ds swallowing difficulties/oro motor skills/feeding - another scary choking episode last night - who should be giving us support?

[hazeyjane]

Ds (22 months) dribbles a lot and still has episodes at night where he seems to choke on his own saliva - he had one last night that was particularly scary, as I couldn't seem to calm him down, he was rigid, his neck puffed out and tense, and i could hear the liquid bubbling in his throat. When i spoke to the feeding SALT who did the videofluoroscopy about this she said I should try giving him a drink, which is laughable really because it would be like trying to give a drink to someone having a seizure (he is completely hysterical when it happens). Also I would have thought that the last think he needs is more liquid in him. At the moment we hold him upright, and jiggle and pat his back and try and encourage him to swallow. He usually does this after a few minutes (he will snort, or i can hear him gulp) and then he will relax. Last night it just seemed to go on longer, and i thought i haven't got a clue how to deal with this. I have left a message with his consultant, but he has been crap about calling back.

I feel as though we are stuck at in impasse with ds and eating/swallowing. He is a big boy, so there is no problem with putting weight on, but he has a poor swallow, and trouble manipulating food in his mouth. He aspirates and gets frequent chest infections (gastrostomy talked about), and still only eats mashed/pureed food and biscuits/crackers

Dh has noticed that he seems to have difficulty controlling his tongue, it is definitely overlarge and is either out of his mouth or he rolls it up behind his top teeth, but sometimes it seems to twist itself around and roll itself up. Oro motor exercises have been mentioned, but i am not sure where we should be getting this support from. I would also like some advice about food and diet, I have asked the HV, but she gave me the sort of advice I would expect for a fussy, nt toddler, which wasn't very helpful.

He is on omeprazole for reflux, but I am not sure if it is helping - as i say he is still having episodes like the one last night (which i guess could be refluxing or could be choking on pooled saliva?) He has had hyoscine patches to dry up the dribble, but they didn't work and the patch site became infected.

Sorry, it's a mammoth post, and all a bit disparate (and desperate!), but last night terrified me, I am scared that these episodes are getting worse, and I am not sure who we should be asking for help.

SALT for the oro motor skills. There should be one within your pct that has swallowing as a specialism
Dietician is unlikely - as with DS3s case. Most dieticians are so over case loaded that they work on a failure to thrive basis. SALT may be able to refer and get further? - It worked in our case.
Best thing I did was ask for a second opinion - was referred to GOSH and now they deal with his case. Food psychology can help too - and work out strategies for your DS to 'get rid' of whatever he thinks is blocking his throat and deal with the anxieties that it causes.
Totally get your frustration. DS3 is still on puree and dry finger foods (a handful) and is 5 this summer. It is scary when you see them get redder and redder and look as if they're just about to explode.

Hazey. I have just left you a message with the name and contact details for the specialist SALT at GOSH. She was really good. Hopefully she is still there, as we saw her two years ago. x

We actuallly use a suction machine to clear excess secretions from DD's throat. She produces copious amounts of phlegm and cannot always clear it herself. Sometimes she 'forgets' to cough and the pooling of the saliva causes her to go very pale - as her O2 levels drop. I think your DS is a lot more active than my DD though, so he might not tolerate a tube being stuck in his mouth to clear away secretions, but possibly something to discuss if secretions are a major problem. Our machine is supplied through our Community Paediatric nursing team.

Thankyou, that is really useful.

Ds sees a SALT as part of the sn nursery we attend, but it is so intermittent that it is pretty useless. I think the the 'food psychology' thing may be useful as he gets older.

Sally, I have only just listened to your message - thankyou so much, that is really helpful. I will definitely try to contact her.

When ds had his Team Around Child meeting at 10 months old, it all seemed so positive and hopeful, everyone pulling together with a plan! Now a year on, the plan has fallen apart and I seem to constantly be fighting to talk to the right person and work out what is best for ds.

I have just been sat drinking a glass of wine with dh, and he said, '...we would have been lost without Mumsnet.' He's right, I don't know what we'd do without the help and support we get here.

I will check with Carrie my SALT at JR to see if Alex is still at GOSH for you. She's away, so won't get back to me till next week.

Mumsnet. It's good isn't it! I wouldn't have got DLA HRC and HRM without the SN Kids folks. Anyway, you've got my number if you want to chat about it. Everyone is so amazingly supportive. I wish I had joined years ago!

The suction thing is good, it's just how comfortable he would be with a catheter in his mouth to suction out the secretions. They would give you training on how to use one and how far you could go in with one. Like Bigbluebus, we used one for years with DD's trachy.

I think ds may have the beginnings of a cold, which might be why he has been struggling with swallowing and grunting so much over the last few days.

Unfortunately I also missed 2 doses of Omeprazole, because the pharmacy had to order in his prescription - maybe it makes more of a difference than i thought

Sally, I forgot to ask, how your dd and her nose is getting on? I hope it is healing well.

DD has definitely broken her nose, but they think it's fine and if she's bothered about it they'll fix it. It was more my anxieties about her apnoea tendencies tbh! But thank you for asking Hazey! Hope DS is on the mend soon. Has his walker arrived yet??

Oh good about the nose, hope they have sorted something out wrt sleep apnoea. They have picked up the (evil!) standing frame which has been cluttering up our house, to make room for the walker, but it won't arrive for a couple of weeks.

They were talking about suctioning ds when he was in hospital last, because he was frothing at the mouth a lot with very thick gunk, he didn't seem to be able to swallow it at all, but you could hear it in his chest and upper airways. I can't remember why they didn't now.

I have just emailed Carrie about Alex. So hopefully she will cone back to me on Monday with an answer.

Do you have a Community Paediatric Nursing Team that you can contact about the suction issues? I just normally ring my local hospital switch and ask to get put through. They maybe able to advise you re. the suctioning.

Sorry your DS has a cold Hazey. Hopefully his 'panic' the other night was due to worse than usual congestion because of his cold, and he will be fine in the next few days.
My DD can't blow her nose so it is a nightmare when she gets a cold. We use Olbas oil on a dry wipe for her to inhale and open things up, but we also have to suction her a lot more when she has a cold too.