Monday, February 13, 2012

She's Growing and Healthy Comment

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chloe'smom

chloe'smom

Sat, October 24, 2009

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I really hate that comment...I've been getting it from baby's pediatrician and her GI specialist.  My 3.5 month daughter was diagnosed with acid reflux when she was 1 month old.  I always knew something was wrong when it came to feeding her.  She would cry - scream actually, arch her back, basically it looked like she was throwing a tantrum at every feeding.  Her vomiting was almost after every feeding and would come through her nose too.  At first I thought it was the bottles and nipples that she did not like...so I bought almost every bottle, nipple out there.  We finally settled on Dr. Browns but switched the nipples to the Mam ones...

 

I finally took her into the pediatrician when she was 1 month old and was put on 7.5 mg of Prevacid and Similac Alimentum.  It seemed to work a little for a few weeks, but she started to squirm again and arch her back.  At her 2 month checkup, her pediatrician increased her Prevacid dosage to 15 mg - 1/2 in the morning and 1/2 in the evening.  We had a swallow study done at 6 weeks, and everything came back normal so her pediatrician informed us to continue on the same regimen since it looked like it was working.  Another reason for the swallow study was that I always felt my daughter had a difficult time sucking - latching onto the nipple.  Feeding took forever and on top of that she kept falling asleep.  But the swallow study showed she was swallowing a good amount - but then she went 7 hours with out eating.  After the 5 minute test, my husband and I tried feeding her and she only ate 1 oz.  Her pedi recommended us to get a faster flow nipple - which we did and it seemed to work for a while.

 

For 3 weeks she ate pretty decent...ate every 3 hours - 7 feedings in a 24 hour period.  She was averaging about 21 oz a day.  But during that time, she'll have these screaming episodes when it came to feeding time.  She would be all smiles before I put her on my lap, but once she is on my lap she would cry.  At first I thought it was because she was hungry...she'll take one nibble and start crying.  She'll try to suck or latch on and then would cry.  We would continue the feed that way for next 3-4 days and then she'll be back to her normal self for the next few days.  My gut always said that maybe she was starting to have food adversion.  At the same time I wasn't sure if her dosage was right (plus I started noticing signs of silent reflux...she would burp and kept swallowing her vomit.  She would do this often) so I called her pedi who wouldn't change it and so she gave us a referral to a GI specialist.

 

We were lucky to get in within a few days.  He listened to us, but he told us to decrease her Prevacid back to 7.5 mg and take her off the Alimentum and put her on regular formula (Good Start).  He said the dosage is too high and that she did not show any signs of being allergic to milk protein.  He mentioned that there could be a paradoxial effect when the dosage is too high.  I asked about her silent reflux and he mentioned that it's acceptable and that she is growing and looks healthy.  I asked about food adversion and he brushed the idea off saying that it normally happens in babies when they start eating solids or have been on NG tubes.  He couldn't explain to me why she would have these crying episodes when it came to feeding time.

10/25/09 12:20pm

Hello Cloe's Mom,

 

I know what you mean-she looks so healthy, how can anything be wrong? She is growing so well. If you just wait until she is hungry, she will eat. Been there, done that. Too bad that doesn't work a bit when you have a baby with reflux. No one understands how hard we have to work to get every bit of nutrition into our babies.

 

I am glad you are working with the doctors on this and taking one step at a time. Even though it is maddening and feels like slow motion when you make a change, wait, make another change and wait.

 

As I was reading, I was thinking that going to a feeding specialist such as a speech language pathologist or occuational therapist would be the next step. You might have a combination of a physical problem (reflux) and a feeding problem (oral motor problem) or reflux and a learned behavior (feeding aversion). It is time to try to sort that out.

 

We know something is wrong since Chloe is communicating as best she can that feeding is not working out for her too well.

 

I hope that you are getting some assistance with the home care. Some parents ask a friend or relative to come for an extended visit until things settle down. It is hard work and more than one mommy can do all alone.

 

Come back if you want to ask questions, vent and give us updates.

Jan Gambino

The Reflux Mom

Anonymous
DESPERATE MOM
12/18/09 3:22am
HI--I HAVE A SIMILAR PROBLEM WITH MY 4MTH OLD--HE HAS REFLUX DISGNOSED AT 3 WEEKS. STARTED ON MOTILIUM (DOMPERIDONE) AND THEN ZANTAC--HE INITIALLY IMPROVED AFTER THE ZANTAC AND THEN HAS SEEMED TO REGRESS OVER THE LAST 2 WEEKS--HE WILL NOW ONLY FEED ID ASLEEP--AND NOT ALL THE TIME--IF HE IS TOO DEEPLY ASLEEP--HE WONT FEED---I AM DESPERATE PLEASE TELL ME YOU FOUND HELP!
12/18/09 5:42am

Hello! I am so sorry your 4 month old is having feeding struggles. Your son is trying to communicate that something is uncomfortable or painful about eating. While it is hard to pinpoint exactly what that is, some of the things you might want to discuss with the doctor include: food allergy or intolerance, Milk Soy Protein Intolerance, sensory or behavioral. A common illness such as an ear infection or throat infection can make feeding painful. Also constipation. I have read a study indicating that some babies with feeding issues with reflux may have a swallowing disorder called dysphagia. So lots of things to check out with the doctor. Your job is to bring in some data-when he eats, how much and his reaction.

Keep in touch and feel free to contact me via this site or privately (click on my name and follow the links to send me a message).

Take care. I will be thinking about you.
Jan

12/18/09 7:23am

Desperate Mom -

 

Have you taken your son to see a GI Specialist?  My daughter's GI increased her dosage of Prevacid and Bethanchol, and it took about 2 weeks for things to get better.  She started eating awake and up to 20 oz a day and gaining weight.  However, now I'm dealing with her throwing up.  She's throwing up more than before...the last time she threw up like this was when she was 2.5 months old.  I'm hoping it's just that she's more mobile now but then she'll throw up during her feeds - she'll gag and throw up.  She still refuses the bottle from time to time so I also think it's now a behavioral thing for her even though she's not in pain. I could never sleep feed her that well like others.

 

It's tough...I know.  I still have moments where I question myself as a mother...as it can be so frustrating and tiring.  My only advice is to see if you can see a GI Specialist.  They may be able to run other tests.  Also, she's now on an amino acid based formula...just to rule out allergies - Nutramigen AA.  I don't even know if that is the problem with her feeding too...

 

If you ever need to talk, e-mail me and I'll give you my number.

12/18/09 3:55pm

Hi --so happy to hear from you--No I have not taken him to see a paeds GI specialist because I live in Trinidad and Tobago ( an island in the west indies) and we dont have any here. I will have to come up to the Us for that--it was suggeasted by my paeds if he doesnt improve soon. I started him on Ogastro (lansoprazole) today--our version of prevacid. I looked up the dose myself online--I am a MD. I have started him on 10 mg three times a day as per doses recommended by marci-kids.com.

 

I really hope that helps because if he has a feeding aversion--I dont know what to do --as we also have no feeding therapist in this God forsaken country. I am keeping my fingers crossed. The Ogastro is very difficult to administer as well because it's in capsule form--so I have to open the capsule and divide these little beads up as a dose--then he is not really taking solids--so to get him to eat it is hard. I have only tried 1 dose so far--so wish me luck. I would love to have your number/ email so that I can contact you for support. Thanks again--desperate