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An unexpected hiccup

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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.

Life is a roller-coaster

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Having put M’s scopes behind us, we headed into February and our next appointment at GOSH with lighter hearts. We had been reassured that Dr Hill had identified what the problem was during the surgery and that all we needed was the biopsy results to confirm the diagnosis.

Unfortunately, Mike and I were about to hit a “low” on our roller-coaster ride. The much anticipated diagnosis of Crohn’s Disease was not supported by M’s biopsy results and we left that appointment with no end in sight. There was talk of putting him onto the “Elemental diet”, which entails removing all foods for a number of months until the body has time to recover. The prospect of having to consider a nasal-gastric tube to feed M for any length of time was a tough one and one that Mike and I disagreed over. I felt that we needed to do whatever was necessary to get our boy onto the road to recovery, whereas Mike felt this was too extreme an approach and one that he wasn’t yet prepared to commit to. The registrar we saw suggested that M had some blood tests done to rule out some other possible contenders before we headed down this road and another appointment was set for a month later with M in tow once again.

Another month passed and the day before M’s birthday, we headed back to GOSH. This time Mike wasn’t able to take the day off work, so Mum accompanied M and me on our trek to the capital. We weren’t really sure about what we were trying to achieve and where we were heading. M had now been on his free-from diet for 9 months and whilst we had made progress, it wasn’t enough to satisfy us or the medical team. We were also concerned that M’s weight gain was minimal especially as his appetite had dropped off since starting his new diet and it was becoming a tough game to get him to eat.

We left GOSH with a raft of medicines to add to M’s daily diet. He was prescribed Cetirizine and Ketotifen, both anti-histamines that would help his body recover and repair from the allergic reactions he was still suffering from internally. We also needed to introduce a protein shake called Neocate Active to help him gain and maintain his weight. The biggest challenge was going to be to convince M to drink the protein shakes as they are notoriously difficult to introduce successfully to children and even our GP wished us luck as he wrote the prescription.

True to form, however, after an initially bumpy start and numerous attempts at flavouring the shake, M willingly drank his shake daily and even now, 12 months on, has been known to ask for more than one in a 24-hour stretch! The medicines proved to make a difference to how M was feeling and whilst there were no immediately obvious improvements, M seemed to understand that they would help him feel better and took them with very little fuss.

It was during this time that I became a big fan of Dr. Google.  I wasn’t looking for all the answers to all my questions, including those I hadn’t yet thought to ask, but rather needed to find information about the experiences we were going through and to know that we weren’t on our own. It is important to stress that you do have to be sensible in your approach to using on-line search engines to identify a condition. It would have been very easy to diagnose any one of a number of frightening illnesses, so a modicum of common sense had to prevail.

However, in my desire to understand why both antihistamines had been prescribed and what result we were trying to achieve, I stumbled across a list of symptoms that fitted M to a T. The Fabed website sought to educate and support families coping with something called “Eosinophilic disorders”.  I knew nothing about these conditions, having never even really heard about eosinophils and what they were, but the symptoms rang a bell and I determined to read around it until I became a home-grown expert in it.  I discovered not only Fabed, but also another website called Parentsown, which is home to a series of forums for varying conditions.  Whilst the forums are not massively active, I made contact with a couple of other parents who had children with Eosinophilic disorders and became more convinced that this was the diagnosis we were seeking with M, although the condition was going to haunt me for another 9 months before we got it confirmed as a definitive diagnosis.