Fussy Feeders - Dysphagia - a possibilty other than reflux

[~Emma~]

 Going up a teat size would be difficult if your LO has a tongue tie as thay cannot 'latch' on to the bottle properly. Many health professionals believe that it does not pose a problem for bottle fed little ones but I can tell you differently! When we got the reflux sorted out he was still a terrible eater. i thought it was aversion to feeding due to pain in the past but my gut told me something else was up. I got it checked and it was confirmed for me not too long ago. The midwife said it was significant enough to make bf'ing a huge prob and bottle feeding could be difficult.

  My LO also never cries for food which is why an eating schedule suits us...otherwise he would never eat! Some tongue tied babies get so tired sucking on the bottle as they cannot suck properly that they will stop before they are full.

Can you LO stick her tongue out?

Got to run...feeding time.

Emma xxx

[Lisaaaaa]

Luke has stuck his tongue out in the past, but does not do it frequently.  Did you get your LOs tongue tie corrected?  Or do you just have to deal with it?  And is your LO back to being a "normal" eater now?

Luke does LOVE his pacifier... would that be the case if he was tongue tied?

[~Emma~]

Mmmmm...not sure about the paci.

 Some tongue ties can stretch and be ok. DS's has stretched and he can now stick his tongue out a bit better. In the beginning feeds were messy and alot of milk would end up down his chin but I guess the older he gets, the more used to it he gets and now feeds are not too messy. He has found his own technique for eating but he does 'click' and 'squeak' alot whilst eating!! He is by no means a normal eater and some days can eat as little as 20oz. He is getting better slowly though.

I am not getting it corrected as he os 6mos now and the bottle feeds will be be decreasing soon ( yay!). The pead has told me that he shouldn't have speech probs. i hope that is the case for us.


 My friend who had a severly tongue tied baby said she loved the paci as it gave her opportunity to 'rest' her tongue. Her dd's tongue tie was really bad though and she said before she got it clipped her tongue could not touch the roof of her mouth. Mmmmmmm....

Emma xxx

[Lisaaaaa]

I think more of Luke symptoms fit dysphagia and reflux... but I will for sure get the tongue checked, too... we are hoping to get into a specialist VERY soon... here's a pic of Luke with his tongue out.  Taken around 2 months (right when his feeding problems started).



Would he have been able to do that if he were tongue tied?

[Lisaaaaa]

Brodiesmummy - I just checked, and Luke can definitely stick his tongue out.  But when I was checking, I felt a tooth!  I am now praying that that is why he has dropped to 16 oz a day right now... I know he has a feeding problem, but maybe the tooth coming through has made it worse temporarily.  I would love to see him back at 20 oz at LEAST asap.

[~Emma~]

 He is one cute baby! 

 I am no expert but I would say thathe probably wouldn't be able to stick his tongue out that far if he had a tongue tie. Sorry if I confused the matter and got you worried needlessly. 

 Alot of babies do get a decrease in appetite due to teething. Poor wee soul.

Emma xxx

[Lisaaaaa]

Awwww thanks for the compliment on my LO!

Thanks for bringing up tongue tie anyway... I am pretty sure he doesn't have it, but I want to rule out everything now so we can figure out the problem.

So far, the level 2 nipples seem to be working out better than the 3s... we also have Simply Thick ordered and should get it late this week or next week.  I am hopeful that some of this will work out!

Also, my DH faxed a bunch of info to the dr. we saw on vacation to try to get our referal to the children's hospital here... I hope it works out!

[* Paula *]

Huge hugs,

I am sorry you are having such a rough time with feeds for your lo, and even more having such a hard time getting the doctors to listen.

A lot of time, I find is that the DR's do not want to say much about Reflux etc, as they do not know much about it.  I really hope that you get some answers from the new doctor.

Emma has given you some fantastic advice, and it is definitely worth getting your lo's tongue checked to rule out a tongue tie.

Also with regards to the zantac, I am sure that this meds dosage goes according to your lo's weight, so your lo may need it adjusting due to having putting on weight.

With regards to teething, yes this could definitely be the reason why your lo is a lot more fussy.  When they teeth, apparently this can cause their reflux to flare up.

Feeding your lo laying flat in the crib, this is not advisable, as it can be a chocking hazard, and can also cause ear infections, as it can cause fluid to be trapped in the ear canal.  I know you say that it is easier to feed your lo when he is sleepy, but perhaps, you could prop him on a cushion to ensure that the is not completely flat.

Please keep us posted on how things are going.  And yes, I have to agree with Emma, your lo is really cute.

[malibustacy]

hello,

i am so glad i stumbled on this topic b/c i had never heard of dysphagia and am wondering if this is what my DD has. Shes 4 MO and at her recent well check had dropped from 25th percentile to the 10th and Dr. suspected silent reflux, so she has been on Prevacid (liquid compound) for a week but we have seen no changes yet.
She has always been a slow snacker of an eater, but in the past month or so is when we have started seeing the problems. Is it possible for Dysphagia to start to show later around this time?
She also has mild laryngomalacia and I wonder if this is tied in with this Dysphagia/reflux problem. Seems like it would be.
She definately eats better when sleepy- like her middle of the night feedings she never fusses, but lately always fusses with daytime feedings. A complication is that she is BF and HATES the bottle that DH has to give her on weekends, and it takes him all day to get a few oz. in her. But the rest of the week I BF so I cant really thicken the milk....so should I switch her to exclusive bottles for 48 hrs. to get her to take them better so I can try thickening? She will def. protest, but is it for her own good?
This is so frustrating....Pedi. didnt even mention Dysphagia as an option. Her symptoms fall more in line with this than reflux. She cries right at the start of a feeding, not afterwards.
I just started giving her a little rice cereal after BF just to try to get a few more calories in her and she really liked it! I was surprised, as I always thought shes just not really a hungry baby. But now it makes sense, as the cereal is thicker than BM so it prob. doesnt aggrivate her airways as much...She weighed 11 lb 7 oz at 4 mo. wellcheck and she was born weighing 7.5 lb so shes way underweight! Please advise on this to let me know what you think...

[* Paula *]

Hi and welcome to the BW website.

It does sound like reflux to me. 

You say that your lo has only been on the meds for 1 week now, it can take longer for the meds to kick in and also for your lo to stop associating feeding with pain.

I think that Prevacid works on your lo's weight, so it could be that your lo is not getting the right doseage for her weight.  Also with reflux meds it is trial and error and what does work for one lo may not work for another lo.

If you want to continue BF, I would do so, it just means that you need to find the right med that works for your lo.  You could wean your lo, and find that the thickners don't make any difference to your lo and she may still end up needing meds.

I definitely suggest popping over to our Colic and Reflux boards, they ladies over there can give you some great advice.

Huge hugs xx

[sleepyhummel]

Hi all --

Between tears and after reading the thread about this, I think this is what my DS has and he is 3 months old already.  It takes us 50 minutes to get 2 oz down sometimes (today being one of them) then he doesn't sleep very well and then takes the whole bottle (4oz) at next feeding because he is asleep for most of it but still will cough and sputter.  He is nasley and wheezy.  He is also been grabbing his right ear lately.  it's been this way from the beginning.  They called it reflux and we are on zantac.  Then it was lactose intolerant and we are on hypoallergenic formula (and I do think this has helped) and he has gas issues so I put him on probiotics.  His biggest feeds are the dream feed, night wakings, and any during the day when he is sleepy. 

I had a question about this disorder.  Do these kids have a lot of gas as well?  I just wonder if he is so gassy from the struggle to eat.

I have a call into the peds office and hopefully we can get a MBS early next week to see if this is what it is.

Thanks for the previous posts -- I really appreciate it and wished that I had seen it sooner.  Deep in my heart I always knew it was something more than reflux as he is happy as a clam after he eats and only really fusses during eating and he eats only what he has to unless he is sleeping.

Thanks in advance for your help

[sleepyhummel]

more questions and comments....

Is simply thick lactose free?

We did a regular barium at 6 weeks (DS is now 12 weeks) and it showed that everything was normal as well.  We told him he is coughing, etc... but no one brought this up.  When the nurse from the peds office called me back today she knew what it was -- so why didn't they mention this?  I think it will be a matter of time before he is just eating enough to sustain himself.  My ped was out this week, so they are going to call me on Monday. My hopes is that we can get a MBS next week and an appt with a therapist to figure this out. 

Thank you, thank you, thank you!  You have given me hope!   

[sleepyhummel]

okay -- I'm a complete space cadet but I have another question. 

 We are currently using Dr. Brown's bottles (after trying 4 other kinds and many $$ down the tubes) with a level 2 nipple.  Will we have to switch to a faster flow once we thicken?

Thanks! 

[Tweakster]

This thread speaks to me.

DS was diagnosed with silent reflux at around 8 weeks.  He had problems latching at the get go and so we had to supplement at the hospital before released.  After no success even with lactation consultation, we then had to move him to Nutramigen rather quickly when it became apparent that every feed was causing him pain.  He was put on Zantac at 5 weeks but after being on the full dosage and that having no real effect, ped moved him to Prevacid (only after taking him in twice and feeding him at the office so they could see he's not just a fussy eater!)

After reading this thread, I am more convinced that reflux is not the only culprit.  He has always fed better at night - not just better but one might say 'normal'.  In fact, in the beginning we had a night nurse (due to sleep deprivation and my PPD) and they never could understand why we had them there because he fed well at night and went back to sleep.  What they didn't know is that ALL DAY LONG it was a battle to get him to eat and nap.  He was always in discomfort.  Therefore, 'sleep when your baby sleeps' did not apply to me.  There was no sleep - there was only lots of AP and tears.

He is 16 weeks now and on Prevacid solutabs 7.5mg x2 per day.   

However, now at almost 4 months, he is becoming even more difficult to feed.  He is grunting, flailing and struggling on the bottle.  Crying and in obvious discomfort...AGAIN.  Every burp is a spit up now. 

I just wonder if I should be pushing for this MBS or not.  When we first fed him at the ped, she sent him for an abdominal ultrasound due to his reaction to feeding - she thought it seemed like pyloric stenosis but it was contraindicated because he was not vomiting.  It came back normal - which I was actually sadly disappointed with at the time because then there was no simple answer or fix for the problem.  All just trial and error.

Also, he had his meconium aspirated when he was born - a big tube shoved down his throat.  Could that cause some kind of swallowing issue??  I have mentioned this before to ped but it seems to be discounted.

[sleepyhummel]

Okay - me again and desperate for help!

Today was a complete nightmare.  The first part of the day was gasping/coughing, etc... and then refusal to eat.  We went to the Craniosacial Therapist who put her finger in his mouth and said he is not sucking right.  Really? - I hadn't thought of that! 

So found simply thick at a pharamacy across town - made DH go get it.  We tried 1 packet of nectar with 4 oz of formula like it says in a Dr. Brown's bottle and shook it like it said.  SO MANY BUBBLES!    DS took a couple of oz and then quit like usual.  He even coughed and gagged on the nectar thickness so I'm assuming we need to go thicker.  I'm scared though so will wait for our MBS which I hope is early next week.

Also, I don't think the Dr Brown's bottles can handle this stuff -- the resivour (sp) seems to get all clunked up.  But they have really helped with the gas so does anyone have any recommendations on a good bottle to use with the simply thick that will not cause gas issues?

Also has anyone heard from Luke-n-me lately? I'd love for her to comment on my issues.

Thanks everyone!