Tag Archives: medicines

NEAW 2017 – The journey continues

NEAW 2017 is drawing to a close, but for those of us living with EGID the journey doesn’t stop here. Everyday will continue to involve taking a number of medicines, examining food labels, careful food preparation, monitoring symptoms and hoping that the next day will be even better. Small hiccups might become major hurdles to leap, or may pass by almost unnoticed as we breathe a sigh of relief that they didn’t become something more. Parents will continue to find last-minute solutions to unexpected activities at school, plan trips out with military precision and pull together paperwork, photos and lists of symptoms to take to the next hospital appointment. We will comfort our children whatever their battle, be their most ardent cheerleaders and be prepared to tackle anything and everything to get them the very best healthcare and support. Despite the increasing uncertainty about the EGID diagnosis, we will continue to raise awareness and, more importantly, we will never stop believing in our children.

This is the short film G and M made 2 years ago to explain EGID to their classmates. Whilst M does not have his feeding tube any more, the message is as clear now as it was then and I wanted to share it again:

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

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NEAW 2016 – I am an EGID Mum

Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

llifelived

This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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Round Two: the Pellet study and other adventures

Courtesy of 123opendata.com

Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel.  Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion.  I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help.  However, there were 2 problems we now had to overcome:  M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child.  The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt.  For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time.  It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm.  Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started.  GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. battle I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started.  The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas.  By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

lighttunnelDespite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel.  The final x-ray on Friday indicated that M’s bowel is working more or less as it should.  It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job.  We really couldn’t ask for anything more.  So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

To ID or not to ID

With our holiday fast approaching, I’ve been considering whether M needs some form of medical ID to carry on him.  The concept isn’t a new one to me as I’ve had a Medic Alert bracelet for years for my T1D and regularly make sure the information held on file for me is up-to-date.  I’ve not previously felt it necessary to have such a band for M, but with his diagnosis of EGID and an increasing number of medicines and allergies to consider, I finally bit the bullet and decided to investigate what was on the market.  Part of the impetus to my search was seeing one of M’s school friends sporting one at our recent local music festival for his T1D and realising that this would be hugely important for those occasions when M is out and about without me or Mike on hand to explain.

medicalert

Whilst my Medic Alert bracelet works well for me, the biggest problem would inevitably be the amount of information needed for M and I felt that it just wouldn’t accommodate it all.  I needed something that would appeal enough to M for him to be willing to wear it all the time as well as having enough room for me to note his name, DOB, emergency contacts, EGID, 12 medicines and 8 food allergies.  No small feat, but – and I doubt this will come as much of a surprise – there is something out there that does all this with ease.

20140803_200524The wonderful ID Band company has a range I couldn’t fail to be impressed by.  From bracelets to necklaces, sports bands to medical bags and the all important kids range, plus a whole host of “spares”, some of which you wouldn’t have even thought of until the moment you need them, there is pretty much everything you could conceivably want.  As well as the more traditional metal panels that you can get engraved with the exact wording you want, they also offer the product I was looking for – a wristband containing a card ID that you can personalise as necessary and the whole band is completely waterproof.  Cautious as ever, I browsed the site to check there was nothing better available, but kept coming back to this one band in particular.  The card ID was big enough to take all of M’s details, I could buy extra cards for when things change and the sizing was ideal for M’s small wrists.  Even better I could get it in green camo, just the thing to appeal to my small boy.

20140803_200443I placed the order on a Thursday afternoon, with my fingers crossed that it would arrive in time for our holiday and to my astonishment, the parcel dropped through our door the very next day.  I filled the information out and presented it to M, hoping that he would be keen to give it a whirl and not reject it out of sight.  I needn’t have worried – M was desperate to try it on straight away and has been more than happy to wear to his holiday club this week.  Once again, a massive double thumbs up from both children (well G wanted one too to state her allergies) and a hearty recommendation from this very satisfied Mum.

Medicines galore!

M's daily batch of medicines

M’s daily batch of medicines

Today’s post was going to be a relatively short one.  One to just give you a glimpse of the amount of medicine M takes every day.  One to raise your awareness of the medical impact of this condition; but the thing is, taking 9 medicines on a daily basis is never going to be a short story, even though compared to some EGID children, this isn’t necessarily a lot.  M does a great job of taking his daily doses and has moved on from last summer’s need for Grandma’s jam to being grown-up enough to take his capsules the “adult” way, sometimes even swallowing both of his lunch tablets at the same time – something I don’t think I could do.  I’m also going to attempt to explain what each medicine does and why he takes it, but keep in mind that I’m no medic and so my knowledge is that of an EGID Mum, nothing more.

Medicine Dose When taken Why?
Calcichew D3 1 tablet
  • Breakfast

 

A calcium supplement to ensure calcium intake is sufficient to protect bones due to malabsorption issues
Movicol 1 sachet mixed with 65mls milk
  • Breakfast
An osmotic laxative, which means that they relieve constipation by drawing water into the bowel to soften stools. Used to ensure M doesn’t get impacted again and we can adjust the dose as we need
Cetirizine 5mls
  • Breakfast
  • Dinner
This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction.   Typically used to help skin reactions and hayfever.
Ketotifen (Zaditen) 5mls
  • Breakfast
  • Dinner
This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help symptoms of allergic rhinitis.
Nalcrom (Sodium cromoglicate) 1 capsule
  • Breakfast
  • Lunch
  • Dinner
  • Before bed
An anti-allergy medicine specifically used to prevent the symptoms of food allergy. It works to prevent the allergic reaction happening when food is eaten
Lansoprazole 1 capsule
  • Lunch
A Proton pump inhibitor (PPI) used to reduce the amount of acid produced by the lining of the stomach when digesting food and thereby reducing acid reflux
Senokot 5mls
  • Dinner
A stimulant laxative used to encourage the muscles of the bowel to move the stools through the body and prevent constipation. Again, we are able to adjust the dose as M needs
Neocate Active 1 sachet mixed with 300mls water
  • Evening
An elemental feed that contains amino acids, carbohydrate, fat, vitamins and minerals. Used to provide dietary supplementation for children with multiple food allergies. In M’s case, we believe that this is what helps him maintain his weight
VSL #3 Probiotic 1 sachet mixed into his Neocate
  • Evening
A probiotic supplement frequently used in patients with Inflammatory Bowel Disease (IBD). It works by forming a protective barrier on the walls of the GI tract

sweetsAs well as keeping on top of all that and making sure M has the right medicines in the right doses at the right times, we also have to make sure he’s eating well and nothing creeps into his diet that shouldn’t.  Tonight was “Film night” at school and I was the parent standing at the tuck shop, scanning the ingredients of each and every item being sold to check what was and wasn’t M-friendly!  In comparison, our meals today were a lot easier:

M

Me

Mike

Breakfast
  • Milk (200mls)
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sakata rice crackers (2)
  • Fruit stars

 

  • Sakata rice crackers (6)
  • Peanut butter
  • Celery
  • Orange

 

  •  Sakata rice crackers (10)
  • Peanut butter
  • Orange
  • Apple
Dinner
  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, coconut cream and egg-free mayonnaise)

 

  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, courgette, mushrooms, tomato, coconut cream and egg-free mayonnaise)
  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, courgette, mushroom, tomato, corn, coconut cream and egg-free mayonnaise)


Snacks
  • Sliced pear (1/4)
  • Nakd cocoa orange date bar
  • Dried apricots (3)
  • Sakata rice crackers (2)
  • Peanut butter
  • Sweets
 
  •  Carrot cake cupcake

 

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.

Grandma’s Jam

SAM_1312

A couple of weeks ago, as we were talking about him starting his new medicine soon, the impact of this current flare up on M became evident as he sobbed in my arms “What’s the point Mummy?  The medicine won’t work because none of them are making me better”.

To hear that your 7 year old is feeling that low and despondent simply breaks your heart. I struggled with knowing how to encourage him to try yet another medicine, knowing that so far our 2 year journey hasn’t waved the magic wand we’d all been hoping for and, whilst things are so much better than they were back then, there’s still an uphill struggle to face.

The biggest battle was finding a way for M to take it.  He has to take this one 4 times a day, which means I have to send it into school and can’t send it in its capsule form because he finds that too difficult to swallow, though he continues to persevere to take it the “grown-up” way.  The registrar at GOSH suggested we broke the capsule and mixed the powder into a drink or his meal.  The taste is vile and tainted everything we tried.  He didn’t like it mixed into his food or drink and I was left scratching my head about this one.

As I sat at the kitchen table wondering how to avoid pinning M to the ground and forcibly pouring it into his mouth – don’t laugh, I’ve been there before – I knew where to seek the advice I was after.  Thanks once again to the amazing FABED community, I got a great suggestion which would not only make it more palatable for M, but also easy for the school to administer.

Jam.

SAM_1302

A spoonful of jam into which you mix the contents of the capsule is an ideal M-sized mouthful and one that he’s willing to take.  Grandma’s home-made jam, sent all the way from Canada, is the perfect vessel for his new medicine.  He loves Grandma’s peach jam anyway, but his preference for his medicine is strawberry.  Fortunately, a care parcel arrived at the beginning of July containing 3 new jars of the strawberry elixir and that will certainly help.

SAM_1309The only question now is, having discovered the secret to successful medicine-giving for M, just how long this little lot will last?!

7 jars and counting

7 jars and counting