Tag Archives: Movicol

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

 

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Viva Portugal – and our answer on a postcard!

Courtesy of mapsof.net

Courtesy of mapsof.net

Preparing for this summer’s holiday to Portugal went well as we completed the Pellet study with M and I finally answered the question of how to carry all of M’s medicines and foods without paying for an extra bag. So, all I needed to do in the last two days was pick up our holiday money, pack the suitcases and speak to GOSH about the test results from the abdominal x-ray.

Needless to say, the first two list items were quickly ticked off and I even managed to fill the extra suitcase for M without forgetting anything essential.  Tracking GOSH down and speaking to them sensibly took a little longer.  I was anxious to discuss the results of the Pellet Study and what the next step was before we went on holiday, especially given that M’s move up to his new school was imminent soon after our return.  The registrar I finally spoke to on the Friday morning had a real mix of news for me.

The good news was that the x-ray showed that M had passed most of the radiopaque markers – his x-ray was a mix of images 1 and 2 – which suggested that there was no real issue with his gut motility.  The bad news was, that despite 12 days on an increased level of Movicol, M was still heavily impacted. What wasn’t clear was whether we had ever successfully emptied his bowel or if he had become re-constipated during the 5 days he was not taking the Movicol during the study.

The next decision was not an easy one to make, especially with a week abroad on the horizon.  We had to continue with the Movicol, taking 4 sachets daily for the week we were away, which would hopefully keep things moving and empty his bowel out as was so desperately needed.  Both the registrar and I felt it was likely that the 4 sachets would be too much for M’s system, but we really had no other choice and reluctantly I agreed, with a follow up phone-call planned for the first Monday back home. Into the suitcase went the required sachets and extra packs of pull-ups to see us through the week.

Despite the challenges we knew this would bring, we were determined to enjoy the much needed break and the sun.  We set off with plenty of time to spare “just in case”, breezed through check-in and customs, survived the 2 hour wait to our flight and eventually landed safely in Faro.  An hour’s taxi ride to the resort, a quick late night tuna pasta dinner (courtesy of the supply suitcase) and we were into bed for a good night’s sleep before our holiday started properly.

SAM_1590  SAM_1591

The week was amazing.  The kids loved every moment of both the beach and the pool and  we were all amazed at how much their confidence had grown in the last year.  M revelled in splashing about and jumping waves, which was something he wouldn’t do the first time we went just 2 years ago.  He was also brilliant at wearing a pull-up under his swimming trunks to avoid any unwanted problems in the water.  It was far more challenging to change him because of the combination of damp bodies, tight-fitting pull-ups and wet trunks, but we survived it.

He had his moments and we had a couple of major melt-downs as he let out his frustrations about his condition and all that was going on.  Unfortunately, Mike suffered the brunt of this as he’s not usually the one on-hand all day, but he survived it too. The upside is that it gives more ammunition and examples to pass on to the CAMHS team when we see them later this month to argue the case for M needing more support to cope with his emotional and psychological well-being.

M's trusty friend "Cat", came on holiday with us and the maids made M smile by dressing him in M's pjs

M’s trusty friend “Cat”, came on holiday with us and the maids made M smile by dressing him in M’s pjs

We even managed our meals.  This year we chose to eat breakfast and lunch in our apartment every day, rather than venture to the breakfast buffet provided at the hotel.  It was a difficult decision because both children love the opportunity to chose from the vast array of food available, but we knew that it would be a far too limited choice for M.  Instead we ate out every evening at a number of local restaurants along from the hotel.  One of the best things about eating out in Portugal is that it was surprisingly easy to accommodate M’s food restrictions.  His love for most things fish and seafood meant that we were able to order fresh fish that was cooked in olive oil with a side order of chips and he was satisfied.  We found that most of the restaurants were helpful in preparing prawns or fish without any sauces and we skipped dessert as none of us needed it.

As expected, the movicol made the week difficult, but it made a big difference to be dealing with all the stresses and strains in a sunnier climate.  We all needed the break from the daily grind at home and I came back feeling refreshed and ready to tackle the challenges of the new term.

One of the many sandcastle creations M built during the week

One of the many sandcastle creations M built during the week