Type 2 thickened fluids?

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Does anyone have experience of having to only give type 2 thickened fluids or custard thick fluids for all drinks/liquids?

Yes, ds had to have this when younger, as he aspirated thinner liquids. I have also looked after children who have had to have thickened liquids for similar reasons. We used carobel, to thicken.

Yes I do. I'm a SALT and specialise in swallowing disorders and prescribe thickened fluids a lot. Is there anything in particular you want to know or ask?

Thanks for replying, after a fluoroscopy today we have been told to give type 2 fluids/custard thick fluids but we have already tried Carobel and we couldn’t get DD to take it at all & the local SALT said to stop as she wasn’t drinking at all.
The hospital are writing a list of fluids we can try & things for GP to prescribe (coming in the post) but said if she is thirsty she will drink, but does thickened water really quench thirst?
Last time we tried Carobel (only for a few days) DD was drinking bath water (of course we tried/did stop her) but it was pretty tough to see how thirsty she must have been.
Tried googling the type of things they are going to prescribe or recommend but not getting far. Just looking for experience/wisdom & presume you have to be quite strict so they don’t pick up other drinks etc.
The hospital said they will do another fluoroscopy in 6 months to a year to see if there is any progress.

How old is she? Commercial thickeners aren't recommended in under 1 yrs old I think - hence using carobel. If over 1 there are different types of thickener that can be used, some better than others.

A videofluoroscopy is the best way to see what is happening and the level of risk of aspiration with a thinner fluid but it needs to be in conjunction with the bigger picture - medical background, mobility, chest status etc.

Custard (stage 2) is pretty thick. I don't recommend it if I can help it. Strictly speaking 100ml of thickened fluid gives 100ml of hydration the same as 100ml of thin fluids. The difference is that it doesn't taste as palatable and enjoyable so the individual doesn't want to drink and then becomes dehydrated.

My usual tips are: using a clear thickener (depends on age as above), use it in really cold drinks and drinks with strong flavours, make sure drinks are fresh etc. totally spends on age - not quite as easy with a milk drinking baby.

What does your paediatrician think?

Thanks to both of you for replying, I should have said she is two, should have said it was a video fluoroscopy. The video showed aspirating on normal and type 1 (syrup) thick liquids so needs custard thick.

The tips about cold drinks are great, thank you.

I am worried about her not drinking, worried about all this effort then her aspirating the bath water or any other water she gets hold of. Also worried about the practical side for Nursery & at home, so she can only get the thickened fluids as it makes it a waste if she then can have a normal drink.

We won’t see the paediatrician until January. The hospital said next step is a letter with the fluid types and prescription list to GP, SALT & consultant. Then we try it etc.

The Carobel didn’t work, she would not have any of it. So will see what happens next.

@hazeyjane what age did your son grow out of it?

Has she had a history of chest infections, failure to thrive etc from the aspiration?

Has she got a complex medical background? Dysphagia is a symptom of a bigger condition so I would hope this is something you were expecting rather tHan out of the blue?

It sounds like you have a tertiary service for the videofluoroscopy so the people (SLT and dr) who did it don't know you, your child and the full background to the story so it's easy for them to look objectively at the results and make a recommendation. Your team will then receive a report stating what should happen and they weren't there to be involved in the decisions - not a model of working I like personally especially with children.

At the end of the day, it's just a recommendation. You need to discuss it with your SALT and paediatrician about the risks of aspiration/chest infections (has this been happening already and she's not thriving?) on thin fluids vs the risk of dehydration with thick fluids.

The most important thing here is the why? Is her swallow deteriorating due to a condition and maybe thinking about an early gastrostomy would help enormously?

I wish you luck x

I second that drinks need to be cold and have a strong flavour. Plain thickened water is pretty horrible but thickened lemon squash tastes reasonable. Milkshakes, juices, lemonade also taste ok thickened. Appreciate it's not the healthiest but you want to get fluids in, whatever they are. Try spoon feeding if she won't take from a cup. A Doidy cup can be quite effective. Good luck.

Thanks all, she has had repeated pneumonia and has quite a significant patch/shadow (not the correct term I am sure) on her lung even when the pneumonia or infection has gone.

She is two & any cold goes to her chest that combined with the pneumonia & patch still on her lung (been there a year plus) they have gone down the aspirating route. She has not had a sweat test but they have talked about it, but consultant wanted to do this first.
Apart from that she is otherwise fine.

The local SALT has been helpful, but agreed to give up the thickened fluids last time as she was not drinking then literally drinking bath water in desperation.

Will take on board the posts & phone the SALT Monday.

To the poster who said was it done out of area - yes - video fluoroscopy at a children’s hospital who may now take her care over, but they have written the recommendation back to local consultant (not seeing until Jan) & GP.

What advice did you have about reducing aspiration after giving up the thickened fluids before? Any other advice?

Drinks sitting up only & to wait for the video fluoroscopy. SALT did not think she was aspirating from observations.

We used to feed Dd thickened fluids off a spoon although she had multiple issues and could not drink from a cup or feed herself anyway.

No normally developing child without a diagnosed health problems should have a swallowing disorder that is resulting in aspiration and pneumonia. I would be wanting answers or in depth testing as to why this is happening. Dysphagia is usually neurological in origin and goes hand in hand with specific syndromes, genetic conditions, physical disability, brain injury etc. Swallowing problems don't happen in isolation without a cause - I can't stress that enough.

Wow I’m watxhing this thread with much interest.
OP, I’m so sorry you’re going through this. My daughter is 9. But at the age of 2 she was diagnosed with dysphasia from a video flwuroac

Sorry sent too soon!!
She was diagnosed on video fleuroscopy. She too had repeated pneumonia’s and often spent time in hospital, including HDU.
We were told that because of asthma, she couldn’t swallow and breathe, so chose to breathe!!
As she’s got older it’s become apparent she has problems with her muscles and is now under a neurologist.
Just food for thought..

At the moment I guess I can only go on what information we have which is the chest problems and video fluoroscopy evidence of aspiration, but in all other areas developmentally she is fine.

If the two previous posters want to PM any specific things I should ask about, that may be helpful and could save hours of googling or write it here if you want to do so.

At a bit of loss really, someone earlier wrote about the balance of dehydration and getting pneumonia/danger of aspiration- that’s what I think I need to ask about & push on for now with SALT/GP & then have questions about the why/what/future for next consultant appointment.

My son does aspirate and was diagnosed similarly through a fluoroscopy we were on thickened fluids for a good while. Honey thick was how it was described to us. I found it difficult to get him to drink but he was also on a ng tube so I could push fluids through that without aspiration risk. I found milkshake worked best. Eventually though with him refusing to drink and with wanting to remove the tube we were advised that plain water was much less of a risk of infection and if his teeth were kept very clean even less of a risk. He is now three and I do notice him coughing sometimes when drinking but it's not every time.

I think you need to leave a message for your treating SALT saying that you've been told your daughter is aspirating, you have had recommendations but you don't understand how to implement them safely. If you can sound worried and stressed in the message, that should help! That would get me on the phone pretty fast (I don't work with children though).

Thanks all, awaiting the letter and will see what it says and speak to the SALT we have seen before. I think I am going to ask for the X ray on her lung to be repeated and ask more about the patch/shadow.

Would CF cause the swallow problem?

I am not sure on the why she does it, it felt like we were being told some children do aspirate then grow out of it.

To the poster with the now 9 year old did the swallowing get worse?

Good morning.

My daughter has thickened fluids, like a very thick pouring cream consistency. She won't touch plain water, so has juice or warm milk. I used to make the juice a tad stronger than recommended to get her to drink but have managed to scale it back to the recommended concentration. She is 2.5 and been on thickened fluids since she was under a year.

She has a complex brain issue.

Sorry I went awol.
My dd (9yrs)..her swallowing got better as she grew. She used to be aware of how she swallowed so would do a ‘double swallow’ which helped loads. She ate a lot slower than her peers at school and still does. It’s only if she’s tired or poorly that we see her choking a bit more.
Has your dd had a bronchoscopy to check the patch on her lungs?? My dd had one which showed food bits on her lungs. And that’s what initially prompted the fleuroscopy.
Good luck and like other people have advised..ask loads of questions..you’re her advocate

@woosey35 only an x Ray then the video fluoroscopy. No other problems but reading this thread has concerned me, there could be more to it, but right now it is just the chest weakness and very normal development.

Just an update

Just an update-

We got the full report and have seen the SALT, she has two problems that are on the lower end of the concern scale - in layman’s terms, the flap to the airway stays open too long when she drinks and should shut quickly. Second problem is the silent aspiration. She has started thickened fluids and the SALT has explained the report to us, we have now been referred to the Royal Brompton where she had the video fluoroscopy to see a consultant & going this week, so hopefully we will get more answers. Our local chest consultant appointment wasn’t until January so good to be going earlier and to speak to the consultant who interpreted the results.
The SALT seemed to say she does now see these problems in NT children but it will be one of the questions I will be asking the consultant.

She takes the thickened fluids fine now, but we have a problem with the bath water as she downs that however shallow we make the water so it makes all the thickened water a bit pointless!

Thanks to those that posted before.