here we go again

[cory]

Dh took ds to the rheumatologist yesterday.

Ds's Ehlers Danlos has been deteriorating lately and our hope was that the doctor would a)refer him to rehabilitation clinic b)get in touch with school to get him aids to cut down on the pain (laptop, scribe etc)
c)be prepared to support us when we apply to secondary school, so ds can go the same one as dd- very supportive, know about the condition, adapted for disability in case he deteriorates further.

Instead, dh came back and reported that the doctor refuses to refer him, doesn't think he needs any aids and says he can go to any school. Instead he has prescribed a huge bag of painkillers. But his basic approach was that he shouldn't be in pain (he is!) and that's all that needs to be said.

His rationale is that offering ds any help would single him out and get him teased at school (but popping huge number of pills is apparently fine). He did not explain how getting him into a sympathetic school (mainstream) would single him out, it just would.

This is the same rheumatologist who saw dd years ago and told us that the main thing is that she must never be allowed to use a wheelchair as it would make her think of herself as disabled. She ended up crawling on the pavement. In the end I was carrying her to school on my back.

Dh did his best. He told the doctor that ds cannot do many normal tasks, that he comes home crying from pain, that he can't go to sleep at nights because of the pain. Also that neither he nor dd have ever been teased; that their schools simply aren't like that. He also pointed out that ds has been seen by an OT who made a number of recommendations.

But no, apparently the only thing that matters is not that ds can live without pain, nor that he can keep up at school or get out with his mates: the one and only thing that matters is that he does not look different. And that he must never ever think of himself as disabled. Because Disabled is Wrong.

SO he won't get a referral to the clinic where he might actually learn to live without painkillers. And though we will have to ask the GP about support for school application, we are worried about the effect the rheumatologist's letter will have on him- if that will put him off. And if the school get to hear of this, that's our chance of ever getting the OT's recommendations (which they have dillydallied about for 6 months) implemented.

We are already struggling with ds as he doesn't want anyone to know about his condition, so he comes home crying with pain because he's not been able to tell his mates that he can't keep up. And now he spent yesterday morning listening to a doctor who basically told him that he is right, that the most dreadful thing that can happen is if somebody finds out that he is disabled.

Sorry about long rant- but really I could cry. We've worked SO hard, for SO many years to help dd to get over her early experiences, she is still receiving counselling and the whole thing has aged me before my time. And ds is going to be much harder because secretly he agrees with the doctor, that having any kind of disability is just too dreadful to talk about. (there are other disabled children in the school, and there is absolutely nothing to suggest they get teased) And he knows dd got a hard time from the doctor and the school management, so this just isn't allowed to be happening to him. He won't talk about it, he just makes silly noises. And then he gets angry. And then he cries.

cory

Sorry to hear that you've had such a bad experience

You need to tackle this systematically.

First - this is a rhuematologist that your DS saw, not an OT or an Ed Pysch or even a Paed, all of which would be better placed to understand what difficulties your DS is facing at school.

Second - his philosophy in not stating support would just single him out is utter crap. Dark ages stuff and you should not accept it. Your DS is entitled to any anything that would improve his situation at school.

If I were you I would go back to my GP and ask for a referral to a Paediatric rheumatogolist - even if it means travelling to a specilaist centre to see one. I would not perservere with this idiot doctor who is about as much use as a chocolate teapot. Asking for a referral to another doctor is your legal right - exercise it.

I would also be asking be asking the school for an alphasmart for him use and for someone to help him. If school turns down your request then applay to the LEA for an assessment for a Statement.

You need to start getting tough with these people. You can see the depressive effect it's having on your DS so you need to get very very angry indeed that he is being expecting to struggle through school, in pain, and being denied support.

No one likes making a fuss but sometimes you just have to.

So that would be my remedy - ask for referral to specalist paeditric docyor and ask school - in writing for alphasmart and additional support. Then wait to see what happens and take it form there.

Best wishes

Thank you, WetAugust. You are right, I can't accept this.

Unfortunately, he is the paediatric rheumatology consultant at our local (large teaching) hospital, which makes it harder. There is a lesser paed rheumatologist at the same hospital, whom I have gradually won over from uncooperative to slightly more cooperative over dd, but dh tells me he called her out during this appointment and had a long conversation that dh couldn't hear- so I'm afraid he'll have talked her over too.

The people I know could and would help him are the local children's rehabilitation clinic- but I am afraid it's going to be harder to get a referral there now he's said he doesn't need it, particularly if he tells GP and other paed so and they believe him.

At least I'm glad it was dh who went and not me, so it's not just the neurotic mother stuff. And I don't have to have doubts about whether I've overinterpreted doctor's comments: what dh reported was pretty well verbatim what I remember the same doctor saying re dd 5 years ago.

That's awful!

is it worth contacting the school in person to ask about the equipment that ds could use? I ask because even though my ds has no statement his school is encouraging him to type his work rather than struggle to write it by hand.

It can't be right that the rheumatologist is allowing your ds to suffer pain just so that ds can seem like everyone else. Poor ds

Hi Cory, my dd is younger than your ds but I think we've had similar difficulties along the way to you.

I think that many doctors are still unsure how to treat children with connective tissue disorders tbh. They seem to see it as a watered down version of how adults suffer. Sometimes, I'd love them to spend just a day as dd to see what it's like to be in pain and exhausted whilst trying not to stand out too much. The effort that this all takes means that we get frequent emotional outbursts when dd is at home.

That rheumatologist is nothing short of a disgrace, speaking to your ds and dd like that. Equipment is to enable people, not to highlight their disability. You are entitled to a second opinion, or to see another specialist.

Could you speak to the SENCO at ds' school and see if they can help? They can organise assessments for equipment for your ds to be done in school without the need for approval from the rheumatologist. It would also be more appropriate for people that know your ds and see him day to day to comment on how he manages because I honestly don't think that a 10 minute appointment at the hospital isn't enough to make decisions that will affect your ds in the long term.

I'm really sorry that I can't be more helpful, but I will ask a friend of mine with older children with a CTD for advice and will post again as soon as I can.

Situation with school is as follows:

*Dh spoke to ds' teacher before the summer holidays (the moment we found out who his new teacher was going to be): she then sounded really keen to help him- has since done nothing.

*At parents' meeting before Christmas teacher said she didn't think ds needs help after all "because he is not performing less well than some of the other children"- totally ignoring the fact that ds is in pain, and that he quite probably shouldn't be at the bottom of the class as he has no actual learning difficulties (unlike some of the other children).

*OT report was delayed so school only got it about a month ago. But they have got it now.

*I have been trying since after Christmas to arrange a meeting with the school SENCO: I have supplied the office with my home telephone no, work telephone no and two email addresses- I remind them once a week: nothing.

Basically, the teacher seems to have the same attitude as the rheumatologist: as long as the problem can be swept under the carpet, it doesn't actually matter that ds is in pain and it doesn't matter if he does permanent damage to his joints through overstraining. As long as he behaves well and looks the same as everybody else, there is no problem. And ds (bless him!) will go on behaving well in public whatever happens, because that is all he knows how to do.

The rheumatologist did agree to refer him to physio, but stated quite clearly that physio will get rid of all the symptoms (he said the same of his sister and she ended up in a wheelchair).

Oops, nearly forgot. My DS (7 - nearly 8) is having huge problems with handwriting and has recently been put on School Action. He is being given a lot of support, writing slope, referral to O.T. attached to school, touch typing lessons with a view to him using a laptop as he moves into yr.4 etc.

All of this has come about with no diagnosis or statement at all (and we are 99% sure that he hasn't got a CTD like dd).

That sounds exactly like what we want for ds, deepbreath.

I hate the whole shitty attitude towards disability : telling a young child that it's something to be ashamed of, something that must never be mentioned.

Feel like sneaking up to his office and sticking up a Stonewall type poster outside his door: SOME PEOPLE ARE DISABLED- GET OVER IT!

I will try to get hold of my friend and ask what support your ds SHOULD be getting from the school, Cory.

She is great for finding out information like this. Amongst other things, she has recently fought and won transport to and from school for her dd with a CTD, and got a place at a school for her ds that was more sympathetic to his needs. I don't know how she does it.

Oh thank you so much!

We have been through a lot of fighting for dd and finally got her a place at a sympathetic secondary (on appeal), transport and basically any support she needs. But it's been a long hard slog, and I suppose I'm just quailing at the thought of having to do it again. Particularly it it's going to mean going back to see some of those people who had me down as a neurotic mum the first time round.

no useful knowledge or experience, sorry you are having to deal with someone with a dinosaur attitude. it's quite mad - in adult life it's v. rare that one has to handwrite rather than use a computer anyway (I have no physical issues but awful writing so prefer to avoid it!)

Cory - if you want a referral to the children's rehabilitation unit then ask your Gp to make one. This dickhead rheumatologist does not have a monopoly on referrals. If your GP refuses you can report the matter to the PCT and I would also enlist help of MP.

I would not be able to sit there and watch son suffer in this way. It's outrageous that your faced with this nonsense.

thanks again, ladies

yes I must get somebody else to refer

I keep having this horrible fear that the GP/paed etc will have been nobbled by this ghastly rheumatologist- but am probably just paranoid

or exhausted

or something

Have no useful info to offer,just wanted to send some supportive thoughts.

DH has degen neuro muscular condition and grew up with people around him thinking worst thing ever would be to use wheelchair, he is still working to get over that feeling and to think that independance is not I musy do it all myself, difference is ok.

Just a thought, do your kids have contact with adults with the condition... I know DH has proved useful role model to friends ds (different condition, but some similar expereinces).

Good luck, and a big raspberry to the rheumatologist!!

Sorry to hear about your dh, signandsay; it's really hard when part of your troubles are caused by the prejudices of other people.

I've always wanted to ask dcs doctor-

Out of two children with sore joints, which would you say is disabled:

the one who goes on the school trip to the zoo in a wheelchair and has a whale of a time with his mates

or the one who stays at home and pretends he hates elephants?

Again, in the classroom, which child is disabled:

the one who keeps up with his work, using a few small aids, gets good marks and contributes to discussions

or the one who is always behind and can't concentrate because of the pain?

Hi Cory, havent read all the replies so hope im not repeating. Could you ask for a second opinion?

I had a similar problem with a OT report (waited since Dec 2008 for it and when it arrived i was )

I contested the report and asked for it be withdrawn from circulation immediately. Another OT is re-assessing ds now and writing another report.

The report is about your ds, they need your consent to circulate it, if you can prove it is inaccurate, they have to withdraw it.

All this feeling 'different', doesnt this Dr think your ds already feels 'different' by not being able to join in or struggling to do what the others do.