Fussy Feeders - Dysphagia - a possibilty other than reflux

[Luke-n-Me]

Hope your visit to the pediatrician went well!

[sfamily]

We met our Pediatrician on Friday and she reviewed our LO feeding and sleeping charts and listened to our explanation of being a fussy eater during the day.  The pediatrician doesn't believe that our LO has any of the issues we discussed; Acid reflux or Dysphagia and told us we can discontinue using Axid and that his growth rates and eating levels are normal for his age.  She things his day night schedule is off and that is why he is mainly eating at night and not during the day.  She suggested feeding him in a calm environment without much stimulation.  He is eating about 25 to 30 oz per 24 period and his weight and growth was around the 40 percentile.  The questions that she asked us were around his fussiness and unwilling to eat.  He does get fuss on the bottle after 1-2 oz and sometimes will finish a 4 oz  bottle if given in 2,3 feeding over a 1 hour period.  he gets fussy laying down while eating and is much happier when put in an upright position.  Unfortunately feeding him while he is standing is problematic and difficult.  Also the Pediatrician wanted us to stop any rice cereal addition for another 1 month and start again at 5.5 months.  We didn’t totally agree with the Pedestrian and have continued using the Axid and we are considering trying to add some thickener to his bottles to see if that helps.  Any suggestions or other observations?

[Luke-n-Me]

I'm sorry about your appt, this is when I get frustrated though.     Your lo is truly showing signs of dysphagia in my book.  His eating patterns are off and he eats throughout the night because he's learned that it feels better at those times.  Without a doubt, his height/weight looks great, I couldn't agree more.  However, he is really showing classic signs of dysphagia/reflux.  Eating better at night, fussing after 1-2 oz. and taking an hour to eat up to 4 oz., wanting to be upright for feeds-these are all signs.  Plus, his age is another factor, generally at the 3/4 month mark, the signs become more evident.  I also would continue the meds, IF you think they are helping and you can try a couple of things for feeding.  One, you can try to change his position-he's older now and certainly may fight you on this, but you can try.........lying him on his side with his feet toward your stomach and his head at your knees, support his neck and hold the bottle like a dart and see if this helps.  The reason this may help, is that when liquid starts to get difficult to manage, rather than gravity continuing to force it back, he's on his side so it will either pocket in his cheek if he can't handle it, or roll out the side of his mouth (so, maybe lie a burp cloth under his head); if he's unwilling to do this (and you can't see a therapist) I would go ahead and try to thicken.  I certainly can't promise you anything, but it's worth a shot.  I always recommend the Simply Thick, it's expensive, but so great (you've probably already "heard" me talk about it) or try Thick-It or one of the powdered thickeners.  Start with nectar, see how that works and then maybe bump to honey.  If you still don't see results, you really need to insist on a swallow study.  Just a word of warning, the thickeners can cause probs. with bowel movements, sometimes diahrrea, sometimes constipation, and no matter what it will change the consistency of his BM's.  The powdered thickeners tend to be worse than the Simply Thick, but the benefits outweigh the risks here.  Let me know if I can be of more help, I'm always available for questions!  Oh, when you start solids, if you have trouble, please let me know that too!

[Sugarmama]

Thank you so much, Luke-n-me, for this. This is my baby!, minus the congestion, too. I still wonder if I fought too hard starting at six weeks--when I switched exclusively to bottles--to get her to drink more and more, and I possibly did do this. So perhaps part of my problem is bottle aversion due to that, but but but, I am taking this stuff to my Dr. and asking for the modified barium test.

[Luke-n-Me]

I'm glad that you found this info and I hope you get some help.  I really don't think you could have "done" this to your lo.  Humans/babies want to eat by nature and for survival, they aren't going to refuse unless there safety is being compromised.  Switching from breast to bottle could always create nipple confusion for some too, but this is definitely worth looking into if the symptoms sound familiar!  Good luck!

[Sugarmama]

Good point. I actually made a Dr. appt. for today, then canceled this a.m. because my LO ate more yesterday than in a long time.

(And I figured that I had better be able to say that she only ate a few oz. at each feed for the Dr. to take me seriously. However, he still won't take me seriously because since 8 wks. [when Dr. told me she was fine--only make her eat what she wants to, so I figured, this is my problem], I have tricked her into eating by placing her beneath her activity center, letting her bat at the toys, and then feeding her. It was weird--as though she didn't even really know she was eating, but once she did, she screamed until the bottle was out! Also, I tricked her, too, by feeding her when she was sleeping--big symptom.)

After reading your post, I made these changes yesterday: held her nearly upright for the feed (rather than tilting her back in cradle position) and used a smaller nipple. Still, she's 18 lbs., and only ate 25 oz.--10 of which were in the p.m. after I had rocked her to a near-sleeping state, so my problem isn't solved, is it? Do you think I had better reschedule that appt?

[Luke-n-Me]

How old is your lo?  I would go ahead and try to reschedule the appt.  There is no point in continuing to let this go on.  Hopefully your dr. will be open to checking this out.  Is your lo on solids yet?  If so, how is that going?

[sfamily]

well just an update on our little man.  We talked to our Pediatrician last month at our 4 month appointment and she didn’t seem very informed about Dysphagia in infants and checked his weight and talked to us about his eating and sleeping schedule.  After all that she informed us that everything seemed just fine and we were not to be worried about our LO.  I had already ordered some simplythick samples at this time but we decided that our lO was ok and have just continued feeding him normally.  This last week at 5.5 months old he really started to get fussy while eating during the day and pulled away and even cried when he started to feed.  As soon as you take the bottle away from him he becomes happy and smile again.  We also started feeding him rice cereal this week and he loves the food and eats 2 tsp at night and loves it, but still shy's away from the bottle.  We finally decided to try the simply thick today and added one packet this morning to a 6 oz bottle and the little guy finished the entire bottle with very little fussiness.  We had to cut the tip of the nipple a bit to get any flow out of it but it certainly appears that it might have helped him.  We are going to try the rest of the thickener this weekend and see how he does eating it.  Also I have started to call pediatricians in the area to find any that have treated or tested for dysphagia.  We don't want to self diagnose our LO but he seems to have a lot of the symptoms previously mentioned and we would love for him to be happier about eating from the bottle.

[Sugarmama]

Sugarmama here again. My LO is 21 wks old. Plus, I bought a scale today to get a more current weight on her. She is actually over 19 lbs.! Yesterday, she ate only 23 oz., and I don't think this is really filling her, as she woke at 4 am. She won't eat when she wakes, persay, perhaps a few oz., so my DH and I started giving her the paci, oh, when she was 3 mo. for the NW's.

You're right-I will reschedule the appt. Monday.

I had a few more ?s for you: Are hiccups, frequent sneezing, periodic hack-like coughs or periodic quick, choke-like coughs related at all to this problem?

Thank you.

[Sugarmama]

Well, had Dr. appt. today. He was VERY reluctant, due to her healthy weight, to do anything. I tried to tell him: we feed her when she's basically sleeping and we almost force her to eat we insist so much that she take a little more and a little more. We do this 1) because we have been trying to keep her weight up and 2) because she really seems to sleep better if she's eaten better during the day.

He would not give me an order for an MBSS. Finally, though. he gave me a referral to see a ped. gastroenterologist and said I'd have to start there. So, we'll see.

I really do hope it's nothing. I have to say, though, I'm worn out with the constant offering of food for an hour and a half before each sleep period, you know?

[Sugarmama]

I forgot my questions!

Luke-n-me, I am wondering, when did you LO's night sleeping seem to be affected by his lack of eating? Strangely enough, Josie sleeps pretty darn well at night--if we do a DF (granted, she'll only drink between 0-4 oz., usually 2), she'll sleep until 4-6 a.m.

Also, how many oz. did your baby drink once he accepted the thickened bottles in a week's time?

My Dr. kept trying to say, yours is a healthy baby--a healthy weight; therefore, we have no problem. However, I couldn't attribute her weight to her chosen oz. intake. This is because my DH and I were--up until last week--feeding her beneath a toy bar to draw her attention away from the bottle--which seriously upped her intake; and we were feeding her the last p.m. bottle after I had practically rocked her to sleep; and, of course, the DF. We continue to do the last two to ensure a good night's sleep. So who know what her weight would be if we let her eat--awake--only what she wants?

[sfamily]

We decided on Friday to consult with another pediatrician who seems to have some experience treating dysphagia our current Pediatrician barely could spell it...(well actually I can't either...but)

We have an appointment tomorrow with the alternative Pediatrician where we hope to get a referral to get a barium swallow test done. 

5 months and 3 weeks old.

On Friday 5/4 we started adding Simply thick to his day time bottles only..since we only had a trial kit and a few samples.  His normal daytime bottle would be anywhere from 2 - 4 oz usually forced on him over 1 hour to 1 hour and 1/2.  Since we have given him the simply thick bottle during the day he is consistently eating 6 oz @ 8 AM, Noon, and 4 PM.  He is taking the bottle normally 3-4 oz and then the other 2 oz in about 20 mins after a burp or two and some time off the bottle. 

At night we are giving him un-thickened bottles (only because we do not have enough thickener) and he is taking 4-6 oz @ 7:30 PM, 11 PM and 3 AM.

Before using the thickener he was eating about 18 - 20 oz while sleeping and 6-7 oz during the day.  Now he seems to be about 18 oz thickened during the day and 15 - 18 @ night unthickened.

[Luke-n-Me]

Wow!  Sorry ladies, I didn't get notification of  your messages from May 4th at all and just got your messages today.  Hopefully, I'll cover all of your questions, if not post it again............

Sfamily, I'm glad that you did some homework to find a physician who may help you.  I totally understand that you don't want to self diagnose, and I don't necessarily recommend it, however, if you aren't getting any help from the dr.'s it doesn't hurt to try and it sounds like you're having success!  When you are able also thicken at night.  Although your lo takes the feed okay, it's still compromising the airway.  Also, please don't cut all of your nipples, your lo really should be able to get the liquid through a regular nipple even if he plays with it a little at first.  Either way, I'm glad it's going well. 

Sugarmama,  the hiccups/sneezing, hacking coughing, choking coughing are all classic signs of dysphagia.  I'm glad you got your referral for the pediatric GI, he/she should be willing to refer you for the MBSS, that's where I finally got some help.  As far as Luke's night sleeping, I don't honestly think it was majorly affected by any of this, however, he was only 4 weeks when the whole feeding nightmare began and 13/14 weeks when we started to thicken, so he was pretty young.  However, he also tanked up at that last feed in the evening and I think that is helpful.

Sounds like things are headed in the right direction for you both.  Keep me updated and let me know if I can be of more help!

[mella]

does anyone in know if these thickening powders / gels are available in uk? I'm willing to try anything to get my boy to take milk.

Mel

[sfamily]

Good news... We have gotten our new pediatrician to refer us to a radiology lab to perform a Upper GI and fluoroscopy Barium test.  Hopefully this will finally determine if our LO has been suffering from Dysphagia or reflux or something else.  This Pediatrician also doesn't think our LO has dysphagia from his eating patterns but again until you see the little guy get so frustrated over eating a unthickened bottle during the daytime I think its had to gain the right perspective.  She suggested using rice cereal in his bottles to thicken it but for now we are going to continue with simplythick.

Interesting enough we stopped giving him Axid last Friday at the same time we started giving him the trial dose of SimplyThick.  He has barely spit up more then 1/4 cup since Friday which is a remarkable difference compared to earlier.  We have also increased his rice cereal intake to 4 tsp per day.  Not sure if any of this is helping or all is helping at the same time but he really seems to be so much happier and eating heavy during the day.  Yesterday he had about 36 oz of formula in a 24 hour period and today i made 40oz with my recently received simplythick.  Today will be his first 24 hour period eating thickened formula and I will let you know how things go.

On another note we are a little worried that the simplythick has not been tested with infants and could inhibit some of his nutrient uptake from the formula? any idea?  I am going to send an email to simplythick today also and will post their response if they do respond.