Parenteral Nutrition continues

We went back to GOSH yesterday to the parenteral nutrition (PN) clinic for Ben's 3 month review.  We had gone thinking they would probably want to try enteral feeds again despite him having horrendous diarrhoea and having had another flare up and 6 more weeks of steroids.

The plan is for us to have a joint appointment with the PN consultant and an immunology consultant.  They think that some of Ben's problems are down to his immune dysfunction so want to look at the possibilty of trying him with immunoglobulin replacement therapy.

They really think a lot of his issues are down to the Ehlers Danlos Syndrome (EDS) causing extreme dysmotility of the gastrointestinal tract.  This partly accounts for the diarrhoea but he also has bacterial overgrowth of the small bowel still.  He is permantently on 2 antibiotics at the moment.  We are going to send off another jejunal aspirate for culturing and then may try something different.

We are also going to try some manuka honey!  It has been found to have healing properties and am more than happy to give a natural remedy a go rather than always giving him strong toxic drugs.

We were told that they have 3 or 4 other children similar to Ben (we know 2 of them) and that they are exrtemely hard to treat as their guts are very unpredictable.  We were warned him may end up on and off PN and there are certainly not plans to try and get him off it at the moment.  It may be that he just needs some more time of gut rest but the future is looking even more uncertain.  it is a case of them not really knowing what to do or where to go next.

We are hoping that the immunologist has some ideas of making him cope with enteral feeds better.  Trying to be positive apart from OT and physio we are hoping to have an apointment free summer and Ben can start school in september with no plans for hospital admissions, scopes or refeeding for a little while.

Unless you do it it is hard to understand the physical and mental strain of home PN.  It is a constant worry that if you do it wrong your child could get a line infection and that could be fatal.  It is something that is not going to go away at the moment.

So we plod along and go back to the PN clinic at the end of October.

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