My name is Amy and my son, Jacob, is almost 6 wks old. I think my son may have acid reflux. He got severely choked last Friday. He got up from his nap and I layed him on his play gym mat. He made a strange noise and I realized he couldn't breathe. He hadn't thrown up or anything, but had all of this saliva coming out of his mouth and he was trying to take a breath and couldn't get anything in. He sounded like he had gobs of phlem in his nose and throat. I attempted to use the bulb syringe, but couldn't help him and had to call 911. The operator assisted me with what to do and I cleared his airway before the EMT's arrived. So, we went to the dr and spent the afternoon where he was diagnosed with reflux. Just to preface, Jacob has been on regular milk based formula and spit up on it (not projectile, but just dumped the entire bottle when he would sit up), then he was switched to soy and developed green diarrhea, then was switched to Nutramigen, which seemed to really be working well-each formula he was on for at least a week. Then after a week and a half on the Nutramigen he had the choking episode-I did notice he was becoming progessively worse with the nasal congestion while he was on it. Then we had the choking episode and that led us to the dr. Well, the dr switched his formula once again to Enfamil AR (total nightmare-Jacob can't toloerate it), put him on zantac and regulin, and gave him strict sleeping instructions. So, last weekend we followed this protocol, but it wasn't helping-he had another choking episode on Sunday night. So, we went to the ER on Monday and Jacob had a fever so we spent 48 hours (Monday and Tuesday) in the hospital while they ran tons of tests, which all came up negative. He did have a barium swallow, which was normal (now I understand they aren't 100% accurate). I watched it with the radiologist and Jacob didn't reflux for the 1 1/2 hours of testing. We switched back to Nutramigen and have been adding rice cereal to thicken it up. The dr in the hospital told us to discontinue zanac and regulin, which was fine with us b/c it didn't seem to be helping anyway. He had and still has the terrible congestion. It sounds like he has a terrible respiratory infection. This dr in the hospital also said maybe Jacob has a true allergy to milk and soy or just allergies in general. So, yesterday I took Jacob to an allergist and he believes Jacob does have an allergy to milk and soy. He said all formulas do have some milk or soy component no matter what. Then, we went to another pediatritian who says it does sound like reflux. She put him back on Zantac (1 ml/twice a day) and gave us a special wedge to strap him in to sleep. She also has scheduled a GI probe and seems to think he might have a suck/swallow issue (not doing it properly) so we may have to work with a speech pathologist to correct that. We're just at a loss as to what the problem is-all of these drs keep telling us something different. He's still very congested in his nose. He's not spitting up much-only the occasional spit up when he burps and maybe a little here and there.. He just sounds like he's very sick and now he's having diarrhea. I can just tell he feels terrible b/c he has this pitiful whine/moan and I can't put him down. We're really just at a loss b/c we've gotten so many opinions. Can any of you help us??

Thanks so much
Amy

Hi Amy and welcome! I'm glad you found us and hope we can help some.

The allergist is wrong, not all formulas have a millk and/or soy component. There are formulas that are amino acid based, meaning they are pre-digested, meaning broken down to protein in it's simplest form and 100% hypo-allergenic. Neocate is the one that Shae has been on for a number of years, although it's VERY expensive.

Reflux can make them sound very congested in the chest and nose and little or no spit up doesn't mean it's not reflux, just means it's silent reflux. As well, allergies to milk or soy can make the reflux worse and cause diarrhea and congestion as you described. I suspect it's a combination of allergies and reflux.

Sounds like you are on the right track with the formula switches, I spent the first year of Shae's life switching formulas to find one that didn't make her puke every ten minutes. If you can find a formula that he can tolerate reasonably well you may very possibly see a dramatic decrease in his symptoms.

Keeping him propped up is also extremely important, not just when he's sleeping but as much as possible, especially after every meal for at least a half hour.

Hope that helps. Keep us posted.

Roni,
Thank you very much for the info. Where can I get the Neocate? I haven't noticed it in the grocery store, but then again I haven't been looking. Jacob has had diarrhea for 2 days now and we're doing pedialylte in between feedings. The pediatrician didn't want to switch the formula immediately b/c we keep switching everyday it seems, but if it's not cleared up by the morning I'm supposed to call them back so something can be done. I guess she's thinking he might just have the diarrhea b/c we just switched form the AR, but I know this just isn't right! I've noticed a lot of people talking about the Neocate just in reading the different posts. My husband and I are willing to pay whatever just to get this little guy on the right track. I'm on my way right now to track down this formula! I'm glad I found you guys too. There's no better knowledge than that of parents who have been there!! Thanks again!

Amy

Just a word of warning, the Neocate can give kids diarrhea for the first few days or so while their bodies adjust to it, just b/c it's so broken down and is digested so easily. You should also speak with your doctor about it before trying it...just let him know that you are going to try it. Since it's such a specialty formula, sometimes you need a prescription for it, otherwise you will probably have to order direct from the company (SHS).

Good luck, let us know what happens.

Hi Amy and welcome!

My friend's baby is allergic to both milk and soy as well. She has to drive down to the States to get another kind of formula, as it's not available here in Canada. I believe that she can get it over the counter. I've sent an e-mail to her and will get back to you with the name of it as soon as I hear from her. Good luck!

Thanks Janette. I called the dr this morning and she met me at her office so I could show her a diaper. She thinks it looks like Nutramigen stools, but my husband and I know it's way too runny. She did say that maybe the antibiotics he was on from the hospital may be causing the looser stools-so she must think it's a liitle abnormal. Jacob was on Nutramigen for 2 weeks prior to going in the hospital and his stools were loose, but still had consistency. These don't at all. It's almost like his body all of the sudden just figured out that it didn't like this stuff. So anyway, we switched him to Alimentim. I don't think it will be any different, but we'll try. The dr wants him to stay on this until Thursday and then we'll reevaluate. What symptoms did your friend's child have? I would be interested to know that too. Thanks again.

Amy

Hi Amy, and Welcome!

I don't know if this relates at all or not, but when Trent was about 3 weeks old, he had a rare case of the mumps and was on IV antibiotics in the hospital. He got really bad diarrhea and it continued for 4 weeks after he left the hospital!!! It was very runny, and almost greasy looking. He was going all the time. The doctor told us to feed him 2 baby spoonfuls of yogurt a day. He was only 3 weeks, so it was kind of hard to do, so then he prescribed us Lactinex granules to put in his bottles because he thought he had become "temporarily" lactose intolerant due to the antibiotics. The Lactinex didn't seem to help, but the yogurt did. Neither one stopped it completely. I think it just had to run it's course. After about 4 weeks it cleared up.
Also, Trent was on Nutramigen and Alimentum both for a while. He had green runny stools with both of these formulas and we were told that they were both prone to do that.
Hope you find some answers!

Amy

Hi Amy! I just joined this website and read your message. My son had a similar gagging experience just two days ago. I heard him over the monitor and went to pick him up. I was expecting the same response as always...a little to a moderate amount of spit up. However, when I picked him up, he had formula coming out his nostrils and a long string of mucus coming out his mouth. He was throwing his head back and staightening his legs while he was gasping. I immediately screamed for my husband and pulled the mucus from his mouth in a panic! Fortunately after three to four gasps, he seemd fine. Later that night after a feeding, He "exploded" with vomit everywhere (head to toe). Since this night, I have been having him sleep in his vibrating chair, it seems to help.

Sandy,

Evan went through exactly what your son did on quite a few occasions. I know how scary it is. Fortunately, at age two, he is learning to control the symptoms better by swallowing. Gentle vibrations seemed to help him loosen the phlem some of the time when he was younger. There was also a small hand-held rubber divice that we used when we did chest physio in the morning. Does anyone know what it's called?

Amy,

My friend finally got back to me. (She doesn't get to check her e-mail too often these days.) She said that, as far as she knows, there is no formula that is both milk and soy free, so she has to breast feed and cut out all soy and milk. *Even Neutromigen has soy in it. **The cereal she uses is called BeechNut Rice cereal (only available in the States) and now Healthy Times cereals are in Canada and they have no milk or soy either. *If you need more info., "tell her to call or e-mail me. *I'd love to chat."

Amino acid based formulas have no milk or soy.