I am so sorry - for some reason I must have missed the notification of a new post on here in April and didn't see it, so haven't replied.Of course I remember talking to you before, and thanks very much for the Stokke buggy for my granddaughter it was absolutely fantastic.I am now a grandmother of 3! (2 from the first daughter and a 6 week old from the second)
A couple of things to try with your son. One would be s*d picosulphate liquid medicine(the pearl tablets don't work the same) which is available to buy over the counter,(it can be hard to find but Boots stock it in some branches and sometimes the co-op pharmacy) try using it daily and see if this helps, within a week or so you may see a more regular habit with no leakage. This is because instead of drawing water into the bowel, it pushes the mass dowwards and out. This has been the solution to my sons problem. he is now 14, and since he was 11 and we discovered this he has not had any leakage problem.He has to take it in a higher dose than that recommended on the packet, which obvs you need to have recommended by a medical person rather than doing by yourself.
The other thing is that my son was diagnosed shortly after I was with coeliac disease, necessitating a gluten free diet. This can be responsible for an itchy rash as well as bowel problems, and can be initially tested for it by the GP with a blood test. It does need to be a blood test that is looking specifically for it, not a 'one size fits all' general blood count. If the blood test shows up as possibly positive it can be confirmed by an endoscopy. A word of warning for anyone doing this, the child (or adult) must coninue eating gluten for it to show up on the blood test otherwise it will come up as a possibly false negative.
AS for someone who specialises in tummy problems in our kids, I went to the local paediatric bowel consultant who was luckily very open to suggestions and prescribed the s*d picosulphate .Other than that I have heard great things on here about professor Aziz, but don't know if he sees children? Could anyone else tell us that?
Hope some of this helps
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.