Busy days

Now that Halloween and Bonfire night are behind us and Christmas is fast approaching, there’s finally a little time to look back and reflect on the start of the new academic year.  September seems like a lifetime ago and yet was a busy month with appointments right, left and centre that have had a lasting impact on decisions about M’s long-term care.  We had appointments with GOSH, a new community paediatrician, M’s OT and with CAMHS; and I needed to be the thread that linked them all to ensure that M remained at the centre of their focus and that all agencies were working together to provide the best support they could.

Courtesy of travaasa.com

Courtesy of travaasa.com

The OT’s review was everything we needed it to be and she has already started going into school once a week to work with M on his handwriting skills.  The clinical psychologist he meets with fortnightly through CAMHS is slowly building a relationship with him and gently pushing him to talk about how he feels about life with EGID and the frustrations he experiences.  As for the new community paediatrician, who was recommended by our local hospital, well, lets just say we won’t be rushing to meet with her again.  Her complete lack of understanding of his condition was glaringly evident as she suggested that regular toileting and a sticker chart were the answers to all our problems.  How I refrained from saying something very rude is nothing short of a miracle!

The most important of all these, for us, was our regular appointment at GOSH with the gastro team charged with M’s care.  The restricted diet and increased medications over the last 3 years have not brought about the results we’ve been aiming for and M continues to be symptomatic a lot of the time.  We have become increasingly concerned about his emotional well-being as he struggles with the impact of EGID and multiple food allergies on his daily routines and I was determined to come away from that appointment with a tangible plan in place.  Despite our best efforts with the challenging treatment suggested by the local consultant leading into the summer, our worst fears were realised when the registrar told us that M appeared to be impacted again and we would need another course of fairly heavy-duty laxatives to empty his bowel.

planningThat led into a lengthy discussion about where we’re headed and what the most sensible next steps for M’s care are.  Short-term plans are all well and good, but we now need a long-term care plan put in place.  He agreed that we can’t keep limping from one appointment to the next and promised to discuss M’s current situation with our consultant.  Medical terms such as “pellet study“, “elemental diet” and “manometry” were bandied around and I am glad that, thanks to the support from other FABED families, I have a reasonable layman’s understanding of what all these terms actually mean.

We left the hospital feeling that we were beginning to making some progress in dealing with the problems that continue to dog M’s every step and a short-term plan that would start to deal with the current impaction issue.  The longer term decisions would be discussed both internally and with us before anything was settled on for definite.  A follow-up appointment with the consultant herself was made and our step was just a teeny bit lighter as we felt our concerns were being heard and addressed.

Courtesy of abercrombierealestate.com

Courtesy of abercrombierealestate.com

However, since that day, over 7 weeks ago, I have spoken to GOSH at least once a week and almost daily over the past 10 days.  The improvements expected haven’t happened and so the decision has been made to admit M into the hospital for further testing.  We need to understand whether his bowel is working as it should or not as that will give us a clue as to the direction we need to head.  We have also agreed with his consultant that the diet and medicines just aren’t helping his hugely allergic colon and so have made the decision to remove all food from his diet and follow the elemental diet via NG-tube for a while.  This should give his bowel and body some much-needed time to rest and recuperate, something I believe it so desperately needs.

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3 thoughts on “Busy days

  1. Tina Tubey

    Hi Hun I read your blogs and find them so interesting helpful and heart rendering such a mix of emotions x my son was diagnosed with ketotic hypoglycaemia at age 2 then at age 10 after 2-3 years of suffering constant diarrhoea nausea pain and lethargic plus other symptons he went under the care of gastro at gosh and had biopsy and scopes. It came back the he had eosinophillic infiltration in duodenum with 98 hpf with damage in bowel. After googling this and reading more I came to the conclusion rightly or wrongly that it was the condition I had heard lots of families talking about on fb sites….eosinophillic gastroenteritis as no one has said these words just that he has allergies affecting the bowel.

    I’ve been having such a bad time with Bradley he lost most of year 6 and since starting year 7 in secondary school attendance is still poor. Despite all the promises of help from school the nurse etc I just don’t think they are getting the complexity of this disorder x it is so frustrating and I went in complete meltdown today and so did Bradley x I think I need help as he was sobbing with frustration of how this is affecting his life and yet there are worse children out there he knows that yet he is so upset and now struggling with anger issues too x

    Any help for this emotionally drained mum would be grateful I admire your strength xx

    Date: Thu, 13 Nov 2014 19:38:55 +0000 To: sparkle_tina@hotmail.co.uk

    Reply
    1. bluesingingdragon Post author

      Hi lovely,thank you so much for your message and apologies for not replying sooner. I took my time as I wanted to think about what to say to you as I can hear just how tired and emotionally exhausted you’re feeling right now.

      Firstly, in terms of the diagnosis, don’t be afraid to challenge and question your consultant about whether it’s EGID. There’s a lot of reluctance to use these labels, but we questioned it after I’d read the list of symptoms, knew his scope results and felt that it was, by far and away, the best fit for what M has. His consultant verbally confirmed a diagnosis of EC, but the letters still talk in terms of an “allergic colon”/multiple food allergies/inflammatory bowel. We needed that “title” so we could have a focus for our energies and our doctor understood that.

      In terms of working with the school, whilst the current school is the best we’ve had, we have had previous bad experiences at 2 other schools. Have you given them information about EGID? If you feel that they’re not interested, or not bothered to learn more, then I’m in favour of complaining -contact the office, ask about their disability policies, ask how to make a complaint, complain to 1)the Head, 2) the Governors (focussing on the one who deals with additional/special/medical needs) and 3) don’t forget you can also talk to your local authority if the need arises. Don’t get me wrong, this is not an easy option to take, but might be the way to get them to sit up and take notice.

      It sounds to me that both you and Bradley need some counselling. Go talk to your GP and ask for referral. You are both at a high risk of depression and need to be talking it through. You can’t be Supermum, and the pressure of that can be the hardest thing to deal with. You need techniques for helping him come to terms with his illness and once you have those, you will then be better able to help and support him.

      I hope some of those things help – and, if you don’t mind, I might drop you a personal email to chat through some more things?

      Most importantly, remember you’re not on your own, so keep reaching out – this EGID Mummy knows exactly how you’re feeling right now. xxx

      Reply
  2. Pingback: E028 – the success story | 7 years to diagnosis

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