Almost One Year On...

Thursday, 1 August 2013
So its been almost a year since Jack first got referred regarding his reflux/lactose intolerance and his bowels. Almost one year on we are still none the wiser what is causing his problems.
So it took from August last year until May this year to get an appointment with the dieticians. The dieticians informed me there was no referral paperwork received before this point. In June we were discharged from the dieticians after just one meeting and trying soya milk. We were told to visit the doctors to arrange a referral for patch tests, so soon after I arranged an appointment with the doctor. When we got to the appointment after much encouragement the doctor finally agreed to refer us to a paediatrician for the patch tests but also mentioned blood tests for coeliac. Never before had coeliac disease been mentioned and I had no idea what it was. Mid July I took Jack for his blood tests - 10 bottles of blood they took from my poor boy. The following day we had our appointment with the paediatrician who informed us they were unable to do patch testing on babies as it can come back inconclusive but referred us back to the dietician to try prescription milk and to the doctor about Jack's skin. The Friday of the same week we got a call from the doctors to repeat Jack's blood tests for the liver function tests. As a mother I instantly asked if the other results were fine, I wanted to confirm mainly the coeliac had returned clear. The receptionist mumbled a lot of results which to me came across they were wrong too and eventually booked me in with the doctor to discuss the results. Half a week later we discussed the results with the doctor who informed us there was not yet a coeliac result back and he didn't see why the other results needed repeating as they looked fine. Therefore, the only blood test we went for initially wasn't yet back!
We have since taken Jack for a second blood tests but unfortunately they were unable to get any however I was informed it takes around 3/4 weeks to have a coeliac result returned.
So here we are, almost one year on and still awaiting answers. We are being sent back and forth between different services and treatments. I feel Jack and I have been let down, not only by our GP's but our health visitors and other services too.

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