Infantreflux.org | Prevacid loosing effectiveness?

This topic has 10 replies, 1 voice, and was last updated 17 years, 3 months ago by Anonymous.

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July 31, 2009 at 8:25 pm #63436

Anonymous
Inactive

Hello! I can’t believe I just found this forum. My daughter is almost a year old (on 8/13) and we have been dealing with reflux since she was 3 weeks old. K has reflux and dairy and soy intolerances. In addition to all that she has had 7 ear infections since Dec and finally got ear tubes yesterday.

Around 9 months she finally stopped spitting up, but continued to reflux. We tried to wean her from the Prevacid but it didn’t work. The last 1.5 months she has slept HORRIBLY, waking anywhere from 2 to 5 times per night (on good nights). Prior to that she slept 12 hours straight waking once three hours in to her sleep to nurse and then back to sleep for 7-8 hours. We chalked it up to a double ear infection that started in the middle of June and took 6 weeks to get rid of (4 different antibiotics). But the last week (before the tubes) she has had no ear infection, but continued to get up multiple times per night. Today she refused almost all her bottles at DC and it took them a couple times to get her to eat her lunch (she ate her breakfast just fine). She normally drinks 14 oz over the day and today she drank only 4.5 oz. Over the last couple months we have seen her do this a few times, but just assumed it was due to the ear infections. Now I’m not so sure. I’m wondering if her Prevacid dose is loosing effectiveness. She has been on the same dose since she was 7 weeks old. The last time we saw her GI he mentioned she was close to the weight threshold for that dose, but he didn’t want to change it to see if we could wean her off of it. We get the Prevacid compounded at 3 mg/ml and she takes 1.5 ml twice per day — so 9 mg per day. She probably weighs around 19-20 lbs.

It’s gotten to the point where I second guess everything, because just when I think we have an issue licked (dairy/soy issues, reflux, ear infections), something else comes up. I can’t call her GI until Monday — would it be crazy to up her dose over the weekend to see if it will help? How much would you increase it? How long would it take to see if it works?

Thanks!!

August 1, 2009 at 9:22 am #63438

Anonymous
Inactive

HI and Welcome. Just a few things from reading your post. Compounds aren’t usually made properly but if you have been doing this for almost a year with a compound then you may have someone who is making it right. Also her dose is way LOW! My son was on 30mg/day for most of the time he was on prevacid(we used solutabs). I would check out http://www.marci-kids.com as they have all the up to date info on infant reflux and they have a dosing calculator. Also check our Laura’s groupie intro stickied under the introduce yourself section, it has a ton of great information. Glad you found us!

August 3, 2009 at 4:59 pm #63448

Anonymous
Inactive

Sounds like your daughter is not ready to wean off the meds and more importantly she needs a higher dose for awhile anyway. Ear infections and antibiotics do a real number on reflux. I suggest asking to have the dosage increased to see if that helps. It might take a couple of weeks. Also if she is not on a probiotic I would get her on on ASAP to deal with the aftermath of being on antibiotics for 6 weeks. You may be dealing with a nasty over growth of yeast as well as the reflux. Once she is a year you can try to drop the dosage down again.

August 4, 2009 at 1:13 pm #63449

Anonymous
Inactive

Thanks for the responses! The initial wean was a 9 months and it didn’t work. She will be 1 in less than two weeks. I left a message for her GI yesterday, but haven’t heard back. I have so many questions, he probably got freaked out by my message =) As for the probiotic, every time she gets an antibiotic, she get probitics for the duration of the meds course and then a few extra days. I haven’t given her probiotics in about a week or so, but I’ll put her back on them tomorrow. Sat night I increased her Prevacid dose to 2.5 ml twice per day (15 mg/day) and so far no improvement in the sleep, though she did eat all her food yesterday and drank most of her bottles. In fact Sunday night she was up every hour from 8 pm until 6 am. I’m keeping her on that dose until I hear from her GI. I guess we won’t be trying dairy or soy at one year! For now, I’d just take her going back to her old sleep habits or just getting up once per night!

August 4, 2009 at 1:39 pm #63450

Anonymous
Inactive

Ps. I forgot to tell you that Ryan struggled for a little bit after his tubes. He had to adjust to all sorts of new noises and the volume after months of fluid in his years muffling everything, the sound of himself swallowing while drinking, his body had to find its new equilibrium/balance, and he had to work through the pain of the surgery and the drainage from his ears into his gutt. It took about a week for things to normalize for him.

August 4, 2009 at 2:22 pm #63452

hellbennt
Keymaster

I like to tell people to fax their drs…this way it’s in writing

August 5, 2009 at 10:22 am #63454

Anonymous
Inactive

That’s a good idea about faxing. It is so hard to get in to see the GI and our next appointment isn’t until September, so I definitely need to talk to him before then! If he doesn’t call me back today, I’ll send a fax.

Thanks for the info about the tubes. Last night was better than the previous two nights, still not great or even good, but better. Just this morning her DCP was telling me that she has noticed that Kalyn is reacting to sounds more. If another baby is next to her and crying, she makes a face and moves away. I’ve noticed that she responds to her name a lot more too. Plus, she is trying to pull up. At this time last week, she had no interest — so her balance must be better.

Argh, once again with the second guessing…tubes or reflux? For now I’m just going to assume it’s both and see how the next week or so goes. Luckily my DH is coming home tomorrow night after having been gone for two weeks for work. I tend to stress less about this stuff when he’s around mainly because there is some one that can confirm my observations….and someone else that can get up with her at night

August 5, 2009 at 4:22 pm #63455

hellbennt
Keymaster

unfortunately many of us have found we must TELL the dr what our babies need…

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

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

August 5, 2009 at 8:36 pm #63462

Anonymous
Inactive

Per our insurance, we have to get our ‘maintenance’ drugs through Tel-drug pharmacy — a mail order. They send us a three-month supply in two week increments — so we mix up a new batch every two weeks. Each batch is two bottles — one with the powder and one with the water. There’s not much information on the label that I understand, but it appears that perhaps the Prevacid powder is added to SyrSpend SF Alka. The SyrSpend contains calcium carbonate, modified food starch and sucralose. It has some verbage saying that flavorings can be added. I’ve tasted it and it is slightly sweet, but there is no flavor. We mix the powder with the water and wait half an hour before we can use it. Right now, we throw away most of the bottle at the end of two weeks because her dose is so low. It’s 3 mg/ml concentration; her script is for 1.5 ml 2xday. I increased it to 2.5 ml 2xday on Sat (on my own) and since we always throw so much away, I don’t think we need a new script. I just need her GI to agree to the increase in dose and to talk through what’s going on.

I’ve been reading through the posts on PPIs and timing and I’m so confused. If you are giving a compound, does the 30 min still apply? How about timing after a feed? Maybe I should just talk to him about switching to the solutabs? He gave us a sample a few months ago, but since we had just started her this new compound (the mail order thing started in Jan) and she took it with no fuss, he told us to stick with the compound. I’m glad I found this forum, but I think I have even more questions than I did before

August 5, 2009 at 9:11 pm #63463

hellbennt
Keymaster

compunds can be given at any time.

you might want to look into caracream/bufferbabies- its sounds a LOT like what you’re already doing, only it’s made by a company KNOWN to make the compound STABLE. more about it here:

Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

OR you could just go for the solutabs, which DO have to be given on an empty stomach, follwed by a ‘meal’ 30 minutes later

August 7, 2009 at 1:11 pm #63478

Anonymous
Inactive

Good to know that compounds can be given at any time. Finally got a call back from the GI’s office yesteryda and it turns out he is on vacation till Monday, so I’ll have to wait till then to talk to him.

Things haven’t improved much in the eating area, but sleep has gotten a little better. She is only getting up three times between when she goes down at 6 pm and gets up at 6 am. Once around 9 pm (which is normal for her — she nurses and goes right back to sleep) and then twice between 9 pm and 6 am. Sometimes she goes back down right away and sometimes I have to hold her for a while. She used to sleep straight through from 9 pm to 5-6 am a few months ago and did so since she was three months onld. I’m starting to wonder if she has gotten used to nursing at night and that’s part of why she won’t eat as much during the day. DH comes back today, so I’m going to start having him go in at night when she wakes to see if she just wants to be held or if she really needs to nurse. Of course she could be nursing to kill the burn, so to speak.
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