Posted By Posting
Oct 12, 2010
dcd
Lost...Ear Infection Stuff or Go Ahead with Testing?
Kylie has been doing very well on the Neocate over the several weeks since they diagnosed her allergies. She was drinking her bottles without pain and sleeping through the night without waking.

Then she got an ear infection which didn't clear up on Amoxicillan so they put her on Augmentin. While she was on the Augmentin her formula intake steadily decreased until she was only taking 2-3 oz at a feeding. Last Thurs/Fri she gagged when we gave her the Augmentin and later threw up, and she had diarrhea. The pedi checked her ear and said the infection was cleared up so it was ok to take her off the Augmentin a couple days early since it was obviously tearing up her stomach.

Her last dose was Friday night but this weekend has been terrible with the feedings. I feel like the Augmentin really screwed everything up again. She will only drink like an ounce and a half at a daytime feeding...I have to chase her around and repeatedly offer the bottle as she plays to get her to drink even just one more ounce and a half. She's only getting like 2-3 oz at a feeding still. She will drink more at night, but still way less than usual - maybe 4 or 5 oz at her two nighttime feedings.

She is also doing a lot of crying and screaming when I try to get her to take more or offer her the bottle over and over. And she will sometimes cry like she's having pain when she eats. She will purse her lips and blow raspberries and start crying when I try to get her to take the bottle.

She is still having an acceptable number of wet diapers though definitely fewer than normal, but the doctor said she's not dehydrated. He said her stomach still could be a little upset from the Augmentin and to give it a week and see if she's back to normal.

I'm a wreck because she's showing signs of having pain with eating again, and it's like she's started developing really negative feelings/associations about eating in general. She would be happy to play all day without stopping for a bottle if we let her.

She clearly needs the Neocate as she's completely stopped vomiting since we put her on it. She doesn't even need to wear a bib anymore, and for a kid that used to go through 3 or 4 a day along with 2 or 3 complete outfit changes, that's amazing. So I know the Neocate is agreeing with her, I'm just not sure what else is going on now.

I guess her stomach could still be upset from the Augmentin but she hasn't had it since Friday so that seems unlikely to me. Plus these old familiar feeding behaviors have come back. I think maybe she's become averse to taking anything orally since we've had to give her so many medicines in the last few weeks - Prevacid, Zantac, Amoxicillan, Augmentin, Tylenol and Motrin when she was having pain from the ear, and now a low-dose med for 3 days to dry up the fluid that remains in her ear. (It's not infected anymore but there's still fluid.)

We never went through with the GI testing and now I feel like we should just get it done to figure out if there are any factors in addition to food allergies, once and for all. But my husband and the pedi think that's rash and that things just got out of whack with the ear infection. I feel like I'm going crazy because we were doing so well after discovering the allergies and now we're back to trying to force her to eat and I worry about pain she could be having and whether she is developing a fear or anxiety about eating.

What do y'all think? Should I try and relax and just give her a week or so to get back on track after the ear infection? Do you really think this current eating stuff (refusing to eat more than a little at a time and crying with feedings) could be related to the antibiotic from last week? Or do you think my instincts could be right and we still haven't figured out all the pieces to the puzzle that is her condition? At this point I'm so confused. It's hard to get out of my own perspective and look at this objectively. I feel such stress when she won't eat. And I really thought we had this figured out with the Neocate because I sensed she was feeling sooo much better. I hate the "wait and see" approach because I can't stand for her to be in pain - if in fact she is.

I feel lost right now and need some feedback please!

Oct 12, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Augementum is brutal on their stomaches. Especially for someone that already has past feeding issues. They do remember and will slip back into poor feeding habits real quick when they dont feel well. Augmentum can mess up her stomache for 10 days after the completion. It is critical that you give probiotics when you give antibiotics. I recommend BioGia brand. It will help immensely.

Stay on top of the ear infections. If she gets more than 3 this season, insist on tubes. Period. Do what you can to keep antibiotics out of her system.

Careful with Motrin. It raises the acid level in their stomaches and is hard on on them. Tylenol does not.

Remember that you are running a marathon not a sprint. Your doing to have good days, and bad days... even when you "have it figured out" Regular non reflux kids have bad weeks too. Buckle up and go with the ride.

Oct 12, 2010
dcd
Yes I know, that's why I'm so confused and keep going back and forth. I know regular kids have bad weeks too, but since she's my first baby and we've been through all this with the reflux and the allergies, I often feel unsure about what is normal baby stuff and what might be related to her existing health issues. I always want to be on top of the allergies/reflux so that she doesn't suffer more than she already has.

I did not know that Augmentin could cause stomach problems up to 10 days following the last dose, so maybe that's what is going on. The pedi said that if the fluid in her ear doesn't clear up we can talk about tubes to prevent future infections. I asked what the risk of tubes is and he said there really isn't any, so to me it seems like...why wouldn't you get them? She's already taking Prevacid, Zyrtec, and nasal sprays every day so I would really like to avoid recurrent ear infections and repeated courses of antibiotics, especially since she's in daycare.

I've heard great things about the BioGia drops but also read that they can contain trace amounts of milk so we can't use those because of her allergy. I've had her on the Culturelle probiotic which is a powder. I know the liquids are better but I've had a hard time finding the ingredients for the ones I've been recommended. The pedi is having her take the Rezyst probiotic for the next 6 days and said it's fine to go back to the Culturelle after...

Oct 12, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I wouldnt put her through any tests right now. Give her a week to work through the antibiotics.... but that is just my opinion. You have to do what your gutt says.

As far as the tubes go... Best thing I did for my son... aside from Caracream. Most insurance companies require documented repeat ear infections before they will pay for tubes... which is likely why your doc is waiting.

Oct 15, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Oh boy, do I remember that feeling of confusion about what is normal developmental stuff, what is related to some passing health issue and what is reflux... It is SO HARD to know, and there were many times when I felt crazy and desperate and so frustrated that no one else seemed to have any ideas...

This may not be at play, or ever come into play for you, but since it was a mystery in our lives for so incredibly long, and no one ever mentioned it to me as a possibility, I just want to put out there that sensory processing issues can sometimes be the elephant standing in the room waiting to be noticed. When babies are born early, or when they experience a lot of physical pain or trauma in their early lives, it is not uncommon for them to develop a hyper sensitivity to stimulation of various kinds -- especially it seems tactile stimulation. Basically some forms of touch, whether from other people, or from food in their mouths/throats, just overwhelms them and they go into a fight/flight response. In the case of oral tactile sensitivity, that can present itself as gagging on feeds and/or refusal to feed.

Like I said, this may not apply to your situation at all, but I am increasingly convinced that even the normal sensory challenges that everyone experiences can be so exacerbated by the pain and discomfort of reflux (and allergies) that it can be become a real problem -- and it is, unfortunately, one that is not well understood by the average physician. If you want more information, let me know, and if you feel like her feeding issues are getting worse, you might want to consider asking for a referral to an Occupational Therapist, and then try to find one who has some background in Sensory Processing Disorder so that s/he can help identify if that is at play in the feeding issues.

((HUGS)) Hang in there...

Oct 18, 2010
dcd
Thanks for talking me down from the cliff ladies. Kylie is doing much better. This was her first ear infection and first time on antibiotics and I have learned a few things. Karen you're right, when their stomachs get upset from something else, they do remember the pain from past, uncontrolled reflux/allergies and they do revert back to past behaviors.

We mostly seem to be back on track now, though she has a tooth coming in and that's messing with her sleep again. We joke, though it's actually feels like the truth, that she and we are literally never going to sleep, ever. Also the fluid in her ear still hasn't cleared up, so I'm living in worry that it will get infected again any day now.

Lorenzomama, I the sensory processing thing is really interesting. I did read up on it when you sent me some resources a couple months ago. I don't think it's a major factor for Kylie, but I do think it's possible it could play a minor role for her along with her other issues. How did you discover this was such a problem for Lorenzo, and how are your doctors "treating" this in him?

Oct 18, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Glad to hear things are mostly on track again. Just to forwarn you... Teething is the pits for our little refluxers. All the extra saliva in their guts will make them reflux even more and they associate they pain in the mouth to food and dont want to eat and if they are prone to ear infections, that will flare too. Boo.. I know. : ( Just wanted to give you the heads up. We would end up in the ER for fluids with every tooth... till we got on Caracream. That was the only thing that could keep up with the reflux during the bad times.
Check with your
doctor first!