What reasons/rationale did the speech therapist give for suggesting tube-feeding? Did she observe him feeding during the session to check on his sucking & swallowing skills?
This is a discussion on Help! I dont't want tube feeding within the Parenting Special Needs Child forum, part of the MummySG Special Group category; Dear all I went to speech therapist at NUH for my son's feeding issue, he wants to latch on for ...
I went to speech therapist at NUH for my son's feeding issue, he wants to latch on for milk bt reject bottle feed n spoon feed. So i request to see speech therapist
But during my first appt, I was very disappted, instead of giving me hope to help stimulate my son for bottle n solid food, she told me to give tube feeding which is not wht i wanted & schedule me to see her in another month's time as I dont wish to have tube feeding
Anyone can help to solve this issue, any good feeding specialist I can go to
My son can drink milk bt he prefers latch on
he can swallow I assume
so I dont't understand y he needs to be feed via tube
What reasons/rationale did the speech therapist give for suggesting tube-feeding? Did she observe him feeding during the session to check on his sucking & swallowing skills?
Yes like what epicuran mummy asks, why did the therapists suggests tube feeding in the first place?
in the first place, its only first session
she didn't offer us solutions or even try stimulation on my child...
yes we tried feed him infront of her
she sat a distance to see
n my son as usual when bottle puts in his mouth will reject and cry
she told us it seems he has no problem sucking cos I told her I latch On
she told me he doesn't drool too much which means he is swallowing...
if he can swallow he can suck
only thing he reject bottle teats or sometimes even spoon
isnt there any other way to stimulate or train him to take bottles????
Maybe it's the bottle? Or the teat too hard? What brand of bottle are you use?
You might want to try NUK bottle and teats or Tommee Tippee bottle and teats. NUK has softer teats while Tommee Tippee teats are like mummy's breast shape.
If your child can latch on and swallow, then logically he doesn't have a problem there. I think he just dont't want bottles or other modes of feeding. Some kids are very stubborn. My younger one is also like that. dont't want bottles, must choose spoons that he is fed with, etc. In the end we resorted to syringing.
Very stressful when he was younger, that's why the sippy cup was intro the moment he turned 5 month old.
Is your baby in a neonatal ward or something?
Cos' I remember tht time when my son was in neonatal ward, they have to bottle feed him, and he has to hit about 30ml per feed (I think), my son tht time could not bottle feed too, so in the end they had to feed him using a green tube...and he only drank 5ml per feed. The nurses & his pediatrician at Kandang Kerbau Hospital were very strict unless he drinks & gain the amt of weight tht they think is acceptable then he can be discharged....so my son was discharged a week later.....
thanks for all suggestions
my boy was drinkin from bottles very well till when he's 2 months old he started to reject till now (he's currently 5mths plus)
imagine we have changed so much teats, yes currently using nuk teats for him, he can bite the teat, milk flow out he can push the milk out of his mouth ( i dont know why, I tried similac at ist, then NAN then goat milk)
may I know sippy cup, how they suck it, they must know how to suck then water can flow rite???
and syringe feeding, he cries then hw to feed
use syringe can feed hw much??
we ever try small syring bt he cries and struggles
we no heart to do it
same goes to spoon feeding
my caregive and I have tried lots of methods
we are still trying every day
Have you tried feeding him rice cereals? since he does not take milk?
Does your boy have any underlying medical condition? Did he have any aspiration before? If you think he can swallow, why do you need to see a feeding specialist? They are to help kids who can't swallow to learn how to swallow. Why are you in a hurry to switch him to bottle when he prefers you?
I use syringe the same way I feed med. I use the small 3ml syringe, the bigger 5ml one is too hard to operate singlehandedly. He used to take 90 - 120ml at that time. The milk will be warmed up in vol of 30ml each. Very tedious.
My son who has been finally discharged yesterday from the hospital becos of bronchities is now on tube feeding.
We were intially very very upset about this tube feeding especially he was drinking from bottle and eating from spoon before this admission. Initially when he was admitted in the hospital, the docs put him on tube feeding becos they explained that they did not want to stress him on the swallowing when he was down with bronchities which would cause him to be breathless. They also said that to let his lungs rest and recover well from the infections and could go back to bottle feeding afterthat.
However, during one of the sessions when the speech therapy came to see my son, they told me his swallowing is not good and is at high risk of getting the milk or food into his lungs if he were to continue to feed through mouth. After that, they arranged for an xray kinda of thing where they fed him milk and rice cereals in different consistency and xray his swallowing. From the test, they could see some small amount of milk actually went to te wrong tube and into the lungs. He would give out a cry each time the milk or rice cereal went to the wrong side..aspiration. After the test, they stopped us from giving him the bottle but to continue on the tube feeding until the next assessment on his swallowing.
We were very sad upon hearing that becos all these while he has no problem with his swallowing and we have been following up with the speech therapy and was always assured that he has no problem with his swallowing. We felt much better when his neurologist and gastro doc came to explain that his swallowing can be retrained when he is much better. We were also told that the test was not a fair test to him cos they did the test when he was sick.
So now we just continue with tube feeding at home and yes, I have learnt to tube feed him and insertion of the tube when heis due for change.
first my boy is scheduled for MRI scan due to his devt delay plus he has mildly dilated ventricular issues on his brain found during my third trimester scan.
secondly the reason i need to wean him off breast milk becos I am working full time, but currently due to this issue I am on half days (from my maternity leave balance) so after march I will be back on full time again
and also his weight gain is very slow as his milk intake not much n maybe my milk ss also not tht much
thirdly i heard fm this forum a speech therapy at nuh called mr vasu very good, has he now left for pte? is it xpensive to see him to help? or in nuh can i asked to change another therapist or there's onlly one?
KJmummy, I can understand yr upset, imagine a tube coming out fm their body to feed them, when she told me this, I was very very upset too and no matter wht I feel i shld try wht i can first, to see if he can be weaned off to bottle rather than go straight to tube feeding w/o trying w/o stimulating
Phoebii, I only try rice cereal on him once, but I mentioned he dont like spoon as well.... so he cried n like didn't swallow we stopped
camom, I think i will try syringe again if he rejects bottle when i go to work
wht to do
dear son has cleft, we were asked to use special bottles, maybe you can try on those special bottles.
But I gave up on the special bottles due to water retention my hand has no strength to squeeze the bottle. Now I syringe feed him, he can drink up to 80ml per feed compared to bottle feeding only 40-60ml.
when you put the syringe n inject inside yr baby's mouth, did he struggle or cry??
Hi, I used syringe feeding for my 3rd daughter too. She had low birth weight, severe reflux and also prefer latching on and refused bottle, so we had to use syringe for a while. But what we do was, always try bottle first (for fussy baby, I used NUK latex teats which is softer) to get her to familiarise with it. Then when she reject, we then syringe feed her, and she will always cry too so do it slowly bit by it... It's very time-consuming and stressful... so good luck! O ya, when trying to bottlefeed or syringe feed, you have to stay real far away as baby can smell their mother's milk from far!
You should try back rice cereal as it's a matter of time to wean baby. Do it 2 hours after you have bf him so he's not too hungry or full. Try 1 tablespoon 1st and increase slowly.
hope it helps...
Yes initially will struggle, I swaddle him when I feed him. Slowly he get used to it. Now we dont swaddle him anymore, but he still will struggle occasionally. Be patience, it take me 0.5 hours to feed about 80-90ml. But I think its worth it cos he is finally putting on weight and we see him getting more chubby.
Last edited by Ashbaby; 22-02-2010 at 04:00 PM.
just wanna add that dont feel too upset if your child has to resort to tube feeding. for our children who already have medical probs and are at risk of aspiration, the docs will sure play safe and request for tube feeding. but tube feeding does not mean you stop trying to feed thru the mouth, provided there is no lung probs at the same time. for our babies, the most impt thing at this stage is to gain weight, then all their muscles will improve, including the mouth/throat muscles, and they can swallow better. if they dont gain enuff weight and grow at this stage, it might affect their muscles developement later on.
my ger was on tube feed, then button in the tummy, but i have no regrets now. from day one, the docs already told me her heart condition might need surgery anytime, so the most impt goal for her was to gain weight and stay healthy, so i just hardened my heart and follow. eventually, she did outgrow many of her medical conditions which the docs also cant explain why. but one thing i regret is not continuing to oral feed. we just did not want to stress her cos its already hard for her to breathe, dont know how to make her swallow at the same time. now at 5 years old, we finally cleared the heart but she is refusing anything in the mouth, so we just gotta try and try.
you can find out more about vasu here : Communication for Life he is one of the best speech therapist in sgp, so says his fees! :P
rae, hw much is vasu charges
I checked seems like NUH only has one for bbs
so cannot change
Thanks for sharing with us on your experiences with tube feeding and the recommendation for a good speech therapy.
I have called Communiucations for Life and unfortunately I have to wait up to 1 month before Vasu can see my son. Yes, he is that popular. As I want my son to start on the speech therapy on an urgent basis, I have also done some research and found another speech therapy clinic - Integrated Speech and Swallow Work Pte Ltd ( [FONT='Verdana','sans-serif']http://www.issw.com.sg/swallowing-therapy.html ) The doctor, Dr Radika returned by call withiin a day I called her and found out from me more about my son's condition. She actully offered home therapy service (charges slightly more than clinic appointment) esp for patients who are not convenient to travel to her clinic due to medical reasons.[/font]
[FONT='Verdana','sans-serif']Can anyone share your feedbacks on ISSW and Dr Radika for swallowing therapy? She sounded a very nice doctor over the phone.[/font]
Hi all mummies,
I also syringe feed my baby, she will screaming when she drink,just like she is begging me to let her go...but no choice got to force her drink..she totally refuse to drink and eat since she was 6 mths old.ever tried to let her be hungry for 12 hours,she stil refuse to drink n eat anything..sometimes after so much of screaming n struggling, she just throw out like merlion..heart so pain,sometime just cry together with her..
my baby is 11mths old now, she got GERD reflux since she was mths 2, she will shout n cried when her milk flow back everytime after feed, so she changed her drinking pattern when she was mths 2, she only drink when she was sleeping,but at the moment she heard some noise she open her eyes,she wil throw out whole thing..my life become more stressful, everyday fashion show,keep changing clothes n keep asking ppl around keep silent,I knw every1 must find me very weird..no 1 will ustand hw i feel..last fw mths,we keep running hospital,glen,mt.alvernia,kk,seen thru many gastro specialist, have spend alot but all no use,my baby ever admit hospital twice cause volmit till dehydration..til last 2 mths she suddenly refuse to drink even when she sleeping..have tried solid food, also fail,she just play with it n refuse to swallow..now the doctors also dont't knw what to do,ask us to consider for opn n tube feeding...but we really hard to accept it..
so altho you and hubby are very sad (we were too when told about the PEG), do think about the positive side. there was a boy i know from hospital, no doctors know what is wrong with him cos he has very weak lungs, always infection, sometimes even stopped breathing, so the doctors did the PEG for him to reduce him from aspiration. eventually, at about 3 years old, he is able to eat on his own, and the PEG was removed. he is a normal kid now.
hope tis helps.
another thing to add... you are not weird. for a long time, i feel that i am living in another world, cos no one is like me, running around in hospitals, meddling with medical stuff. we dont even allow visitors when our ger is warded so we are really "cut off" from the rest of the world. but you will get past it, and slowly adapt it into your daily life. dont think too much at times, just solve whatever is urgent on hand, then take credit that you have handled the situation. you are a great mummy! (so is daddy!)
Last edited by rae; 29-09-2010 at 11:59 PM.
Sometime trust your own instinct since you are the parent. I came across doc who give my kid/ aged parent(s) unnecessary instructions. They base on what they see as of now and make the judegment. But we see our kids everyday and hr....we should know best. Of course, there are some doc are so experienced an good that they can give right opinion straight away.
I have 3 kids and 2 aged parents...and I am just pissed with some doc especially those new and fresh grad doc who choose the profession due to its prestige, reputation and money only.
Accountants make mistake, they can make adjustments to the numbers. Engineers make mistake they can repair the parts. Drivers drive wrong way can make you-turn. But for doctors , they just CANNot make mistake...it matters life and suffering.
hi pinkdolphin mummy
have you tried seeing a speech therapist for feeding issue?
I will PM you the name later. He's quite good with feeding as he used to be with Spastic Assn & is US-trained. However, there are caveats when using his services, which I can't discuss in an open forum as it is third-party info (feedback fr other parents) & I can't verify it personally.
From a behv POV (after ruling out medical issue)
It is likely that your baby has developed an aversion to milk bottles due to repeated reflux.
If GERD is still a problem, give her smaller feeds. If she is taking very little milk & has poor growth, pls consider switching to a meal-replacement milk such as Pediasure.
If she enjoys putting things in her mouth, you can try giving her spoons to play with. Or dip chilled teethers in different foods. Or give her a bowl of cereal or empty milk bottle to play with. Strap her in a high chair so that she is focused on the food & textures. Be prepared for a small or big mess.
I'm in a therapist in early intervention. Personally I've only seen 2 kids, aged 3+ & 5+, who have autism and refused to eat. They drink milk and take in very little solids and water. I couldn't help the girl as I was pregnant then.
For the boy, the mother and I worked together. We managed to make him drink water from syringe, then a bottle. He still gags easily and stores food at the cheeks. But we can put a spoon in and he takes 1-2 meals per day. He is still very picky but tolerates a few spoonfuls of vegetables. This week, I managed to put a toothbrush in his mouth. We were very happy cos his speech therapist couldn't do anything as he refused to open his mouth. Now that his jaws are "loosening", he babbles a tiny bit.
What I'm trying to say is if there are no other urgent medical issues, try a speech therapist who specialises in feeding. Experiment with different tastes and textures daily to get your child interested in food. Give smaller milk feeds to reduce reflux. Always show a happy face during each feed, esp the end. Some kids may prefer solids as they do not associate it with throwing up. If your baby likes solids, be sure to restrict amt to avoid reflux.
You can also read up about GERD and milk refusal.
Hope the info helps
PS have you tried eating same foods in her view? If she tolerates water, adding a dab of lemon or citrus in water may induce swallowing. Sugary stuff induces salivation. Use the TV to distract if she gets all stressed up. An anxious baby throws up very easily...
Last edited by ping26; 30-09-2010 at 11:41 PM.
I really you'stand how you feel for what you went thru. Me too, i always find myself living in another world. I always hide myself at hm, I dont't knw how to feed my baby outside, I dont't knw hw ppl look at me when I syringe my baby n hw she screaming..I ever went shopping once cause I need to buy some clothes for her..I tried to feed her at nursing room..she just screaming till the mummy next room ask me do I need help,I dont't knw hw to explain to her so I just told her my baby is sick, then suddenly got another mummy just walk in to my room n scold me y I occupied the room so long n y I push the trolley in(as I need many stuff for my baby feeding,syringe,small container incase she volmit,milk bottle and etc) she said I should share the room wit others..I thought that is individual room for every mummy..I can ustand maybe she was piss off coz her baby very hungry..but I cant feed my baby fast as she will throw out more...I just appologised to her and told her my baby is sick, I cant move her much when feeding, she will volmit..hope she can ustand..then she just shout at me if you baby sick, you should not come out! when I heard that, I really feel hurt,my tears just come out...it means as sick ppl, we dont't have right to go out? she would never knw hw we feel?her baby so healthy and so chubby, at least double size of my baby.. I just stop my feeding n walk oou fm the room...now I really affraid to go out.. when I saw others baby growing so well,5-6 mths alrdy knw to hold bottle to drink milk,so envy,so sad..sometimes will keep asking the god y choose my baby...