Questions on GOSH

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Permalink Reply by Vicki Gilbert on February 8, 2012 at 17:44

Hi I know nothing about GOSH or Dr Shah but am very interested to read the information and options - thank the lord for forums like this :) Hopefully we'll not need to go down that route but good to know if we do. Out of interest though when DD was so poorly (she went undiagnosed for ages with coeliac disease) in desperation we paid for private referral to a Paed and once diagnosed we were referred back to the relevant people at the Liver and GI Unit at the local hospital (huge teaching hospital) TBH I was much happier with this as they were all clued up and the Dieticians etc were there. Main reason as they weren't insured at BUPA hosp to biopsy child under 3 but  it was better cos despite diagnosing her by chance (raft of blood tests) Paed was pretty clueless. 

Very sad to hear your daughter was laughed at I sadly had a lot of that type of stuff when DD was poorly :( idiots some of them. Re omeprazole I think average is about 2 weeks but if I remember rightly really helped within the week.

Good luck to you all x

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Permalink Reply by Sara B on February 7, 2012 at 21:52

Useful info about not being able to see the consultant on the NHS and privately Sarah. Dr shah did mention to me that he has a colleague in Warwick who is excellent for NHS work. I am trying to unpick a ridiculously complicated situation round getting an NHS Referral to GOSH so that my GP can prescribe the drugs my children need on the NHS. at the moment she can't because of prescribing guidelines from the local PCT. It is a crazy situation as the drugs aren't expensive, but we seem to have a mightly mess happening. I am at a point where I feel the relationship with my local peads is very much broken, so need to find a different local pead who is happy to work closely with Shah. I may even end up trying to get a nhs referral to the other sarah's as she is not a million miles away.
Best wishesX

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Permalink Reply by Verity on February 8, 2012 at 18:09

It's all stressful tryIng to fight for your poorly child. Hope they all improve pronto. We saw his gp today and she finally said his allergies and food problems are too complex and finally referred us to a alllergy specialist paed at a hospital 1/2 hour away from us, the appt is on 13th of march so not too long to wait. We will discuss his allergies and gastro problems with them and see where to go from there. If we still aren't happy then it'll have to be gosh but at least we will have paeds etc down here to help too.

Than you all for your messages x

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Permalink Reply by jo on February 8, 2012 at 19:25

Hi.we are underalocal paediatriician and have also paid to see dr shah privately when we have bad spells.dr shah has offered to see us on his NHS list too but his waits are very long.it does require a referral from a paed as Sarah said but i have also been told that our local pct will only fund treatment at gosh for us (they would be responsible for funding as we are out of catchment for gosh) if they are providing a service which is too specialised for our local paed to deal with. This is really up to the discretion of your local paed if they feel it is suitable.i guess they have tightened up a bit otherwise gosh I think would be flooded because of their great reputation.I would recommend him thou particularly if you are struggling with food related allergies.
Sarah x

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Permalink Reply by Verity on February 8, 2012 at 19:46

That's what I'm thinking we will see a local paed and see how we get on and what they say. The doctor today said its like it's like Finley has irritable bowel, but then said she's never known a baby to have it. So now I'm even more confused!  Surprise surprise everything comes down to money lol,.

We are really struggling with what he is ok with and what he's not. Would also like some sort of explanation as to what is going on inside him that's making him so sensitive. Makes my mind boggle!

X

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Permalink Reply by Beverley on February 8, 2012 at 21:22

Irritable bowel is similar and linked with allergic bowel I think. X

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Permalink Reply by Verity on February 9, 2012 at 7:22

That's what I thought also, I did say about allergic gut and she didn't say anything. If he does have allergic gut, what is involved like what actually is it and what is treatment if any?
Xx

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