Hyper-sensitive M

lighttunnel

Now many of you might have looked at that title and wondered on the use of “hyper-sensitive” in reference to M.  Over-sensitive may well have seemed reasonable and I’d agree, having seen the wild mood swings and tantrums that sometimes rock my youngest, but hyper-sensitive was a word that I chose deliberately.

You may remember from a blog back in April that I had been awakened by a distressed M in the early hours of the morning.  What I didn’t share back then was that the reason behind his disturbed night was an unexpected allergic reaction to a mint.  Yes, you read that correctly, the humble mint has caused a month of suffering for M and we are only now beginning to see a faint, flickering light at the end of that very dark tunnel.

I have to admit to feeling like a dreadful parent once I realised the cause behind the relapse.  Perhaps the quick scan of the list of ingredients hadn’t been enough?  Perhaps I had missed the warning that said it contained something that M was allergic to?  Perhaps I need to insist that he doesn’t have a treat when with friends, but only ever eats what I’ve provided.  Well, the last point might be valid, but in this case, I’ve discovered that actually there was nothing that I could have done differently and my guilt was unjustified.

The only reason I know that the mint was the culprit is thanks, yet again, to my mighty friend, Dr Google.  The night after that very disturbed one, having seen the consequences of the unexpected relapse throughout the day, I examined in minute detail the food diary we keep for M to see what, if anything, was different about his diet.  As part of the process of discovering exactly what M is allergic to, I keep a daily food record of every item of food that passes his lips as well as noting if he’s been feeling unwell, had a temperature or has had a soiling accident and so I knew that the answer to our puzzle was likely to be found in there.

food diary

The previous afternoon we had met up with a school friend of M and his family for a play and a catch-up away from the playground.  Whilst there, M’s friend B asked if M was allowed to have a Mento mint.  I scanned my eyes over the ingredients quickly and saw nothing to suggest that M couldn’t have one.  I gave my permission and the boys ran off to share the packet between them and their big sisters.  Using Google the following evening, I discovered to my dismay that the glucose syrup contained in Mento mints is derived from wheat, which is not stated anywhere on the packaging itself.

After the exclusion of gluten from his diet back in January, we had seen the disappearance of the last allergic reaction as M finally become fully toilet-trained for the first time in his 7 years.  We celebrated 30 days of being accident-free with a trip to Build-a-Bear workshop and M became much happier and calmer in himself as he no longer needed to worry about whether he was going to get to the toilet on time or not.  Now that had all disappeared.  I couldn’t believe that something so seemingly simple was the cause of a great deal of heartache and frustration for the whole family as M went into relapse and we were back to square 1.

We had an appointment booked at GOSH for the beginning of May and I looked forward to the opportunity to discuss the problem with the team there.  Their initial response was somewhat sceptical, I have to confess, as this product is considered safe by Coeliac UK, who are a respected advisory group to those suffering from wheat and gluten allergies.  However, I knew that these were the only thing that could have caused M’s reaction and was adamant that this was the problem.  Fortunately, my standpoint was further strengthened by the fact that we knew that M reacted to soya lecithin despite being assured that this is usually safe for soya-allergy sufferers.  This we had sadly discovered was not true for M at Easter, when he had a mild reaction each time he ate any of his “everything but soya lecithin free” Easter egg.

The conclusion was simple.  M suffers not only from multiple food allergies, but is considered to be hyper-sensitive to them.  This means that whilst some ridiculously high percentage of wheat- and gluten-allergy sufferers will not react to by-products such as this glucose syrup derived from wheat, and likewise soya-allergy sufferers will not react to soya lecithin, M will do.  He may grow out of these as he gets older, but he might not.  He could develop further allergies, or he could not. There is no simple answer to the problem of having a hyper-sensitive, multiple food allergy suffering child.  I can ensure that as much of the food I buy is as M-friendly as possible and I can attempt to restrict him to only those treats I’ve researched and deemed safe, but there will be times when we might just have to take the chance and I will have to support him and deal with the consequences.

rainbow

The most difficult challenge for us now is taking M anywhere.  The risk we have to consider is whether M will be okay with a food if we don’t know categorically what it contains and are certain it’s safe.  That immediately restricts the restaurants we can take him to on the occasional day out and means that I am going to be paranoid and become “that Mum” who is over-anxious about what their child is being fed in anyone else’s home.  The truth is I don’t mind being labelled as a fussy Mum, I’m sure I’ve been called much worse, if it ensures that we get M back to the road to recovery and keep him there for a few months at very least.

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4 thoughts on “Hyper-sensitive M

  1. Pingback: This summer | M's 7 year journey

  2. Pingback: The Great Easter Egg Hunt | 7 years to diagnosis

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  4. Pingback: Best food trial EVER – and just in time for Easter! | 7 years to diagnosis

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