Extreme Feeding Difficulties

[kit.-kat]

I hope someone can please please help- someone have some idea of whats wrong with my baby.
This is my 3rd baby- so I know a bit about babies and things that affect them but my newest little one just has me stumped.
He is 15 weeks old. He has been bottlefed since a week old- he couldn't breastfeed cause he wouldn't latch on correctly- after exhausting all attempts of breastfeeding with no success, even with help from nurses etc- we put him on the bottle.

He has been on Karicare Gold for the past 13 weeks, then tried soy for 1 week. 
The only problem is meal times.
Every time he tries to feed- he takes a couple of sucks and then pulls away from the bottle, screams and whines- tries to suck some more, screams and whines etc etc. He is hungry- but it seems to just hurt him to drink- he wants a feed but something is seriously disturbing him from doing so comfortably. Even after going 7-8 hours overnight with no feed- he still does this- so it's not from being not hungry.

I have taken him to a paediatrician- who said it is reflux and milk/soy allergy & put him on a hypoallergenic formula called Elecare- which is basically the same as Neocate.

However- he never really vomits and has only started vomitting since being on the Elecare- my guess because he doesnt like the taste of it. I thought his stomach would have settled and he would be feeding properly now that the possibility of milk allergy has been removed, but unfortunately the new milk has made no difference. He still pulls from the bottle and tries to suck- the suck, pain, cry cycle is still there.

It is so frustrating- feed times are a nightmare- he is hungry but just wont drink- it takes forever to feed him. He is of normal weight because I persist in encouraging him to take as much of his feed as possible.

I mentioned the Dysphagia thing at the top of this forum but the paediatrician just said thats a symptom of reflux- not a condition in itself- so I dont know.
He is an otherwise happy, active bright boy- who just gets upset at feedtime.
Does anyone have any idea of what could be wrong with him because I'm at a loss.

[Mariek]

Hi

Firstly {{{{Huggsss}}}} to you. I'm sorry your little one is having a tough time with his feeds. Its horrible when you feel that you can't do anything for them.

Has your doc recommended any medication for reflux? I haven't had any experience in this personally but if you post on the Colic and Reflux forum I'm sure someone in there will be able to give you advice about the best meds for this.

I know that positioning is important in reflux and that its best to keep them upright as much as possible. There's a wedge mattress that you can get to keep them upright at night and also a bath wedge. Tracy also recommends keeping them upright when changing which you can do by putting a pillow under the top end of their changing mat.

My best suggestion would be to post in the reflux forum and see what advice the ladies there can give you.

Sorry I can't be of more help.

love

[kit.-kat]

thanks for your reply- I'll also post in the other forum.
Yes I know the things to do for reflux- the dr has given him Losec but he cant take it because its in tablet form- I dont know why he prescribed him it :S
I'm not even sure it is reflux because he doesn't really vomit.
Thanks for your reply

[Jane D]

Hi Kit Kat.

Just one other thought if you don't think its reflux - how was his birth?  Did they assist in pulling him out with either forceps or a suction cup?

The reason I ask, is that I had a similar experience with my lo and I tried every teat going and every bottle etc (assuming you have done this also).

Someone suggested I take him to a cranio-sacrial therapist - this worked wonders.  He was delivered with a suction cup assistance and had the cord around his neck.  The therapist only needed two sessions with him.  She found that his palate had been pulled back in delivery and was causing him pain while feeding.

Hope things get better for you soon.

[Deb_in_oz]

i just typed a huge post to  you and had it vanish !!!

i realy feel for you as we are going through this with our 5 month old and have been from the very beginning.

in the hospital i thought she was not latching on correctly and asked for help - the hospital was extremeley busy and i am a second time mom so they kept brushing me off saying she seemed allright.

by 3 months we were fully on bottles after much stress!  but the problems still seemed to go up and down.

we recently were seen by a speech pathologist (SP) and are waiting for details regarding further testing (which can take a while to get into the children's hospital) but in the meantime were advised the following:
 :arrow: use thickened formula for reflux babies - this does seem to have helped a lot
 :arrow: don't engage in a battle for the feeds. we were often practically force feeding her and we started to feel sick about this.  she is a big baby - she gained weight thanks to these efforts but we probably pushed too hard. as soon as he resists, stop pushing it and make it relaxing... try again later and if that fails than don't stress about it.
 :arrow: change the environment/experience and make it as positive as possible.  smile at him, let him play with the bottle/teat, encouragement/praise "good boy", "yummy" "mmmmm", etc
 :arrow: if you are using AVENT bottles try something else.  we happen to use Pigeon brand and it turns out these are the ones she would have recommended (was very surprised we were not using AVENT as too many cases she sees these being used, thingks they are not good...)
 :arrow: dysphagia IS NOT a symptom of reflux.  a key point i took away from the dysphagia thread was about reflux babies being upset AFTER a feed and dysphagia babies upset DURING the feed.  like your DS my daughter is a very happy and contented (albeit spirited) baby EXCEPT for feeding time.

i suggest you find someone who is sympathetic and get access to a SP to at least have him evaluated.  The nurse i discussed it with had nbever heard about healthy babies having dysphagi but she gave me the number of the SP and told me to use thickened formula in the meantime.  The SP was at my door within 3 days!

even if it turns out they don't have a swallowing disorder the SP explained it could still be a behavioral problem / oral aversion, etc and they would still need to change the way feeds are done, learn to relax, etc.  you have nothing to lose if you see a SP and at least you can get it checked.

feel free to PM me anytime if you need someone to talk to about this - i  have cried many MANY times over this.  you don't expect feeding your child to be the biggest challenge you face!!!  :cry:

[ainsma]

I agree with the pp about the dysphagia. My dd is 7 month and we see a speech therapist-actually they have a great web site called Carolina Pedatric Dysphagia that helps explain symptoms.  It also really sounds like silent reflux-my dd has that as well (rarely vomits or spits up).  Her dysphagia has gotten better with thickened formula (we use Enfamil AR liquid) The consistency is already nectur like and it helps with the reflux as well.  But the main difference in her feedings has been with Prevacid.  She would do the same thing your son does-act hungry drink a little and then scream and arch - even after sleeping through the night we thought surely she will eat but no just more of the same-sucking then pulling off-very frustrating!! So I put her on enfamil AR-the doctor upped her dose of prevacid and we started using Dr. Brown's bottles.  She went from drinking 12 ounces to now 24-26.  Big improvement!  She still battles with reflux from time to time but nothing like before-your doctor may not know a whole lot about reflux in babies so I would see if you can talk with a pediatric GI or a speech therapist to do a swallow study.  If you let it continue it could go on to greater feeding aversions.

[NKmommy]

I'm not even sure it is reflux because he doesn't really vomit.

Hi!  Sorry your little one is having a hard time.  It definitely sounds like reflux!  With silent reflux, the acid goes up and down the baby's esophagus without making it out of the mouth, causing the baby extreme pain.  Many babies are prescribed the pill form of Losec.  You have to actually break open the pill and sprinkle the capsules into something, usually applesauce.  But definitely check with your doc or pharmacist.  Can you ask your doc about using Mylanta or Maalox while the Losec is taking effect? 

My son has silent reflux, and only with meds has he finally been able to eat and the damage in his esophagus has been healed.  After you check out the reflux board on this site, check out infantrefluxdisease.com if you get a chance.

[kit.-kat]

thank you all very much for your replies. Sorry that it has taken me so long to reply- been busy trying to sort him out. He seems better now that the hypoallergenic milk has taken time to make effect and hes been on it now for 2 weeks- so all the milk protein is out of his system.
Unfortunately he has had a bad reaction to the Losec- he is allergic to that too- he gets red and flushed and screams after having Losec in his feed- so when I go back to the paed next week- I will ask to change his reflux medication.
Does anyone have any recommedations of what to ask for? Nexium, Zantac or something else? I myself am on Nexium so I know it works wonders for me.
His feedings are going much better with the new milk- the only problem now is to get his reflux meds sorted.
Thanks to everyone who replied.

[NKmommy]

Does anyone have any recommedations of what to ask for? Nexium, Zantac or something else? I myself am on Nexium so I know it works wonders for me.

Sorry he didn't do well with the Losec.   :?   Can you ask the doctor for Prevacid?  He probably wouldn't do well on the Prevacid solutabs since they contain milk, but he may do well on the Prevacid packets.  I hope that it isn't too hard to find something that works for him.  It really is trial and error, isn't it?  hang in there...   

[carole1125]

My son was born with very bad reflux - he left the hospital with a prescription for Zantac.  Then he also started vomitting and his doctor put him on Reglan to control that.  Both medications worked wonders for him.   

Good luck!