticated. If you have one type it has to stay true to that type, so you can't develop another version and you can't genetically hand on another type either. You can have one joint affected, of every joint in your body, like my DS and me. You can have a skin involvement in the joint ED with scarring, stretch marks, and extra stretchiness of the skin but again you don't have to have this. My DS (7) is tall and slim, had school nurse on my back a while ago as "too thin", doctors were brill though and stopped that! Our Rheumatologist is fab, unfortunately my DS has it all over, including in his spine C2 and C3 which he has now dislocated three times. Serious risk of death or quadraplegia each time he does it so I have been where you are now pacing the hospital corridors wondering what on earth you can do next! Am so sorry you are going through this.

[piratecat]

nope, dd's dad only had the skin thing, we just used to laugh about his stretchy skin. His spine, was quite rigid at the bottom tho. Couldn't touch his toes, had little movement in his hips actually. not like dd.

so if he could only have passed on the skin thing like you said then, she doesn't have that?

[cory]

As Sparkle says, you can have very stretchy skin even with the hypermobile type; I think recent consensus is that there can be more overlap between the symptoms of the different types than was realised at first.

Neither of my dcs have ever been able to do the touch-your-toes thing, but ds can do absolutely gross things with his hips and arms. It is also possible to have short muscles at the same time as elastic joints, which can make the bendiness harder to spot: dd had both hypermobile ankles/knees and a short calf tendon, which had to be stretched through exercise (at the same time as her needing other exercises to stop stretchiness elsewhere).

[Maranello]

I have Ehlers Danlos III and suspect ds has too (he's only 2.6, not sure how to go about getting him checked out, but that's another thread!).

I second/third cory and sparklerainbow - doctors often don't understand this condition, if they've even heard of it in the first place. when i insisted on a referral to prof grahame for me (after a physio said i very obviously had ED), the GP reluctantly referred me only after i promised to cancel the appointment if i got better before it came around!

BTW i had terrible trouble with chiropractors, who frankly did more harm than good with my very unstable joints, so tread carefully there if you are thinking of trying alternative remedies. i'd say physio and a referral to a rheumatologist are definitely the way to go. your poor dd - it must be so hard for you to see her in such pain.

[SparkleRainbow]

There is definite overlap between the conditions, I have gone on to develop something called Connective Tissue Overlap disease, but as Maranello says that is a different thread! However my understanding about the genetics as Prof Grahame explained to be is that Ehlers Danlos is an autosominal dominant gene, which runs true to type. That means it only takes one parent to have the gene to hand it on, if you have the gene then you have the condition, although the extent to which you have problems or pain can vary, and it can't switch to being a different type. So if DD got this from her dad then he must have at least one hypermobile joint, and he has a skin symptom as well.

As for your DS Maranello, Prof Grahame diagnosed mine DS at 16 months, and everything he said has proven to be the case, so I would say go to your GP and ask for a referral. Knowledge is power in protecting your kids. So glad to know I am not the only Mum out there worrying about all this.

[misdee]

grrr for you.

i have 2 dd's with hypermobility, and so far they havent had much pain. but they are both very flexiable, especially in the hips. dd1 needs to see a doc as she is struggling with some pain when standing straight, especially behind her knees which bend backwards.

not the best pic but she can touch the ground with her legs straight, palms flat. but her joints over-extend.

[jcscot]

I'm another person with EDS III. I was diagnosed about four years ago by Prof Grahame and my youngest son was diagnosed only three months ago.

While I can't comment on whether or not your child has the condition, I can reiterate what others have said: it's an autosomal dominant genetic condition which means that if you have the condition you have a 50/50 chance of passing it on to your child. One statisic I was quoted was that some 10% of people are hypermobile to some extent but only 1 in 5,000 has EDS. Again, you can only pass on the variant you have.

Something is clearly wrong with your child and you need to try to push the doctors to get to the bottom of it all. A rheumatologist would certainly be able to help and, while it might not be EDS, they'd be more likely to diagnose the real problem and then treat it.

Good luck.

[AnyFucker]

referral to rheumatologist

referral to paediatric physio

give her whatever painkillers she needs (don't worry about over-dependence...if she has pain, she has pain)

rest when very acute

heat treatment prior to exercise

gentle stretching and strengthening (no weights) exercises when relatively pain-free

you may need to speak to school about not sitting still/in cramped postions for long periods of time and/or excuse her from PE when really bad (but not generally excused from PE)

if she has very mobile joints, don't let her develop any "party tricks"...permanent damage can be done to joint structures

good luck with your saga !

[piratecat]

thanks everyone, so much.

i will have to buy some printer ink. i need all the backup i can get!!

I know it may not be this syndrome, BUT all this info is invaluable.

power of mn and all that !!!

[SparkleRainbow]

Did the doctor who discharged dd give you any idea of how long a referral to rheumatlogist and physio would take? My ds has to take paracetamol and ibuprophen pretty regularly to control the pain, gp is being good monitoring this though. I think the head nurse who spoke to you is right though, it may be a hike for you, but if her pain level gets high again then you should feel able to take her straight back to hospital for pain management.

Physio helped me, and is really working for my ds it has really helped with stabilising his neck, shoulders, hips, knees and ankles and his pian level has decreased. Even if your dd doesn't have EDS, but something else it might well still help a lot.

Thinking of you

[SparkleRainbow]

Any's recommendations look spot on to me, that is everything we do for my ds, plus we have a health plan in school for his safety, pain management, letting supply teacher's know what he needs etc. What ever your ds's diagnosis, if she still has this/pain when she goes back to school a health plan is the way to go, the SENCO should be able to sort it with you, and you will know that they are watching for any problems and protecting her.

Good Luck