DD2 hasn't been assigned a paediatrician, should I be doing something about this?

[PurpleLostPrincess]

Helloooo! Fio pointed me in this direction (waves!) so hello to everybody. I'm not new to mn but new to the sn section. DD2 was born without an anus and with a heart condition, so far she has had three operations: a colostomy at 3 days old, a pda ligation (heart surgery) at 9 weeks old and an anoplasty (reconstruction of a bottom hole) at 14 weeks. She is now 17 weeks or four months old and has one more operation to go in February to have the colostomy reversed. At the moment the hardest thing is 'expanding' her new hole every day

Anyway, all of these have been done in Southampton hospital, the best hospital in the world imo; whereas we live in Basingstoke. Each time we've been in, they have asked me if DD2 has a paediatrician in B'stoke to which I have responded no and they have commented that we should have one. So far I haven't heard from anybody in B'stoke and we have nothing to do with the hosp here (not too bothered as they didn't notice she didn't have an anus to start with but thats another story!).

So, should I wait to hear from my local hosp or do I call somebody to set something up? Our GP is the only medical person in our town who knows about DD2 apart from her health visitor...

Thanks in advance - I'm off to bed now so I'll check in tomorrow to see if anybody has any wisdom on the subject.

PLP xxx

Bump xx

Does your GP or Southampton have to refer her?

Thats what I'm not sure of... I thought Southampton were going to refer her but I haven't heard anything from anybody. Her consultants have been fabulous so its not a dire need or anything but I'm conscious we may need one contact on a longterm basis.

Are you after a general dr who you see with your DD, who knows your DD's health history, and who can coordinate her needs with all the specialists?

I don't know if such a person really exists, at least where we are.

DS2 has complex needs as well, and he has seen more doctors in his short life than I have in mine (GP, audiologist, neurologist, endocrinologist, ENT surgeon, urologist, neurophysiologist, plus all the therapists). We are still trying to get to the bottom for a name for his condition, but he doesn't have someone to coordinate all the visits - it seems like he has seen so many specialists, but noone has really put everything all together.

I am not sure who you need to "ask" to find out if such a person exists, but wanted to say that DS2 doesn't have someone like that either (although one or two GPs at our local NHS practice have been pretty good, but there are times when all I want to see is just a GP, who doesn't necessarily know all that we have been going through - when we need a prescription for instance).

All the best to you and your DD,

PLP - hi - haven't 'seen' you for a while. Glad the reconstruction went OK - though the expanding sounds difficult.

I would ask you GP to refer you to a paed locally - ask who he will be referring to and tell give the name to Southampton. They can then send copies of the surgeries they've done to him. You could be referred to a paed at Southampton if you prefer but you would have to travel obviously and I'm not good on geography so don't know how far that is. Or there maybe a Soton paed who does outreach at Basingstoke?

The main benefit in having a local paed is if you get admitted to your local for any reason then they're be a decent set of records for them to refer to. Also if dd is having any developmental problems they can co-ordinate services locally to help; physio district nurse, whatever.

We still have a local paed and ortho too but see cardio further afield. We don't see the paed regularly anymore under normal circumstances - unless dd is admitted, but he's there if I need him.

I suppose a lot depends what sort of paediatrian you want. For example when my son was baby he saw a paediatrian twice who specialised in babies. This paediatrian mainly dealt with growth problems. My son was discharged very quickly because he had no growth issues.

Later on he was under a different paediatrian at the local child development centre because he had developmental problems. The paediatrian did the developmental reviews instead of the health visitor. She arranged things like physio, orthorics SLT, OT, audiology as needed.

These two paediatrians were about as different as chalk and cheese. Unless you have a specific reason for seeing a paediatrian how do you know which type of paediatrian you want to see?

If you have concerns about weight or development then I suggest you ask your GP for refer to to the paediatrian he/she thinks is best.

Hi,my dd4 has also had cardic surgery at Southampton. We have a paed at our local hospital (Poole),but I think that was all sorted for us . Most clinics we go to are with her and then we see dd's cardiologist locally too.

If Southampton think DD2 should have a paed, they should refer her, as there will be several, and they should know which is the best experienced to deal with your situation.

if they are planning to keep DD on longer term its probably less neccessary, unless there is a likelyhood of some other probs like developmental delay, in which case your GP could do it.

Good luck - sounds like youve been through a lot.

My DD2 had her heart surgery at Southampton too. It's fab there isn't it?

It sounds like Southampton are anticipating future need for a paed (even if no need now as Soton are doing everything) so might be worth asking them to do the referral.

We have 2 paeds here, 1 general community paed who co-ordinates all her care (eg Portage, nursery, statementing, physio, OT, podiatry, cardio, opthalmology, ENT, SALT, etc etc!) and 1 who is an endocrinology specialist and co-ordinates her drug treatment.

It may be that all areas are set up differently but ds is under the local community paed who keeps an eye on his development & refers & co-ordinates with specialists & therapists.
She only took over his care once he was discharged from the hospital paed (once medically they said they didn't need to see him)

Thanks guys for your responses (and helloooo Saggar!!).

So far, she has been under two different consultants but she doesn't really need to see the cardiac consultant any more as they have fixed her (yay!). Isn't ocean ward just the best by the way!

Anyway, the jury is still out as to whether she has a 'syndrome' or not - when babies are born without a hole to poo out of; they check the kidneys, the heart, and other stuff in the chromosomes, I think its called the VACTERL. So far, she has only had the heart problem and the bottom problem, everything else seems fine. So, she is under the consultant for her bowel problem but I don't know if there's anybody else keeping an eye on the rest of it all.

I think I might check with my nursery nurse tomorrow as she is coming to weigh DD2 and she might know how things work specifically with our local medical care. Its all a bit confusing for me lol!

Thank you again, PLP xxx

hi PLP - can you email me offlist [email protected]

I am in Hook and my friends son has had a similar procedure last year and i am sure she will be able to help you

Sharon x

Thank you sooooo much sharonkitten - have emailed you

Hello fio and saggars!

Saw the nursery nurse today for a weigh-in (last one at home I think) and she said I may need the GP to refer DD2 so will get onto that on Thursday when she has her immunisations (the first one that has been put off because of all the operations! ).

Thank you again all for your replies - I can't tell you how reassuring it feels to know that there are others out there who have been through stuff and know how it feels.

mm22bys - hope you find out a name for DS2's condition soon, sounds like you've had quite an adventure there xxhugsxx

theslownorris and sidge - we're off to E1 next week for a check up and I'm really looking forward to it which shows how brilliant the ward is . Were you in recently?

PLP xxx

Hello again - we were there ages ago, in August 2004. It was lovely then, and I bet it's still good

PLP-I agree about E1,I found it quite a shock when we had to go to a "normal" children's ward. We haven't been to Southampton since April '07 when she had a cardiac catheter. I know Ocean Ward far too well,dd4 spent most of her first year in hospital. Say hello from me ,dd's initials are SE and she has 3 sisters,two of which are twins. They should know who we are from that .

Forgot to add,we have only just caught up with immunisations and she is nearly 2!

PLP - I havent received any email from you? you can also try sharons @ bestbear.co.uk (remove the spaces) to get hold of me

xx

I know this thread is finished now but I just wanted to say a big thank you to sharonkitten for putting me in touch with your friend - isn't mumsnet just the best!