Unsafe Swallow/Aspiration

[Hamleysmum]

Hello. Not posted on here before. DS is 16 months old, and has a lung condition which makes him dependent on additional O2, 24/7. He has an unsafe swallow for liquids only, so has a PEG. Aspiration has compromised his lung health, so we're worried about introducing liquids again. Just wondered, has anyone else's child had an unsafe swallow for liquids only, did it eventually resolve, and what, if any treatment/training did your child get? We are involved with SALT, but they seem to be at a loss what to do. Anyone got experience of a specialist hospital/SALT service we could ask him to be referred to?
Thanks for reading!

[chorltonandthewheelies]

Hi, my little boy is also oxgen dependent and was given an ng tube then peg due to aspirating. The only thing that worked for us was time, no fluids orally from 9 months now aged 6 he can manage small drinks of fluids topped up by fluids through his peg. The speech and language therapist did an assessment on him recently when he finally showed an interest in drinking and said he was now coping fine. Sadly I have no information for you on what changed, just a better co-ordination skill between suck/swallow, as his 02 dependency and poor tone have not improved. All I can say is never give up hope!

[Hamleysmum]

Thanks for replying-I think I'm just going to have to prepare myself for the long haul! Spoke to the speech and language therapist this week, she's going to re-assess him next month, but I am not holding my breath for any progress. I guess the main thing is to protect his lungs from further aspiration damage.

[meltedmarsbars]

Hi, my dd2 has been tube fed for 4 years now - unsafe swallow, and not going to return to oral feeding.

I'm resigned to the tube now - have got used to doing it in all sorts of funny places and ignoring the stares, etc.

Are you hoping for a complete return to oral feeding in the longer term? There are a couple of websites here and here that might be of use?

[chorltonandthewheelies]

I can only surmise that some how as my ds developed and his lungs developed he could cope with the fluids better, but it is strange because his O2 dependency is not any less. I had resigned myself to him never drinking when it became a reality recently but it was when he was ready - he showed us he wanted to, we never pushed for it. O2 dependency can bring so many other complications. I felt so guilty that until he got his ng tube we had been basically told to almost force feed him milk - no wonder he was so ill! Love to chat more if you have any other questions, dont often meet to many O2 dependent childrens parents.

[badkitty]

We thicken all drinks with thick n easy - can make things really really gloopy or just a bit thicker depending on how much you put in. We get it on prescription (fortunately as we go through barrels of the stuff!). Not sure if that would be helpful to start off with thicker liquids which he might be able to cope with and then under SALT supervision see if you can make them thinner? If he can cope with solids alright then this might work for him? My DS can't cope with thin liquids but is fine with solids and with liquids as long as they are thickened.

[auntevil]

Good links Melted. I was at 1 stage offered a tube, but refused and continued with puree. The links just confirmed my thoughts that the optimum time to push for any kind of NT development in eating was when i was begging for help, and now there might always be some issues that will arise from their non intervention.

[Hamleysmum]

Thanks guys, I'll have a look at the websites you suggest meltedmarsbars. We do hope for a full return to oral feeding, but it will be in the very long term. Chorlton, would live to chat more too-are you on any of the lung disease support groups too? I am new to Mumsnet, so not quite up to speed with how to post, send private message etc. I'll try and work it out! Funny you should mention almost force feeding him milk-that's exactly what we were told to do....take him off breast milk, onto high calorie formula and get him to grow and gain weight. I so wish that they had checked for aspiration sooner, I am pretty sure more damage was done by milk aspiration than the virus which harmed his lungs in the first place. Badkitty, thanks, will ask dietician/SALT about Thick n easy, we've got carobel on prescription, but it's a bit grainy. Thanks all.