A Knife’s Edge

*****Warning – readers of a sensitive disposition should be aware that this blog contains considerable poo and puke chat*****

I have told you all about Daisy’s propensity to projectile vomit.  I mentioned a few weeks ago that I was going to revisit reflux medicine.  Daisy was on ranitidine as a tiny baby and when Drs upped the dose when she was about 9 months old we discovered that it was making her more sick.  So we abandoned it.

Daisy used to be sick between 1 and 3 times a week but I would say that for the past 5 months or so it has been on average once a day.  This is about the only thing that gets me down about her condition.  Every once in a while I go on a one woman mission to try and get to the bottom of it.  I go round in circles a few times and usually end up back where I started.  A few weeks ago I embarked on another of these futile missions.  Or so I thought.

We started with omeprazole.  It wasn’t long before I realised this too was making her more sick and abandoned it.  Back to the Drs I went.  A few friends had said they had given their babies gaviscon when they had reflux so I asked about this.  The Dr said it would be worth a try.

After a week or so I noticed that the wet cough that she’s had for donkeys seemed to have disappeared.  She was also sleeping a lot more peacefully; Daisy can freak people out when she sleeps as some of the noises make you wonder if she is struggling for breath.  Something that keeps Glamorous Grammy on her toes when she stays over there.  There was no reduction in her vomiting but it definitely wasn’t any worse so I decided to persevere.

Daisy also struggles with her bowel movements and so has been on movicol for a while now.  It’s not that the poo is particularly compacted and as such I’ve always found it strange that it causes her so much pain getting it out.  I recently received her genetics report, which described that in the region of the chromosome that is deleted, there are 185 known genes.  Mutations in one of these genes is known to cause Hirschsprung disease.  This is an intestinal disease whereby nerves are missing in the bowels and, long story short, severe constipation results.  Now I am making my own links here but it makes sense to me that if she is missing this gene in some of her cells that maybe she doesn’t have all the nerves she needs to make her bowels work properly.   Then again I may be putting 2 and 2 together and getting 5!

Back to my original thread.  After a few more days Daisy hadn’t had a poo.  Now when she hasn’t had a poo this also increases the projectile vomiting.  Something to do with backwards pressure from the bowels.  Now at this point I was tempted to abandon the gaviscon but my feeling that it was doing some good made me decide to keep going with it.  So I upped the movicol and reduced the gaviscon.  At the same time I remembered that increasing fluids can help constipation so I decided to put 60 mls of water into her an hour before every feed.  I figured that would give enough time for the previous feed to have been digested and enough time until the next feed to ensure it would be absorbed and not make her too full.  It’s quite the balancing act.

This seemed to do the trick and cleared out her bowels before the vomiting increased.  Feeling like I had found the right balance of movicol, gaviscon and water, I continued in the same vein.

I can’t bloody believe what I am about to tell you.  We have gone FOUR WHOLE DAYS WITHOUT A PROJECTILE VOMIT!!!!!!!!  This hasn’t happened for MONTHS and MONTHS and MONTHS.  I am ecstatic.  Probably should’ve opened a bottle of prosecco to celebrate instead of writing this blog.

I think it might be the water.  If it is the water, I can’t believe that I have had two and a half years going round and round in circles and all she needed was more water!   Why the hell has no one thought to suggest this to me?  I thought I’d check and see what Google had to say about it and found this article (for anyone interested) all about the role of water in reducing symptoms of reflux.

I’ve not quite got the balance right yet though.  Daisy managed to poo through three layers of clothes today.  One of those situations where the only thing to do is put her straight in the bath.  Then you realise she is swimming in her own shit and a shower would have been more sensible.  I am exceedingly thankful that this poo didn’t decide to say hello while we were in the Hydropool.

This leaves me teetering on a knife’s edge.  I know that it can’t be that simple.  She is bound to do a projectile vomit sooner or later.  But I am happy to take once every few days over every single day.


2 thoughts on “A Knife’s Edge

  1. Sounds like the gaviscon is doing something as the cough was almost certainly related to the reflux if it went/reduced with the gaviscon and you did that before the water. Beanster had gaviscon as a baby and needed much more water as it bungs them up. Hope you’ve hit upon something that keeps working.

    Liked by 1 person

  2. Fantastic news Sally so happy for you. They do say that water does amazing things glad to see it’s working, my fingers and toes are crossed

    Liked by 1 person

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