Does anyone have any experience with GOSH?

[bambiandthumper]

DD1 has her first appointment with GOSH on Thursday, and I am completely clueless!

Last year (July), she was hospitalised for Hemolytic- Uremic Syndrome with renal failure. She spent 5 weeks in hospital on dialysis, but bounced back, and on our appointment in November '09 had 60% function in her now 'bad' kidney and 70% in her 'good' one.

Our lovely doctor referred her at the beginning of November after what was supposed to be her 'final' follow up check. Her GFR test was in Stage 3/5, which meant a moderate reduction in kidney function. :( Her ultrasound also showed her kidneys as significantly smaller than they should be.

Instead of her kidney function improving, as we had assumed was happening, it is now 35% in her bad kidney and 45% in her good one. We are hoping to find out if it is her 'bad' kidney that is damaging the 'good' one, or they are both getting more damaged progessivley.

Our admissions letter says that she is going to be admitted in the morning for another GFR test, and then later that afternoon we are going to outpatients to see her consultant, so I guess we will be spending the day there. Our current doctor also said they often like to 'start from scratch', so I imagine they also might give her another ultra sound ect...

If anyone has actually made it to the bottom of this, thank you :), and any experiences of both the wards and/or outpatients would be much appreciated!!
Oh and other than things to keep her occupied, is there anything your recommend we take?

[HarlotOTara]

My DD has been going to GOSH for outpatient appointments for years - and once was on a ward for a scan. I have found it great, very child friendly as you would expect. DD was given a toy when she was on the ward after her scan. There are usually toys and drawing stuff to keep little ones amused - my DD is 13 now so old enough to wait without being too stroppy. However we don't usually wait too long for our appointments. Good luck and hope it goes well with your DD. If you come by car (we used to when she was young) you can get a ticket at reception to park in the square near the hospital.

[ajandjjmum]

We've also been at GOSH for years, and have found them to be great - although waiting times can be extended at times.

We're actually there on Thursday too - we tend to combine a trip there with a treat in London, although now DS is older, it's fun things for me too - like a trip to the sales.


Hope there able to help your DD.

[ajandjjmum]

they're

[bambiandthumper]

Thank you all for that reassurance, I too have only heard positive things, but its quite different when you child is actually going!

I've just had a look on there website and it looks like DD will be going to Kingfisher ward, anyone been there?

She is only 3 so I don't think I will tell her about it until the actual day, but I might bring a dvd player with me, as her last GFR test took around 6 hours, or are there lots of things to play with on the ward?

About food, is the hospital canteen ok, or should it really be avoided?

ajandjjmum- We actually live in London, but a good idea about combining the visit with a treat. :)

[bambiandthumper]

I thought that pixie, but last time she was admitted straight from A+E, so I had little time to dwell on the practicalities. All our other appointments have been in our local hospital, so she is familiar with everything, and quite happy with the nurses.

I will definitely take snacks and her muzzly.

I'm not entirely sure what results we are hoping for, she isn't on any medication at the moment, so hopefully there is something that can sort out, or at least put a stop to her declining kidney function.

At one point they were talking about transplant in the future, but her current doctor said if it is the one kidney that is causing the problems, its removal could sort it all out, but I guess we will have to wait and see. I just feel so bad because she wasn't seen in a year, and even now she seem's so well. I know there is no way I could have known but I still feel like such a bad mummy. :(

[bambiandthumper]

Thanks pixie, that information booklet is very useful!

Luckily she has had the main test before, but I think its just the unknown which is scaring me. Knowing her she will just breeze straight through, hopefully remaining relatively oblivious.

Thats good about the nurses, we found the children's ward at Chelsea and Westminster very understaffed, and though those who worked there were lovely, they just didn't have the time.

Have you just used the outpatients with your DD2? I take it you a regular!

:o

[bambiandthumper]

Pixie, I had no idea how ill she was :( Did she stay have to stay in for Christmas, or where you able to kidnap her for the day:o?
At least she is local to you, and I image a Children's hospital is much better equipped than just a Children's ward. We sometimes experienced a shortage of child size needles ect.. which was very frustrating, though otherwise the care we received was faultless.

You are right about their ,but its actually the blood tests I find the worst as opposed to the scans. Luckily she hasn't of yet had to have an operation, but I know that will reduce me to floods.

The only problem I know we'll have is DD's lack of ability to sit still!

Of course i'll let you know what's happening, you have been of so much help to my sister and I these last few days

[bambiandthumper]

woops!! their unflappability

[oddgirl]

Really hope all goes well-know GOS well-very child centred in all departments like physios/x-rays etc...play people that can really help with blood test trauma etc. The canteen is fine but there is also a costa coffee and the Peter Pan cafe for snacks. Fantastic cafe called Sids on Lambs Conduit Street round the corner...cheap and cheerful but rammed with hospital staff!!Parking a bit of a hassle so if you can avoid driving I would...Kingfisher ward fab as are the renal unit.
Keep us updated..really hope it goes well!

[Sam100]

We have been going there for years too but different department - you can end up waiting around a lot if you have to see a few different people. But there is usually lots of toys, colouring and sometimes play assistants around to occupy the kids.

Food is ok - normal hospital canteen food. If you want something a bit different there is a lovely italian around the corner on lambs conduit street called ciao bella. They are good with kids too.

There is also a lovely little park about 5 mins walk away from the hospital called coram's fields which has lots of stuff for a 3 year old to play on link here.

We usually go on train/tube but occasionally drive and park in a car park on herbrand street - ok if you are going to be there for just a couple of hours but probably a bit expensive if there all day.

Good luck - hope all goes ok. They are a fab hospital.

[bambiandthumper]

Thanks for the heads up about food everyone. At the last GFR test we were allowed to leave the ward, but not the hospital, and even then it wasn't long as they had to do regular checks, so I imagine it will be the same. It would be nice though to get out for a quick bite to eat if we can though, I think we both find hospitals quite claustrophobic.

We are going to get the tube or taxi, probably depends if DD is in 'difficult' mood, but I see from the map the station is very close.

I saw one of the GOSH documentaries on BBC in the summer and it seemed lovely, but I found it very emotional. Please reassure me that was just the editing, or is it really like that? Practically all the children in DD's ward had fairly standard, though obviously difficult, issues like tonsilectomies and appendicitis, but i'm not sure how she (and I) would cope with seeing such severely disabled and ill children. At the moment she is especially inquisitive , and I really don't want to cause anyone any embarrassment.

[Lynli]

I take DGD to GOSH regularly, she had many tests as she had a mid line brain defect, she is blind in one eye as no optic nerve, but appears perfectly normal.

She has been put on a list of unique DCs as her brain is different to anyone else, but it seems to affect her very little.

I have seen very sick or disabled children at the hospital, it certainly changed my perspective of DGD's problems, but there are many other children who look perfectly well.

It is a wonderful hospital, I would say the biggest plus is the amount of time they spend explaining things to you, and answering every question you can think of. We write lists before we go, we also have someone to phone for advice in between visits aobut diet as DGD has many allergies.

Good luck with your visit.

[bambiandthumper]

That is a great idea about the list, I will definitely take one as I know always forget something !

[bambiandthumper]

I know your right Pixie and Lynli, but I hadn't really thought much about it with all the Christmas preparation, but now thats over I am terrified.

The rational part of me knows that knowing what exactly is wrong with DD's kidneys is essential if I want her better. Its almost like if I don't know the facts of anything I can pretend its not there, and the illusion of the perfectly healthy DD in front of me is true.

I also feel completely idiotic for worrying so much, when all i'm really worrying about are the 'what if's?'.

Our problems could be so, so much worse.

[bambiandthumper]

No no pixie of course I know that, its just DH is with his parents tonight so i've managed to get myself into flap.

All will be better in the morning :o

[bambiandthumper]

thanks pixie! :)

[mattellie]

'I know there is no way I could have known but I still feel like such a bad mummy'

Just wanted to pick on this earlier comment of yours, Bambi. DH is in (slow) kidney failure which was picked up during a routine exam for something completely different. He asked the consultant when his kidney problems would have been spotted otherwise and was told 'probably in the morgue'. He finds this quite amusing as he has a black sense of humour, but the point his doctor was making was that renal problems can be virtually impossible to spot in the normal course of events. My 2 both have chronic medical conditions so I can sympathise, but you can't blame yourself for these things.

Best of luck at GOSH on Thursday, we'll be thinking of you.