PLEASE HELP- DD doesn't tolerate fluids

[Member652554]

Hi everyone. I am worried about my DD. She seems to hate drinking any sort of fluid . That's all milk/juice/formula etc. When she tries she will cough . I have therefore continued to breastfeed. She is now 13 months. HV didn't appear concerned at her one year check as she is still breastfeeding and is thriving well. But now I want to wean off the breast as I am back at work and all the sleepless nights are not great. Has anyone had a similar issues ? I would love to hear from parents who have had SALT input for their DC. Thanks

[AssassinatedBeauty]

What is she drinking from? A bottle or a cup?

[Member652554]

After trying every flow and shape of bottle we had given up on the bottle now she is over 1 yr. With the breakers I have tried the sippy cups with the valves, the free flow ones, the doyedy (sorrg wrong spelling) open cup, the munchkin magic cup, soft spouts/hard spouts etc and now she uses like a baby water bottle with the straw and manages a few sips a day from that which she then coughs on and pushes away . Sorry about the long reply to your simple question. I am just trying to give you as much info as possible in case anyone comes along with some support. Thanks

[SmurfyNC]

If she coughs when drinking then that sounds very much like she might be aspirating fluids (small amounts of fluid going into her lungs rather than her stomach). It's called an uncoordinated or unsafe swallow and It is reasonably common for children who have this to be able to breastfeed without problems. A possible solution would be to thicken the fluids, using some prescription thickener. This would slow down its movement from cup/bottle to mouth to throat, allowing her time to deal with it. Definitely push for a referral to SALT. You might (not sure) be able to buy a thickener (we use one called 'carabel' it's by cow and gate) over the counter to try out and then see if it makes a difference - or ask GP to prescribe. Instructions are on the pack. My DD has all her fluids thickened due to partially unsafe swallow (no issues with solids).

[Member652554]

Thank you smurf that's exactly what I am suspecting. She used to also cough on my let down when she was younger and my milk production was higher. But the lactation consultant only gave advice on different positions to slow down my let down rather than address my concerns regarding aspiration. Now I am not producing as much milk she is fine breastfeeding and able to control the flow . Did your little one have to have a barium swallow ? How is she now and is she any better with fluids ? Thanks for responding again

[SmurfyNC]

Not a barium swallow but she has a Videoflouroscopy where they put sometime (not barium, but similar effect) into her milk and effectively x-rayed to see where is was going. However she was a 'silent aspirator' which means she didn't cough but the milk going into her lungs caused chest infections. For your DD they might not do the test, esp if thickening solves the problem. Be assured that it is something nearly all children grow out of, as their muscles and coordination develop.

We've been thickening for about 6 months now, DD has to have it really thick - custard-like - in order to manage it but no problems, no chest infections since. I carry a little pot of the thickener around in the change bag so I can always thicken a bottle and also at playgroups etc if the other children are having a drink I can thicken it so DD can too (she is a similar age to yours, 15 months).

Happy to help/answer any questions.

[Member652554]

That's great. We have an appointment booked for her with the GP to get the SALT referral. I am particularly concerned with the summer coming up and risk of dehydration now I am back at work and not able to breastfeed on demand. Sorry I have a few more questions

1. Do you feel your child is getting adequate hydration from thickened fluids ?
   2 ) has it effected her independence in terms of being able to drink from a beaker her self etc
   
2. Has it effected your childcare options, for example : are you confident in leaving her with grandparents, in Nursery etc
   
   Sorry about the questions, she is my first baby and i just want to keep her safe.

[SmurfyNC]

No problem at all, good questions.

1. yes, I asked SALT about this as I was concerned but they assured me that it provides the same available hydration even though thick. Certainly we've had no problems with hydration. I was also concerned that it would have a constipating effect but not at all.
   
   
2. not as helpful with this one, DD has additional needs (Down's syndrome) and she can't yet hold her own beaker effectively but this is not unusual for children with DS. I don't believe the thickened fluids would cause it to take longer but can't say from experience :)
   
   
3. again I'm not the most helpful here, I'm a SAHM so don't use childcare and DD has always been a fussy feeder so it is hard to leave her with grandparents. We left her with MIL overnight once whilst we went to a wedding and she had no problems at all feeding her thickened milk. My own DM however doesn't seem to be able to get it into her and I'm not sure why - have watched etc. I don't think it's related to the thickener though. The only issue for child care is that the carer understands how think the fluid needs to be. So for instance I told MIL exactly how much thickener to add to the milk and how long to leave it for before feeding (and I trust mil to listen). Same with cups of water etc.
   
   Sorry, not as helpful :/

[Member652554]

I have just been to the GP with her to discuss my concerns. According to him It's unlikely to be an issue with her swallowing and more likely be a matter of swollen adenoids due to infection/allergies. So we have been given some piraton to give her. I have discussed trying her with thickened fluids too and he said it's worth a try. So I have bought the thickening agent you suggested. I find it difficult to believe it is purely down to swelling as she has had this issue since she was born. Did your doctor suggest allergies, tonsils , adenoid issues ?

[SmurfyNC]

Well no, because children with DS often have problems with swallowing due to their lax muscles so it wasn't 'unexpected' from the doctors pov. Interestingly the possibility of swollen adenoids/tonsils has been raised this week as a possible explanation for her permanent-cold/congestion and so we are awaiting a referral to ENT. No one suggested piriton though, tbh that sounds a bit  to me. If it had just come on then yes, allergies but this has always been like this.

I hope you don't mind me saying but it sounds to me like the GP isn't taking you seriously/thinks you are exaggerating. Unfortunately it can be harder to get taken seriously as a first time mum (I know from experience with my son, he had horrific reflux and I had him constantly at the GP but they didn't care and it wasn't until he was hospitalised with dehydration and failure to thrive that anyone listened). Just keep pushing is my advice, try the piriton (it won't hurt), try the thickener and then go back - piriton is basically instant so I'd be back in a couple of days if no improvement...

[captaincake]

My DS was very similar to this. He's nearly 3 now and only has thickener when he's tired/ill. But for ages he had it permanently and it made all the difference. He also struggles with some foods. His problem seems to be one of poor coordination and concentration. But he does also have massive tonsils and adenoids for which we're awaiting removal due to sleep apnea.

I self referred him to salt for assessment as I knew the chances of getting the referral from gp/hv were about 0% and they were pretty helpful.

[Bryna]

I am a childminding assistant and we have a child who has to have their liquids thickened. They are in a sports type bottle, the child is 2 and able to drink by themselves. We are a smaller environment from a standard nursery (max.9 under 5's), and are happy to have them. Childcare options will vary by nursery, some will be happy

[Bryna]

Sorry, hit post too soon! Some will be happy to take your DD, some may put obstacles in your way.

[Member652554]

smurfyNC you may be right about the GP not understanding the seriousness of the situation as they often only see the patient in 5-10 minutes. However, being a Healthcare professional myself (although very junior) I did feel confident in challenging him and made a follow up appointment in 2 weeks time incase things do not improve. We also discussed possible ENT referrals if we wish to go down the surgery route if her adenoids remain swollen post antihistamine treatment . But we both thought to exhaust all other options first. My DD has also suffered with the reoccurring colds/congestion which is again could explain the raised adenoids.Thank you all again for your sharing your experiences .

[Member652554]

Captaincake That is a good idea about the self referral. I will have to consider that if I am met with resistance at her next appointment. Did your ds have reoccurring colds/congestion ? Is he generally a fussy eater ? my dd will push most food away and has to be really persuaded, distracted, encouraged etc during meals. What about your DD smurfy NC , I know you said she only has her fluids chickened but is she generally keen on food ? Another reason I am keen to get on top of this is because I want my dd to have a positive relationship with food and I have noticed she is always been quite suspicious of food and wants to taste things carefully before allowing us to feed her etc.

[Member652554]

Bryna thank you for your insight from a nursery pov. My dd currently attends 1 day pw. They tell me that "lots to drink" and most of the time they will say she has had a bit of what ever they had for lunch/tea. They too said she often pushes her food away and I take the "lots to drink" feedback with a pinch of salt.

[Bryna]

Do you provide a drinks bottle, or do they offer cups of water? Maybe they offer it regularly and assume she's getting enough, I would be tempted to provide her own bottle so that you can see how much she has drunk (or spilt!) over the course of the day. We have some children that we always refill for, and some that only have a small amount. Speaking as a parent that breastfed, none of my DC drank much water until fully weaned, so maybe at the moment she doesn't 'require' much. I know this doesn't help with diagnosis however it may put your mind at rest that she is receiving enough fluids.

[Bryna]

As a thought, you say you're worried about fluids during the summer, have you tried fruit juice slushies? Will she eat things like cucumber? Just small things that may increase her overall consumption of liquids.

[blacklist2000]

I'm a SLT and I specialise in dysphagia in both adults and children. A few things that I thought of when I read your post:

• most paed SLTs won't accept a dysphagia referral unless it comes from a paediatrician - this is usually because an otherwise well child with a swallowing problem is unusual. It needs to be looked into to work out exactly why there is a problem, it's not part of normal development iyswim.
• most dysphagia is due to predictable developmental reasons such as physical disability, cleft palate, syndromes, respiratory issues, prematurity and poor weaning etc OR due to environmental factors such as fast flow, positioning, hypersensitivity to certain foods/drinks etc rather than their being an actual swallow problem - an SLT will unpick this.
• I would strongly exercise caution over buying thickener OTC. It is food for medical purposes and is prescribed for a reason. Only an SLT is trained to decide whether someone should be on it following a thorough swallowing assessment. Putting a child on it could lead to oral aversion, dehydration, adverse behaviour around drinking and aspiration of thickener can be lethal.
• does your dc have chest infections / pneumonia regularly? Are they losing weight? Do they have a wet gurgle voice/cough every time they drink the same consistency of fluids? - if you can't swallow a certain thinness of fluid, it will happen most of time time on any drink of the same thickness. These are all factors which NEEDS a paediatrician intervention asap. There could be undiagnosed neurological issues as I said dysphagia is not normal in development and you need to know why there is a problem before coming up with a management plan.

[blacklist2000]

Also some of the things you've written suggest she is quite savvy and aware of change with food/drink. It's not uncommon, even at this age for children to be very manipulative around these changes.

I've had 1yr olds cough and splutter on milk coming from bottles with a different pattern on because it wasn't their favourite, they were fine with the bottle they liked - but the milk and teat were exactly the same - it was an expression of choice not an actual problem. Mad I know!

Does she prefer breast feeding generally? Is she fussy with all oral intake?

[Member652554]

Blacklist2000 Thank you for coming along and giving us your valuable input. I agree she needs a referral to a paediatrician. That's an interesting point about swallowing problems not being common in an otherwise well child . I agree with this although others seem less alarmed . Luckily my dd has not had any other problems besides the constant colds/nasal congestion and one bout of chest of group and chest infection. She is thriving well in terms of her physical growth and is at the top end of the percentiles. She has always struggled with drinking milk from bottles/beakers/cups. As a result she hates them with passion and will scream blue murder if you try to persuade her otherwise. She will sip water from a bottle/breaker with a straw (Which Bryna I have took into nursery for her ) . She will still cough on it regardless of the flow of the bottle/breaker etc. blacklist2000 what are the chances of this being due to enlarged adenoids as suggested by the GP and how does that sit with the fact that she has had this from birth in your opinion? She had a traumatic birth with the use of Forceps + ventouse suction at 42 wks after a lengthy 5 day induction process. She was left with a cut on her forehead and a large heamatoma on the back of her head from where the forceps grabbed her .

[Member652554]

*sorry about the typos , I meant to say she has had one bout of croup and a chest infection. She has also had constant colds and nasal congestion . She snores loudly when she has the nasal congestion during her sleep .

[blacklist2000]

Given what you you described just there, I would say her anatomy may well be causing a problem. Some children tolerate extra large tonsils/adenoids and manage just fine, others are plagued with problems. 1 chest infection in the history is ok and typical. Multiple chest infections wouldn't be so that's good.

A true dysphagia is a symptom of a medical problem not a problem that is normal for a child to have. It can only be address once the medical problem is understood.

I would list everything you are concerned about - not just the coughing with fluids but everything and go back to the GP and (nicely) demand a referral to the paediatrician. GPs are great but it's not their job to look at all this under a microscope. As an SLT I would want to see your dd once a paediatrician has seen her and ask you a million more questions and watch her eat/drink and if I were still unsure I'd do a videofluoroscopy.

[blacklist2000]

Another thought - does she breastfed lying down? And more upright for cup/beaker drinking? Position effects possibly?

She could just as easily be aversive to anything other than breast feeding and it manifests as coughing and resistance - impossible to say without seeing her. Hope you get answer soon.