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Children's health

Private paediatric Gastro

2 replies

oxfordemma78 · 08/07/2015 03:48

Hi my youngest daughter who is 8 has ehlers danlos, chronic pain and is totally incontinent, I am going to take her private to see DR Eltumi at the Portland Hospital and wondered if anyone had seen him at all?. I strongly suspect she has coeliac disease. Thanks for reading this. Emma

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nether · 08/07/2015 04:41

Can you get back to Prof Grahame and/or Dr Ninis?

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SofiaAmes · 08/07/2015 05:28

Is she seeing a pediatric geneticist? Don't they have a recommendation for a gastro who specializes in kids with ehlers danlos? My ds has mitochondrial disease and I have found that it's much more useful when he sees a specialist (for his various medical issues caused by the mitochondrial dysfunction) who is aware of the issues with mitochondrial disease and willing to consult with his pediatric geneticist.
(Has your dd had genetic testing for mitochondrial issues?)

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