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Yet more probs with Jack, problem with swallow, milk thickener, anyone help?[hmm]

(19 Posts)
caitlinnjacksmummy Wed 23-Jul-08 11:11:18

Hi all, does anyone have any experience of "thick and easy" liquid thickener? Jack saw the dietician yesterday and she said she feels Jack has probs with his swallow as, about 3 mnths ago he just stopped sucking the bottle and cup, and feels he is now scared that he will choke and this is why he won't suck bottle or cup, and he has hd a good few chest infections (on top of everything else!!)and the dietician thinks that if he has a problem with his swallow then liquids/foods can go down the wrong way into his lungs, hence the chest infections.Recently he has started gagging on lumps so bn resorting to sweet jars of baby foods and small savoury jars for like 4 mnth or 6 mnth olds as they dnt have lumps, he is 16 mnths now, has genetic disorder(dnt know name etc) but he has v. low muscle tone(hypotonia), cannot sit unaided, won't walk for good while, has severe epilepsy, but bought blender yesterday, but not a good cook blush, atm he is putting on weight brilliantly, so not a real worry but the sweet things he is having are not giving him enough nutrients so gotta give him things like meat, fish, potatoes etc, savoury stuff, but the milk thickener we were given yesterday he is taking great in the milk, he is not gagging now etc, but only got 2 sachets to see how he would go, dietician calling me on friday to see if it went well with him, and if so then will arrange a prescription for it, but gotta give it thru an open top cup as quite thick, but would love him to suck a cup again, any advice on cups that he could suck thick stuff from? And anyone used this milk/liquid thickener? grin

LIZS Wed 23-Jul-08 12:29:21

dd had it for reflux,and I used it as a sauce thickener like cornflour. We used the variable flow Avent teats but she was younger. Could he manage a cup with a built in straw ?

Sidge Wed 23-Jul-08 13:40:33

My DD2 has hypotonia and an unsafe swallow. We used Thick and Easy, it was great and you can add it to all sorts, not just milk.

I found that thickened liquids wouldn't go through most sippy cups as it clogged the holes. We used a Doidy cup (but didn't get on with it) then a Haberman bottle.

2shoes Wed 23-Jul-08 15:01:35

we use thick n easy have done for years.
we get it free on prescription. It is a life saver as with out dd would loose most of the drink.
I did once have a baby cup(she is 13 now) it had a lid and a hole for a straw. it was just big enoght for the thickened liquid to get through.

misscutandstick Wed 23-Jul-08 17:43:38

please forgive my ignorance - but i was wondering why it was important for him to suck, if he can manage an open cup?

{hugs} i know you've had a rough few months, but it sounds like finally there is a light (tho its quite small i imagine) at the end of the neverending tunnel.

caitlinnjacksmummy Wed 23-Jul-08 21:35:00

Hi guys, sidge do you think it is worth him trying a haberman bottle? Do I need to order online? Getting precription for thick and easy tomorrow, thank goodness, as we have run out , he takes it so much better and isn't afraid he is going to choke, poor little man, this also tells me despite all his problems he must have his wits about him, mentally, I mean, if he is fearing chokinghmm, misscutandstick he isnt managing an open cup as well as if I pour it gntly into his mouth with a cup tht has a spout and I have to squeeze, he panics quite a bit with an open cup as too much seems to come out , hopefully light at the end of the tunnel yes, seems every appointment, things just go from bad to worse

Sidge Wed 23-Jul-08 22:17:18

The Haberman is expensive but if he has no suck and struggles with cups it could be worth a try. DD2 was literally due to go in for a G-tube when we got our Haberman, and as she managed to drink from it we avoided the G-tube. She still drinks from it now at 4.5 as she finds cups very tricky and has no suck.

The good thing about the Haberman is that they don't have to suck, they can sort of chew it and you can help by giving it a gentle squeeze.

I bought mine online, the screw top, valve and teat actually fit most narrow neck bottles so it lasts ages - we got ours about 3 years ago and it's still going strong, we just had to buy new teats (about £12 for 2 or 3) as she kept chewing them!

caitlinnjacksmummy Wed 23-Jul-08 22:32:27

Thankyou!! Have just ordered a hberman for £18 from a place called "Oliver's Babycare" online, just hoping it comes soon, and does the teat that comes with haberman suitable? As gave u the option of different ones hmm, Jack can suck, he sucks his dummy still, just tht something wrng with his swallow, due to hypotonia, and nw as he has bn choking he is scared to suck on bottle or cup in case he will choke xx

Sidge Wed 23-Jul-08 22:46:52

Let me know how you get on with it smile

There was only one type of teat when we got ours. The bonus of the Haberman is that the teat has a valve between it and the bottle so they can control the flow much better, it doesn't free flow. And with the thickener you can play around with the thickness of fluids until you find what works best for him.

trace2 Thu 24-Jul-08 17:30:29

caitlinnjacksmummy sorry once again it seems never ending ! chloe can not tolerate lumps either and as hypotonia to, our salt says her is because shes scared of choking because of the hypotonia! ans she as reflux but she losing weightsad havinga g-tube put in in oct. as jack got reflux to?

caitlinnjacksmummy Thu 24-Jul-08 17:44:48

Hey, I am so upset today, I am petrified,, blended macaroni cheese from a tin right down to nothing basically, just a little while ago, and he struggled badly, he gagged really bad and had to stop, and then gave him a sweet baby jar an he then struggled with that, I feel so helpless, it has just bn the last few weeks he is struggling with lumps in food, and been bout 3 mnths since he sucked from a bottle or a cup, now I am scared he is gettng worse and will end up tubed too....I can't take this, not with all his other problems, so frightened for my little boy, scared he will have a shortened life, just want to cry

PeachyBAHons Thu 24-Jul-08 17:58:18

oh poor you

no real advice (other than a doidy cup if the bottle doesn't cut it) but wanted to bump for you

<<hugs>>

Seuss Thu 24-Jul-08 18:35:25

Like Peachy I don't have advice but bumping. How long until you get your Haberman bottle?

caitlinnjacksmummy Thu 24-Jul-08 19:12:50

Thankyou think it comes tomorrow xx

louii Thu 24-Jul-08 19:25:03

How is he sitting position wise for feeding? Gag reflex can totally be affected by positioning.
You probably know all this so sorry if i am stating the obvious.

Pasta like macaroni does not usually liquidise so well i have found goes very stodgy and can make gag worse.

Sidge Thu 24-Jul-08 20:32:24

How is he getting his fluids? Can he drink with the thickener in it? If so then ask your GP for high-energy drinks that you can give him. Do you have a SALT for feeding support? Has he ever had a swallow study done? (Sorry for 20 questions just trying to get the full picture!)

If the dietitian thinks he has an unsafe swallow and is aspirating (ie food going into his airways instead of his food tube - oesophagus) then you should hold off feeding him until it is further investigated. I would push for further support if you don't have it already - even if he had to be tube fed in the short term (as scary as that sounds) it could be the best thing as it means his airways are safe and he can 'learn' to eat without the worry of him getting enough calories. This is what we had with DD2.

Hope your Haberman comes soon and is useful!

caitlinnjacksmummy Thu 24-Jul-08 20:58:21

Hey, he is gettin fluids through an open top cup with thickener, but this seems to be a little too much for him, so squeeze it out a spout cup, but before when he never had thickener I had to squeeze teat of bottle or pour from cup ino his mouth which is the danger in going down wrong way, but not dangerous with thickner,he was choking with liquids and now he has a fear he will choke and this is why he won't suck she thinks, as he sucks the dummy, and once he starts to be reassured with drinking with thickener he may get confdnce to suck again the dietician thinks, she was v. happy with that,and said we r miles away from a tube, he is to get swallow test by SALT also, but just nw he is putting on weight great and she sed watever I am doing, I m doing a great job as he is thriving, just the lumpy foods became a problem v. recently, the dietician thinks it sounds (when i explained it all) that something is wrong with swallow and this is why he has had chest infections as been goin into the lungs, but I will be pushing for the swallow test, got dietician again on 2 Septmber and Salt nxt week

Seuss Thu 24-Jul-08 23:58:37

Hang in there - at least you've got people looking into it. Hope you can get to the bottom of it soon.

trace2 Fri 25-Jul-08 09:58:33

as the salt watched jack eat? ours as! they learn a lot from doing this! if i was you i would ask for an other app soon,you are doing a great job as the other have said.

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