Tag Archives: ill health

An unexpected hiccup

Today has just been one of those days. Mike and I have been psyching ourselves up for the start of our week on the M-friendly diet which starts tomorrow morning. The sun came out to make today a beautiful day and we had every intention on going out on a family bike ride, possibly with a picnic in tow.

However, despite the best laid plans, today has not gone as we were expecting.

Our hiccup started at around 8.30am this morning, when G and M descended on me and woke me up to tell me that M had some spots on his back and he was very, very itchy. A quick glance showed some unpleasant red welts on his lower back, which he couldn’t stop scratching. When I examined a little further, the welts were in fact across his left shoulder, in two patches on his middle back, down one side and in a patch at the top of his buttocks too.

M has been a little out of sorts for a couple of days and yesterday evening described his feelings of a “tummy-ache” and “feeling very hot inside my tummy”, even though he had no obvious temperature. Today he was more than a little out-of-sorts, but considerably more grumpy than usual. He has over-reacted to everything that happens, but then flaked out with no energy to keep his frustrations going.

I consulted my Mum, her medical books and Dr Google. We were a little concerned about measles given the current epidemic in Wales in particular, but didn’t feel his rash looked enough like measles spots to warrant us being unduly concerned. I tried our local GP, but the health centre was closed because it’s a Saturday, and we all know that you can’t get ill on a weekend! The recommendation on the recorded phone message was to call the NHS’s new number “111”.

As Mike organised a cooling bath for M and supervised both children getting dressed, I phoned the NHS helpline and talked through M’s symptoms with the phone operator. Her reply was that we needed to keep M cool and hydrated and she would arrange for a consulting operator to call me back within 2 hours as she felt that his condition warranted it. I gave my mobile phone number as the contact number and decided with Mike that we would leave G with my Mum and take M into the A&E department of the local Children’s Hospital.

Off we went on our unplanned Saturday morning visit to the local A&E and I have to say now how impressed I was with the NHS 111 operators. During our 25 minute journey, not only had the consulting operator called me back and discussed M’s symptoms, but she also arranged for the local out-of-hours GP to phone. His recommendation was that we came in and got the spots checked out, particularly because of M’s underlying condition and booked us into the Out of Hours GP surgery at the local hospital.

We got there and were seen unbelievably quickly. The doctor we saw gave M a thorough examination and then gave us her verdict. She believed that M had had an allergic reaction to either another food or possibly to an environmental allergen, which caused his body to “break-out” in the red and itchy welts, rather than the usual response of stomach cramps and diarrhoea. Fortunately, we keep a detailed food diary as a matter of course and so are able to track everything M has eaten and also every complaint, reaction or temperature he experiences.

At the moment, we have no idea what caused this reaction and have to just persevere with helping him recover from it without the assistance of any additional medicine – as he already takes 2 anti-histamines, the only logical next step medication-wise would have been a steroid-based treatment and we didn’t feel his symptoms needed such an extreme response. All we can now do is keep monitoring the situation and look out for further break-outs on his body. I hate to think that there could be yet another food that needs to be removed from M’s limited diet, but that may be unavoidable.

By the time we got back, recovered G, ate lunch and got home, most of the afternoon had disappeared on us too and we had time enough to play some board games and watch a little TV before bedtime. It’s not been the day any of us planned, but I guess that that’s just life with an allergy child.

D-day

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As we head up to London today for yet another appointment at GOSH, I thought I’d complete the story started in my last blog.

D-day had finally arrived. We got up, washed, dressed and packed up our bags before heading over the road to the ward for M’s scopes. We had a lot of hope pinned to these simple tests and both believed that we would get some answers once they had been done.

When your child faces surgery of any kind, as a parent you are understandably nervous. The medical team at GOSH did their best to put us at ease and to reassure us that all would be well whilst M was being examined. My biggest concern was the anaesthetic. M had broken his left arm in 4 places when he was 4 and had had to have 2 operations to put it back together. Both times he had experienced a noticeable reaction to the anaesthetic used with symptoms of a high temperature, hallucinations and thrashing about as he came round from it. The second time had been worse than the first and I was concerned about how he would react this third time as I had been warned that his reaction may become more severe each time he had to undergo anesthesia. His consultant and the anesthetist talked this over with us and reassured me that they would keep an eye on him.

We went with him when he was given the anaesthetic and this experience hit Mike particularly hard. On both of the previous occasions, only one parent had been allowed to accompany M into the prep room, so I had “been there and done it” before. The sight of M chatting away one moment and drifting to sleep with his eyes rolling back in his head the next, reduced Mike to stunned silence and to something of an emotional wreck. We returned to the waiting area, where the nurse advised us that it would all be over in about 30 minutes, so enough time to go and get a coffee at the nearby coffee shop.

Taking note of my need for a sweet and caffeinated beverage (Vanilla latte!) and his own for some fresh air , Mike and I wandered out into the winter weather and down the street. Neither of us wanted to linger, so we grabbed a coffee to go and hurried back to the waiting room. What happened next was every parent’s nightmare. M did not come out of his surgery within half an hour, or indeed within an hour. After over an hour of anxious waiting and quizzing of the nursing staff, we were finally ushered into the recovery room to see our boy.

The operation had not gone as smoothly as hoped because of the state of M’s insides. The colonscopy had gone well, but when they inserted the tube for his endoscopy, they discovered that his intestines had been badly damaged by the as yet undiagnosed condition and he had bled heavily as they tried to examine and take biopsies for testing. In the end, they had done what they could and had left it that. His consultant was confident that she knew what the problem was, even with an incomplete examination done, but she wanted to wait for the results of the biopsies before confirming her diagnosis.

The original plan had been that M would come round from the anaesthetic, have a small bite to eat, use the toilet and then be discharged by lunch-time. The extended length of the operation and then the extreme reaction to the anaesthetic meant that we’d be lucky if we got out by dinner. Fortunately, Mike and I had anticipated this turn of events, well the reaction bit at least, and had sensibly booked a later train to take us back home.

I dealt with the thrashing, the biting, the uncontrollable sobbing and the screaming as the anaesthetic passed through M’s tiny body, until finally he fell into a fitful sleep. We survived the departure of those children who had been scoped after him and the arrival of those for the afternoon list for theatre. We manoeuvred ourselves, M’s bed and our bags away from the main recovery room to the “spare machinery” room as they needed the bed space for those new patients. And we appreciated the drinks and sandwiches they provided for us and for M when he eventually woke up completely.

As the consultant left at the end of her day, we were finally told that M was going to be discharged and we left GOSH approximately 10 hours after we’d entered it that very morning. Mike flagged down a passing black cab and the cabbie helped us in with our luggage as I carried our suffering and sleepy lad in and onto my lap. We had acquired some additional soft toys on our trip, well every boy needs a gruffalo and mouse to see them through surgery, as well as a GOSH bear for G as a present from our stay away from home and we needed extra arms to manage those without losing them along the way.

Getting onto the train at Paddington felt like no mean feat, but we were reassured and hopeful by our consultant’s assurances that she knew at last what we were dealing with and prepared for our return visit less than a month later.

When life gives you lemons…

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…make lemonade. Isn’t that how the saying goes? I have to confess to pondering this one in the early hours of this morning after being woken up by a somewhat distraught M who had just had a soiling accident whilst asleep. He woke me at 3.45am and 2 hours later, my mind was still buzzing and sleep seemed a thing from the dim and distant past. This doesn’t happen very often, but the impact is huge and it got me to thinking.

The impact of M’s condition has been massive on us all as a family and not just on M himself. To anyone who has a “sick” child, you will understand what I mean.

Mike and I have suddenly had to become medical experts in our own rights, despite our alternate careers as an accountant and surveyor, as who else is going to make sure that the best is done for M? I now know so much more about gastro conditions and food allergies than I ever anticipated needing to know. I’ve had to learn coping mechanisms, not just for M to deal with his frustration and anger at being ill, but to help us cope as well. The years of not having an answer have taken their toll and both Mike and I have had to re-learn who our little boy is and what makes him tick. I have to be his first line of defense wherever we are and I’m the one in his corner fighting his cause.

One of the hardest things about this illness is that there are no obvious outward signs that M is ill. He is a slight child and even when seriously underweight and struggling with full toilet-training, he has never lacked energy or enthusiasm for life. He may suffer with stomach cramps and joint aches that would floor most adults, but he just gets on with it. His complaints of aching limbs have been ignored for years as I was guilty of thinking of him as a “moaning” child, but now I know that those aches are very real and extremely uncomfortable whilst they last. He has been living the last 7 years with these as his normal, so he only stops when he’s suffering extreme moments of pain. He had then, and continues to have, the most amazing stamina and a reserve of energy that I can only envy. He is constantly on the go and has never let his health problems slow him down. In very many ways, this is his greatest strength, but also the biggest problem for us.

The lack of obvious evidence of his poor health means that people just don’t understand that he is ill and look at me in disbelief when I explain just how poorly he can be and, to be perfectly honest, I don’t blame them at all. He doesn’t look like a child who eats fresh air and frequently manages on less than 8 hours sleep a night; but he is.

I don’t think that Mike will mind me sharing that he has struggled to come to terms with M’s condition. I have an advantage in that I have grown up living with my own T1 diabetes. I know that these things can be survived and have just got on with it. Mike has found it harder and has longed for an easier fix than the road we seem to be travelling down at the moment. Of course, we now have a diagnosis and that has helped us all. Being able to put a name to the condition, even though it’s so rare that no-one ever seems to have heard of it, means that our fight has not been in vain and we can no longer be dismissed as fussy parents. This is M’s life for now and for the foreseeable future, and as his parents, our job is to ensure that he learns how to make the best of a bad situation.

M has struggled too, as you would expect and his levels of frustration at times are massive. Not only is he restricted by what he can eat and how his body reacts, but he also has to deal with the knock-on consequences. It is no longer possible for him to go home for tea with his friends, attend birthday parties, participate in cooking at school or even have a Christmas or Easter treat, without me having to provide a detailed list of what he can and can’t eat and the inevitable 20 minute discussion with the adult in charge about his condition. We encourage him to have a go at whatever he wants and refuse to let his condition dictate who he is or how he lives his life; and a big thank you has to go to my parents who brought me up with that very same approach to T1D and my life.

He acts out – he kicks and hits and shouts and bites – and sadly the people who have to survive the mood swings are us and G. G has had a hard role to play as the big sister to a poorly child. She worries about his health and I know struggles when we have to disappear off to London for the day for his hospital check-ups. But, she is also a child and has her own challenges to deal with. My children are the best of friends and would defend each other to the end; but are also the worst of enemies. It has become extremely important for us to invest as much time in G as we can and the last couple of months have enabled us to do just that far more than before. She recently took part in a music event organised by the local authority music education department and her clarinet skills were considered good enough to allow her to play with the wind band. This was something just for her and she loved every moment.

She has also been invited to join the local swimming club and that is something we are keen to encourage her to do. There was a point when we wondered a couple of years ago if she’d ever learn to swim, but she is now excelling at it and her teacher invited her to join the Club to see how she gets on. It’s an additional time commitment on a weekly basis for us as she will need to attend at least 1 extra training session a week as well as competitions, but we wouldn’t have it any other way.

I’m proud of both my children – M for his stoicism in dealing with his condition and making the most of life; and G for her continued hard work at school and at her after-school clubs. She may not like the fact that M misses school regularly to attend hospital appointments, but she admits that she wouldn’t want to have the blood tests and diet that he has. Neither child has an easy cross to bear right now, but I hope Mike and I manage to get it right enough to see them successfully and happily through to adulthood.

Baby steps

Gut instinct

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Despite an appetite to rival a grown man’s, M’s weight stuck determinedly to the 9th percentile and considering his complete inability to be successfully potty-trained, this wasn’t really surprising. When I say he could eat as much as an adult, I’m not exaggerating – on one occasion he managed to consume more in a day than a good friend of the family, who had an extremely healthy appetite.

M was diagnosed early on by our GP as having “toddler tummy” and we were told that he would just grow out of it. This was a diagnosis that was going to dog our steps for the next 3 years. At this point, G developed some gastro problems of her own following a bout of food poisoning and another of gastroenteritis, and we established ourselves, as the medical tests proved inconclusive, that she was struggling with intolerances to wheat, dairy and oats. The thought had crossed our minds that perhaps M had similar intolerances, but our attempts to remove these from his diet showed no improvement, unlike for G.

It was armed with all of this knowledge, that I went back to the GP and insisted on a referral to a specialist, having kept an extensive food diary for a couple of months. This recorded not just what and how much M was eating on any given day, but also his sleep patterns (which continued to be poor) and his toileting habits. We also put together a list of our main points of concern. Preparation is key and we wanted to make sure we had a case to put to the specialist.

Our first appointment was disappointing. The specialist listened carefully, nodded sympathetically and instantly agreed with the GP’s diagnosis and left me feeling, once again, a paranoid Mum. He also referred M to the same specialist that G was seeing, in the belief that maybe our children were suffering from the same problem. My gut instinct disagreed and I made my feelings on the matter clear. Although on the face of it, their symptoms seemed similar, there were key differences that I knew had to be taken into consideration.

I have learned that a parent’s gut instinct is possibly the most important thing that any medical practitioner can listen to or, at very least, consider to be as important as the physical symptoms described. I knew deep down that there were something very wrong with my boy, but on the face of it, few agreed. His lack of toilet training was an annoyance we should learn to manage; his healthy appetite nothing of note; his poor weight gain irrelevant as he was growing along his predicted percentile; and his poor sleep patterns the same as every other new parent had to deal with. At each and every appointment we attended with M in tow, he was active, energetic, chatty and showed no sign of the tremendous tantrums he could throw at the drop of a hat at home.

Depending on our gut instincts about M and our determination to find out what was wrong, we kept on battling and refused to accept that it was toddler tummy and that he would eventually get better without any intervention.

Unfortunately, over the next two and a half years, we would need to rely heavily on that perseverance and an inner depth of strength that exceeded what either of us knew we had. We moved from one consultant to another, one hospital to another and even one GP’s surgery to another as we moved house and chased a diagnosis. Finally, in May 2011, we were given the referral that would finally set us on the road to an answer.

7 years to diagnosis

Searching for an answer