Tag Archives: CAMHS

“So much time…

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...and so little to do. Wait a minute. Strike that. Reverse it…”

                                                          – Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post.  However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

Busy days

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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.

Eating my words

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For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living.  As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M.  We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.

Courtesy of connectsociety.org

Courtesy of connectsociety.org

Sadly, our experience of CAMHS has been less than favourable.  The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition.  She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t.  At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.

ticklistIn the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input.  I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan.  However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.

And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery.  I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting.  I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from.  At this point, my expectations were low – and about to be blown out of the water!

T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could.  I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case.  We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.

She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling.  She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues.  Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want.  We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.

Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day.  My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth.  T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.

We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round.  We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.