Help - 4 year old with dysphagia (massive difficulty in swallowing)

[Bellbird]

For the past three weeks d1 (4) has had massive lymph glands in her neck and possibly something else that nobody's spotted that has made swallowing a real problem for her. Initially, she was gagging on solids, until eventually she found it hard swallowing her own saliva. She's regularly spitting it out saying it tastes weird. I was told by an out-of-hours doctor a fortnight ago that it was 'just psychological' and that she would come round. Well in all that time all she's managed to consume is smoothies, yogurt drinks and soup through a straw - and that's on a good day. We enjoyed a brief reprieve when she was put on antibiotics by a considerate GP on Wednesday - on Thursday she managed a Phili sandwich. However, since last night she cannot even manage to sip drinks. We've taken her to hospital to see a doc to check her for signs of dehydration. She's ok for now, apparently, but she's really exhausted and is now refusing to take the medicine. She has been referred to a paediatrician, but not until Tuesday afternoon!!!

Thinking about it, she's always been tricky with food, a slow eater and refuses uncooked veg. I should have seen the signs and taken her to see someone before all this happened. I'm feeling so guilty and frustrated, but she's been such a strong lass till now (hence her stubborn attitude). I'm so unhappy and feel like I've failed her :-( sniff, sniff.

Semi solids like yogurt, custard, icecream etc are MUCH easier to swallow than liquids or solids. Keep her on those until she can be seen by the paed. Keep calm, reassure her and don't make a big deal out of it. If her throat is sore give her ice lollies to suck, and calpol or nurofen.

Ice lollies will ensure she gets enough fluids.

The only time you should really worry is if she has difficulty talking/breathing or is drooling and unable to speak or swallow, in which case you go straght to A&E - but it doesn;t sound as if that is the case here.

You haven't failed her - you have sought medical advice and have been referred to a specialist.

I agree with ice lollies!! (yum)

Would DD think about sucking something like a wotsit!!!!!! ( dare I mention it) Maybe the salt in it would be good for her. ( I just remember Dr telling me to get DD to suck on these while she was recovering from a very nasty bug)

Try and get the antibiotics down her if you possibly can - if she has got tonsillitis she needs them.

We tried an ice lolly today, but she handed it back to dh to eat instead! Smoothies, which are fairly thick have been working up 'til today - as have the yogurt drinks. She spat out fromage frais. Must confess, we haven't tried custard. We'll give it a try tomorrow and the wotsits!

Thanks for the reassurance. I firmly believe that there has always been a swallowing reflex issue that has got worse because she's got an infection. (She refused a bottle and weaning was a nightmare. However, she thrived regardless and after four years would eat pretty much most things other than raw veg and raw tomatoes.) My ds has been a doddle to feed from the start - which should have aroused my suspicions as at 18 mths he could finish a meal 15 mins before her (at 4). I've always shrugged off her eating habits as fussiness

Good luck, let us know how you get on in the next few days!

Have you tried soup? Just a thought! you never know! haveyou asked her what she would like to eat, (obviously, only while you are waiting for that appointment on Tuesday!) That may work - I hate it when DDs wont eat!

Bellbird-My DS has Asperger's and has a lot of issues with food. He went through an awful period like this-refusing all food and drink and even unable to swallow his saliva. I was told by the paed that if it ever happens again I must take him to a and e, as children do occasionally need to be put on a drip when they are like this. So keep a close eye on her and take her back before Tuesday if you are at all concerned.
You have my sympathies-I know how worrying it is and how helpless you feel!

Hello, I'm a dysphagia trained speech and language therapist, sorry to hear of the nightmares you're having!

I work with adults, but your dd has the same swallow as an adult.

It beggars belief that the doctor dismissed the difficulties as 'psychological' without any form of assessment. If your dd was an adult, they would be referred to someone like me for a swallowing assessment straight away if there was any concern over the swallow mechanism. (probably not if they thought it was a result of a viral infection, but certainly for most other things, including psychological).

You need to see a paediatric dysphagia trained SLT. If your dd is losing weight, go and hammer the doctor's door down - I would. You can't get better if you are not eating well. If you can't get anything down other than fluids, your doctor can prescribe special drinks with extra calories in (Fortisip and Clinutren are two of the main brands).

In terms of consistencies, pureed/ smooth consistencies are of course going to be easiest to manage.

Will keep the thread bookmarked and check how you're getting on!

6eyed has said what I was going to say only much better!

My mum had problems with polyps in her throat which gradually got so bad that she could only swallow fluids (thin soup and milkshakes were her staple diet). The doctor forgot to mention that she could get the high calorie 'food' drinks on prescription and she refused to buy them from the chemist because they were so expensive (silly woman). She's only 5 foot 2, but she'd lost so much weight that she was only 5 and a half stone by the time she finally got the polyps operated on!

Anyway, yes, definitely see if you can get a prescription for the meal replacement drink things (if your dd can swallow them).

I hope you get some answers soon. Thinking of you.

The major panic - dd spitting out foamy saliva and unable to swallow fluids - is off - thank goodness!! Her glands went down on Sunday am. She then started on lollies at her bf's house which encouraged her to swallow her spit, had some yogurts in 'fruit shaped' containers then managed some Monster Munch!! I owe a lot to bf's Mum for the calm and relaxed atmosphere that helped dd out.

However, I agree it's time we get a proper diagnosis, because I'm not going through that nightmare every time her glands and tonsils are swollen with every new virus she catches at school. She is still taking AGES to eat her meals and I'm not going to rush her (never have) as her new school did somewhat rashly and not in full possession of her history.

I agree that a diagnosis of 'purely psychological' was completely unprofessional and very alarming. My Mum reckons we should report that out of hours doc to the PCT. For the time being I want to concentrate on helping my dd! Thanks for ALL your support. I'll be back to report on what the paediatrician decides is best!

I am so pleased Bellbird, at least its a start in the right direction! Good luck, hope things continue to improve.

Seen the paediatrician and have been referred to a SLT to check dd's swallowing action. Outwardly she's over the worst, so they're in no rush to run clinical tests. Her swallowing problem may be neurological in origin, but there is little an ENT expert can do if the defect is in how she's been wired since birth rather than anything mechanical. Anyway, I'll be letting her school know that they should not pressure her into gobbling up her snacks and lunch!!

I'm glad you've got a referral Bellbird and I hope that you get things sorted for your dd soon.