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Hello all. I am new here. My dd is in the process of being tested for everything imaginable because we don't know what is wrong with her...or where to start. Here is whats going on with her.<br><br>
She is 5 months old, almost 6 and was born at 35 weeks. She spent the first 4 days in the NICU and then they thought she was well enough to go home. Well things were okay for the first month or so and then my world was turned upside down. She started throwing up. I mean she was EBF at that time and all the sudden, she just started throwing up. So I took her to the doctor and she lost 1 pound in 3 weeks. He was concerned and put her on formula. I was then nursing and giving her formula. She started getting congested and throwing up still so I took her back to the doctor and he changed her formula to Infamil AR and put her on zantac. Well things went down hill from there. She started crying...12 hours a day. You can't put her down in her car seat, bouncer, nothing she will scream bloody murder. She prefers to sit upright so we bough her a jumparoo early so she could almost stand. She barely gets tummy time, but only because she is so uncomfortable during which she screams all the time. ECI just came out and enrolled her in their program. So we don't know what is wrong with her but know that it isn't colic. She is fixing to get an upper GI and a swallow study to test for dysphagia and is waiting for her appointment on 1-31-08 to see pulmologist for an abnormal x-ray she had when we were testing her for RSV, flu and Pneumonia....all of which were negative.<br><br>
DD symptoms are:<br>
~~constant crying...like something is broken<br>
~~reflux<br>
~~constant congestion for 5 months now<br>
~~constant eating...she has 4 ounce bottle every hour<br><br>
If you have any suggestions to what this could please let me know. Thanks
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm sorry. I really am. I identify. My world fell apart like that too. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
Is she sort of floppy muscle tone wise? Is she rolling both directions? Did she get head control on schedule?<br><br>
Is she still spitting/throwing everything up?<br><br>
My initial thoughts. She needs to see a pediatric GI. Fast. When they do the upper GI hopefully they are looking for swallowing issues and also for pyloric stenosis. Given the lung issues they need to make sure she isn't aspirating.<br><br>
Other than the lung issue (and maybe including that actually) everything you mention says severe reflux to me.<br>
So first step (even while you're waiting for testing) is to treat her well for reflux. She's not being treated at all. The rice added doesn't in the research I did generally do much for the actual reflux which is causing her pain. It can keep more from coming out maybe. Big deal. Her problem is pain. And then adding rice adds an allergenic component. Can you make enough milk for her? The best thing at this point would be your breastmilk because it is easier to digest. Otherwise I'd do breastmilk and the easiest to digest formula you can find (maybe a pre-digested one) and when you get a chance to breath again consider digestive enzymes like houston enzymes (You buy those over the internet. The owner/dr. houston will talk with you and answer all your questions for free) or enzymedica Lacto.<br><br>
Immediately as in today she needs medication that can help. The pediatrician can do this or any doctor. Zantac is horrible--really horrible. It doesn't help long or enough if there is a real issue (there is here clearly) and the alcohol and peppermint can actually aggravate reflux. She needs a PPI--I prefer zegerid. Prilosec is ok if you get it re-filled every two weeks. Prevacid is ok but has I think soy derivative in it. She needs it dosed at the max dosages--see this chart. <a href="http://www.marci-kids.com/dosing.html" target="_blank">http://www.marci-kids.com/dosing.html</a> Here is a dosing chart. The Lansoprazole one is for Prevacid, the Omeprazole one is for prilosec and zegerid. This site covers why zantac isn't a good choice for her and also why you need to re-fill prilosec every two weeks and why kids need high doses of PPI's three times a day.<br><br>
If her pain isn't under control after she is on the PPI at an adequate dosage for, say, a month I'd want to look into having a scope for eosinophillic disorders <a href="http://www.apfed.org/" target="_blank">http://www.apfed.org/</a><br>
But at this point she's not getting meds to help her reflux pain. And the crying, frequent eating, congestion, hating tummy time...all of it are reflux signs.<br>
My son benefitted from sleeping with a six inch incline at the head of his bed. We put the top legs of the bed on 6 inch high stools (or nailed together boards). If she's in a crib you can keep her on the incline with a tucker sling. I'm not sure how you would do it with co-sleeping if you're co-sleeping but surely it could be done.<br>
If she's got muscle tone issues or continues with developmental delays let me know and I'll give you some other information. At this point she feels awful so of course she's not doing what a typical child would be doing. I'm sorry. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I'm so sorry that you are having such a rough start with your DD. this group of mamas will probably help you though. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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I think Rachelle's advice is really good.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I hope you get some answers soon.
 

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For a really simple place to start, have you tried an elimination diet for you and a hypoallergenic formula for when you have to supplement? Severe allergies could cause the symptoms you describe. Often, allergies go hand in hand with other issues, like reflux. Dairy & soy are the most common allergens in infants, which would coorelate with the increase in severity when formula was started.
 

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sbgrace, I wish I was as informed as you when my son was young - I blindly listened to the doctors.<br><br>
chloesmama_2007,<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Your daughter sounds like my son – except his issues started immediately whereas your daughter’s started at a month old. (Could this delay be a sign of allergies?) My son was born at 4lb 7oz and dropped to 3lb 6oz quickly. (Partly because they wouldn't allow him to be fed until his upper GI was done - at one week old!) He had a slow digestive system and reflux. He was on Zantac - which I've since regretted after reading more about the drug. He was also on Reglan. He cried - all of the time. He was on a high calorie formula and gained weight quickly - too quickly according to the pediatrician. (Plus he was really tight, high tone and had difficultly moving. eg. couldn’t roll over both ways at 11 months.) In the NICU, for the first 6.5 weeks, he was kept on his side and fed via tube. This may not be a popular statement, but once home I found he slept best in a swing next to my bed – until six months old. He was much more comfortable when upright. His breathing sounded asthmatic. Since my husband has asthma I had him tested but they said there was no issue with his breathing. But at night, especially once he was lying flat he sounded awful. I used to sleep on the floor in between their cribs because I was afraid he would stop breathing. In time I slowly took him off the medications because I felt they were not helping. Eventually the strange breathing, reflux, and crying all stopped. I think he just outgrew everything.
 

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No advice, I'm just so sorry you and your baby girl are going through this. I hope you get help soon. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Hey hun. I hope the swallow study goes well. I have another friend that is going through something very similar. She has a 10 month old son who also cries all the time and does not gain weight, and all his tests have come back normal so far.<br><br>
I know you mentioned to me, about her being on reglan, that is a pretty strong medication. Have you tried other alternatives to it?<br><br>
Also, maybe she is allergic to the type of formula?<br><br>
Another question, how are her poops and pees? She she poop regularly? Could she have a volvulus? I am just trying to throw some ideas out there.
 

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Well, sbgrace gave you a good jumping point.<br><br>
Both my sons had reflux, my first it wasn't a problem at all, he grew just fine, never cried. We ignored it.<br><br>
My second, it has been the devil. Failure to thrive, aspirating, pneumonia, crying, not sleeping, you name it. I don't have much time to write right now, but here's what helped us:<br><br>
Never EVER lay her flat on her back. Not even for a diaper change. Elevate everything. My son slept on his tummy on an incline to help avoid the aspiration when he refluxed.<br><br>
Do your best to up your milk supply and get her off of all supplements. Breastmilk will be the easiest to digest for her. This was really difficult for us, the drs were all over me to supplement or at least "fortify" but I refused, and I'm glad I did...see next...<br><br>
Go on an elimination diet. You can read up about it on lots of webpages. It's up to you if you want to eliminate ALL allergens then add them back in one at a time (i.e. total elimination diet) or just pick the most common. For my son it turned out to be dairy AND soy. And let me tell you, it stinks!! But it's worth it. Every fortifier is made from either a dairy or a soy derivative, so if we had fortified, we likely would have had many more problems on our hands.<br><br>
Push for some meds. Zantac is no good. We tried several different meds, including Protonix and Prevacid. BUT--check the ingredients in the product insert CAREFULLY, many meds have casein in them or a form of lactose, both are dairy and can cause more reflux (this happened when we tried the Prevacid Solutab...he started vomiting violently)<br><br>
Push for quicker appointments. Call and get on a cancellation list. Call and cry over the phone. If you have good insurance, take her to the ER (it's amazing how quickly appointments become available when you were previously told there were none) I did this and got his swallow study moved up three weeks, and it was a good thing because it showed that he was indeed aspirating and needed immediate treatment.<br><br>
Look for a dairy-free acidophilus (hard to find, and read the label carefully to make sure it truly is dairy free...go to kellymom.com for a list of hidden dairies) That will help her digest what milk she does manage to keep down.<br><br>
Hugs mama!! We've been there, we're still there a little bit (he's not medicated anymore, but I'm still on a restricted diet and we're still on guard all the time) You're doing great! Keep asking questions here...we'll do our best to pass on our experiences!
 

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Discussion Starter · #10 ·
Well I am not nursing her anymore<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I was sooo sad and I felt like I was a failure. My milk dried up soon after we starting giving her formula. She is on Infamil AR now.
 

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You are not a failure. You just got bad advice in a very, very stressful situation. So you go from here.<br>
You need a good medication. If that doesn't help you need to look at allergens. It isn't always allergens though; it wasn't in my son. I personally wouldn't want to jump to the hypoallergenic formulas unless I needed to. They have more free glutamate which isn't good for anyone's brain. But if indeed it is allergies you'll need to. The EOS link is a allergen related reflux issue. If it is that it won't respond to the meds. I too would recommend a probiotic and checking into digestive enzymes as I mentioned, especially given the formula issue I'd do enzymes.<br><a href="http://www.childrensprobiotics.com/" target="_blank">http://www.childrensprobiotics.com/</a> This might be a good probiotic; it is in drops and has a lot of good research in young infants.<br>
But before you overwhelm yourself with all that get her on a good dose of PPI. Try to get her pain under control and then go from there. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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You are NOT a failure!!!!! That dr should never have told you to supplement without first trying to fix the breastfeeding problem unless she was acutely ill (i.e. dehydrated, malnourished, etc) This is NOT your fault.<br><br>
That being said...you can try to relactate. Do you have a pump? I'd start pumping now, several times a day. Put your baby to breast even if nothing is coming out. Wear her in a sling both you you naked (topless), take baths together, start drinking mother's milk tea (make sure no dairy or soy of course!) THere are things you can do to relactate. It hasn't been too long!<br><br>
If you don't want to try (and you'll get no judgement here, only support!) then talk to the dr about a prescription formula. I don't know much about it since I was refusing it (I have a great supply, easily donate lots of extra milk) but the dr mentioned Neocate and Alumentum (sp?)
 

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Please don't beat yourself up about the nursing. I also was given bad advice and as a result gave up on breastfeeding much too soon - a much shorter time than yours. I regret my decision and sometimes still beat myself up about it. But there are so many other factors that make a good mother. Please concentrate on what you can and are doing now.
 
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