I haven’t posted for a while, but wondered whether anyone would recognise our issues and give any advice or signposting. My son’s issues seem so complex that it’s hard to see the forest for the trees and take the right decisions/ push in the right direction.
Eldest boy is 8 and a real sweetheart. He’s always been large for height and weight.
As a baby had an overnight hospitalisation with bloody stools. He was observed for intussuception and they decided that it was CMPA (it coincided with his first bottle of formula at c.5 months), put him on a milk-free diet and I went back to breastfeeding. When it came to weaning he was milk-free but was under a dietician who had us introduce gradually milk by age 2 without further drama.
We did have some issues with breathing and eczema and he was prescribed preventer/ reliever inhalers which have mostly kept things under control apart from a tendency towards croup.
Next couple of years were largely without incident, though we did start to see some major frequent tantrums around being in new places and with new people. Nothing to raise alarm at any neurodevelopment issues.
He was in nursery and consistently assessed as meeting targets apart from the target around personal hygiene, because he just did not seem to be able to potty train, despite being keen. He never does any major wee accidents, but leaks urine. Sometimes he can develop a wet patch as soon as 10 minutes after going to the loo despite (at least when under my supervision) good practise around wiggling to shake urine down In his bladder, count to ten and try again etc.
He’s young in his year, so he was fully at the end of reception before meeting the NICE guidelines for receiving any help with his incontinence. The urgency of this was forced by him becoming faecally incontinent (previously not a problem) at the end of reception year. We consulted with the HV, ERIC and our community Paed and all said that both bowel and bladder incontinence would likely be due to constipation...this was news to us as he had been incredibly regular in his bowel habits, going every day and sometimes twice!
When they pointed it out, I did realise he was a lot more pot-bellied than other kids, though. I think, at this point, he had an X-ray which showed his bowel was very full and distended.
He was placed on a disimpaction regime which did very little (seriously, reading other accounts on here, I was expecting poo-mageddon!) and though more poo than normal came out and it was much looser, at no point did we reach the end-point of the regime of clear water coming through.
After 6 days on 12 sachets a day, the paediatrician got concerned (I think about disrupting electrolytes?) and made a referral to the children’s hospital in our region. Nobody seemed to know how a child who has never gone a single day without a bowel movement could be constipated.
He stayed on maintenance dose of 2 sachets of Movicol per day. We started with the bowel nurse - “bladder comes when the bowel is dealt with”, we were told - which makes perfect sense.
The bowel nurse worked with the surgeon and ordered a biopsy to exclude short-section Hirschprungs - clear - and the surgeon manually performed a disimpaction whilst under GA for the biopsy. Things seemed a bit better weeing & pooing for a month or two, and then, despite maintenance doses of Movicol, the tummy grew again, the wetting started and gradually the encopresis came back.
He was then placed on suppositories which seemed reasonably effective but painful and confined him to the bathroom for up to 90 mins every day.
At some point he started on a course of Botox in the anal sphincter , which possibly helped for a couple of weeks after each procedure but didn’t stick.
He’s now on high volume enemas daily and waiting for an ACE procedure for more effective wash-outs and the ability to do this himself more discreetly as he gets older. This has been postponed by COVID-19.
A few years ago his sleep got really bad and has stayed that way until recently when he was prescribed melatonin which has helped with getting him to sleep - previously he was up until 9.30-10 and exhausted during the day.
He is behind at school, extreme emotional dysregulation etc. He’s under CAMHS to try and work out whether this is sleep deprivation and anxiety or a ND issue - he displays a lot of ADHD traits, some autism traits and some sensory processing disorder traits., but all of his traits could be explained by anxiety and everyone agrees that given his physical issues he could be that anxious. All engagement with CAMHS and assessment is on hold due to COVID-19.
Melatonin has been amazing, and he’s asleep by 7.30, but he now soaks through his pull-up and wets the bed at around 5am. He’s in ones I order from Tena online for kids 8-16 and he’s well within the weight category yet they don’t fit particularly well due to his pot belly (which has never gone away fully despite the wash-outs).
He’s also gained weight during lockdown - not from lack of exercise as we’re out at the local rec multiple times per day - but from eating. We have a really good diet (he eats a lot of fruit & veg) and limit treats, but now he’s in the house all day he helps himself to jam sandwiches in between meals etc.
I’m at a loss as to how to approach all this. Would it be unreasonable to ask for a phone call with “his” paediatrician? We don’t know them as his previous one retired recently. Technically, we’re on 6-month appointments and had one a couple of months ago, but his surgery is on-hold.
I appreciate he’s not going to suddenly be listed for surgery or get a ND assessment in the middle of a pandemic, but I feel a bit panicked that we’ve been working through all this for years and just when we were making progress everything has stopped.
I feel that the melatonin (well, sleep!) might help some (or all?!) of the focus and behaviour issues, if only we can get him dry enough overnight that he can sleep through until he’s ready to wake up. I reckon he’s gained a couple of hours at bedtime but now gets gets up a lot earlier and we change his bed every day as his pull-up and sheets are wet on waking.
Any ideas on any aspect of this epic saga? 