Tag Archives: ill health

“Nothing can hold us back”

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This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition.  Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward.  There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here.  The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference.  The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

M

Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face.  M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH.  As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did.  We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child.  To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

Mr Sandman

Sleepless nights are the bane of many new parents’ lives.  You don’t realise just how dependent you are on 8 uninterrupted hours until you no longer have them.  We were truly lucky with G.  She was one of those very irritating babies who slept through from 6 weeks old and quickly developed a habit of 10-12 hours each night, meaning we never really suffered with early mornings either.

The first few weeks of M’s life lulled us into a false sense of security.  He spent many of those early days sleeping, something that is typical of preemie babies I’ve learned.  However, once we’d hit, and passed, the magical point of his due date, everything changed and not for the better.  From the age of about 4 or 5 months to the present day, I can count the number of full nights’ sleep on the fingers of one hand.  Actually, I don’t even  need that hand to enumerate those memorable occasions because the only undisturbed nights that Mike and I have enjoyed in the last 8 years are those when M has been staying with my Mum.

20140203_190757Last year, we thought we had finally turned a bit of a corner with M’s sleep habits.  We had persuaded him, through the lure of sticker charts and a much-desired Lego Millennium Falcon, to start going to sleep in his room.   His bedroom was revamped for his birthday to match his passion for everything Lego Star Wars and became a place befitting of his 7 year-old status.  I won’t pretend that it was all plain-sailing, but we gradually moved away from the constant shouts downstairs for food or stories until he was finally falling asleep in his own bed, albeit close to 11pm most nights.  His 2am visits into us also slowly started to disappear and it really felt like the sleep issues were on their way out.

Unfortunately, we were once again counting our chickens too soon and, in the middle of 2013, everything reverted back to the old “norm” with a bump.  I can only assume that a big part of this dramatic shift was the unexpected decline in M’s health that had started in the April.  Since then, M has been almost completely unable to fall asleep by himself and spends almost every night pleading with us to “settle” him at bedtime.  It doesn’t matter has much settling we do, within minutes of us leaving him tucked up in bed and heading downstairs for our own dinner or jobs to do, M is up on his feet, singing and dancing to whichever CD is that night’s pick.  The rhythmic thuds that accompany our evening meals are a constant reminder of just how awake he is, but he seems unable to switch off and relax.

Around 9.30pm the questions start floating down the stairs: “Can I have a snack because I’m starving?”, “I need a drink – I’m dying of thirst” or, my personal favourite, “What time is Mummy coming to bed?”  It is this last request that inevitably traps me between a rock and a hard place.  If I go upstairs after about 10.15pm, M will climb into bed beside me and be fast asleep within 10 minutes; BUT any attempt made too early is a complete disaster.  wheres wallyM will just lie next to me, hunting for Odlaw, Wenda and the rest of the Where’s Wally? gang, chattering away and almost without fail, I will be in dreamland before him.

Since Christmas, things have been getting progressively worse and Mike and I are both almost at wits’ end.  This last weekend was spectacularly bad on the sleeping front and we’ve had to do some quick thinking to try and get things back on track.  One of the biggest complaints we have from M is that he is hungry, regardless of how much he’s eaten throughout the day. hot choc To avoid a repeat of Saturday’s demand for a snack at 11.45pm, we have introduced a relatively substantial snack for M before he goes to bed.  As soon as both G and M are washed, in their pjs and otherwise ready for bed, they can each select a snack or two to have, along with a mug of either hot chocolate or hot milk and honey.  We tried this for the first time last night and appear to have scored an early success with no subsequent food necessary before he went to sleep.

Secondly, we’ve given M an incentive to improve his behaviour at bedtime and reduce his demands on us.  We’re off on a big family holiday later this year and both children are keen to earn some spending money for whilst we’re abroad. M’s modest request for £5.90 for the 3 weeks has been judiciously upped a little and he can earn stickers (yes, we’re back to that damn reward system once again) for working hard to achieve this target.  The stickers are awarded retrospectively, so last night’s bedtime routine and today’s behaviour will be assessed at snack-time tonight and stickers given accordingly.

Draining as all this is, I have been able to draw some comfort from discovering that we are not the only EGID family struggling with sleep issues at the moment.  Another Mum recently posted about her anxiety over her child’s sleeping on the FABED forum and asked for help. Within a relatively short space of time, replies flooded in from across the country, from other parents who have been there and who are quite probably still dealing with it.  I found it particularly interesting to read the perspective of a now adult EGID-sufferer, who was able to explain to us all exactly how the condition can impact on the body and therefore on sleep.

sandman

So, for all you parents out there who are longing for a good night’s sleep, believe me when I say that I feel your pain and will be hoping that the sandman visits your homes sooner rather than later tonight.

New year, New plan

The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team.  Mike and I had our list of queries drawn up and were determined not to leave without some answers.  Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer.  It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner.  My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds.  We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all.  I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy.  This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it.  We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months.  He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet.  Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation.  We’ve now got 2 more to add to the daily regime:  Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition.  If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones.  So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all.  I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian.  She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms.  We agreed to tackle the 2 that he has complained about when suffering from reflux.  His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed.  potatoesSo, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries.  Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped.  We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet.  It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

Eating my words

For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living.  As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M.  We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.

Courtesy of connectsociety.org

Courtesy of connectsociety.org

Sadly, our experience of CAMHS has been less than favourable.  The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition.  She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t.  At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.

ticklistIn the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input.  I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan.  However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.

And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery.  I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting.  I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from.  At this point, my expectations were low – and about to be blown out of the water!

T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could.  I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case.  We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.

She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling.  She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues.  Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want.  We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.

Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day.  My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth.  T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.

We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round.  We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.

Ringing in the New Year!

As we count down to the New Year, I have to confess to being glad to saying goodbye to 2013.  The last 2 years have been tough for our family and I’m looking forward to a more positive 2014.  We’re still not at our ideal place with M, but we now have a diagnosis and every day sees us taking a step – be it forwards, backwards or just to tread water to stay where we are – and we’re hoping to make some real progress in the 12 months ahead.  All that being said, there have been many highlights of 2013, not least of which has been the adventure of starting this blog and below are a few of my favourite:

Wishing you all a happy and peaceful 2014. May your new year wishes be fulfilled.

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!

Fabed needs youFABED (Families Affected by Eosinophilic Disorders) is a charity close to our hearts.  As I’ve mentioned on many occasions, FABED is a small charity supporting families like ours who are living with the challenges of a child, or children, diagnosed with eosinophilic disorders.

In the last 12 months since we’ve had M’s diagnosis, we’ve struggled to get to grips with the implications of EGID for M: how we can manage his health, coping with the impact of it on, not only M, but our family as a whole and how we communicate and explain this chronic illness to those surrounding us.  In particular, we’ve found it hard to fully explain the effects of EGID on M to his teachers and school as they rarely see the negative side – the sleepless nights, the chronic pain, the diarrhoea and the frustrations – because M just gets on with life at school and keeps his melt-downs for home.  Without the support of FABED and its wonderful families, I’m not sure how well we would have coped.

FABED

FABED is keen to produce an educational leaflet specifically for schools, separately aimed at both the Primary and Secondary education sectors. This will raise awareness of a rare, but increasingly prevalent condition, which can take years of struggle to diagnose. Helping schools to understand this disease will help alleviate just one of the many areas that families have to deal with.

This is where YOU can help.  Galaxy Hot Chocolate are looking to help small, local community based projects and community minded people through their GALAXY Hot Chocolate Fund. Eighty £300 awards will be given to help small groups and we would love for FABED to receive this money and achieve their goal.

A vote from you will make a big difference to children like M and families like ours, so please take a moment and add your vote.  Just click on the link below to cast your vote and remember to confirm from the e-mail sent to you:

http://www.galaxyhotchocolate.com/fund/fabed

thank-you-languages

Celebrating tiny lives

I’ve discovered this weekend that blog posts are a bit like buses.  You wait ages for an idea to come along and then suddenly you get 2 or 3 at once.  Having dipped into a mild panic that I had nothing useful, or interesting, or witty, or, indeed, anything at all to write about this week, suddenly I was overwhelmed with a plethora of possibilities all at the same time. Despite the temptation to write manically today, I’ve decided to pace myself and keep them as separate pieces and feel confident that I can keep myself, and hopefully you, entertained for a little while longer.

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Unbeknown to me, yesterday, November 17th, was World Prematurity Day.  This day seeks to raise awareness of the 60,000 babies who will be born prematurely in the UK this year. Every premature arrival is fraught with panic and anxiety, no matter what the outcome.  The new parents are left in a state of panic as they prepare for the arrival of a much loved child and wonder what new challenges they will face in the days, weeks, months and even years to come.

Both of our children were born prematurely.

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G is our “technical” preemie.  She arrived just over 3 weeks ahead of her time, evidently anxious to celebrate Christmas as soon as she could. thereby just about falling into the premature category.  She was a healthy 8lbs and was born after a relatively easy c-section – oh and 2 days of induced labour, which was not so relaxed.  She was able to stay with me in the recovery room for about an hour after birth before her blood sugar levels dropped and she was carted off to SCBU (Special Care Baby Unit) for monitoring.  Two days later, she was stable enough to be back on the maternity ward with me and within a week, we were back home as a new family of 3.  As I’ve said before, my pregnancy with G was relatively smooth, my T1D (diabetes) was well-managed and we had no real concerns about her health whilst she was on SCBU. Despite the sudden decision to deliver her ahead of schedule due to some possible problems with my placenta, G was a healthy and happy baby.

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In comparison, M came crashing into our world after 7 very tempestuous months and with an accompanying birth story that still causes shivers to gallop down my spine.  He was not dangerously small, an extremely healthy 5lbs 12.5oz at 7 weeks premature, but he wasn’t breathing when born and was whisked off almost immediately to NICU (Neonatal Intensive Care).  I have no clear memories of M’s birth other than the fear that pierced my wandering consciousness as the doctors resuscitated him and the look on Mike’s face as he rushed off to NICU with M, trusting my recovery to the medical staff in theatre.

In both cases, it is thanks to the hard work and support of the dedicated staff in SCBU and NICU that we came home confident that we could care for our preemies.  Against the odds, M was discharged just 3 weeks after his birth and a full month ahead of what everyone had expected.  We spent time on ward with parents whose children had arrived even earlier, were born even smaller and were struggling even more.  Of course there were moments of extreme heartache, but the staff were relentless in their determination to give our preemies the best start in life they could have and made every moment of a difficult time, just a little more bearable.

So, I’m proud to be Mum to 2 preemies who are growing up fast and to be marking their safe arrival into our family’s world.  This blog post may be a day late in celebrating tiny lives, but let’s face it, it’s about the only thing that’s come late when you think about our terrible two.

A little act of thoughtfulness

Garfield and I have a lot in common!

Garfield and I have a lot in common!

I never used to dislike Mondays, but they are rapidly becoming my least favourite day of the week. I’m finding that the weekly treadmill of Monday to Friday work, school and home management is beginning to take its toll.  It’s not that I hate any one element in particular, but put them all together and I find my stress levels soaring.

This week started with a slightly louder bang than usual.  As well as dealing with getting the kids up, showered, dressed and breakfasted before school, I found myself having to make a doctor’s appointment unexpectedly.  Not, as you might well expect, for M, but this time for G. She suffers with eczema on her right arm, which flares in typical eczema fashion, but rarely travels away from the crease of her elbow.  I  have previously noticed that just like me, her eczema flares when she is worried or stressed and had sought a natural remedy to treat the area.

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At the Allergy and Freefrom show back in June, I had come across the company Earthbound Organics, who’s highly knowledgeable representative was able to suggest their Chickweed & Calendula cream as a treatment.  It wasn’t a cheap investment – Mike gulped hard when I paid the price – but it sounded like a good, natural remedy for G’s skin irritation.  We’ve been using it as needed since June and have found it brings relief.  I’ve also used it when my own eczema has flared and even daubed it relatively liberally on M’s rash, which was the result of his newly discovered allergy to raspberries.

This weekend, however, G complained that the itching was spreading and when I took a look, I discovered that it had now spread up the length of her arm, under her armpit and was beginning to break out on her left arm too.  I suspected that neither the E45 emollient cream nr the Chickweed & Calendula cream would work this time and so off we headed to our local Medical Centre to see one of the team of GPs after school.  We were there barely 5 minutes, but he agreed with me and quickly prescribed a low dosage hydrocortisone cream to see if that would help.

45 minutes later, we were back home with prescription in tow and a sinking heart as I prepared to tackle that “homework vs. dinner v.s playtime vs. screen-time” argument that seems to break out almost every evening in our household.  It was then that I received my lovely surprise.

M picked the post up from the doormat and passed it to me. It consisted of an Amazon parcel containing my next book for my Book Club and a large silver envelope bearing my name.  I tossed the book to one side and eagerly ripped open the intriguing envelope. Inside, was a card emblazoned with the name of a local beauty salon and I opened it wondering what on earth I would find inside.

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What I found was the lovely message you can see above.  An unexpected gift from an old school-friend and her family, who happen to be M’s godparents too.  A special something to treat me, realising that, as is the way of all mothers, I would come bottom of my list of priorities.  A treat to say “Relax” and “Spoil yourself”, when it’s highly unlikely I’d have stopped to take that me-time of my own volition.

A little act of thoughtfulness that let me know that there are people out there thinking of me, supporting me and reminding me to take care of myself as well as the children. Thank you dear friends for taking the time and trouble to show that you care and I promise I’m going to book in that stress-relieving massage before Christmas, even if it kills me!

Welcome to the House of Fun!

It may seem an unlikely description of M’s week-long stay at GOSH, but we did end up having a week that was filled with fun and not just fear.  I had dreaded the tedium of being confined to the ward and had managed to pull together some games and treats to see us both through.  What I hadn’t anticipated were the events and activities that would be “on tap” at GOSH itself.

Courtesy of magicfree,net

Courtesy of magicfree,net

Sadly M didn’t manage to get to the first of these opportunities as we were battling the interminable wait to get him admitted onto the ward on Monday morning and the rest of the week were barely able to leave his bed or the ward.  However, the week we were there was celebrating “50 years of National Play in Hospital”.  It recognised the hard work regularly put in by fully trained play workers, who go into the hospital setting and entertain the children who have been admitted.  The launch on the Monday included face-painting, magic shows and other entertainers to give that day’s visitors an escape from the often frightening reality of being in hospital.  You can read more about this special week here.

Courtesy of scouts.org.uk

Courtesy of scouts.org.uk

Tuesday’s adventure started with a visit at 6.45pm from the leaders of the GOSH Scouts and Guides group.  They had avoided disappointment by checking with the ward nurses whether there were any children that would be able to go to the weekly Scout meeting, either on their own or accompanied by their parent.  They appeared at the curtains to M’s cubicle and invited him along for an hour of creativity and socialising.  He refused point-blank to allow me to go with him and merrily trotted off with another child from the ward – disconnected from his drip and in a state of excitement to be escaping.

Just after 8pm he re-appeared, clutching a treasure box, leaf bracelet, sheets of word-searches, puzzles and colouring, and his new most treasured possession – his first Scouts badge.  M was filled with stories of the 10 other children he’d been with, what they’d been up to and, most importantly for him, the fact that several of the others had also had NG-tubes and the news that one little girl was even “drinking her milk through it, Mummy!” Scouts is a new experience for M, but the opportunity to not stand out from the crowd because of his tube and his allergies was one he couldn’t have missed and he would have loved to have stayed another week in hospital just to go to the next meeting!

20131020_184703Treats number 3 and 4 both arrived on Wednesday.  The first was the surprise arrival of a parcel from M’s godmother, Auntie L.  She had packed a “Bored box” with an array of treats to satisfy any small  boy – Top Trumps cards, a Lego Star Wars set, a magic set, 3 packs of Angry birds trading cards, a pack of silly putty and other bits and pieces were hidden inside.  M didn’t know where to start, but slowly and surely he made his way through the box, which kept him occupied not just for the rest of the week, but for days afterwards too.  Along with the box, M also received several Get Well cards from friends and family, which brightened his day as he loves to receive post and often moans that nothing ever drops through the door at home for him.

The final surprise for the week, was a visit from Dr Mattie, a clown doctor from the Theodora Children’s Trust.  The use of Giggle Doctors in Children’s hospitals has come under debate many times, including recently in an article published by The Guardian newspaper.  Whilst it cannot be denied that some children and adults are frightened by clowns – indeed, one of M’s nurses commented that the Clown doctors gave her nightmares – they cheered M’s day. M wasn’t amused by their jokes and he wasn’t that interested in the “Spot the difference” he was given, but he waited anxiously to check that Dr Mattie would stop and chat and not miss him out of his rounds, and was fascinated by the unbreakable bubbles that clung to every surface and constantly checked to see just how long those bubbles would last.  Perhaps that old adage is true and laughter really is the best medicine.

He might not be everyone's cup of tea, but he certainly made M smile.

He might not be everyone’s cup of tea, but he certainly made M smile.