Prevacid/ Neocate Questions (sorry, long)

[Anonymous]

My daughter has been on Neocate and 15 mg. Prevacid Solutabs since the beginning of November. She has gone through so much in the last 3 months that I no longer know what the heck is going on with her.

I thought her new meds/ formula were working, but I don’t really know.

Please help with suggestions if you have any. I am desperate.

Krista (6 1/2 months) has always been a very, very, very fussy/ high needs baby(probably because of the reflux and milk allergy). But I thought that once we got the meds, formula, and nap/ sleep routine established that she would become much better. Although there is some improvements (i.e. I don’t need to sleep with her on me and she doesn’t need to be held all day long). We have really worked on the sleep and with much effort, she is getting about 10 or 11 hours of sleep at night (with a couple of wakings- nothing like before), and 3 naps totalling about 2-3 hours of cumulative sleep. I think this is adequate, but I am not sure.

Despite this amount of sleep, all day long, Krista seems to be making this whining/ moaning/ groaning sound constantly. I would say that I hear her doing it about 50 % of the day.

This is her daily pattern: She wakes up from sleep/ nap and of course she has an empty stomach. She plays for 30-45 minutes very happily. Around this time I feed her formula. Rarely anymore does she ask for a bottle. For example, her last bottle was at 11:00pm at night. She woke up at 6AM, seemingly not hungry. Finally, by 7:15Am, I decided to feed her even though she wasn’t requesting a bottle, thinking that after 81/2 hours she SHOULD be hungry. She sucks on the bottle for about 1 minute, then spits is out and turns her head. This pattern continues for about 5 minutes and she consume a total of about 2 to 3 ounces. Every bottle during the day is a BATTLE! However, amazingly enough, during the night (11Pm and sometimes 3AM), she sucks down 5 or 6 ounces with no problem.

After she eats her 2-3 ounces, she becomes horribly cranky/ fussy about 20- 30 minutes after. The whining/ moaning/ groaning sound begins.

I have two main concerns, the lack of eating, and this moaning/ whining sound that is driving me nuts!!!!

1. When Krista was 2 1/2 to 4 months old she was consistently eating 24 ounces of formula without any problems (when her zantac was working– at the time she was eating nutramigen). Also, before the zantac stopped working she had even begun increasing her feeds to about 26 ounces a day. There has been a couple times since we switched formula/ meds that she has eaten 31 ounces- so I know she is capable. But lately, I’m lucky if I get 24 ounces into her. It is a constant fight during the daytime bottles. The pamphet the pediatrician gave me at her 6 month appointment said she should be eating 32-36 ounces plus some solids.

2. What is this whining/ groaning/ moaning sound that she constantly makes? Is it because she isn’t eating enough and is hungry, but really doesn’t feel well enought to eat? Could it just be her signal that she is overextended and tired ( I try to get her down for her 2 morning naps after about 2 hours of awake time. Her bedtime is between 6 and 7:30). Could it be teething? She just cut her first tooth and it was a horrible week. Maybe took number two is on its way? Or is it the meds. Could it be the dose is too low, or maybe she is intollerant to the lactose in the solutabs. Also, she always moaned a little before when on zantac/ nutramigen, but not nearly like this. When her Zantac stopped working, she pretty much cried all day and wanted to constantly be held. That is not the case now.

Please help. I don’t know what to do, or who to call (pedi or her gi specialist). I know her gi is not willing to raise her dosage, as we talked about this 2 months ago.

So my question is, do you think the prevacid is not working? Does she need a higher dose? Do you think this is formula related? Sleep related? Teething issues? Lactose in the solutabs?

Jennifer

[Anonymous]

I just wanted to add that since on Neocate her spitting up has almost entirely stopped. We used to go through 3 outfits, and countless burp rags/ bibs a day. The screaming has stopped. The sleep has gotten better. Now we just have this moaning, and these airy, gassy burps all day long. She just blows air- sometimes her pacifier flies out across the room. It is very weird. My mom saw it for the first time yesterday and she thought is was crazy.

Thanks again for your help.

Jennifer

[Anonymous]

Just a few questions to start: How and when does she take the Prevacid? Just one dose of 15 mg, or split up into 2 doses of 7.5 mg each? And is it on an empty stomach followed with a feeding 30-60 minutes later? As well, how much does she weigh?

When my daughter’s reflux was really bothering her, she would have a hard time drinking during the day. The first ounce would usually be OK then after that she would fuss and pull away or turn her head away from the bottle and cry. However, she could eat just fine if she was half-asleep during the night. This didn’t resolve until I got her on a good dose of Prevacid. I remember the first time she actually drank 5 ounces in 20 minutes while awake – I was so excited I had to phone my husband at work and tell him! So just based on my personal experience, I think it may be that her dose of Prevacid isn’t high enough for her and it is too painful for her to drink well while awake.

Have you visited http://www.marci-kids.com ? They have lots of good info about Prevacid and other PPIs, how they should be given, and they also have a dose calculator so you can determine the best dose for your child based on age/weight.

My daughter also stopped vomiting as much once she was switched to Neocate, but she still refluxed silently (ie. the acid/stomach contents still comes up the esophagus and hurts/causes damage but is swallowed back down).

Good luck!

[Anonymous]

This is exactly how Krista feeds during the day. She takes one ounce pretty well, then turns her head and pulls away from the bottle. She also does fine for her half asleep bottles, usually taking 5 to 6 ounces.

Krista just does one does of 15 mg. in the morning on an empty stomach. Then I do my best to get a feeding into her in the next 30-60 minutes. But it is usually about 2-3 ounces.

Should I be concerned about her drinking so little at 6.5 months. At our last GI visit she was in the 10% for weight. After 1 month on neocate and prevacid, she moved up to 25%. But she seemed to be eating a couple more ounces when we first made the change, and now she has dropped back down to 22 or 23 ounces a day (she was eating this at 3 months old!).

Yes, I did visit marci-kids website and printed out the information. I said she could take up to 22.5 mg. I printed this out and I think I will take with me to the Pediatrician or GI. I think our GI will be resistant to this dose. In the first 2 weeks I told her it wasn’t working and she said that Krista was already on a too high of a dose for her age and weight. She must not be informed about these studies from marci-kids. What should I do? Maybe go to her pediatrician with the information?]

Thank you for your help!

Jennifer

[hellbennt]

[no idea why the bottom part of the post is underlined- sorry]

fax pediatrician?

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

hellbennt2007-12-18 23:00:09

[Anonymous]

Thank you so much for your replies. For the last couple months I had been attributing this to teething, lack of sleep, or just a cranky temperament that she was born with. My mom kept saying we just have one of the most difficult babies she has ever met. It never dawned on me that it could still be reflux, because I thought that the neocate was pretty much supposed to fix it. If I remember correctly, the GI explained that her reflux was from MSPI, and once we fix that, she won’t experience the reflux anymore.

But I do vaguely remember that at one time (when zantac was working) she was a pretty happy baby. I want her to be a happy baby like so many others I see and read about. I love her with all of my heart, but when I wake up in the morning, I just dread what kind of a day is ahead of me. She is so cranky all of the time that I miss all of her other signs – its hard to tell when she is tired, hungry, needs a diaper change, etc. But now I feel so bad because I think it has been her reflux all along and she has been feeling horrible, and I did nothing about it for 2 months.

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