At the end of my tether

[Howie119]

Okay so I’m a first time mum, I struggle with autism (suspected) and OCD (known). My LO is 10 months old. We started weaning at 6 months and they’ve been struggling with constipation ever since. We’ve been on Movicol for close to 40 days, maybe over that now and we’re on 1 satchet a day. At first my LO took it no problems, and after about 2 weeks, started to refuse it. (EDIT: even during this two weeks though there was no sign of improvement). Now they’re only passing stool every 5 days, large, firm (but squishable) and then all the other days either straining and passing nothing or smear amounts. When my LO is going, they will only go in the bath and they physically sob everytime they go so every 5 days I have to hold my LO as they pass a bowel movement and sob and this has been going on for months. I’ve been taking them to the drs every week at this point and they all keep telling me to increase fibre (my LO is under a dietician, egg allergy, and they’re so happy with their diet, mainly veg, meats etc) on top of that I’ve been giving, pears, prunes, flaxseed, chia seed, raspberries, lentils, chickpeas, black beans and broccoli. You tell me that isn’t increasing fibre? And today’s drs appointment really knocked my confidence as a FTM. I basically got told I’m not trying hard enough to give my LO their medicine but what am I meant to do when they spit it out, clench their mouth shut, shake it side to side, push me away etc like do you want me to strap my LO down and force them to swallow some liquid? What more can I physically do? Then I felt like they did not believe me with the diet my LO is on, gave me an entire booklet about constipation, what food to give and why I need to increase water intake and fibre because “it all starts with the diet” like I’m so angry. My LOs diet could not be more varied and nutritional. Because I’ve been trying to get movicol in them, they now refuse all their cups, refuse water and refuse the syringe. Still breastfeeding up to 8 times a day (and night). I can get some movicol in them by putting it in their food but this is obviously not the full dose and a very unreliable amount is entering my LO system. I’m just at my wits end and no one’s listening to me when I say I need help, they keep offering lactulose but it has sugar in and is just generally harsher on their little bodies than movicol.
If you’ve got to the end thank you. I could really do with some advice - am I overreacting or should I keep pushing at the drs?

Absolutely keep pushing the doctors. My biggest regret is not being firmer and better advocating. When you say Dr, do you mean gp or paeds?

I'll say right here some drs are incredible, they listen and believe you and will do everything in their power for your little one. Unfortunately, as in all professions, there are some drs who are ultimately bad at their job.

What I wish I had done is pin them more as once you start insisting things are recorded and requesting second opinions, attitudes change.

I would advise recording an incident of them passing a bowel movement in the bath to show them the level of distress. In the appointment if they say keep going with the movicol then say you are happy to, please show me how. Honestly, i would accept the lactulose, my LO had it and it was fine. Bring in a food diary to highlight the fiber they are getting plus the breastfeeding and ask them if the results are expected especially as dieticians are happy. Ask for a second opinion, it's your right. Ask for the threshold to be referred to a specialist, ask for them to record in the notes that you have a parental concern and aren't satisfied with the diagnosis and say you will be requesting the notes then do.

@Pulledbluecurtain - By Drs I do mean the GP, and I have been recording everything! I have a poop log, photos of LOs stool, videos of the distress and they just keep pushing movicol and lactulose. I had to give a suppository at one point and this seemed to force out a large quantity of stool over two days and then went back to only going every 5 days. I’m so weary of switching to lactulose but I’m willing to switch if it’ll help and my main concern is having the same problem of not getting it into my LO, though they might take to it if it has a different taste! And a out of hours GP recommended I ask for a paediatric referral, which is what I did today and then I’m pretty certain they felt like it was unnecessary because my LO is mostly happy but it’s like a build up. Over days and days they’ll be straining and nothing happening or smearing and then they’ll go in the bath on the 4/5th day.

I will try the end of your advice next! I just keep getting told it’s common, my LO will grow out of it, I really need to get the medication in them (asif I’m being lazy and not doing it!), more fibre, more water 🫩

Lactulose is not absorbed by the body. That is how it works. So you don't need to worry about sugar. It just increases the amount of water retained in the bowel, making the stools bulkier and softer. It is a smaller quantity and a more pleasant taste for babies.
Maybe your baby just isn't ready to process large amounts of solid food. Milk should be the main source of nutrition until they are a year old. "Food is for fun until they are one" is often quoted on here.
Do you think your baby is getting enough milk/ fluids? Too much roughage and too little liquid will produce hard, large poos and slow transit.

I knew something was wrong for six months and allowed myself to be pushed off and pushed off. In the end my instincts were right and my little one has stage 4 brain cancer.

I don't say that to scare you and you've been brave and open about your own diagnosis so I hope I don't cause as spiral, what happened to me was incredibly rare.

I only say that because when I finally did get through to the specialists, best in field they always talk about how parental instinct and concern is a key diagnostic indicator.

Push the gp-
Is what your child experiencing normal? No.

What are the common underlying causes of this symptom? I would assume dehydration, lack of fiber.

Are they applicable in your case? No, as agreed by a dietician.

Are the gps simply trying to address the symptom rather than try a differential diagnosis for an underlying cause? Is certainly seems that way.

Are they refusing on the basis continued pain, irregular bowel movement despite dietician support and parental concern isn't enough? In which case, can they explicitly confirm the threshold for referral and can they make a formal note of that and that you have been denied.

Then state firmly I would like a referral to paeds for a second opinion.

Probably not very useful as you haven't mentioned these foods, but one of mine had problems with constipation early on when they had root vegetables like sweet potato and potato (carrot was fine). I pulled those back till later and problem solved.

@endofthelinefinallyI hate that phrase because food isn’t for fun before one. Milk is absolutely still number 1 for nutrition but the iron from food cannot be overlooked, the 3 lots of calcium needed, introduction of allergies (how we found out LO is allergic to egg) like it’s absolutely necessary to be giving them food however I might try switching to lactulose and seeing if that helps my LO because I’m getting desperate. My LO still breastfeeds up to 8 times over a day and night, I introduced watermelon and cucumber everyday into their diet for extra water, I mix water into their blended food, like I am desperately trying everything I can and they’re having adequate wet nappies so I’m pretty sure they’re hydrated but maybe they’re not? My LO bowel movements aren’t extremely hard, they’re just firm and large but can be squished so they’re not bullet like or anything.

@PulledbluecurtainThank you for saying I’m brave haha, I’m very open about my mental health and this is what I’m petrified about. Whether it’s a common version of “normal” or whether it’s the fobbed off “normal” but I’ve been so scared it could be something more serious whether it’s short-segment Hirschsprungs or literally anything that could be causing this because you’re right! They’re consistently telling me that it’s lack of fibre or diet related or normal and they’ll grow out of it etc etc.
Im quite a young mum too so I have little friends to talk to and those with kids haven’t dealt with constipation at all so that’s why I turned here because I couldn’t tell if it was my OCD making me think worse case scenario as my “gut” can sometimes not be trusted or whether it is something valid that I should be pushing !!

Join Movicol mummies on Facebook. You’ll get some good advice. Do they eat weetabix or bananas? Are they getting enough fluid? Sadly there is no magic bullet with this stuff and sadly movicol or lactulose is the way forward it is just working out how. Movicol mummies will give you loads of good advice.

@SunIsGreatIm definitely going to try get a referral to paediatrics even if it’s just for peace of mind but I might try to avoid root vegetables for a couple days to see if that improves it any? I just don’t want to be taking away foods unnecessarily and it seems to be all the time, rather than just when they eat root vegetables but honestly I’ll try anything to help my LO.

I gave mine lactulose mixed in yoghurt with berries or banana. The sugar isn’t absorbed and really anything to get it into them. If your little one is badly constipated it is going to hurt, the stool softener is there to make it easier and less painful but it can’t work if they won’t take it.

Are you worrying there’s more going on or that there may be an underlying issue beyond adjusting to a solid diet? If so keep doing what you’re doing with the GP while also trying the lactulose. Movicol did nothing for my DC but lactulose worked like a charm.

@SausageMonkey2- I do not have social media but my husband does so I might get him to join. My LO does not eat weetabix or bananas because I read those foods can be causing constipation and they seemed easy to cut out without having a nutritional disadvantage. I breastfeed LO up to 8 times (maybe even more) a day, they have cucumber, watermelon, they have sips of normal water with meals and usually drink the most on a night but as soon as they taste movicol they spit it out and have started to refuse it completely and yes there definitely is no magic cure! Just worried it could be more than generalised constipation.

This sounds really tough I’m sorry. Few things some kids do struggle with too much fibre so avoid whole grain bread pasta etc.

lactulose is a smaller volume to take but only works if they still drink plenty of fluids hit sounds like your lo does

movicol is better but the volume is hard to get in

we resorted to adding squash to ours and he would drink it no problem but took us a while to get there.

unfortunately constipation can really affect how the bowel works long term have you been on the Eric website.

it is tough there is no easy fix, some children naturally have a more sluggish bowel & might need a stimulant adding in.

I would suggest contacting your locals children’s community nursing team see if they run constipation clinics that way you can get guided individual support and signposting / info sharing with gp if further investigations are needed

@Jellycatspyjamas - I am worried there might be more going on but due to my OCD, I sometimes don’t fully trust my “gut” in case I'm overreacting to something that is incredibly simple and common if that makes sense. The stool isn’t rock solid, it’s actually easy to squash in the nappy but it’s just a really surprisingly large amount for such a small person and it’s the pain, shock that it’s emerging and clear distress my LO seems to be in that’s really concerning as well as the smears throughout the week and the build up of straining to finally going lasting days. I might first try to switch to lactulose and get a paediatric referral going and see if that does improve it or if I still have the same problems on a different laxative.

@SeahorsesplendourYeah I think my distress is quite evident haha! I just want to make my LOs bowel movements easier for them and I am worried the longer this continues then the worse the long term impact! I’ll definitely try to get in contact with someone other than my GPs and I’m hearing that lactulose is quite safe from a few of these comments so I might switch to that and see if I can get that into my LO instead and then monitor for improvements.

Will you little one take a drink out of a bottle? You could mix the Movicol with expressed breast milk and substitute a feed. You may need to get someone else to give them a bottle, my DS was exclusively BF and wouldn’t take a bottle from me but would take a bottle at nursery or from DH. We sometimes had to use a bottle when he had a cold because he couldn’t breast feed and breath at the same time.
I would also cut down the variety of foods they have. If they are still BF a lot then you don’t have to worry too much about nutrition. There does seem to be a lot of fibrous food, the seeds need to be finely ground and water added to them. They are full of insoluble fibre that absorbs water in the gut and can cause constipation.

I am 8 years into our constipation journey so I know the frustration. Are they dairy free too? Are you? A third of all children have constipation at some point but the best advice is to treat is quickly and treat it well. Lactulose is worth a try. If I had a pound for every time someone said prunes or kiwis I’d be a rich woman. My 8yo was under treated for about a year when she was born. She had an undiagnosed milk allergy and has severe problems to this day. My 6yo was treated as soon as issues appeared and whilst she still has trouble, she is much much easier to treat. We used to soak Cheerios in movicol laced milk when she was really small. Or mixed with small amounts of apple juice or full fat “milk”

Wheat/gluten intolerance can cause constipation.

But she had bouts of diarrhoea too.
For my DD it was severe for 4 years until I got listened to.

Milk intolerance too. Dietician said we can’t possibly cut dairy!!!! They need to have more training!

@Crwysmam- My LO doesn’t take a bottle from anyone unfortunately. Exclusively breastfed and will just escalate when trying a bottle whether I’m in the room, out the room, my DH or literally anyone else. My LO doesn’t even attempt to suck from a bottle anyway, just chews the top if they do put it in their mouth at all. I’m currently just following my dieticians advice with their food alongside the increase of fibre suggested, I can cut out the seeds but they are ground and added to things like yoghurt and I only use a small sprinkle but like I said, I am willing to try anything! It just feels so hard when I’m getting told to up fibre and then it might be too much so reduce etc etc - obviously I’m new to all this and when we first started weaning my LO wasn’t on much food but obviously now at 10 months, they are on 3 meals a day and I vary their food by day so I won’t give them pear and prune and seeds all in one day, I’ll give either one or two and then switch to which fibre food I give the next day if that makes sense but maybe I am just making it worse by over fibre?

I would leave off the flax and chia unless you’re soaking them first.

@SausageMonkey2I really feel for you! There’s so much information and things it could be that make is so frustrating ! My LO displayed allergy symptoms very early on so dairy was cut out and long story short dairy seemed to be tolerated fine, allergy test showed my LO has an allergy to eggs, both baked and raw. But that sounds smart! The Movicol laced foods! I might try that - and yes if one more person suggests prunes asif I don’t have about 10 organic 100% prune pouches in my cupboard I’ll go insane 😂 I’m so sorry to hear your LO have been under treated! It feels like a topic no one mentions when you’re pregnant and then it just seems like an absolutely absurd thing to struggle with! Especially because my LO seemed fine for 6 months and then the introduction of food just completely messed it up!

@PieLoeYes it’s very frustrating! Constipation has so many causes with so many different ways to treat it that it becomes so difficult to figure out what helps and I’m worried if I continue to poorly treat the symptoms, it’s going to have long term effects for my LO. Dairy seems well tolerated - LO has an egg allergy which is treated so shouldnt be causing constipation etc !

Just to help when my DD was a baby (40 years ago so this may well be dated advice) she went through a constipation phase and I would put a little Vaseline around the entrance of her bum which helped her to pass stools

I remember when my LO started on solids and struggled with constipation (no poo for 6 days) frequently because it’s a transition and their bodies are getting used to handing proper stools (vs wet ones you get with mushy food and BF)
Side note on the egg - LO also reacted badly to egg (vomit and rash every time) so we told ourselves (and nursery) she was allergic. We introduced egg at 5 months and were told (by allergy dr) to keep at it.
A friend of ours told us in Asia they don’t introduce egg to kids til after 12 months as digestive system still developing. So we stopped and reintroduced after 12 months and no negative reactions. She now eats egg regularly with no issues.

Some babies guts take a little time to catch up with food. We have a multi allergy baby and find a half sachet of movicol along with 6ml of lactulose a day is the magic combination for us at the moment. Also, we found black beans caused constipation,as did risotto rice, and were advised by two dieticians to remove all seeds (or minimise to 1/2teaspoon a day and always pre-soaked) until they are two years of age as the gut can find that fibre harder to digest. Mango in coconut yogurt is the only thing that hides the taste of movicol completely from our taste taste/fussy baby so that might be worth a try for you also.