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Cerebral Palsy and Constipation

It’s 4 weeks since I last posted. The reason being it has been pure hell at home. Ella and her brother have been very ill with throat infections, thrush and raging temperatures. Unfortunately, Max had to miss his herniotomy operation at Great Ormond Street because of a 39.5oC temperature.

However, this post is about the nightmare Ella has had over the past 3 and a half weeks. When she fell ill, we were concerned about her breathing as she only recently came off the oxygen support required for the chronic lung disease.

So we took her to the GP’s and she was diagnosed with a throat infection. A weeks worth of Penicillin had no result and everything remained the same.

On the day that Max went to GOS, Ella had one of the worst days yet. She was crying and screaming inconsolably for most of the day, and when I got home, my mother-in-law was trying to sort out the cannulae to get her back on the O2.

The entire night was hideous. Ella doesn’t sleep well at the best of times, but this was something else. The next day I took her to A&E for assessment.

I thought, “As soon as we arrive, they’ll see exactly how much distress she’s in”. Guess what, the little monkey decided that as soon as we arrived in A&E, she would be all sweetness and smiles! Unbelievable.

Anyway, having sat there for 2 hours before seeing a nurse, I then had to wait another couple of hours to see a medical student, and then finally a registrar!

[Quick rant: what annoys me most is that we have to recount her history every single time we go to A&E. I'd be there all day if I had to do that; why not go and fetch that big fat library of files you have on her from the 5 month stay in NICU?!]

So, having reviewed her, it was decided that her throat infection must be viral as the antibiotics hadn’t worked (that old chestnut!). In fairness, it was the most likely reason. So we took her home and continued to give Calpol for pain relief.

Nothing changed.

Back to A&E, through the same old routine, and this time she got to see one of the consultants. After an extensive neurological and general checkup (including x-rays), it was decided that it must be her acid reflux. Another two or three days passed and we didn’t see any changes.

We then got a call to go back for a review with a radiologist consultant.

To cut a long story short, he had noticed some abnormal gaseous patterns in her bowel. They wanted to rule out a diaphragm perforation, but it turned out that she had a faecal impaction (hard poo blocking the bowel). Constipation is quite common with CP because the guts are usually more sluggish.

After several visits, we finally started to get to the bottom of it (excuse the pun). You have to persist with the health professionals. It can be a long slog to find out what’s going on, but you mustn’t be deterred.

Finally, Ella is starting to settle a bit now having been on Movicol for the impaction and continuing the Lactulose for daily regulation.

Category: General Ramblings

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Comments (6)

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  1. Shannon says:

    Hi Steve,

    We have had lots of issue with constipation as well. I can’t wait to hear more on the sleep training method you were telling me about! Great blog, I hope you don’t mind if I put a link on mine?

    Take care,
    Shannon Wells

  2. Steve says:

    Hi Shannon.

    Great to hear from you!

    Feel free to place a link on your blog.

    Once I’ve worked out how to do it, I’ll do the same!

    Tell you what, if you get time, would you be able to drop me an email to show me how to do it (address is in the profile)?!

    Cheers.

    Steve.

  3. Lorna says:

    Hi Steve

    Emily and I have just returned home after an unexpected two day hospital stay due to faecal impaction. I was a bit frustrated by the consultant – I’m sure he knows all about bowels but I’m not sure he was taking the cerbral palsy into account. I’ve been managing Emily’s constipation since she was young and she’s now 14 so I’d like to think I know a bit about how she works. It is good to know that the things we go through are experienced by others and that we are not alone. I guess it’s keep going with the Movicol and the lactulose for now!

  4. Steve says:

    Hi Lorna.

    Apologies for the delay … but I only recently saw your comment. Just getting to grips with Blogger at the moment.

    Thanks for your post.

    The constipation certainly seems to be under control now. If she doesn’t go for a day or so, we simply give her a sachet of Movicol in about 60mL of juice. 24 hours later … it’s a poo surprise!

  5. Josephine says:

    I tried to talk to our family doctor about my daughter’s constipation once and all he said was that I needed to make sure I was giving her enough fruits and vegetables and fluids….as if I hadn’t thought of that! It was as though I had to be the one to tell him that CP can cause constipation!

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