Fussy Feeders - Dysphagia - a possibilty other than reflux

[sleepyhummel]

me again -- it's sunday morning and I just got back from the peds office.  They said, "yeah, it shouldn't be that hard." and "he isn't the biggest of babies but he isn't failure to thrive yet."  and "what would you like us to do?"

I wanted to either strangle someone or start to cry.    I don't know how much more I can take.

The only good advice was to take him to a feeding clinic at the children's hospital. I'll call today to see if I can set up an appt for tomorrow.

[JennŠ]

OK, that stuff and Dr Browns probably won't work well.  When we used it, it was with a simple bottle and a fast nipple.  For some reason silicone worked better than latex nipples.  Big hugs!!!!!!

[Erin (redstarfalling)]

I have no helpful advice, but I just had to add some ((hugs)).  I think seeing a specialist would be a great next step.

[Canwi]

Have been sitting on this reply since the day the site crashed.  So here it is - better late than never....
Now I know the title of this thread includes "a possibility other than reflux" but I do want to point out a couple of things related to reflux.
Reflux babies notoriously eat better when they are sleepy.  They don't seem to be as aware of their surroundings and consequently don't make the connection between feeding and pain that they do when they are awake.  Once they are taking more at night than during the day it is termed reverse cycling.  My DS2 took up to  75% of his intake during the night and when he was just awake until I got his reflux under control with medications and then gave him time to unlearn the association.
 
sleepyhummel - Firstly a huge pile of (((Hugs))).  This is a horrible time for you and I wish I could say or do something to make it better.  I do want to give you some suggestions that I hope will help you.

Firstly if your DS is still on Zantac it sounds like he has developed a tolerance to it (very common in LO's) and needs to be on different medication.  There is another group of medications called Proton Pump Inhibitors that work in a different manner than Zantac but the end result is the same.  The common ones that I've seen used in LO's are Omeprazole and Lansoprazole.  The chances of tolerance developing in LOs on a PPI are very small.
He may also benefit from a medication to speed the progress of food through his stomach so it isn't there long enough to come back up.  The 2 most commonly used ones are Domperidone and Metoclopramide.
 
If the LO has latching/sucking issues then please, please, please get them assessed for tongue-tie.  I know it is mentioned earlier in the thread.  I also know that the general thought is that a bottle fed LO shouldn't be affected by a tongue-tie.  This isn't always the case.  And if the tongue-tie is located in such a place that the LO cannot co-ordinate their sucking and swallowing, then it stands to reason that they would choke on their food.  I wonder if this was the original issue for you Wendy, and if it still is.
 
I'm no expert on formulas.  But from the mothers on the Reflux board and from doing some researching on-line about them, this is what I found.  I borrowed this info from this website http://foodallergies.about.com/od/adultfoodallergies/p/hypoallergenic.htm as it is worded very well and seems pretty easy to understand.
Hypoallergenic formulas come in three main varieties: partially hydrolyzed, extensively hydrolyzed, and free amino acid-based. Hydrolyzed formulas have had the larger protein chains broken down into shorter, easy-to-digest proteins, while free amino acid-based formulas do not include protein chains at all but rather contain all the basic amino acids. Partially hydrolyzed formulas differ from extensively hydrolyzed formulas in that their protein chains can be longer. Alimentum, Nutramigen, and Pregestimil are among brands of hydrolyzed formulas, while Neocate, Elecare, and Nutramigen AA are amino acid formulas.
If your LO has a particularly sensitive stomach and intestines then maybe the partially or extensively hydrolyzed formulas are still exposing them to enough cows milk proteins that they are reacting.  I know the amino acid formulas are sometimes only available by prescription and that they are expensive.  But if it's that bad, IMHO cost becomes irrelevant.
 
If your LO has a milk protein intolerance, they may also have a condition known as eosinophilic esophagitis.  This condition is "resistant" to all reflux drugs.  These two pages have information about this condition http://www.allergycapital.com.au/Pages/Eosin_Esophagitis.html
http://www.apfed.org/downloads/EE_Information.pdf
And one of our 'seasoned' reflux mothers has a DS who has eosinophilic colitis.  Her story is on this page http://babywhispererforums.com/index.php?topic=107244.0
 
In terms of the blase attitude and the "he isn't the biggest of babies but he isn't failure to thrive yet" comment, it makes my blood boil.  It is totally unacceptable to wait until a child is in the catagory of failure to start to 'panic'.  Once they reach that stage it is a hard work to get them to eat etc as they have usually developed severe food intolerances/aversions etc.  Keep going back to the doctors.  I would even change doctors if you can and especially if you don't feel that this particular one is listening to your concerns and taking you seriously.
 
Ok.  This was supposed to be a short note and is now an epistle.  Hopefully there is something here that helps someone.

[sleepyhummel]

Hey everyone -  it's been a while since I've been on because of the site being down,etc... here is what happened:

Went to feeding clinic - she said his reflux was not under control and that he was really gassy so we should have the checked out (duh!).  Then she told us to use this super hard nipple because his suck was weak, etc... so I ran out and bought all new nipples, etc... This made my DS STOP EATING completely.  More crying from Mom.

That same weekend, I had a lactation consultant come in.  She put her finger in his mouth and immediately told me that he had a high palate also known as a 'bubble palate'.  She said that these kids can't use regular nipples very well because they can't latch on to it properly.  She had some ideas for kids who were breastfeeders (Aidri bottles) but not for those that had always been on a bottle.  She said to go back to the Dr Brown's feeding system because at least it was getting into him. So back we went.  I wanted to try the Aidri anyways, so I went and bought 2 ($18/piece) and a haberman ($30/piece).  Neither worked.

Then we went to the Dr's office for a weight check and saw our regular pedi and she confirmed the high palate.  She said usually a haberman or a NUK nipple worked for these kids. I told her that we had tried both and the haberman definitely did not work but the NUK sort of did.  Then it dawned on me and I asked, "Latex or Silicone?"  She commented that if his pacifier was latex (which it is) then we should try that since the Silicone did not work.  So off we were again to frantically purchase latex NUK nipples and get them sterilized before the next feeding.

We tried it -- IT WORKED.  We still use some chin support but he does not get the air in that he did before at all and he eats awake just fine now.  I am shocked and disturbed that it took me seeing 6 pediatricians, 1 children's hospital ER doc, a children's hospital feeding specialist, a chiro, a cranosacial therapist, and a lactation consultant before someone even mentioned a high palate to us.  I called our Dr's office almost every day and pretty much went in every week -- NOT ONE Dr checked this until I asked them to.  I am now trying to figure out how to change this so other families and babies do not have to suffer.  Any ideas? I also want to write a post and thumb tack it so others can see it and get help from it.  It is so simple to check for.

BTW: He is milk protein intolerant and we are on hypoallergenic formula.  I also think the Zantac works for him because he sleeps like a champ and our Dr said he wouldn't sleep if it wasn't working.

Thank you thank you thank you for everything!! I have referred many people to this board.  Everyone is so great and very supportive!

[* Paula *]

I am so pleased that you have eventually gotten some answers 

[Mum to Ella Rose]

How great to catch up here and read the positive update!

[Debonair]

Hi there

I just wanted to leave a short note to say I am the lady at the beggining of this post and my ds started school a few weeks ago I remember those early days and for us there is deffinetely light at the end of the tunnel he had a fantastic report from
School doesn't stop eating and is the life and sole wherever he goes he does have asthma and is on strong inhallers but it's managable he rarely drinks milk interestingly any way to. All u mums who are struggling at the moment hugs and keep with your insticts and never give up asking doctors questions :-) x x

[* Paula *]

Thank you so much for posting your positive update.  So pleased that your  DS is doing so well.