To want a consultant to see my DS for clicky hip at least once during treatment?(11 Posts)
My son was diagnosed with clicky hip (left hip) at birth, and had now been in a harness for 7 weeks.
We haven't had another ultrasound or seen the consultant since the pavlik harness was fitted. I go to hospital every week, but it's just a nurse who sees it just to adjust harness for growth,never reviews progress. I asked last week and she thought he wouldn't need reviewing until 12 weeks.
I'm not sure I really trust her... She thinks Arthur (his name) shortens to Alf. She is very friendly but gives lots of old advice 'I wouldn't take you're baby swimming before one, you have to be careful of the chemicals'.
One week I saw a nurse who had just been told to measure baby but didn't know anything about the condition, she admitted she hadn't used one of the harnesses before so I had to show her how to put it on.
From what I can see online, most people seem to have regular ultrasounds and consultations during treatment to check whether progress has been made. Would I be right to insist on seeing consultant before 12 week 'end point' or should I trust the nurse knows best?
Realise it's stretching the definition of AIBU just hoping with the traffic someone may have an opinion/experience.
It does seem that although the way DDH is treated (harness first if young enough) is fairly standard who manages the harness varies.
I don't think ywbu to question how they know the harness is working - you need to be examined clinically and an u/s to be sure. Where we are they are reviewed weekly or fortnightly by a consultant (his preference) because as I'm sure you know there are risks (albeit extremely rare) being in the harness. The harness is removed early if no improvement is seen to move onto the next stage of treatment.
I think YABU, sorry.
I've had one on harness, and my other monitors for DDH.(family history).
I had types out a long reply but the just of it was this, in an area where Consultant Paediatric Orthopaedic surgeons are scarce (e.g. Ireland, where I was) ultrasounds in cases such of your's and mine are not the most effective use of their time.
Hope the little guy get 'Released' at twelve weeks. I know it is hard to see them strapped up like that.
Apologies for all the typo's hopefully you can make sense of it!
YADNBU. My DD was in a pavlik harness from 6 weeks to 8 months old and we had to travel 2 hrs to the hospital (not our local hospital) clicky hip clinic every week for those 6 months. She was then seen by two consultants every week. One to examine her and tell the nurse how much to adjust the harness and another who performed the ultrasound scan every week.
The hospital clinic was very busy and from talking to the other parents in the waiting room this was the routine care for every patient every week.
At one point we rang the clinic to try to change an appt (as it was almost christmas eve and there was lots of snow!) and we were told in the nicest way possible that not attending could be very detrimental to the treatment plan and parents who missed more than one appt could be reported to SS!
The treatment was successful and DD is now 20 mo and doing very well.
Is it possible for you to change hospitals OP? PM me if you want any advice I know pavlik treatment can be hard going for parents aswell as DC's.
You have to push and push. The less severe the issue is, the less time they'll spend with your son. I've just had the devil of a time getting anyone to acknowledge that my daughters spine is out of alignment and her pencil grip is terrible (she's 7). Can you call the consultant or his secretary and ask for an appointment? I'd be worried that its not being monitored.
wouldn't be concerned about not seeing a consultant really- my daughter had ddh and was totally managed by the nurse specialists as was early pick up and expected to be treated by a harness. Is it a big hospital? seems to be the larger hospitals have a nurse lead service for harnesses and doctors get involved in cases requiring operations. Nurse led services are usually good as they tend to do everything by the book and try to remain within their competency.
That said my daughter was reviewed at least every 3 weeks with an uss to ensure pavlik working- however my daughter had a bilateral dislocation and I think a lot of the uss was to ensure the femoral head was staying in place and the hip joint was deepening. Am unsure of your full diagnosis but if he has a subluxing hip ( ie not dislocated just a shallower hip joint) it is possible that they do not need to repeat uss . I don't know but would definitely discuss with them about this.
Thanks for the responses. I've got an appointment ( with a nurse...) on Wednesday so ill ask for process for review and ask again to see the consultant. It's mild DDH which is why he probably isn't a priority (except for me!) but nurses don't do anything other than slight adjustments. I'd like reassurance that (a) harness is working and (b) we are still looking at taking it off at 12 weeks with problem fixed.
There is no hip problems in family but he was back to back in womb, maybe that was partially the issue.
I can understand your concerns if you have had to show a nurse how the harness fits. When DD was treated no one other than the dedicated nurse-practitioner was allowed to adjust or remove it at all.
For the routine measurements the HVs just waited until she was discharged.
DD wore her harness from 6 weeks to around 18 weeks old. As far as I remember they did an ultrasound to assess progress after she'd been in it 10 weeks. But we only got the appointment by letter about 2 weeks beforehand.
We then got a second consultant appointment where he checked the scan for progress & recommended DD kept the harness on for a further 2 weeks to be absolutely sure it had worked.
We didn't have to see him again before it was removed.
YANBU at all to be concerned. I remember how stressful it was to realise DD needed treatment, and in terms of my hormones everything seemed like a really big deal. I think if you have any questions or areas of uncertainty you should definitely chase it up.
(Coincidentally we've just had an appointment for her follow up at age 2+. I'd completely forgotten it was due.)
Just to update...
Had the follow up ultrasound last week (I had to request this). The results showed all bones normal (brilliant!)
I did have an appointment with the consultant today. However when I got there I was seen by a locum doctor as consultant was too busy. He advised that as the scan was normal my son can be taken out of the harness (been in for 11 weeks). I asked whether it was going to be checked whether he still had a clicky hip. My son was down to his nappy at the request of the nurse in preparation for it being checked.
Doctor said there was no point in checking as the scan was normal. I advised that the scan at birth had also shown to be normal, it was jut that it dislocated. He went to check with the consultant, and came back to say no, hip doesn't need rechecking he's fine now.
Am I being PFB to think that if he was shown to have clicky hips at birth and this has not been checked at all since, the doctor could have at least spent 30 seconds double checking rather than saying 'it should be fine'??
I've now not got another appointment until 3 months time. Just think it was a really lazy service to stick a baby in a harness for three months with no checks in the interim and not actually checking that it had definitely done the job on completion.
Also do most babies get rechecked for clicky hip at the 6-8 week check? My son wasn't as he was in his harness so doctor just ticked the 'receiving treatment' column of the form.
Think ill make appointment with GP to double check hip (on the guise of him missing it at the 6-8 week checkup)as I don't trust the consultant who doesn't appear to care much.
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