Botox to Relax Baby Sphincter?!

[BlueBirdDiaries]

Baby, 10 months old. Chronic constipation. Tried everything. He’s under the care of the Gastro team at the hospital now. On 2 sachets of Movicol a day. Helps him poop 1-2 times a day. Without can go up to 7 days without a bowel movement. Waiting for contrast enema. If this shows abnormalities then we will have a biopsy to test for Hirschsprungs. If it’s normal then they want to use Botox injections to relax the sphincter and hopefully allow for easier bowl movements.

my question. Has anyone had any experience with this? I’m concerned this is a quick fix and there’s no information on how long a baby can stay on them for and whether he will ever learn to go independently of this treatment. Long term effects as also not known as the treatment is relatively new.

any input is very much appreciated!

Its not the same treatment but I had Botox injection to my overly tense upper oesophageal sphincter to enable me to burp (long story) and supposedly, most people then never lose the ability. It did work. I know it's a different muscle but it's like the Botox enables the body to learn the correct movement and if there is no physical abnormality it may not be needed to continue with injections. I would ask the doctor for information on whether repeats are needed and in what percentage of patients.

Thank you. This was really helpful. I will definitely ask the doctors what you suggested.

Is 7 days that unusual for a baby at that age? It seems like a very extreme treatment. One of my children frequently went without a BM for 5-7 days at that age and I was told it was not too far outside the realm of normal, even if the diaper that resulted was very unpleasant (and usually leaked to his clothes).

A baby who is having food should be pooing daily.

@WombOfOnesOwn I am going to assume that it’s pretty bad for the doctors to take it that seriously because my DC had terrible constipation when they started weaning, up to 7 days without a poo was “normal” and we were just given lactulose and told it’s normal whilst their digestive system gets used to solid food. They poo daily now no issue.

@Sapphirejane what she did the constipation get better! With my son, he’d be very unsettled and his abdomen distended and he refuses food.

@BlueBirdDiaries I want to say around 13/14 months, we tried as much as possible to up water intake as well as daily lactulose, massaging stomach etc. it was horrible but fine now (nearly 2).

Does sound quite extreme, isn't the movicol working if pooing 2x a day? Some kids stay on it for years.

I need to admit to pressing the vote button while scrolling!

In your position I think I'd stick with the movicol. But 7 days doesn't seem a very long time between bowel movements. Too long yes, but not really unusual. How long has he been on movicol for?

@ferretface I am intrigued by this as I also cannot burp!

Yes we’ve had exactly this - it’s a quick fix and wears off. They need to find the root cause of the problem. They should be doing Hirschsprungs biopsy in any event. Do you do washouts or do the enemas tend to work?

We were on movicol for years, massage and fluid charts etc.. easily went 7 days without going around 18 months. Then breakthrough diarrhoea and bowel distortion.

Cleared up in time by itself just like the paediatrician said it would. No issues at all.

I'm not sure I'd be keen on botox tbh. All a bit new and long term consequences in such a young child will be unknown?

@Sapphirejane I am hearing similar stories. I am glad your situation worked itself out in te end.

@CottonSock I would day the movicol
is working. However, it doesn’t provide any relief once he has gone. Right back to straining for hours. Even in his sleep. He wakes every 30-40 minutes every night. So by the time it’s morning. I’ve slept 2-3 hours and he’s slept poorly too.

@Floydthebarber he has been on it for 16 weeks so far. First half a sachet, then one sachet and now two. It seems the constipation got progressively worse and I’ve had to up the dose. As he’s under 2. They consider his usage as being “off licence”.

@Herewegoagain84 I agree with the testing for HD. You can have something called Ultra short segment HD where it’s an issue with the sphincter alone and there are no nerves missing from the bowel. If the enema comes back normal. i wonder if they would complete a Anal Manometry (www.esht.nhs.uk/leaflet/anorectal-manometry/)? I think it would make sense. Apparently with the Ultrashort segment HD, your biopsy tends to return as normal. We have never done enemas or wash outs. It’s never been suggested.

@Willyoujustbequiet thanks for your input. How did your child’s constipation present? What age did it clear up and what explanation did you get at the time? I think I agree with you with the Botox being relatively new and not knowing the long term consequences. it’s like sticking on a bandaid 🩹 as it’s easy and simple. Doesn’t address the underlying cause (if there is one). How many treatments will be required, if any!

He has been constipated since around 3 months old. He was EBF. I understand babies who are can go a long time between poops. With him he would go twice a day but he struggled for hours getting them out so that is where the problem would lie. Spoke to ‘Eric’ and they said it wasn’t normal. Got a pead appointment a month ago and they said he should of been referred then.

You might find more people who have tried the botox on the movicol mummies Facebook group.
What helped my daughter in the end was a bowel stimulant.

@CottonSock what is a bowel stimulant?

Can he have sodium picosulphate? My daughter had that for a bit and movicol. She’s been on movicol since she was 12 months- she’s almost 7 now. She would go up to ten days with no bm and it was so horrible to see. Shes on the mend now on only half a sachet a day down from about 5 at one point. I hope you get it sorted. Botox does sound extreme so I understand your worries

Stimulant was sodium picosulplate. Not sure what age you can use it as my dd was 4 not a baby.

@Squashedraddish I am not sure if he’s allowed to have it. It’s not been suggested or mentioned by anyone in charge of his care.

@CottonSock sod knows!

I heard if movicol doesn’t work as a first line treatment they tend to move into what @Squashedraddish suggested. Or so I’ve heard…

Sodium picosulplate changed everything for us, alongside discovery of tasteless movicol called dulcosoft.

@CottonSock how long until your child was independent of them? How are they administered? Currently I use a syringe.

I hope this doesn't come across as flippant given he's under hospital care but have you tried diluted prune juice alongside the medicine? It's surprisingly effective and because it's tasty he might happily drink it through the day. When I was a nanny for a 2 year old he only needed about 300mls per day but without it he was extremely constipated and had very painful bowel movements.

Hi. It was treatment over a couple of years, but we dropped the stimulant (sodium picosulplate) before the magrogol (dulcosoft I.e movicol). When stopping we reduced very slowly.
We had a great outcome eventually but it felt like we would never get there at times.

@chiffchaffchiff hey, not at all. We have tried the prunes, in fact all of the p groups. Nothing worked.

@CottonSock thanks. You r honestly been a massive help!

@BlueBirdDiaries - Ah this sounds different from ours which very much coincided with weaning and there was no straining at night. I am pleased you have got good advice from those more knowledgeable.