Anybody with experience of dysphagia?

[Makingsense6]

After months of coughing, gagging, food aversions, sickness amongst other things. DD 13mo has just been diagnosed with dysphagia following a fluoroscopy assessment. We are awaiting further tests and consultants review to arrange a care plan and next steps.

The other possible issues are malrotation and gastric outlet obstruction, awaiting confirmation.

This was initially dismissed as reflux and CMPA. But given the difficulties in weaning and general behaviour observed by myself, feeding consultants and nursery, they finally completed further tests.

Has anyone any experience of these problems? And able to provide an insight on what might be next?

I know the hospital will go through this with me, but I have to wait a few weeks. As a single mum I’m quite anxious and frustrated it took this long.

I have experience in working with dsyphagia in the elderly and post op patients in hospital. Other more educated and qualified folk will be along shortly no doubt but its likely the hospital will ask you to amend her diet. Softer foods minced moist mashed or pureed. Thicker fluids ( thickner can be obtained from a chemist usually 1 spoonful per 200ml for stage one worth chatting to chemist). As for diagnosis and treatment that will be planned out by the drs dieticians and surgeons if needed. Someone may be along with better advice than me so id suggest speak to gp at the very least with the info you are provided with and dont do anything without their say so . Always follow drs advice anyway .

Have you got a Speech & Language Therapist to talk this through with? You should expect some initial ideas for feeding, but given her age, maybe some ideas of how to develop skills.

I know it all seems a bit daunting- but make sure you have a Paediatric SLT as part of the team. dysphagia/Swallowing is their area.

@Feilin thank you for taking time to respond. GP has said wait for the pediatrics. We have another barium swallow in two weeks then a plan should be formed. We are mainly on a soft food and milk diet anyways. I’m just struggling to put my trust in getting advice, as it’s took me so long to even get tests done, as it was blamed on “development”, reflux, and behavioural for so long.

@burrito thank you, for your advice. She seems to have “developed” her little way of swallowing somethings. Which is good, just can’t have large quantities as it must cause discomfort. We do have a SLT feeding consultant, Pediatrician and dietician. It was thanks to a SLT we got the tests, as the pediatrician refused. Will see if I can arrange to have a chat sooner with them.

Hi Makingsense6. I just came across your post and wanted to ask how your daughter is doing now? I have a 13 month old daughter who has similar symptoms. She has never been able to swallow food properly and frequently regurgitates anything which she does manage to swallow - I’m talking tiny bits. The only thing she does manage to keep down is anti-reflux formula. She has a video fluoroscopy next week - I have been asking for it for months and we were finally referred by the SLT team. Our paediatrician just doesn’t seem that bothered but I’m so anxious about her not being able to eat! I’m hoping we’ll get some answers from the fluoroscopy but I’m just so worried about her as we haven’t really seen any improvements at all since starting to try and wean her at 6 months. There’s not much on the web and so I’m desperate to find someone who has a good news story to tell on the subject. I hope you don’t mind me asking. Thank you :)

@CharMar sorry to read your going through similar with your DD. My DD is now 19months old, and has improved slightly with her eating. We had a barium swallow which showed something with the valve in her stomach was under developed, and she has a small hernia. She can now eat more lumpy foods without gagging, and I have seen progress in the last 3months. She still struggles with larger pieces or things that are harder to chew. Also a slow eater and fussy with foods and textures. We are due to repeat her tests in a few months. But SLT have done some feeding workshops with us.

i hope you get some answers. It does feel like your hitting a wall, especially when you feel like weaning isn’t progressing. Especially when other children seem to making good progress. Out SLT was really helpful, and explained it might take time to develop that’s skill. We also had an ENT appointment and her tonsils are grade 4 so we are waiting an operation to have them removed, which should also help. Hope your DD is ok.

Hi Makingsense6. Thanks so much for getting back to me. I’m so pleased to hear that your daughter is doing much better with her eating now and that you have some answers to help explain what has been going on. We had a barium swallow but it wasn’t v successful because she was so traumatised by the whole process. They missed her swallow function and just said that everything else looked fine. SLT said we might need to repeat the test. I’m really hoping we get some answers from the fluoroscopy this week though. I think the worst thing is just not knowing what is wrong and just hoping that it’s not something serious or life threatening. However, hearing that you got some answers does fill me with hope that we will too and that we’ll finally get the support that we’ve been desperate for for so many months now. Thanks so much again and I do hope that your daughter’s eating continues to improve even more going forwards.

Hi
any update on your DD? ☺️

@Vittoria123 hi, DD is now 3.5years. She had surgery 14months ago on her swallow, alongside her tonsils and adenoids being removed. It was a few months of recovery, as she refused all foods initially, even her “safe foods”, and for a few weeks refused all liquids so was on drips. But for the last 10 months she’s made good progress and has started eating new foods like pizza, bread etc. Her food intake is still limited, but SALT believe this is more down to her learning the new tastes and textures, rather than a physical obstruction. We do still have thickener for her evening drinks, as she has a persistent cough, which doesn’t seem to be asthma related. Her general health and intake has improved since the operation. X