Infantreflux.org | Just when you think things are better!

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August 30, 2006 at 11:50 am #12660

Anonymous
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Things have been crazy around here with my kids going back to school!

Emma has been on 7.5 mg of Prevacid 3 times a day and things seemed to be getting better. She has actually been pretty happy. Still fussing at feedings a bit but not bad. She has started throwing a hissy fit before she falls asleep at night, so thats been pretty fun. There is just no easy way to get her to sleep. Sleeps pretty good when she finally falls asleep though at least.

Then a couple days ago she started screaming again when we tried to feed her. She had been spitting up less. She is a silent refluxer most of the time and I noticed her doing that a lot less as well. Couldn’t figure out what it was. Her voice started getting hoarse and I realized she was getting thrush again. It was on her tongue and one spot on her lip. The last time she got thrush, it made her voice hoarse as well. So…we are back to screaming like crazy at mealtime. I finally gave up and switched her back to the larger nipples because that’s the only thing that keeps her from screaming. I stopped using them because she was coughing and choking and spitting up a lot after eating and I had no clue how much she really wanted to eat because she ate the bottles so fast.

Last night she was awake until midnight, wouldn’t sleep, wouldn’t eat, hardly ate all night. It’s really frustrating thinking maybe we have things under control and suddenly they are back to the way they were before. The only difference is before she was screaming constantly off and on all day and now she is generally happy except when you try to put a bottle in her mouth. Oh, and she has taken to turning her head all the way to the right again when I feed her. She had stopped for awhile. So she lays in my arms with her head almost completely to the side – makes it a little difficult to feed her that way also. She’s better with the bigger nipple but towards the end of the bottle, her head goes to the right again.

My question is, has any one noticed thrush aggravating reflux, or maybe Diflucan aggravating it, had a baby with thrush in their throat? I don’t know what’s making her act up again suddenly unless it’s just the thrush, but the last time she had it, she didn’t even act like it bothered her a bit. The other other thing is, and this is probably going to sound weird and I don’t know how to properly describe it, but a lot of times when we lay her down (and it’s not necessarily after feeding all the time) she will be laying there looking around and suddenly start doing this weird, almost twitching, jerking movements..like her head will twitch to the right, then an arm and leg..almost like a jerky dance – if we pick her up, she stops. She seems perfectly fine and alert when she is doing it. Could this possibly be a sign of reflux or possibly just nothing?

Thanks for reading this! Am a big frustrated and tired today!!!

August 30, 2006 at 12:42 pm #12665

Anonymous
Inactive

Hello,
I’m sorry things have gotten so bad again! The ups and downs are so frustrating, I know.
I think thrush makes their mouth (and throat) kind of sore. When my son had thrush he didn’t want anything to even touch his mouth. So that might be part of her problem. I’m not sure about it aggravating reflux. It didn’t seem to affect my son’s reflux. I hope things will settle back down for you!

August 30, 2006 at 12:47 pm #12667

Anonymous
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that twitching stuff sounds like it could be sandifiers….

August 30, 2006 at 12:49 pm #12668

Anonymous
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https://www.infantreflux.org/forum/forum_topics.asp?FID=24

August 30, 2006 at 12:52 pm #12671

Anonymous
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Someone posted a while back that reflux can cause thrush. It makes
sense with all that acid. Hopefully now that she’s getting more
Prevacid she won’t get thrush again.

My firsborn had thrush at 4 months. (She did not have reflux; it was
caused by antibiotics). She was always a good eater/happy baby/great
sleeper, but when she had thrush she was miserable, couldn’t sleep, and
wouldn’t eat. It must be very uncomfortable. Fortunately the Diflucan
worked great and she was fine in a few days. I hope Emma’s thrush
passes quickly.

The twitching may be a pain response but if it doesn’t stop soon with
the higher dose of Prevacid and the thrush passing I would talk to her
doctor about it.

August 30, 2006 at 1:34 pm #12679

Anonymous
Inactive

You know, I wondered if maybe the reflux could cause thrush, but who knows. It kind of makes sense to me. It seems like to me she would be in pain since both times she has had thrush her voice is very hoarse. Maybe the reflux causes it to go into her esophagus which is causing the hoarse voice and pain?

Just when I think I figured something out that works with her, she has to go and prove me wrong. Tried to feed her just a bit ago with the bigger nipples that have been working and all she did was cry and kind of chew on the nipple like she does. So I put her on my shoulder and she sucks on my shirt, her fist, the burp rag, but not the bottle or the pacifier! Last night both my shoulders were soaked from her sucking on my shirt.

Anyway, the Sandifer’s thing, I just don’t know. Sometimes it seems like she could have it and sometimes not. She does have some of the symptoms. It’s hard for me to say without actually being able to see a baby who does it – which I know all baby’s are different – but it would help since it doesn’t sound exactly like what she does – just parts of it.

As far as the Prevacid dosing goes, the doctor gave me 30 mg samples of Solutabs for her and said I could break them up and give them to her 4 times a day, 3 times a day, whatever worked. The Marci-Kids website says the recommended dose is 24-30 mg per day, but that for the 30 mg Solutabs I could round it up and give her 1/2 pill 3 times a day which would be 45 mg a day – that seems like an awful lot for not quite 12 pounds. Just nervous about giving her so much.

August 30, 2006 at 1:47 pm #12682

Anonymous
Inactive

That does sound like a lot, but my son was getting 30 mgs. so it’s not
much more than that. You could try dividing them and giving her a
little less than 1/2 each time so it’s closer to 10 mg instead of 15
each time. Is you doctor going to give you as many solutabs as you
need? If you can get as many as you want then you won’t have to worry
about wasting some.

The 15 mg tablets were easier I think because what I did was take two
tablets and divide them into three equal parts, so then he would get
approx 10 mg each dose/ 30 mg per day.

I think her eating and not wanting anything but your shirt in her mouth
will pass when the thursh is gone. Liza was that way when she had it,
too.

August 30, 2006 at 2:00 pm #12684

Anonymous
Inactive

Actually, that is a pretty good idea – the Prevacid. I wish there was a way to do that with the 30 mg tablets. Those are the only samples the office had. I have a prescription for the 15 mg tabs, so will have to try your suggestion with the 10 mg 3 times a day and see how that goes. She’s only been getting 22.5 right now since I wasn’t sure how to go about dosing her with the 30 mg tabs. Thought about trying the 4 times a day the doctor suggested, but just haven’t done it yet. Don’t know if it’s a better idea to give larger doses 3 times a day or an extra smaller dose 4 times a day.

August 30, 2006 at 8:11 pm #12723

Anonymous
Inactive

I think four doses would be very difficult to manage because of the
timing on an empty stomach and following it up with a meal 30 minutes
later. I had a hard enough time doing that with three doses.

I’d definitely go up to 30mg. That’s what finally turned things around for Myles.

Hopefully with the higher Prevacid dose and the passing of the thrush you’ll have a new baby in a few days.

August 31, 2006 at 8:16 am #12733

hellbennt
Keymaster

as for the sandifer’s- you don’t need all of the symptoms- just one or 2 here & there- they help to ‘show’ you that the reflux is not under control…think of the term as a description…it’s not a disease in & of itself- it’s a list of symptoms…if you’re seeing anything and you think it’s sandifer’s, chances are it is…they all went away once we got jonah’s meds ‘right’ and that took months….

August 31, 2006 at 11:30 am #12746

Anonymous
Inactive

Strawberry-

How did you get her doctor to prescribe her the Prevacid 3 times per day? My dd is almost 5 months and has been on 7.5 2x’s per day since 10 wks. I think she also needs a larger dose. I talked to Dr. Phillips by email and phone and he rec. 10mg 3x’s per day. I would at least like to try another dose of 7.5 mg.

So I faxed the marci-kids info and emails to Abby’s GI and she won’t increase. Then I tried the pedi. and got the same response. She is crying and arching her back during feedings and they want to us try Neocate. So we started on this yesterday. If this doesn’t help, I’m pushing the increased dose.

August 31, 2006 at 12:08 pm #12747

Anonymous
Inactive

Christine – I don’t think I want to go to 4 doses a day. I agree with you, it is hard enough to time it on an empty stomach 3 times a day. Zegerid would be really nice so you could just give it whenever, but I am going to keep giving the Prevacid a shot for awhile because it really does seem to be helping. Have been trying to figure out a way to give break up the 30 mg tablets (I have 2 months worth of samples) so that she has around 30 mg 3 times a day. So far I haven’t come up with a good way. I figured out a way to do it with the 15 mg ones. I guess the worst part is, you can’t ever really divide them the same way because they are so crumbly and I don’t like thinking I am giving her a different dose every time. Yesterday she had 33 mg the whole day and she was really good. How did you get them divided into 3 equal parts??

Laura – I suppose Emma could really have it because she does do some of those things and it’s either when she is eating or shortly after. Normally they happen when she is eating though. Yesterday on the higher dose of Prevacid that I gave her, she was really good, but again this morning after all night without the medicine she was turning her head – ate without a fuss though.

Andrea – When I first took Emma in to talk about the reflux they put her on Zantac and she was only on that for a few days and I got the Prevacid at 15 mg once a day. I changed her dose myself – Gave her half in the morning and half at noon, then added another half in the evening on my own. It seemed to really help her alot, so basically I printed out all the Marci-Kids information and went back to the doctor at her 2 month check ready for a fight. Told him what I had done with the dosage and waited for him to say something and all he said was, well you could give her more if she needs it. So, I didn’t have to fight a bit. He gave me 30 mg samples enough for 2 months and told me to fiddle around with the doages and let him know what worked the best. Go figure! I was ready for a fight when I went in and thankfully my doctor was aware of everything. It sadly really seems that so many doctors are completely uneducated about infant reflux and how to really treat it. The only advice I can give you is keep yourself educated and keep at the doctors – try your hardest to make them listen. Video tape your baby so they can see exactly how much pain she is in – I did that with Emma when we first went in and I said – Look! This is what we go through EVERY time I feed her. Something has to be done to help her because this is not normal! Honestly, you could consider going to a different doctor (if you are able). Maybe you could get Dr. Phillips to call either one the physicians see now. Maybe talking to another physician would get them to listen. Those are some thoughts that I have.

More than anything, keep plugging away. You know your baby hurts and she needs more medicine. Feeding should be a happy, comforting time for babies, not miserable and painful. Maybe the Neocate will help some!

Take care and good luck!

August 31, 2006 at 12:52 pm #12751

Anonymous
Inactive

I actually did video tape her eating and showed it to the nurse practitioner at her pedi. office. Both her and the pedi and the GI said that since she only shows problems when she is eating then it is a formula issue not the reflux. So we will see.

I actually started Abby on the 7.5mg 2x’s a day also. Her GI only dosed 10mg once a day. I upped it after talking to Dr. Phillips and then got it okayed with her GI. They said that they thought it was a large dose but would go with it.

August 31, 2006 at 12:55 pm #12752

Anonymous
Inactive

Mom to Emma,

The way I divided the solutabs into three doses was to take the two 15
mg tablets and line up three small containers. Then I would carefully
divided the first into two pieces; one bigger which I estimated to be
2/3 and the other smaller; 1/3. Then I did the same with the second
solutab. I’d put the two bigger pieces into two containers so each was
2/3 or 10 mg, and the two smaller pieces into another container which
was 1/3 + 1/3; again 10mg. I’m sure it wasn’t always perfectly divided,
but close enough and he was always getting 30 mg a day. I think you
could do it with the 30mg tablets, but it would be trickier.

Andrea, Don’t give up. I had to
pester Myles’ doctor for 6-8 weeks before she finally agreed to the
higher dose. A video is a good idea. With my second child I made an
appointment when I knew she’d be hungry and tried feeding her in front
of the doctor. Then she could see how Ellie behaved during feedings.
Some moms here have had success by asking Dr. Phillips to call their
peds or gi’s. If all fails you may have to look for another doctor.
Good luck. I know how hard it is. I’ve been through it twice.

August 31, 2006 at 1:09 pm #12756

Anonymous
Inactive

motherof3 wrote:

I actually did video tape her eating and showed
it to the nurse practitioner at her pedi. office. Both her and
the pedi and the GI said that since she only shows problems when she is
eating then it is a formula issue not the reflux. So we will see.

wow that is so untrue.
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