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Ehlers Danlos Syndrome Gastro and Bowel Problems

3 replies

oxfordemma1978 · 27/11/2013 09:12

Hi this is my first post here. I have 3 children, our youngest daughter who is 6, was diagnosed with EDS in October 2012, after being diganosed privately by Professor Grahame and Dr Ninis in London. This was after the worst year of our life, as the local hospital had referred us to social services, this was purely based on the hospital saying there had been 15 missed hospital admissions, when in fact it was only 2 and they had accepted why we had missed those, it has been nearly 2 years since we were forced to take our daughter to the hospital as a in patient, for two weeks, and they denied us a second opinion for 10 months. We had wanted to take her privately and had a appointment worked out with my husbands BUPA via work for the week after they came round our home. This was also denied to us. We have two complaints with the local authority and also the local nhs hospital trust. the hospital admitted it was only 2 missed admissions. It has taken 2 years of going through the complaints procedure so far. the health complaint as they missed our daughters diagnosis, (and the consultant was fixated with one symptom with her, her "constipation" as he saw it, which was really slow gut motility, delayed transit, and gastronintestinal failure) is with the ombudsman and the local authority complaint is with the second stage independant officers. our daughter has a multitude of complex medical problems. It has been a long slow battle to clear our names. Has anyone seen any gastro specialists for EDS? We have so far paid out a lot of money to get her seen privately. and we have a appointment tomorrow to see Dr Rawat as well. Has anyone else seen him and if so what happens at a appointment and is he good to children with EDS etc? many thanks for any help in this matter. Emma :)

OP posts:
TaniaLT · 28/11/2013 15:13

Hi Emma
So sorry you've had such a terrible time. My son, 14 and I both has EDS and POTS and my son also sees Dr Ninis.(who is lovely)
What you are describing re gut motility is very familiar though we haven't seen a specialist as yet so would be interested in your experiences. My son has also been vomiting after meals, which we think may be gastroparesis.
You will find more help with this in the EDS forum on EDSuk or the HMSA site or the RARECONNECT EDS forum (where I am a moderator) as that's where the people with this kind on knowledge will post. Or ask Lara at EDS UK, who is really helpful.
Of course the recommended thing is to drink lots and lots of water.. But that's far easier said than done as I am sure you know too!

AnotherNewt · 27/12/2013 21:45

This reply has been deleted

Message withdrawn at poster's request.

MariaStillChristmas · 31/12/2013 00:51

Dr Ninis should be able to suggest a suitable NHS gastroenterologist, then you can ask your GP to refer your dd. Leave a message with her secretary?

There was a bit of research at great ormond street about pains due to food allergies in some types of EDS, although it was very early stages.

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