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Movicol addict

4 replies

Hopeandglory · 29/04/2015 19:11

looking for some help, 10yr old dd has been on 4 sachets of Movicol for about 3 years, before starting she progressed from complaining of intermittent stomach ache to being unable to eat a meal without leaving the table 3 or 4 times due to needing the toilet, she also suffered from finger and toe infections - to the point of almost losing nails, split lips, mouth ulcers, hair loss, bouts of melancholy(best description) random and unavoidable and unexpected vomiting, anxiety and lethargy. I had been to GP previously re tummy issues but the advice was non existent so when I suggested trying lactose free milk I was told to give it a go. At the end of my tether with random symptoms I had her Vega tested which suggested avoiding dairy, wheat beef etc. When I eliminated these items there was a magical transformation for a couple of months but then certain problems began to reappear, tried a different GP who suggested normal diet and celiac testing which we did and was negative. Consultant then diagnosed constipation which was the start of the Movicol journey.
Weaned her off Movicol after 9 months she then lost finger nail due to infection and friends started to mention bloating which eventually dawned on me that all the previous symptoms were reappearing.
Back to GP given more Movicol and referred on to consultant who did a skin prick test which was negative and recommendation to continue with a no soya/dairy diet. We have a final appointment with consultant which we have already been told will be a sign off as all the tests that have been done have come back negative,.
I am very aware that the NHS has been fantastic to us but worried that we will be left reliant on Movicol when the reason for needing it has not been found.
Has anyone ever had similar symptoms, DD is health and average height,weight etc but has always suffered from bad skin and will now request Movicol if she feels out of sorts
Sorry for a long post

OP posts:
MakeItACider · 30/04/2015 12:34

Firstly, why are you so determined to take your DD off movicol?

It may well be that your DD will need lifelong medication for this issue. Of course she might not, but please don't start dealing with this from the premises that she MUST come off movicol.

Secondly, get your DD referred to a paediatrician. The GP is simply not the right person for this. The paediatrician can have more tests done to find out WHY your DD can't go to the loo herself. There are a LOT of reasons why this could be the case.

As an example, DS was tested to see if he had nerve damage, which included a CT scan of his spine. If there had been permanent nerve damage then DS would likely need to be on some sort of laxative for the rest of his life.

The other thing is that faecal impaction can itself lead to nerve damage. The healing process can take longer than her illness itself. So if she had the issues until she was 7, 3 years of being on movicol is really not that long.

TeddTess · 30/04/2015 12:47

def get referred. honestly GPs really are not that informed and in my DDs case was a classic case of a little bit of knowledge is useless.

my dd was on movicol as a toddler. it only bulks out the stool. i wouldn't worry about her being on it.

Hopeandglory · 30/04/2015 16:05

thanks for you replies, DD is seeing a gastric paediatrician but they have already told me that there are no further tests that they consider will determine why she requires Movicol. I have no problem with the use of Movicol but would like to get to the root cause as I feel that there is a problem with some types of food that results in the need for continuous high dosage Movicol. While I appreciate that the symptoms are controlled I would like to understand the original problem as it can be very hard to live with for both her and I. I have tried various diets with the backup from dieticians and have a fair understanding of nutrition and supplements but hoped that someone reading may recognise similar symptoms.

OP posts:
MakeItACider · 01/05/2015 11:04

Great that you have a paediatrician.

Does she feel the need to go? If she does, then it's not likely to be nerve damage.

She could have a sensitivity, rather than an allergy. So a little bit of x is fine, but more than a bit and she has a problem.

Have you tried keeping a food diary? Remembering that it can take quite awhile for the absence of the introduction of a particular food to take effect. When I had to stop giving DS2 baby rice it took 10 days for the symptoms to clear.

Or, at the end of the day, she could just veer towards being on the constipated side. Some people are like that - my side of the family is, and I guess DS1 takes after that. DS2 takes after my DH's side of the family. Never a problem going once or twice a day!

Have you looked up forums about it? When I was researching it I was surprised to discover high fibre breakfasts like weetabix could actually make the constipation worse. I had always assumed the extra fibre would help, but for some people it does the opposite.

Good luck.

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