Impatient?

[Anonymous]

Dominic was on (poorly) compounded prilosec for a couple of months. It

helped a little (still waking often at night), and then seemed to stop

working at all. So we did a 24-hr pH probe study, at the request of our

GI, for which we had to stop the prilosec for 5 days. After the test

results, we put him on Zegerid, 30mg per day (20 mg packets). As of

tonight it will be a full week he’s been back on meds, but so far no

change in his night waking. He still wakes up hourly, or more. I’m trying

to see if he wakes up crying, or just wakes out of habit and then cries

when he doesn’t immediately get breastfed, but in my fog I can’t quite

tell. It may be some of both. I am desperate to reduce the night

feedings, but don’t want to until I’m sure he’s not nursing to soothe his

poor throat.

Any ideas how to tell if the meds are working? He’s not a spitter, and has

no trouble with reflux during the day, really. I am sooo over the

interminable nights. I just watch the clock until 4 when dh takes him out

of the room.

Should I give it the full two weeks to ‘kick in’, or should it be working any

faster due to the fact that he was medicated previously? I’m wondering if

I should up his dose now, or just be patient (he’s on the MARCI-kids

recommended dose for his weight 18lbs and age 8months).

Also, doc wants to try a motility drug–I flat out refused the Reglan, but

agreed to think about the erythro. Should I try upping the dose before we

try the motility drug?

Any input would be appreciated (even if it’s just telling me to be patient).

[Anonymous]

zegerid is an immdeiate release medicatoin, unlike the other PPI’s so you should see resluts in a few days.
if he is not in pain during the day and is eating comfortably, then perhaps the reflux is under control and he is just a poor sleeper? or maybe he is teething? my son doesnt sleep well when he is teething.

also, if he is not a spitter, why on earth would they put him on motility meds? motility meds are used for babies that spit up excessively to empty their stomach faster so they dont spit up as much.

[Anonymous]

I’m sorry things are so hard still. My first refluxer was up all night until she finally outgrew her reflux at 9 months, so I certainly know how horrible it is.

My first though would be to check with marci-kids to make sure you are mixing the Zegerid correctly. And/or describe how you are doing it here and maybe some of the moms who have experience with Zegerid can help you make sure you are doing it correctly.

It’s true that many babies improve pretty quickly with Zegerid, but I’d probaby wait at least a few more days before trying anything else.

As for the motility drugs….from what I’ve read they are really meant for DGE and not for reflux. They can help to decrease spitting up or vomitting, but they are not meant to treat reflux. Does he spit up or vomit a lot?

If he’s generally happy during the day and has no feeding problems I would definitely consider the possibilty that some of his night wakings may be due to habit now. It’s hard enough for healthy, pain free babies to learn to sleep through the night, so it’s only more difficult for a reflux baby. In any case, since his ph probe showed reflux (I assume since he was prescribed Zegerid), I wouldn’t be ready to let him cry at night or do any sleep training until I was sure he was pain free. Maybe give it just a little more time and see if the Zegerid begins to help him sleep better at night.

Good luck. I hope things begin to improve very soon.

[Anonymous]

Sorry things are so hard for you guys right now. Maybe a little Mylanta during the night would be something to try? It is so hard to figure these little ones out. Do you give the Zegerid 3 times per day – what times do you give it?

Robin

[Anonymous]

Well, he is a silent refluxer, and the pH probe confirmed that, so I’d imagine that the idea is that if his stomach contents were emptied faster (if that is the issue), he’d have less to reflux in the first place, regardless of whether or not it is coming all the way up.

He could certainly be teething, but none have shown up yet! (dd didn’t get any until 9 months).

And he is definitely a poor sleeper, and I would like to take (gentle) steps to resolve that, but am hesitating due to the possibility that he might still be in pain. It’s so hard, since during the day he really is the happiest kid. We do have to hold him in order to get him to nap longer than 20 minutes, but he hasn’t shown signs of pain during the day since he was about 2-3 months old. Yet the pH probe definitively showed acid, and 120x’s per day (50-70x’s is normal). So it’s not super severe, but enough to wake him up.

[Anonymous]

We give Zegerid 3x’s per day, at roughly 8am, 1-2pm, and 7pm. We also use Cherry Mylanta Supreme before car rides, and whenever we think it might help.

To mix the Zegerid, I have tried two ways: mixing 5 packets (to make 50mL), and mixing a single packet with 6.5mL of water. I think I prefer making a single packet–when I mixed multiples, it felt like I wasted a dose. When I do a single, I can pull up the first dose, and then add a little extra water to add to the remaining dose in order to get all of the powder that has clung to the sides (I’m mixing in a small baby food jar, as I wasn’t given a syringe by the pharmacy).

[Anonymous]

sarah—what was the overall percentage of his reflux?

[Anonymous]

I would try the mylanta stuff at night…or even see if you could get him on a dose of Zantac or Pepcid at night. My daughter has been too three GI’s…one of them told me that she always prescribes either of those two to be taken at night in conjunction with the PPI…I know a lot of people here don’t use that, but I know once we started giviing it to our daughter her sleep improved SOOO much! Now we only deal with night wakings every so often and mostly for teething and illness. My daughter was like your son with the short naps too.

[Anonymous]

My son is exactly the same way. At one point he would sleep for 7 hrs straight and then all of a sudden he started waking every 30 mins. I have a video of him on here waking if you want to take a look to see if your baby is doing the same thing. i think it is under mis. and it says video of Justice. The only thing that has helped us is I breastfeed him all night long. That will get me a good two hrs and sometimes more before he wakes again. Also we have an amby bed and sometimes I can bounce him back to sleep.

How long has your baby been sleeping poorly? Has it been since you started the Zegerid? My little guy is also on Zegerid. He actually is teething right now so he really isn’t sleeping no matter what I do. If you do figure out what is going on please pm me. I feel like there has to be some solution to Justice’s night wakings, but can’t figure it out. We tryed Mylanta, no mylanta, swaddeling, white noise, amby bed, co-sleeper, next to me in bed, Cereal, and many other things. Non of it worked. please again if you figure it out please let me know. Like I said before Justice was a great sleeper and then all of a sudden it hit and hasn’t gone away. At this point I am waiting for him to be nine months and hopefully outgrow the reflux.

[Anonymous]

Christine,

I didn’t hear that number–the only info I remember from the phonecall was 120 times in a 24 hour period, and only one episode lasting longer than 5 minutes (it lasted 20–and he thought it was in the early morning hours, a particularly bad time for our sleep). The doctor commented that while it’s not very severe, it is definitely reflux, and reason to be a bit more aggressive with meds. I’m going to fax and ask for the report–I really want to know what the readings were at different times of day, and the correlation between when we hit the episode button, and when he had acid. I was a little annoyed that as soon as we got the pH probe results, he ordered another test just as routine (barium swallow). I’ve been reluctant to do tests, since he is not having any feeding/growing issues, and really doesn’t seem to be in pain except at night (otherwise I wouldn’t hesitate).

[Anonymous]

Sarah:

If you want me to, I can send you some syringes – we get them at our local veterinary clinic (have a friend who works there). Just PM me your address and I would be happy to send you some – don’t worry about the cost – it’s so minimal it isn’t worth worrying about. They are 35 ml syringes so they work great for a triple batch. I put in 19.5 ml water and 3 20mg packets – works like a charm

Robin

[Author]

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