Tuesday, 11/26/2013

lansoprazole at 730, 2, and 6

TWO good naps, today. 11-2 and 3-6.

Pleasant overall. Ate well. Usually will take up to 4oz at a time, now.

Nighttime, still takes over an hour to get her to settle down. Will put her down in bassinet and she'll spit pacifier out or get hands up out of swaddle blanket. Pacifier will need to be put back in at least 10 times over the course of an hour before she'll fall completely asleep. No crying or severe discomfort, just a lot of squirming and turning her head from side to side.

830-5 (8hr30m!!!)
545-730 (1hr45m)
TOTAL 10hr15m

Wednesday

lan @ 730, 230, and 545

Continuing with KlaireLabs probiotic 1/4 tsp once a day in morning bottle

No long naps, but no super short ones either. Pleasant. Squirmy at night. Need to keep up with the simethicone in every other bottle, I think. Will try that tomorrow and see if it helps.

8-1245 (4hr45m) woke to eat and have a BM
2-7 (5hr)
TOTAL 9hr45m

Saturday, 11/23/2013

Small catnaps until afternoon, slept from 230-5

lansoprazole at 7, 1230, and 5

Pleasant throughout the day

9-345 (6hr45m)
5-730 (2hr30m)
TOTAL 9hr15m

Sunday, 11/24/2013

lansoprazole at 730, 1215, and 6

No good naps. Possible reflux flares. Not very cranky, just unable to sleep out of my arms. Very squirmy.

9-12 (3hr), had to put pacifier in and reswaddle at 1045, seems uncomfortable
slept through most of feeding
1-345 (2hr45m)
445-7 (2hr15m)
TOTAL 8hr

Monday, 11/25/2013

lansoprazole at 730, 1130, and 630

One good nap from 4-630. Had to work hard to get her to take it.

Pleasant throughout the day, just squirmy and unable to sleep out of arms as usual

830-12 (3hr30m) needed a pacifier and reswaddle at 1030 - not as squirmy and uncomfortable as last night
115-345 (2hr30m)
445-7 (1hr15m)
TOTAL 7hr15m

Tuesday, 11/19/2013

Small catnaps throughout the day. Pleasant demeanor. Congested -- I think she has a cold.

lansoprazole @ 9, 330, 6

1 dose of probiotics @ noon

1 dose of digestive enzymes

Very cranky in evening. uncomfortable. stomach pain?

1045-2 (3hr15m)
3-6 (3hr)
TOTAL 6hr15m

Wednesday, 11/20/2013

lansoprazole @ 6, 3, and

Naps from 8-1030, 1-3, and 430-630

Sleep 830-11 (2hr30m)
1145-245 (3hr)
330-430 (1hr)
sporadic/crummy sleep after that
TOTAL 6hr30m (yikes)

Thursday, 11/21/2013

Hour-long nap in morning, small cat naps in afternoon
Lansoprazole at 9, 230, and 530
Still giving Klaire Labs probiotic in morning bottle
Simethicone drops in a few bottles
Hard time getting to sleep tonight. Didn't want to be put down. Seems okay when held.

915-1245 (3hr30m)
130-230 (1hr) (reswaddled, moved so feet touched end of bassinet)
230-7 (4hr 30m)
TOTAL 9hr

Friday, 11/22/2013

lansoprazole at 715, 1, and 630

Hour-long nap in the morning, semi-decent nap in afternoon

830-1230 (4hr)
115-7 (5hr45m)
TOTAL 9hr45m

Sunday, 11/17/2013

Lansoprazole at 9, 130, and 6

She must have gotten sick. A little congested, one eye a little crusted this morning. Fell asleep unswaddled in her chair at 1015. Woke up soon but is very lethargic. Still pleasant, smiling and not feverish.
Started KlaireLabs probiotic about 1/8tsp in morning, will increase to 1/4tsp gradually

Small catnaps throughout the day. Very cranky toward evening. Hyoscyamine seemed to help settle her down to fall asleep at night. No stirring at all once down for the night.

7-1115 (4hr 15m) very uncomfortable when woke, had a BM
1230-430 (4hr)
515-745 (2hr30m)
TOTAL 10hr45m

Monday, 11/18/2013

Lansoprazole at 745, 3, and...?

Meeting with GI this morning. He said there isn't much more he can do for her at this point. Keep giving Prevacid and hyoscyamine occasionally. Also probiotic. He suggested thickening her bottles with 1tsp of rice cereal per ounce but I'm not sure I'm going to do it. Said for extreme cases where baby won't stop screaming he has prescribed a tricyclic antidepressant (not even going to go there) and also gabapentin (brand name Neurontin), which my husband takes for back pain and an ex boyfriend of mine took for OCD. Definitely not worth putting her on that when she has been sleeping and hasn't been *that* cranky. He said it's really a matter of waiting it out. Not really what I wanted to hear, but I'm glad she's doing as well as she is. I told him I feel bad complaining because she's still gaining well (she was a solid 12 pounds even today) and eating well, and she isn't screaming 24/7, and I know there are babies out there who are doing way worse than she is. I just hoped we'd find a magic cure-all so I wouldn't have to go through this with the hypothetical Baby#4.

Nora slept from 12 to 245 and decided to fall asleep for the night at 530.

530-9 (3hr30m)
10-230 (4hr30m)
330-630 (3hr)
TOTAL 11hr

Wednesday, 11/13/13

Lansoprazole at 730, 230, and 615

Nap on me from 9 to 930, woke up as soon as I put her down.
Other tiny, sporadic naps on me throughout the day.
Finally slept on her own from 4-6.

Spoke to doctor, he prescribed solutabs 7.5mg 2xs a day.

730-845 (wakes up by bringing hands up out of swaddle and sucking on them) (1hr15m)
850-1250 (broke out of swaddle and slept somewhat fitfully, but self soothed the entire time and never fully awoke) (4hr)
230 (put down at 2 but needed pacifier put in st 230) -630 (4hr)
TOTAL 9hr15m

Thursday 11/14/2013

Lansoprazole at 9 and 6 (she napped through the middle dose)

Cat naps until early afternoon (1-330), and no decent evening nap at all

Hard to get to sleep, possibly just overtired
No noticeable acid or stomach cramping today
Started giving digestive enzymes (half a capsule) in most bottles (when I thought of it)

730-130!!! (beautiful, peaceful sleep) (6hr)
230-615 (3hr45m)
Half hour cat nap at 7, I won't count it toward her total nighhtime sleep
TOTAL 9hr45m (A GREAT NIGHT)

Friday, 11/15/2013

One semi-decent nap
Seems very acidy today
Yesterday I gave solutabs -- can I not mix the solutabs with the capsules?
Also used an old solutab from the other kids - checked and it was expired - not effective?
Will try to give just the capsules from now on

730-12 (one wake-up at 10 to put pacifier back in) (4hr30m)
(2hr) of really bad sleep until 4

Friday night was too awful to mention. Up every hour, just about, and very uncomfortable.

Saturday 11/16/2013

Slept uncomfortably in her chair much of the morning. No good naps in the afternoon. Dosed lansoprazole 3 times, not exactly sure when. Not sure what happened. Cried a bit.

Went down at 8 but didn't actually settle down and enter deep sleep until 930.
930-1 (3hr30m)
130-630 (5hr)
7-8 (1hr)
TOTAL 9hr30m

Hopefully getting better.......

Monday, 11/11/2013

Tiny nap from 945 to 1030
Another from 12 to 1230
1 to 145 (most of which was on me)
3 to 4 (all on me)
Very restless, very difficult to soothe
Noticing a lot of gas -- from the shots or the lansoprazole?

Lansoprazole dosed at 8, 220, and 730

Seems to be gassy. From the shots? Lansoprazole? The 1ml per dose of apple juice?

Was told Dr. Phillips advocates the use of Pedialyte in the dosing of delayed release capsules, so I'm going to switch over to using that, just in case.

We haven't used simethicone in her bottles since we ran out a few days ago (I didn't think it was making much difference), so Dave thinks we should start her up on that, again.

9-1215 (3hr15m)
still very gassy, passing a lot of gas, but too exhausted to fight sleep
1-330 (I popped the pacifier back in because I was too tired -- and it worked) (2hr30m)
330-530 (her eyes never opened so should I count it as one big stretch?) (2hr)
615-715 (1hr)
TOTAL 8hr45m

Tuesday, 11/12/13

I was yesterday and today with the flu; we all got flu shots but somehow I got it anyway, just hoping Nora doesn't get it.

lansoprazole at 815, 215, 6

Naps 9 to 950 (1 sleep cycle) on Boppy next to me on sofa
1140 to 1220
230 to almost 330, but never really entered deep sleep, kept waking up
330 to 440 in my arms, and 440 to 6 on Bobby next to me on sofa

A little cranky in the evening, but she might have just been exhausted.

815-1145 (had to put pacifier in at 945 and 10) (3hr30m)
1215-3 (2hr45m)
345 to 730 (3hr45m)
TOTAL 10hr (!!)

More direct quotes from Dr. Phillips

Copied and pasted directly from here: http://z15.invisionfree.com/Parents_to_Gerdlings/ar/t12.htm

Title: The Man Who Created Zegerid, Bb, Cc-z & Cc-m

Rachael - November 2, 2010 07:58 PM (GMT)

I am at the University of Missouri. I invented a drug, Zegerid. My work on PPIs began in 1994 when I was treating adult patients in the ICU that developed bleeding ulcers (called stress ulcers). If you google SOS (simplified omeprazole suspension) and Phillips you will see my early studies in life threatening upper GI bleeding from stress ulcers. At about the same time (1996 or so) I was informed that infants suffered from acid reflux and there were no meds specifically made for them. So I began working on studies of PPI medicines (primarily omeprazole and lansoprazole) in infants. It is then that I began to measure the elimination rate (similar to half-life) of these drugs in infants and discovered that they were being eliminated three times faster than in the adult population. Since that time Zegerid was FDA approved and now is available OTC. I continue to study acid reflux in infants and young children to try to understand the best ways to treat this condition in the safest way possible. Please ask any questions - always ask questions - never stop - that is how you become informed.

To do what is best for your LO, don't accept the status quo.

Here is a direct quote from Dr. P--

"Yes I invented Zegerid and it was my goal to provide a PPI medicine that would be in a suspension form for babies and for adults in the intensive care unit that were at risk of stomach bleeding from too much acid brought on by the stress of being critically ill. So I worked for ten years and finally there was a company interested in bringing the medicine I had worked on to market. Santarus was/is that company. Once they obtained the rights to Zegerid they needed to get the medicine on the market as soon as possible. So they went to the FDA and said look Zegerid contains omeprazole and omeprazole is already approved. Can we get a faster approval? The FDA came back to Santarus and said if you show that Zegerid is absorbed similarly to Prilosec (omeprazole) then yes we will grant approval. But you will have to use everything that is in the Prilosec labeling (including the information about waiting for at least 30 minutes after taking Prilosec to eat). And no I was not involved with the FDA process as the Santarus company had its own internal persons working with the FDA".

Wednesday

Cranky, acidy at times. Hard time napping but I got her to take two. 1130 to 130 and 3 to 515. Spoke to D. Mizell and got Prevacid suspension dose upped to 6mg twice daily.

830 to 130 (5hr)
215 to 415 (2hr)
(I think this is an acid dump issue.)
515 to 730 (2hr15m)
TOTAL 9hr15m

Thursday

Decent naps, but hard to obtain. Slept about 1030 to 12 and 3 to 5, with a quiet time at around 1 when we took Jen to school.
No longer taking suspension well (tastes bad). I want to try otc lansoprazole and see if the doc will prescribe the capsules.

Tried to get down at 9, acid too bad. Slept maybe 30min. Needed Rolaids to get back.
1030-130 (3hr)
215 to 530 (3hr 15m)
No real sleep after that. :(
TOTAL 6hr15m

Friday

Started dosing with the beads in the lansoprazole capsules. Half the beads in the morning and half at night. I want to add in a dose in the middle of the day but her naps today didn't allow me to do so.

Doctor appointment at 10. Had 1 oral vaccine and 3 shots. Slept from 11 to 12, then 130 to 530 (probably because of the shots). Got a dose of Tylenol at around 7. Fell asleep again at 730.

730 to 12 (4hr 30m)
1215 to 3 (2hr 45m)
4 to 6 (2hr)
Fitful sleep until 730.
TOTAL about 9hr15m

Saturday

Small nap from 10 to 1045

Nap from 12 to 1245, another from 3 to 5

Gave lansoprazole at 730, 1, and 7. Big acid flare-up at 815, needed Rolaids liquid to settle down enough to sleep.

Nighttime
845 to 1145 (3hr)
1220 to 420 (4hr)
5 to 730? (cant remember) (2hr 30 m)
TOTAL 9hr30m

Sunday

no good naps, very restless, cranky in the evening. gave lansoprazole at 730, 1, and 7.

Nighttime
930-12 (2 hr 30 m)
1-4 (3 hr)
445-645 (2hr) popped pacifier in, reswaddled
645-8 (1hr15m)
TOTAL 8hr45m

More from Dr. Phillips on acid dump (nocturnal acid):

You have a period of acid dump from 2 am till about 7am.    That is the period of maximal acid dump at night. So, if the drug is in the bloodstream for a maximum of ~2hrs (remember the absorption occurs after ~1.5hrs so, from the 1.5hr mark forward for ~2 hrs you have coverage for any acid being made.   So let's say you time it perfectly and give the dose at 1/2 hr after midnight so that the drug would be in the blood stream at 2 am (it takes 1.5 hrs to get absorbed) Then at 2 am you would have drug present for 2 hrs - till 4am.  Then no drug - but body still making loads of acid (nocturnal acid).  From 4 am on there would be no protection from acid

The acid pumps (called proton pumps) are in the acid making cells (called parietal cells).  They make acid when signaled to do so.  They are signaled to make acid after you begin eating (mainly by food or milk which raises the pH in the stomach).  After your evening meal they go dormant till approx 2am, then they come on and make a large amt of acid.  This is because long ago we did not cook things well (no stoves existed, hardly any fire existed) and the large meal of the day was at night then you went to sleep.  During the night your body would make a lot of acid to kill the bacteria you ingested (that is how you lived through the night-in essence).  So we still have that 2 am to 7 am acid dump. 

The other thing you have to know is a little PPI pharmacology - PPIs can only turn off acid pumps that are already on.  So if the pumps are not on (in the resting phase) and you take a PPI (that does not have a buffer) then the PPI will get absorbed and when the PPI gets to the parietal cell it will find no acid pumps that are on and it will not be able to shut off any pumps and the PPI will be removed from the body (just as all drugs are removed from the body) through metabolism and elimination.  If you take the PPI in an immediate release form with a buffer, then the buffer will turn on a large quantity of acid pumps and they will all get shut off by the PPI. Then later in the early morning hours when the body tries to make the nighttime acid dump (there will be no acid pumps remaining) - so no acid dump. 

See how amazing the body is

from midnight to 3 am for the beginning of nighttime acid dump.

The studies were performed (not by me) but over hundred's of studies who look at the baseline pH (before treatment) and then after treatment.  So all this baseline data exists and in the observation of these baseline data.  And it was observed (quite obvious) that there was all this nighttime acid.

Monday:

small nap out of arms from 1015 to 1045am. fussed much of the day, but no long stretches of screaming. good nap from about 1:30 to 4:30. fussed at store tonight. ate well. fell asleep at 730pm, with pacifier. spit out pacifier at 10pm.

Slept 10pm-12am (2hr)
1230am to 4am (3hr30m)
5am ro 7am (2hr)

Tuesday:

upper GI study at 930. preliminary results say no abnormalities. slept in car, also 11 to 1 and 2 to 4. not a terrible day. only really cried when tired or hungry.

Slept 9pm to 1245am (3hr45m)
115 to 415 (3hr)
445 to 645 (2hr)
sporadic/crummy sleep until 8am

Sunday: no real naps, especially out of arms. Heavy reliance on pacifier.

Sunday night: slept 8 to 11 (pacifier spit out at 830). Sleep somewhat fitful. Very tired.
1230 to 5
630 to 815

Diapers starting to smell acidy again.

Saturday night: woke every hour or less. Tired but couldn't stay asleep. Lots of squirming. Worst night yet.

Copied from a reflux group I'm on, I posted this Friday when we got home.

We saw the nurse practitioner (the GI was booked all yesterday and wasn't in, today, I figured the nurse was better than nothing, and I wanted to get in ASAP). My husband went in while I stayed in the waiting room with the older two kids, but she then came out to speak with me, anyway, since we were the only ones there at the time. Suggested an elemental formula even though we weren't dealing with classic MSPI symptoms. She first suggested Similac for Discomfort, but I thought that was one step more complex than what she was already on (why add in casein when that is notoriously harder to digest??), and I said my first daughter never did too great on Alimentum, so elemental was the only other real food suggestion she could make. We went home with 2 cans each of PurAmino, Neocate, and Elecare, and she told us we could get whatever we wanted for free, apparently she was willing to keep giving us as much as we needed, indefinitely (when we went to this practice two years ago for my son we left with 6 cans of Neocate, too). Insisted compounded Prevacid was better than solutabs, but that we still should give it on an empty stomach for maximum effectiveness (oy vey), and now we're on 5mg 2x's a day (anyone have success with so little for an 8-week-old baby?). Also prescribed Hyoscyamine. Said that to have any success with simethicone we need to do .9ml in every bottle, not .3. Also recommended adding in more probiotics even though the Gerber Soothe has some in already. We have a follow-up with the actual GI in 2 1/2 weeks. The nurse said if nothing else we can put her on gabapentin (Neurontin) for her "hypersensitivity." Gabapentin is a WEIRD drug, my husband's been prescribed it before for chronic back pain, and an ex boyfriend of mine was on it for OCD. I said if they thought it'd work, I'd give it a shot, but we're going to try everything else, first. So I thought I won't change formula just yet. One thing at a time. We'll try the Prevacid and the hyoscyamine, also more probiotics. The testing place is going to call us early next week to schedule the upper GI test, which my husband insisted we do.

Friday night: 11 to 3, then 4 to 830.

Saturday: One good morning nap, and a 1-hr afternoon nap. Still cranky, still acidy.

Thursday night
Slept 915 to 11(1hr 45 min), took 3oz bottle but gulped it fast, like she couldn't catch her breath. Tried switching out the nipple for a brand new one but it didn't matter. Fell right back asleep but didn't burp (I tried and tried to get her to). Couldn't put down until 1230 because was so acidy; further raised top of bassinet and gave a ml of Rolaids.
Slept 1230 to 3 (2hr 30 min). Gulped another 3oz too fast. Some small burps. Lots of gasping after when not fully upright.
Slept 4 to 8 (4 hours) but with lots of fitful sleep, squirming, gasping, even with elevated bassinet.

Friday morning
Won't nap. Keeps waking up. Not a lot of screaming, but gave Rolaids when it started. Eliminated the crying but baby's still too uncomfortable to fall asleep or stay asleep. Another diarrhea diaper.