Community Pediatrician?

[Amieesmum]

How long does it normally take for them to sort things out? DD is 7 in two weeks, we have so far, had millions of appointments with just about everyone you can think of, except the community pediatrician, whom we have had one session, the last week of April. (after being informed we had been referred years ago, but the referral had got lost.

Since then, it all seems to boil down to what he does, he says he wants DD to go to see a specialist about 200 miles away, fine if that will help. Tests tests and more tests too. The thing is, despite several phone calls to the office, and them telling us they are 6 weeks behind on paperwork, we've heard nothing back from him about when these tests will take place, when we need to see him again. I know these things take time but it's been a good few months now.

How often do you guys see the community pead? How long does it normally take to get tests done? We're waiting to find out if he can use a previous sample of blood for further genetic tests, and using the heel prick test sample of blood to test for something. He's outlined what he thinks she has got, but we need a specialist test to confirm, and then to see the specialist that deals with said condition.
He also specified he wanted to send me for a hearing test - but so far nada!

Anyone?

Bumping this for you :)
We saw the com paed when DS was in reception at school. Initially all looked good - she quickly referred to CAMHS and OT. However, after we had seen CAMHS 3 times and they had just said, yep, def something going on here, need to refer to psychiatrist in CAMHS, the comm paed decided DS just had school anxiety and de-referred us from CAMHS.

3 years later, after moving areas and getting direct referral to CAMHS DS got a severe AS dx within a few months.

Guess it depends on the comm paed - but ours was way out their depth. Decided DS didn't have autism as he could recognise :) was a 'happy' face and :( was a sad face.

Comm paed saw us just after diagnosis, when DS was approx 6 months and carried out a Griffith's test. Went back again at 13 months to do the 12 month assessment. Will go back again in approx 9 months. I think it depends on how concerned/happy they are with you as to how often they see you.

We got referred to a specialist so we see them a lot more than comm paed.

Re genetic testing it took approx 5 weeks for first blood results then another couple of months for final results and genetic counselling appointment.

Hope this helps
x

have you got a follow-up appt booked? usually you won't hear directly from the comm paed (unless for report of assessment) but will just get appts through directly from the other agencies that you have been referred to. so if you know who you have been referred to, call the booking/ sec for that dept/ specialist and ask if they have received the referral and how long the waiting list is. if they haven't received the referral yet, get back to the paed's sec and ask if it has been done. they do go astray...

we saw comm paed every couple of months as a newborn, then it went to 4 mothly, 6 monthly, and then at around 5 it went to annually.

the comm paed really is a sounding board for us - and a referral resource. (dd2 has cp). the first cons comm paed we had was totally brilliant, and very hands-on. he was also happy to admit that the main work would be done by therapists various, who would then report back to him and he would co-ordinate. after moving we were on the books of a completely different comm paed who wrote me a lovely letter which proved she knew absolutely nothing about cerebral palsy (in fact i contacted scope about it) and so we decided she would be a referral resource and not a sounding board at all.

usually, the older the child, the less they are seen (barring new developments or concerns) and if you do need additional contact, you just call the sec and ask for the next avail appointment, or a cancellation appt depending on urgency.

calling the paed's sec in tears means they usually try to be helpful...

waiting lists are so frustrating. and it's def not unusual to wait months and months before a report hits the mailbox. i'm still waiting for a letter from speech from an appt at the beginning of april. oh, and ot.

I think i'm going to have to fill you in a on a bit more back ground - DD is deaf, they're still not sure why and arguing about who should be doing the tests, was bloody years before she even got hearing aids from initial diagnosis.
She also has a problem with her balance & motorskills, struggling with walking, getting dressed etc.
We had a broad spectrum genetics test under the consultant pead, which didn't pull anything up, but the com pead thinks she has something called connexin 26 so hence re-testing
She also has a problem where her heart stops beating every so often & she collapses (usually when stressed) and she has fits (when unwell but without a temperature)
The pead was meant to be writing a report to the school, GP & all other specialists involved - not happened yet
Also meant to be having a repeat MRI scan as they didn't check the bits they were meant to last time.
I can't help feeling sometimes DD is being failed due to the sheer time it takes to get anything sorted out up here, We've been seeing the consultant pead for a year first appointment took 18 months from original referral
I know these things take time to organize, but every time i call to com pead's sectary she just tells me they are behind on paper work - or the pead is dealing with child protection that week, so will get back to me the following week (never happens)
It's all so sodding fustrating!

Similar experiences with comm. paed as you amieesmum - completely different tests/dx . It has been nearly a year since we last saw her, although i did have to play telephone tag with her secretary to get another referral for a different consultant.
From what i understand in our pct, the community paed is more of a co-ordinator for on going care, and whilst other specialists get involved, they back off and don't get involved until you come to an impasse and nothing is happening.

you need the specialist then. so get on the phone to the consultant's secretary and ask if the referral has been made and what the waiting list is.

just use the comm paed as a referral route. it's a pita if they're supposed to be writing to school etc, but one way to jolly it all along is to apply for stat assessment if you haven't already. that way the paed gets a certain amount of time to respond to the lea.

speak to the neuro/ sec ref mri?

mostly you end up doing it yourself tbh. it's not great, but either they see the kids and are tardy with the admin, or they don't see as many kids and the waiting list grows. usually the referrals are processed reasonably quickly ime. it's just the wait to get to the top of the list and get an appointment that's longer. reports always take forever and a day.

your lea should have a specialist teacher advisor though, who ought to be able to advise school on dd's particular requirements and support needs. i'm assuming this is in place, even if the official reports are not?

My experience of the community paed has been appalling - total misdiagnosis. Our consultant paed was able to diagnose easily and my son has then remained hin his care.

Is there anyway your daughter can be treated under a hospital based consultant? Whatever route keep everything in writing, if you phone to chase appointments then follow up in writing and confirm timescales agreed.

No, the consultant paed was baffeled by her condition, and referred us to to com paed. I have just received (finally) after three years of waiting our letter from SALT to say she's on the waiting list, appointment will be approx 16 weeks.

Have phoned Com paeds secretary today & she's off until Monday and the computer system is down (as always).

He does seem to know what he's doing, and was very thorough with DD, it's just the waiting times for referrals, tests and appointments that's driving me potty! Was hoping to have his letter by now to pass on to Junior school's SENCO for next year when she starts.