Tag Archives: Eosinophilic

Ringing in the New Year!

To whom it may concern

Dear Local Hospital

28 years ago, your specialists saved my life.

My family and I owe our gratitude to those skilled doctors who were on duty the night of my 9th birthday, when I was admitted perilously ill and closer to not making it through the night than my parents could have imagined. Their wonderful care brought me back from the brink as my Type 1 diabetes was diagnosed and they supported me for the next 11 years of my life. It is not ridiculous for me to say that I owe my life to you and had every confidence that when Mike and I started a family of our own, we could entrust the health of our children to your care.

2 and a half years ago, your consultants told me that there was nothing wrong with my son, other than a minor complaint he would grow out of in time. Your doctors left me questioning my instincts and made me feel that they viewed me as a neurotic mother. They even queried why we, as loving parents, would consider putting our child through an experience as horrendous as an endoscopy, when it was obviously not needed. Mike and I began to doubt our judgement and, at breaking point and in desperation, we took our child and walked away from your care.

Our wonderfully sympathetic GP listened and sent us to one of the top Children’s Hospitals in the world for a second opinion. At our very first appointment there, we were told that he was a very ill little boy, but that they could help. They have diagnosed a chronic condition that he will probably never outgrow, a condition that has changed his life. For 2 years, we have juggled our family’s lives to make the regular and necessary trips to London to search for answers and to work out how to return our son to better health.

Six months ago, our son was struggling with new symptoms and GOSH requested a test to rule out any infections in his system. A simple test that, due to its nature, needed to be carried out locally and our GP readily agreed and sent off the sample with the appropriate paperwork. Within days, you replied that you wouldn’t do the test due to funding and suggested that if GOSH wanted the test done, then we should travel to London for them to carry it out. It was with a sinking heart that I accepted this decision and vowed silently that I would never willingly bother your hospital again.

Five months ago, he needed urgent abdominal x-rays and I reluctantly agreed to attempt a referral to your hospital for these. To my surprise, you agreed and once again I was reminded of the competence and compassion of the dedicated people who work there as they cheerfully showed my inquisitive child the x-rays of his poorly tummy. A tiny seed of hope began to sprout – maybe we could develop a relationship with you that would put my son first.

Two months ago, we were prepared to give you another go. GOSH wanted him to be admitted to you for the extensive bowel prep he needed prior to his scopes, due to the chronic constipation that had been identified over the summer. I was willing to see if things had improved, now that we had the “big guns” at GOSH involved. You let us down again. I don’t know fully the conversation that happened between your gastro team and the team at GOSH, but you refused to admit him and instead we had to face the upheaval of a week away from home to make sure he got the care he needed. That tiny seed of hope had obviously been trampled on thorny ground.

A couple of weeks ago, I noted anxiously that he was showing some signs of chronic constipation once again and our best efforts were woefully ineffective. GOSH advised that he needed to be admitted before Christmas for another bout of heavy duty bowel preparation to clear his system and once again suggested we tried you. Once again, our stalwart GP sent an urgent referral across to you and once again, you refused to take him. This time you insisted that you wouldn’t even consider a referral sanctioned by GOSH unless he was examined by a GP first, so we did as asked, got him examined and re-sent the referral.

We are now nearly 3 weeks on and the best you can offer is an initial assessment in February 2014. If this is your response to an urgent referral, I dread to think how long a child might need to wait for a so-called non-urgent one. Our GP has been fantastic and can’t do enough to support us. Their admin staff are searching high and low for any possible alternatives for us and making phone-calls that are definitely above and beyond their call of duty.

You have been fantastically dreadful and are refusing to budge on your decision.

I understand that you are busy. I understand that your beds are full of other sick children. I understand that you feel you don’t know my child any more and are reluctant to offer him treatment based on the recommendation of other health professionals.

BUT, you are failing a 7 year old child.

A child who is in constant pain that waxes and wanes to an increasing level every day. A child who wakes in the night crying because of the pain in his tummy. A child who needs medical intervention now, so that the problems don’t multiply and escalate in the lead up to Christmas. A child who is at emotional breaking point and desperately needs some help. A child who doesn’t understand why I can’t make him better and why you won’t help.

GOSH is helping as best they can and is working alongside our GP to prescribe a series of stronger laxatives for us to use safely at home. The problem is that we won’t know for sure whether they’ve worked or not and will just have to keep trying during the festive season. What’s more we’re back at GOSH in the New Year, the best part of 6 weeks before you’ll see him and I’m left wondering what to do for best.

We’ve been told that we need a local paediatrician to be involved in his care. Someone we can liaise with when things get this bad and who can help us get the local care that our child needs. I’m caught between a rock and a hard place. I don’t trust that you will give him that help and support and yet we can’t be dependent on continual telephone consultations, especially when we know local input would be less of a strain on us all. Frustratingly, I don’t have options. I know just how excellent you can be and yet the last few years have been one disappointment after another. The best alternative to you is in Wales and we can’t get there because of NHS funding policies. We’re caught in a political trap, where everything comes down to money, or the lack of it, and postcodes; and everyone loses sight of the most important thing:

That at the centre of it all there’s a 7 year old boy who just needs someone to help him feel better.

Our charity needs YOU!

A week is a long time

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As I watched my active 7 year-old today, I realised that not many people would believe that 2 weeks ago he was in hospital going through 3 days of intensive bowel preparation, an anaesthetic, a colonoscopy and an endoscopy. This child, who is currently refusing to give in to his tiredness and go to sleep, has been running around like a wild thing, laughing and having fun. This time 2 weeks ago, he was quiet, in pain and reluctantly resigned to his fate.

A week ago, much to the surprise of friends and colleagues, despite having spent a week in GOSH, M was back at school as if nothing had happened. He reluctantly agreed to my ruling of no PE for the week, but I couldn’t stop him running around the playground with his friends trying to catch up on his missed week of fun. A week ago, we pulled him off the trampoline at home with a suggestion that bouncing around was perhaps not the most sensible thing after having investigative procedures on his GI tract – he has bounced back to full health, almost literally!

That Thursday was a long day for us all. Mike had travelled to London on the Wednesday to spend time with M and help distract him from all that was planned. As well as the extensive bowel prep, M had had a cannula put into his left hand on Wednesday afternoon and had once again impressed the nurses with his stoicism as he watched them put the needle in without shedding a tear. He laughed and joked with them as they did it and even discussed whether they would need to put a second one in his other hand.

Mike arrived back on Kingfisher ward around 8am Thursday, bringing with him a much-needed croissant and vanilla latte for my breakfast. M had been without food for 24 hours by this point and, whilst he accepted that I had to eat for my health, he didn’t want to see Mike eating food. We sat with a nervous M and played endless rounds of Top Trumps as we waited for the nurses to come and prepare him for the scopes. He eventually changed into a hospital gown and disappeared off to the Wii for one more game of Lego Batman with Mike to relieve the tension.

Finally, the nurse and consultant arrived to meet us and summon M to the investigation suite. We took Cat in with him, but M was determined to prove how brave he was and asked me to take Cat back to his bed with me. We kissed him good luck, watched as the anaesthetist put the “magic milk” into his cannula, heard him count unsuccessfully to 10 and then beat a hasty retreat back to his cubicle to wait for it all to be over.

Poor Cat, all ready for surgery, but relegated to wait instead

Nearly an hour and a half later, and this time prepared to be waiting beyond the 45 minutes the hospital staff had said, the consultant appeared to talk through what he had seen during the procedure. The best news was that the scopes looked much better than last time and whilst there were still obvious areas of inflammation, the damage had been reduced and consequently M bled considerably less than previously. There are signs of some problems in his upper GI tract, but we need to wait for the biopsies to come back from the laboratory to see what they show. Everything supports the EGID diagnosis and shows that the medicine and restricted diet are making a significant difference to his insides and we should continue to persevere with them.

Even better, M’s reaction to the anaesthetic was significantly better than the previous times and whilst there were some unexpected concerns with low blood pressure and pulse rate – he really is my son as I suffer the same problems – the hallucinogenic reaction was relatively mild and within 3 hours of coming round from the sedation, he was back playing the Wii with Mike., something we had never even imagined would be possible.

So now we’re on to our next wait until the results are returned and every week between now and our follow-up appointment is going to be an extremely long time.

Whirlwind week

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Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made. Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky, assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes. I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered. We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic. She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive. We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M. S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date. All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit. Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned. No time to confirm what the position with our local hospital was, that will have to wait until Monday. Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G. Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am – Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case. Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising. Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not). Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not. Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news.

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse. She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!! Appointment cancelled as GOSH can’t find him a bed for the week. Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date. They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up! Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on. Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday. She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah! Get the champagne flowing, we have lift off. Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left. S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday. I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.

Big decisions

4 Replies

Courtesy of stuff.co.nz

We’ve recently had to make a decision about where we’re headed with M’s health and what tests, if any, we want to push GOSH to consider.

We’ve had a mixed success with the Movicol as he has started using the toilet successfully again and we’ve been able to banish the pull-ups to the bottom of the cupboard for the next time there’s a “just in case” situation. However, M now seems to be fluctuating between constipation and chronic diarrhoea and we’ve reduced his dose down to 3 sachets a day as the 4 were really proving to be too much for his system. We’ve tentatively settled there, even though it doesn’t yet feel 100% right.

The positive and best thing is that he’s conquered the toileting struggles. These had been a major source of distress over the summer and it’s nice to back on an even keel. M feels as if he’s more in control of his body – well as much as he can be whilst dealing with the ongoing battle with the symptoms of the EGID – and he’s really happy in school. What’s more, school have been working hard at putting a medical care plan in place for him to deal with the changing nature of his EGID and his medicines, which means that we feel confident that they’re taking the situation seriously and will support him during the school day.

Courtesy of warriorfitness.org

BUT – and you all knew that was coming didn’t you? – I’m still feeling unsettled about his over-all health and have a feeling that we’re not really dealing with the root cause of the problem. Despite some days when it appears he could eat for Britain, his appetite is down and his lunch-box is emptier than ever. He’s beginning to object more to taking his daily medicines and there’s been numerous mornings recently when I’ve held my sobbing child on my lap and had to coax him to take the full implement prescribed.

His sleep patterns are off once again and I’ve lost count of how many mornings I’ve woken up to find a small limpet-like child clinging to me and stealing the duvet from my back. Last night, I disappeared into my bed at 11.20pm, having found M still avidly reading his atlas and discovering new and interesting facts to share with me. It has to be said that a lot of the sleep problems appear to be related to his emotional and psychological health as when Mike came upstairs just 10 minutes later, M was flat out and fast asleep in his own bed. It’s as if he needs to be reassured that Mummy is nearby and once that’s clear, then all is well with the world and he can let himself drift off to sleep.

He’s emotional and tired and fed-up; and, to be honest, so are we. We’re working hard at remembering and focussing on the positives, but sometimes that feels like a step too far. The constant barrage of frustrated behaviour, food management, pain relief, sleeplessness, appointments. emails and phone-calls have drained me completely and I just felt unable to face another discussion with yet another faceless registrar at GOSH, who has little or no knowledge of M and needs me to bring them up to speed before I even get to the point of the phone-call.

So, at the beginning of the week, I asked Mike to speak to GOSH and put forward our case for another set of scopes. It’s been nearly 2 years since the last ones were done and we felt it was high time he was checked again. We’ve got no real answers as to whether all the medicines are 1) necessary or 2) working, the limited diet is a strain and this past week we seem to have added raspberries to the list of forbidden foods. This might seem like an easy decision to make, something of a no-brainer, but, as some of you may remember from my previous blog posts, M suffers from an allergic reaction to the anaesthetic. It’s been a big decision to make to put him through an ordeal that we hope might provide some answers, but that we know will definitely cause him pain.

All I can say is that someone must have been smiling down on Mike on Monday. I’d warned him that his initial phone-call would only get us put on the list and that if he was lucky he’d speak to a registrar on Tuesday or maybe Wednesday. I fully expected that we’d then have to wait for M’s consultant, Dr H, to be consulted and that we might get a final answer by the end of the week. If he argued our case well enough, then there was a possibility we’d get a yes, but I prepared him for battle. So imagine my surprise at getting a text message at 3.45pm on the same day saying that not only had the registrar been spoken to, but they had agreed to recommend scopes and, what was more, Dr H had been contacted, given her agreement and scopes would be scheduled for 6-8 weeks time.

The GOSH gastro team have expressed the same concerns about M’s progress as us and made making that big decision for more investigations much easier than I could ever have hoped. So all we need to do now is wait for the appointment date to be set and it’ll be full steam ahead.

A new term

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September marks the start of the new school year and an opportunity to look ahead and plan for the coming months. For our household, September has seen M starting at his new school as well as a number of appointments to make and keep regarding his health. There’s been so much to deal with that, for my own sanity as well as ease of reading, I’ve spread my thoughts over a couple of blog posts.

Courtesy of carevan.org

School-wise, the start of term has gone amazingly well for both M and G, who have enjoyed meeting their new teachers and are slowly settling down into their new school routines. G was a little nervous on the first couple of days meeting her new teachers (she has 2 who job-share), but her class is the same, so she’s with her friends. It’s hard to believe that my first-born is starting in Year 5 and makes me feel old to realise that I’ve been parenting for nearly a decade.

Sadly, the continued use of Movicol meant that M wasn’t able to start back without wearing a pull-up as we had hoped. The risk of an accident during school hours and the massive negative impact this would have on him left the school and us in agreement that the pull-up was a necessary evil, and M reluctantly agreed. It has been hard to judge his real feelings about this as he has been deliberately disengaged from the decision-making, which has been no surprise at all. He just doesn’t want to face this new reality at the moment and who can blame him? His biggest fear is that his classmates might find out, but the school and I have worked alongside each other to make sure this possibility is minimised. The pull-up is hidden by his underwear – a sensible pair of trunks long enough to cover it completely – and school suggested he uses the classroom toilet to change for PE, away from prying eyes.

His sensitivity to his “different” lunch-box has been handled well by his new teacher, Miss K, who suggested a special circle time at the end of the first week to introduce his diet and health issues to the class. By the Friday, M had decided he was open to answering any questions his new friends might have and, as we expected, most of them revolved around what he could or couldn’t eat. Following that Q&A session, Miss K has also suggested that perhaps we could arrange a “tasting” session for the class, so that they can see, taste and understand some of the foods M has to eat. M loves the idea of being able to share his diet with his new friends and is drawing up a list of what to take into school as we speak.

Which will make the final cut?

School have also made allowances regarding his use of the toilets and impressed me by thinking around the matter of which toilets he would need to access. They considered what could happen if the toilet was in use when he needed to go and have given him special permission to use the Year 6 boys toilet, which is just along the corridor. They’ve also agreed that as long as the adult in charge is aware he’s dashing off to the loo, then he can forego the need to ask permission before he leaves the classroom or playground. All important when time really is of the essence.

All of this is a refreshing change for us and a real affirmation that we made the right decision in choosing to move schools. Their positive approach to working with us and with M means that we all feel a great deal more relaxed about the school day. School are keen that the day is as stress-free for M as it can be and the effect of this on M is clear, as so far we’ve had no toileting issues at school and he is the happiest we’ve seen him in a long time. They really have restored my confidence that M will be supported as he needs and the lines of communication are very much open for us all.

Well, it might be a bit more high tech than this... Courtesy of www.lifeschocolates.com

Well, it might be a bit more high tech than this…
Courtesy of http://www.lifeschocolates.com

The Pellet Study

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Courtesy of sfia.org

Sometimes having a child with a chronic illness is like becoming part of a secret society. You suddenly become well versed in a world of specialised language, medical tests and medicines that you never knew existed in your life pre-diagnosis. Having spent a long time researching EGID both before and after M’s diagnosis, I thought I had come across most things, even if I had no idea what half of them were and whether they’d ever be relevant to M, but the turmoil of the last couple of months and the subsequent plan of action put into place with GOSH was to show me just how wrong I was.

As I agreed with the registrar over the phone about the next steps we needed to take following M’s abdominal x-ray, the words “pellet study” and “slow transit colon” were thrown in my direction. The brief explanation given was probably not enough to satisfy my inner control freak, who needs to know everything and understand the whys and the wherefores, but I figured that I could boost my understanding by a quick further investigation with Dr Google. Sadly, I hadn’t anticipated just how difficult I would find it to get the details and comprehension that I needed from that source.

Courtesy of warriorfitness.org

This time round however, I knew where to turn. Within minutes of getting off the phone to GOSH and my failed attempts to uncover more useful information on the internet, I hopped across from Google to Facebook and posted a question on the FABED forum. I may have mentioned just once or twice before how wonderfully knowledgeable the wonderful FABED parents are and this time was to prove no exception. A couple of hours after my original posting, several Mums had offered their support and advice and one even offered to phone me and talk it through.

Michelle, if you’re reading this, you were an absolute life-saver with that offer and that phone-call. I really can’t thank you enough.

I now had a better understanding of what the pellet study was, what they were looking for and some key pointers to discuss with the doctors before we took the test any further. Most importantly, I had some affirmation that my belief that waiting until October to perform the study, as was originally proposed, was just too long, especially for my desperately unhappy lad and I felt confident that I could go back to GOSH and argue my case.

As it happens, this turned out to be unnecessary as my follow-up call after the Movicol introduction, saw me talking to a new registrar, who agreed that we needed to be testing M now to understand what was going on with him and to make sure we were doing all that we could to help him back to the road of recovery. However, I was able to ask my questions, understand not only what they were looking for, but what they would do with their findings and know where we were headed over the next few months.

The pellet study looks at how quickly food moves through the intestinal tract and whether there are any issues with a slow transit that could have led to M’s chronic constipation. Over 3 days, M needed to take a series of “pellets”, which are capsules containing mildly radioactive and different shaped markers. The pellets are taken at the same time on 3 consecutive days and then on the 4^th day, he had another abdominal x-ray. The images below show how the x-rays could turn out:

Courtesy of http://www.ucl.ac.uk

As you can see, image 1 shows a person with normal transit, who would have passed all or most of the markers out of their body by the time the x-ray is taken. Number 2 shows someone with a slow-transit intestine, which means that the body is failing to move food through the intestinal tract as it should, which can lead to constipation. The final image shows that whilst the transition through the intestines has worked as it should, a blockage at some point has prevented the markers being passed out as they should.

If M’s x-ray turns out to be like image number 1, then we are back to the drawing board to understand what’s going on in his insides, but a normal transition is great news. Number 2 means the introduction of medicine number 8, a stimulant laxative which would effectively irritate the intestines into reacting as they should and push the food eaten along the intestinal tract. Number 3 would be an indication that there is a blockage of some description at a point in the bowel and carries the likelihood for investigative surgery to find out what that blockage is. None of them is an ideal answer, but at least we feel that we’re being proactive in trying to find out exactly what’s going on.

So, the million dollar question has to be – Which x-ray image will M have? Answers on a postcard please…

This summer

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This summer has not been the sunny, fun-filled and relaxing one we were hoping for. This summer has thrown up a few unexpected bumps in the road which we’ve had to negotiate whilst trying to hang on to our sanity. This summer has had its highs and its lows, but we’ve got there in the end and have lived to tell the tale, just.

Courtesy of i360life.com

I haven’t been able to share the truth about this summer before now because this summer has been incredibly hard on M. It is only now that we are through the worst and have a plan of action, that I feel able to talk about it. I have made numerous phone-calls to GOSH to try and reach a place that has left us all feeling reassured and relatively happy.

At the beginning of July, M had an abdominal x-ray as well as starting on his new medicine, Nalcrom, but we had seen no improvement for him. To my complete surprise, the x-ray showed that M was chronically constipated and impacted all the way from his colon to his rectum. The first thing to tackle was clearing his system out, thereby giving him a fighting chance to recover the toileting improvements that he’d experienced at the start of the year.

This meant the return of our old friend, Movicol, a softening laxative that enables the body to better pass the stools without too much pain. We had used it when G was struggling with her own gastro difficulties, but the intervening 3 or 4 years had rendered my memory somewhat hazy as to how to manage this medicine. However, for once I felt confident that I knew what I was dealing with.

The plan was to embark on a routine that would see M taking an increasing dose of Movicol to enable the fecal impaction to be cleared from his body. Once this happened, he would need to continue on a maintenance level to keep his system moving until our next appointment at GOSH in October. Whilst this may sound easy enough, at the maximum level we were asking M to drink an extra 500mls of medicine a day and one that he hated taking and it was a struggle every step of the way.

Courtesy of myblogz.us

The downside was that, whilst on the increased dosage, M would suffer from even more chronic diarrhoea until the blockage was out and I knew that he would really struggle with this proposal. Just imagine the horror of being an active 7 year-old boy with minimal control of your bowels and a fear that someone might find out and make fun of you.

On the flipside, the advantage of being in the summer holidays was that we could tackle the problem thoroughly and hopefully resolve it fully before M starts at his new school in September. I suggested to M that for the relatively short time he was on the medicine he returned to wearing a pull-up. This would solve any embarrassing incidents whilst we were out and about during the summer and would give him the reassurance that other people wouldn’t know when he soiled himself. He reluctantly agreed, being obviously torn between the nightmare of wearing pull-ups as a 7 year old and that of being unable to control his bowel when in public.

Courtesy of http://www.gonannies.com

The first 14 days were hell, but the medicine did its thing and progress seemed to have been made. He struggled to cope and his fears of discovery and frustrations about his toileting spilled over into his day-to-day behaviour and those of us closest, Mike, G and me, suffered the consequences. He and I spent time together, seeing who could shout out louder and rant and rave more about how unfair the situation was. M needed to scream out the tension because it was unfair. Unfair that my beautiful, bright 7 year old was once again subject to the fraility of his body and couldn’t be like all of his friends. Unfair that I had to hold him sobbing once more because he just couldn’t understand why all this was happening to him and didn’t know how to cope. Unfair that the one person in the world who should be able to make it all better (me), couldn’t guarantee that there was an end in sight. His one over-riding fear was that he would need to continue to wear the pull-ups when he went back to school. The hardest thing for me was not being able to reassure him 100% that that wouldn’t be the case. We hope it won’t be for his sake, but as I’ve quickly learned, there are no guarantees especially when it comes to this condition.

Unfortunately, despite the promising start, we discovered blood in a number of his stools as well as mucous, both of which are an indicator of intestinal damage. Having a plan in place, even if contains new tests and possibly more medicines, means that I know we will get to the point of some answers, although they might not be as conclusive as we would want.

My child with Super powers

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As a parent, we all go through that experience of self-doubt and belief that we’re doing it all wrong. As a parent of an unique child, a child with unexpected needs, that self-doubt is part of your every waking moment. You begin to wonder if it’s something that you did, right or wrong, that has led to the position you find yourself in.

A good friend recently sent Mike and me a link to this wonderful blog post that really spoke to her, and our, hearts. Through it I discovered the truth that I have children with super powers, rather than with special needs.

Courtesy of kotaku.com

We all know that it’s not easy being a parent and when you add into that mix an illness or condition or special need for your child, you rapidly begin to wonder why. Almost every day I question why M has this condition. Is it something I did, or didn’t do during my pregnancy? Is it faulty genetics on my side, or on MIke’s, that have led to these problems? Could I have done anything to change the outcome that my boy has to live with? Of course, the answer is no. He is who he is and who God made him. I don’t have the answers as to why his life has been so medically complicated and why he continues to have to fight a daily battle for good health, but I also can’t live my life playing the blame game.

I struggle when talking to expectant Mums who are holding forth that they don’t mind whether they have a boy or a girl as long as the baby is healthy. I remember saying the same thing myself, so why is it that that wasn’t the card we got dealt? I smile and nod and bite my tongue, because I can’t promise that for them that’ll be their experience. I hope it is, I really do, but I know that there are no guarantees in life. We are the exception to that rule.

Courtesy of http://www.evolllution.com

During a recent conversation, I was asked whether I wished I could turn the clocks back and make different decisions to those I made 10 years ago. I didn’t have to stop and think because I know the answer. No. The mountains may be high and treacherous, but the view from the top is amazing and my answer is no. The valleys can be dark and bleak, but the sunshine reaches down and touches those darkest of places and the answer is no. I may get knocked down far more times that I thought possible and struggle to get back up and keep on with the fight, but my answer is still no. I would love for life to be easier for both M and G, I wish for their medical problems to disappear in a heartbeat, but I love them and I love being a parent to children with super powers, even if the going is sometimes really, really tough.

Lake Huron, Canada

7 years to diagnosis

Searching for an answer

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