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#121 of 625 Old 09-10-2010, 05:23 PM
 
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another thought is esophogeal spasms...I get them as a side effect of reflux and the pain is horrid. it can also be associated with aspiration. and when I'm totally relaxed/sleeping i don't have it. just a thought.
http://www.nature.com/gimo/contents/...ll/gimo38.html
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#122 of 625 Old 09-10-2010, 11:10 PM - Thread Starter
 
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Katie, can you talk to me a bit more about the aspiration? She does this snorty kind of thing when she eats...and during the spurts of time when she seems to be in the most pain, she always does this gaspy/sucking this when she eats. Suck suck gasp, pull off cry...repeat repeat...which is what made me think reflux way back at the beginning. Today she was reallly upset from about 8am-2pm..cry cry, only eat an oz at a time and did that suck gasp gargle thing..super chest congesty...then from like 2pm-5pm the congestion seemed wayyy less and she was happier, knocked down 4oz at a pop. Then was really upset again tonight and full of congestion, same wonky feeding. She did the same gaspy agitated sucking when she nursed. Sometimes she doesn't do it. Only when upset. Not necessarily when cry..but even calm but in pain. When she is content, never does it. I am not sure which is it cause and which is effect??
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#123 of 625 Old 09-10-2010, 11:45 PM
 
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I don't know much about it, but look up silent aspiration and swallowing dysphagia. Maybe you can video the funny gasping thing for the doctors? I
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#124 of 625 Old 09-10-2010, 11:49 PM
 
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oh, an one article sai that swallowing problems are worse when the child is upset or stressed.
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#125 of 625 Old 09-10-2010, 11:51 PM
 
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Are there signs of breathing difficulties during feeding?

These signs may include rapid respiratory rate, panting (especially in infants while sucking and swallowing via nipple), increased nasal congestion, and gurgly voice quality. Any changes in respiratory effort and/or rate should be investigated. The work of breathing takes precedence over the work of feeding. Signs of possible risks for aspiration with oral feeding must be followed up with appropriate investigations, e.g., videofluoroscopic swallow study (VFSS), flexible endoscopic examination of swallowing (FEES), esophagogastroduodenostomy (EGD), esophageal manometry, and computed tomography (CT) scan of the chest.
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#126 of 625 Old 09-11-2010, 08:24 AM - Thread Starter
 
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Thanks, Katie. I spent some time on that page, and googling. I'm being more mindful of her actual feeding/swallowing now.

We had our first rough night last night. She was just agitated all night. Cried and was all raspy/congested from 5-6am. Now is sleeping upright on my chest, all gurgly.

Today should be a big turnaround, behavior wise, on the Neocate. At noon we're @ 48 hrs.

Something still seems amiss. Not sure what...mama intuition just says we're missing something. I'm going to come out swinging on Monday to get her into GI Dr sooner.

On a positive note, I'm finding pumping 5x a day for 10 min each is pretty functional for my day and I'm getting 18-24oz easily. Baby E is eating about 20-22oz of formula daily. I've always had an easy time increasing supply when needed, so I'm optimistic that if I can keep this up and we do find something out, that she can at least have a full supply to eat, even if it's out of a bottle.
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#127 of 625 Old 09-11-2010, 11:00 AM
 
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I'm coming in really late here - just got caught up. I really hope Neocate works for you guys so that you can have some time of peace to get perspective. Kuddos to you for all you have done for your little babe. Many, many mothers (most really) would not have the determination you have shown. And I mean that in the most positive and complimentary way. I remember when I was in the throws of it when people would say something like that I heard "very few other mother's would pursue this level of insanity" and I thought maybe all those other mothers were actually far more wise than I. But what kept me going, and it sounds like you are in a similar place, is that there was no better alternative. So you do what you have to do. And it sucks. Really. My heart goes out to you.

Re: caloric intake. I found that I needed 2800-3000 calories a day to stop loosing weight. I wasn't that hungry so I had to count calories and force myself to eat that much. If I got lazy and stopped counting I lost weight. I stopped working out because my body didn't have the resources to deal with working out on top of everything else. Not that I'm suggesting you should stop working out, but just that you may need even more than that. For me, protein was the key. My body didn't digest fats very easily so adding more fat didn't seem to help. Luckily I was able to determine at some point that DD was okay with eggs and they became my lifeline. I still eat 3-6 eggs every day 2 yrs later. Any less and I'm hungry and tired. If you can find a protein source that is easy for your body to break down that might help. There is a rice protein powder that can be used for smoothies and is free of milk and soy and gluten but I'm not sure if it is corn free. If you go the route of a TED again it's something to keep in mind, though the flavor is not great and the gritty texture takes some getting used to. But it does the trick as far as protein goes.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#128 of 625 Old 09-11-2010, 02:17 PM
 
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I pray that the Neocate helps out too. Since you were thinking corn was a possible culprit, if you choose to TED again or just take out corn, you need to make sure that you aren't using iodized salt and that your olive oil is truly all olive oil. There are many olive oils that are adulterated with other oils and still sold as pure olive oil. The one you're using could have corn oil in it. There's a thread around here about that somewhere...

<>< Alison
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#129 of 625 Old 09-11-2010, 07:36 PM - Thread Starter
 
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Thank you both for the advice.

48 hr+ into Neocate & I need to think aloud here. Mostly because this is becoming a good time line journal for me in my brain mush days. The intense gut discomfort is much better it seems. Still spurts of painful gas, but she does have content time in between. So now that she is not one huge mess of wrenching, screaming, and puking, I am noticing other things.

She goes through these kind of silent refluxy spurts. But they are from deeeeep down. Nothing comes up. She ate over an hour ago. Cried while I had her in sling and went to sleep. Slept hard on me for an hour or so. Woke up and I stood up to walk her. Now for 25 min she will doze, then from way down in her tummy I feel her lurch. It moves up until she does the classic stiff body head back eye pop wide open verp gag. Then cries for a min and I get her back to sleep. Nothing has actually come out since the Neocate change. But it's like repetative deep abdomen dry heaves, but verpy, if that makes sense. Those have been 90% of her crying in the last 24 hrs. Those are also the times her congestion seems worse. I did review the aspiration info and gut says that is not it, but who knows.
Thoughts welcome as I don't think we've hit this on the head yet.
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#130 of 625 Old 09-11-2010, 09:46 PM - Thread Starter
 
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3-4 hour straight screaming & she's still crying. We're missing it. I have to get her in to the GI before Oct.
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#131 of 625 Old 09-11-2010, 09:49 PM
 
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If she is doing better overall, it could still be residual inflammation and mucous from previous episodes. You could try keeping her in a more upright position, so things work their way down instead of up, which is more comfortable. But it does mean you may have to "butt burp" her.
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#132 of 625 Old 09-11-2010, 10:35 PM - Thread Starter
 
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Headway!! Googling...it seems to be a Very common problem with Neocate...if a baby has some reflux (which she has had), then Neocate CAN cause it to get much worse, because it is soooo thin. I scoured the net and found 100's of posts saying "baby starting on Neocate due to allergies and silent reflux became horrible" then went on to discuss feeding habits, etc, which mimic DD3s as she suddenly only wants an oz or 2 at a time. The last 2 nights have been the only two in her life she's been agitated @ night, but it was refluxy, not gut.

May not be it, but seems to sync.
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#133 of 625 Old 09-11-2010, 10:42 PM
 
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If you use an upright hold vs a sling, does she do better? Keeping them vertical is a really big help on easing reflux.
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#134 of 625 Old 09-11-2010, 11:20 PM - Thread Starter
 
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Quote:
Originally Posted by rhiandmoi View Post
If you use an upright hold vs a sling, does she do better? Keeping them vertical is a really big help on easing reflux.
Ya know...when I had her in the sling I had her snugged in completely upright. She was still miserable. My DD2 had reflux...but she was a spitter. Classic reflux I think. Everything that went down came up, but usually didnt bother her. She slept horribly because it bugged her laying down. We followed all the rules...keeping her elevated post feeds, small and frequent feedings, incline head of bed, etc....she outgrew it at a year.

This LO has had reflux for awhile, which I attributed to a food allergy reaction. When she was nursing or on Alimentum she was very spitty. Now she doesnt spit up at all...but the silent reflux is horrible. I can hear and feel it. I chatted with our Dr tonight. The same time she started the Neocate we moved from Prevacid to Zantac. We are going back to the Prevacid for now and see if that was a factor. I'll jump on my list of reflux helping To Dos in the meantime.

Her gut does seem happier.
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#135 of 625 Old 09-11-2010, 11:49 PM
 
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I'm hoping it's just residual gut-healing stuff, not a long-term issue, and something that evens out over the next few days.

BUT, if it doesn't improve you may want to talk with the Ped GI (or doctor) about thickening feeds - I don't remember the name of it but there's a thickener which does work on breastmilk (it's available at most hospital pharmacies, it's used on patients after strokes etc. to thicken their feeds) -- I suspect that it has corn in it though. It would work on Neocate as well, and would (as long as it's corn-free) also probably be better than trying to 'thicken' feeds with rice.

I really dislike the thickened feed approach. Especially with a breastfed baby, I feel that aspirated breastmilk is preferable to aspirated breastmilk-thickened-with-something. BUT, maybe it's something that would help with the silent reflux?

Dd1 continued to reflux once her allergies were under control; the two were separate issues. Neocate didn't seem to increase her reflux pain/issues, but she was on max dosage of Zantac the whole time -- and, at the time, Reglan was still commonly used and she was on Reglan too. I wouldn't do Reglan again knowing what I do now, but at the time, it did help us. Fortunately we had no adverse side effects, then or now.

Here's really hoping that it rights itself on its own without having to worry about that sort of thing though.

Not all who wander are lost.
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#136 of 625 Old 09-11-2010, 11:59 PM - Thread Starter
 
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Elanorh - boy, it is such a puzzle...the cause and effect.

DD3 has been silent refluxy since before the major allergy stuff took hold. My hope is that the Neocate is just irritating it.

I did read about the thickening stuff. After chatting with Dr tonight, we are going to go back to Prevacid for a few days and see if that helps (only been on Zantac 3 days, max).

She was on Prevacid. But the allergy was such a mess and she was yuking phlem everywhere that we decided to go teh Zantac route when we switched to Neocate. My gut says that the Prevacid WAS working on the silent reflux she had been struggling with from the get go and teh yuking all over was allergy related. Now the spitting is gone, the gut is helped, but the silent reflux is awful.

So hoping the Prevacid helps. Still going to push for GI appt.
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#137 of 625 Old 09-12-2010, 06:26 AM - Thread Starter
 
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Bad bad bad. I was wrong. In the last 6 hrs its like her lungs are full of fluid. Won't eat. Hacking horrible and her chest is full. Gut says ER soon.
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#138 of 625 Old 09-12-2010, 08:26 AM
 
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go!!! low oxygen levels at this age can be very damaging!!! Go to the children's hosputal!!!
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#139 of 625 Old 09-12-2010, 08:48 AM - Thread Starter
 
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Katie- grandparents will be here in a few minutes for other kids & we'll head out. We have a hospital w/in 5 minutes w/ a NICU but no specialize staff for Ped GI, or Children's Hospital an hour away. Which would you go to?? She seems less severe than an hour ago, but still needs to go in.
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#140 of 625 Old 09-12-2010, 08:51 AM
 
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I'd say Children's if she's stable. NICU isn't what you need.

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#141 of 625 Old 09-12-2010, 10:24 AM
 
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Hope she's ok! Keep us posted!

Leigh, mama to Rostislav homeborn Aug 9 2007, and Oksana homeborn Feb 24 2011.
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#142 of 625 Old 09-12-2010, 10:30 AM - Thread Starter
 
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Enroute to children's hospital via Dr's orders here. Will update.
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#143 of 625 Old 09-12-2010, 12:20 PM
 
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Hope you get some help and answers, and really hope that your poor baby feels better quickly! Update when you can.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#144 of 625 Old 09-12-2010, 12:34 PM
 
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hope you get some answers!
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#145 of 625 Old 09-12-2010, 12:52 PM
 
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thinking of you & your baby... hope this ER trip provides some more insight...

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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#146 of 625 Old 09-12-2010, 12:54 PM
 
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You guys are in my thoughts.

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#147 of 625 Old 09-12-2010, 01:05 PM
 
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just read this thread and sending you hugs

jen

jen mommy to dd1 (11y), dd2 (6y) and ds (3y)
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#148 of 625 Old 09-12-2010, 01:08 PM
 
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Hoping everything is OK...

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#149 of 625 Old 09-12-2010, 01:35 PM - Thread Starter
 
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We are here, still waiting in a crowded ER. We shouldn't be too much longer. My friend's 2 week old is here, in critical condition, so it will be nice to check in on them as well.
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#150 of 625 Old 09-12-2010, 01:48 PM
 
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so glad you are there! How is she?
Don't let them brush you off!!
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