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?

[bambiandthumper]

DH is back and is taking the afternoon off work tomorrow to come and see the consultant with DD and I. We are going to make a list tonight of what we want to discuss with him so I'm feeling far better and less panicky. :)

[ajandjjmum]

Hope your appointment went well bambi.

DS's was cancelled yesterday as the consultant has flu!

[bambiandthumper]

Thanks ajandjjmum, sorry about yours!

We spent the day there, and like pixie said they started from scratch in terms of testing. DD had the GFR which we were scheduled for, a Urine test, Ultrasound and MRI. Her lovely key nurse also had sure extra blood vials were taken at the beginning of the GFR to save her having another blood test.

We met her consultant who didn't say much as we didn't have all the results from GOSH's own tests. However, he, like everyone we me there was lovely and DH and I were able to discuss all our concerns without feeling rushed at all.

He wants her to have a biopsy of her most damaged kidney next friday , but if all goes to play this will be done as a day case.

We are seeing him again in six weeks to discuss her test results, and come up with a treatment plan, but for the moment she has given Captopril, which we will start after the biopsy. Whether she stays on this, or is given more medication depends on the results of it.

Everyone on Kingfisher was lovely, and DD had a great time playing with the play specialists. :)

[dikkertjedap]

Hi, firstly, good luck on Friday. Also, if you ever need accommodation nearby, we have used the Citadines self catering appartments in Holborn. Very close, well priced, can recommend. It would enable you all to have a weekend London afterwards and do some nice things together (science museum is brilliant as they have lots of hands on stuff for young kids in the basement) assuming she would be up for it and have enough strength to go round.

Anyway, all the best to your dd and you.

[bambiandthumper]

Thanks Pixie and dikkertjedap, luckily we live in London, but I think I will take DD out before it, and let her choose some new jammies and a teddy bear or something to take with her.

Her op is scheduled for 2, so hopefully we can go home that evening, but I'll be bringing overnight bags for the two of us just in case.

Hope you had a lovely New Year :)