want to find paediatric consultant re small intestine biopsy (150 radius of warwickshire)

[bethylou]

My 3.5 year old DS has been back on gluten for 6 weeks ready to have a biopsy to either confirm of rule out coeliac disease. We have reached 6 weeks today and he is really quite unwell with a wide variey of symptoms. The most distressing thing is when his bones/joints ache and he tells me he can't walk/dance/jump anymore.

We have been told by BCH that we are looking at about another month to six weeks once the info/paperwork between our local hospital and BCH has been sorted. I'm not sure we can wait that long with him feeling and looking so dreadful. It's also putting huge strain on us as a family as I know I am having to give him foods every day that are making him ill. Consequently, I am looking into having the procedure done privately but want to find the best person for the job. If you have experience of a consultant paediatrician within about 150 miles of Warwickshire, please can you give me some details? Anyone know how much it might cost? Thanks.

If you speak to one of the paediatric consultants secretaries at the hospital they should be able to tell you who does the NHS procedures at that hospital, which might be a good person to ask to do it privately.

Could you contact your original hospital and ask them to speed up thier transfer of paperwork?

Well, if you rush the test you might get false negative, as the purpose is to cause enough damage to be detected and this needs to build up (they take a microscopic biopsy but the gut is approx 5m long so to guarantee a result you need to have consistent damage).
U could always try what I have done, contact the dr and explain that you can't face putting him through being so unwell and you would rather do a diet trial, some drs would agree- after all it's you who will have to do all the work with diet, not them. I couldn't even face the biopsy, I just wanted him to get better and dr agreed to "treat as coeliac". He was much later tested for the coeliac gene and was found to have gluten-sensitive gene, not coeliac - and most of his symptoms were not in the gut either.
Sadly drs seem to be experts in disease not prevention. ALso, bear in mind that he could be gluten sensitive, ie when damage is in other places that the gut and coeliac test could be neg anyway.

Do you know who you're being referred to at BCH? I would call the secretary and see if he does private patients. You can then be referred back to his own list on the NHS after the test and continue with any treatment.

John Radcliffe in Oxford? Portland Hospital London?

Thanks all for your ideas. I have PMed nightcat as her info sounds particularly relevant to our family situation but I will call the secretaries again on Monday.

We saw a Paed privately for 2 years and he wouldn't do the biospy privately - he insisted we went back to the NHS ......

I'd agree about calling the consultant's secretary and seeing what they can do for you. I hope they can help you themselves; if you do decide to go private, I am sure you will get there but you might have to go to London - as of about 4 years ago there seemed to be relatively few private paediatricians in the country - though that may have changed, or I may have been looking in the wrong places (I was a GP's secretary though). I also found that there were often waiting lists of quite a few weeks even for private consultants in some cases. I used to use www.specialistinfo.com quite a lot though you do have to register to get any depth of information from the site.

There will be very few purely private paediatricians (and NHS secretaires won't really know who they are), what you need to ask is whether the NHS employed consultant does private work.