The Plan……



When you are sat in front of a consultant and they utter the words “So Mum (grrr, a real pet hate that I no longer have a name of my own but don’t get me started on that) why are you here?” I have often wondered if they are looking for some deep, existential, philosophical reply about the meaning of life rather than what I tend to blurt out – “you sent me a letter or you asked to see me!”

I’m assuming that despite their vast case load of patients, they are at least basically familiar with my child and their peculiarities, since they have a tome in front of them that could be compared to the Encyclopaedia Britannica (undiagnosed child + medically complicated = multiple consultants/specialities so Minx’s current folders just at GOSH  – 4 –  have had a sticky post it note on them since last September to make up a new folder, apparently nobody’s reading the sticky notes as well as her actual notes!!!) The fact that they requested the last meeting and that since the last meeting I have sent a lengthy e-mail and had 2 phone conversations with the consultant’s registrars would, one hopes, mean they have more of an idea why I’m there than I do…apparently not and as my dear Dad often likes to remind me “assuming” makes an ass out of you and me.

So our recent appointment began with me wanting to bang my head against a wall when our gastro Doctor started with the why are you hear scenario. Resisting my inner demon’s wish to take centre stage (especially as he had 2 students with him and my parents taught me to play nice with the new kids) I calmly reminded him of our meeting last November in which we had been discussing plans to address Minx’s ongoing stomach and bowel issues.

I recapped that having had our “urgent” appointment cancelled in January due to the Junior Doctor’s Strike (which I fully support) and then outlining how Plans A (additional medications, caused too much extra pain and too much time in the bathroom) and Plans B (daily bowel wash outs which Minx, understandably vetoed after attempt number one) had failed spectacularly, I was hoping for THE NEW PLAN going forward.

We discussed the current situation which hasn’t really changed much over the last 2 years and the pain that strikes for no reason and is not adequately managed by a pretty hardcore medication; the lack of rhyme or reason for the loss of sensation in the bladder and bowel, the lurching between too much and too little (since we are talking :poop: I won’t go into detail!) and Minx had even written some questions of her own to challenge Dr Belly as she calls him. (A close proximation of his name and rather apt since his area of expertise is gastroenterology).

Minx had asked him why her tummy doesn’t work properly. He took his time to explain to her in a way that she could understand that tests have shown she has dysmotility of the gut and bowel meaning that food and liquid does not get pushed along, through then out in the way it should do. This can affect just parts of the muscles/nerves or the entire digestive tract as in Amelia’s case. Sometimes this just causes a slow down, other times a complete stop which can lead to obstructions.

Dr Belly complimented her on being a smart cookie and asking pertinent questions.  The students nodded excitedly and the consultant assumed the “hmmnnnn” position;  you know the one: head tipped slightly to one side and raised, eyes off in the distance and hand on chin.  Looking at the tableaux before me, I was reminded of the moniker “see no evil, hear no evil and speak no evil.” 😀

You may recall in previous posts I had talked about a vague PLAN C. We skirted round it again but this is a surgical option. It may still be something that we have to go ahead with and the passing of time will probably give us a better indication of whether or not it will be a solution. Since at this point, we cannot guarantee that it will help nor necessarily take away Minx’s pain, we can keep it under review. It may be that our hand will be forced if things deteriorate but it’s just not something Martin or I feel keen to rush forward with and the consultant also supports this decision.

So Dr B answered that for the time being at least, the plan is there is no plan, I was agog and for one of the few occasions in my life, (temporarily it must be said) speechless.  NO! I wanted to rage against the unfairness of it, the frustration of not being able to FIX it, help, DO SOMETHING.

I suppose in my mind I was waiting to cackle Hannibal Smith from the A Team style (now there’s a blast from the past) “I love it when a plan comes together!” minus the cigar of course. Instead I was left more Hannibal Lecter, wanting to go all serial-killer-esque….although I refrained from wanting to eat his liver, I could certainly have made use of the nice glass of chianti.

Why in the year 2016, when medical science has come so far, achieved so much, can we still not get to the bottom (no pun intended) of the workings of the human body? It’s times like this that I feel so dis-empowered, so cross that my magic wand seems to be permanently out of batteries.

This is something I am not alone in and ultimately, diagnosed or undiagnosed is a fact that parents/carers and more importantly those who are suffering butt up against all the time. Certainly I can say from a parental point of view, seeing someone you love and care about in pain or discomfort and not being able to make that go away is deeply, heart wrenchingly unfair.

In Minx’s case, we are comforted by the fact that she is generally a tough cookie, quite a stoic little thing and accepts it as part of her everyday life. One minute she is playing and happy, the next she is rocking on her knees. The pain side of things tends to be short-lived, comes in waves and then goes (on her best days, we tend to gloss over the BAD days). It could be argued that since she knows no different, this has always been part of her experiences, that she is “lucky.”  Some of my fellow additional need parents are left with children constantly in pain, waiting desperately  to give the next dose of medication, watching the clock and hoping against hope that the meds might just last that little bit longer. Knowing how our situation eats away at me, my heart certainly goes out to them.

Many will wonder whether we should change Doctors, see a new consultant, swap care to another hospital. All things we have considered but the one thing I will say about Dr Belly is he’s very honest. He never sugar coats it but he is kind and sympathetic and he has been familiar with Minx’s case for a long time. He’s carried out numerous scopes and biopsies as well as electrical testing of various internal muscles.  He knows her inside and out (again, no pun intended).

He agreed with me completely when I said that I was tired of fighting this, tired of having no answers, tired of 2 steps forward and then 3 back, trying this, that, the other. For something to work temporarily and then BOOM, right back to square one again.

Although we don’t have an over-riding diagnosis for Minx, we do know that her overall condition affects both her muscles and nerves throughout her body so we know that that she has a systemic condition which explains why her gut and bowel are so affected. He admitted they have several similar children on their case load, especially those who fall into the undiagnosed category who present in very similar ways to Minx.

Minx can’t tolerate the medications that help the gut/bowel spasm and contract (again quite common in kids like ours) and having tried a vast gamut of different pharmaceutical concoctions, Dr Belly is reluctant to try any more. She’s already on a raft (9 at the last count) of meds and it’s getting to a point that for whatever else we add in, we will have to add something even more to counteract some of the side effects. Not ideal and certainly pumping up the abdomen -Amelia’s medications all go in via her gastrostomy or feeding tube, directly in to her stomach –  full of liquids in a child that already has discomfort and distention because the gut can’t process things at the correct speed is not helping.

So we left the appointment feeling rather deflated (I’m really on fire with all these wind/bottom related puns today aren’t I?!) and as is her wont, Minx was determined that we should hit the Build A Bear store in Covent Garden to spend her pocket money which would apparently cheer us both up…I wasn’t sure how that was going to work since she wouldn’t let me spend any of it in the MAC shop.

Nonetheless I duly obliged and hot footed it, well as best you can when pushing a 16 kilo child in a rather unwieldy wheelchair, carrying a handbag, folder of medical notes, medications, feeding bag and all Minx’s unwanted crap paraphernalia in general.

Imagine our mutual horror (ok that’s stretching it more than a leeetle bit on my part) to find that the Build a Bear (BAB) Shop in Covent Garden has now CLOSED!!!!!! A quick internet search found the nearest one was miles a way in a shopping centre so not convenient at all. I tried to suggest that purchasing a sparkly lip gloss from the MAC store would definitely help or that we could save a visit to BAB for half term somewhere more locally but she was having none of that so we traipsed back to the shop near the hospital in which she had seen some pig-ugly penguin soft tat and purchased that instead.

I suppose seeing her little face all bright and sparkly eyed again was worth the walk but I was less pleased with her suggestion that we get a black cab because she was cold and tired -bearing in mind I was the one doing the walking/pushing/schlepping in general whilst she sat there cosy and warm and telling me to hurry up and go faster.

Talking about adding insult to injury, when she saw my foot the next morning which had a blister bigger than a £2.00 coin on it, she retorted it “I have no sympathy – told you we should have got a taxi!!!!”  The child is a hard taskmaster..I have NO idea where she gets that from….

So for now, really all I can say is that the best things we achieved on Tuesday were a fun time at the park near GOSH before the appointment, an over-stuffed penguin and a ruddy great blister – does that mean it’s time for more new shoes? 😉












Categorized as Undiagnosed


Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

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