What is this??

[Anonymous]

Hi all, I’m new here but have surfed it some when needed. I have an almost 9 month old son who was diagnosed with reflux and MFPI at about a month old. After several different meds, we found success with Prilosec. When we finally got into a pedi GI doc in the city/state we lived in at the time, she also put him on Mylanta and Reglan. Well, let’s just say that he is no longer on the Reglan and I didn’t see any change with the Mylanta so he is not on it either. He doesn’t spit up or throw up, doesn’t have hiccups, etc. etc….BUT he pulls away from the bottle incessantly. (We finally had to go to Elecare at 4 1/2 months as bfing and elimination diets were not succesful.) He’s been doing it for several months but he’s had ear infections, has been teething, on antibiotics for the ear infections, etc. and this is the first time in months he doesn’t have any of those issues. I’ve had him on probiotics for a few weeks as sometimes not only does he pull away, he thrashes around with his legs and sometimes will pass gas. But yesterday, I counted it, he pulled away from the bottle every 15-20 seconds. I have a new pediatrician as we just moved back to our home state of Texas and I don’t know how familiar she really is with all of this. I can’t get into the pedi GI here until December!!

What do you all think? Thank you in advance for any help you can give. I don’t know what to do.

Julie

[Anonymous]

Julie what dose is he on? And what form of Prilosec are you giving? If it’s compounded, there are often problems with compounds being unstable and not being effective. Also, it could be that his dose isn’t high enough. Have you look at http://www.marci-kids.com There is a lot of good info on dosing PPIs and making sure that they are giving in the proper form, dose, etc.

[Anonymous]

Naomi,

Thank you so much for replying. Yes, he is on the compounded Prilosec so I think I’m going to ask my pedi on Tuesday to switch him.

Where is the best information to find how to give the regular Prilosec to him? I have looked at marci kids but not in a while so I will check there again and also tell my new pedi about it. Thank you so much!!

Julie

[Anonymous]

What about giving him a cup-do you think he would pull away from that?

[Anonymous]

You should see him when I just try to give him water….he gets so excited and he just bites the spout. He’s more excited to just hold the cup and play with it and he pays no attention to drinking out of it. LOL But I will keep that in mind as sooner or later the novelty of the cup will wear off (I hope!).

I’ve been reading some of the posts about Prilosec dosing and I’m convinced that his dose isn’t high enough AND I now know that I should have asked the pharmacy (a new one since we just moved back to Texas from Omaha) to compound it with a chocolate rather than use the grape flavoring that they did. I’m going to have to try a different pharmacy anyway. They don’t file compounded medications with insurance and require that you pay out of pocket for them and file it yourself. Walgreen’s back in Omaha didn’t have an issue with filing it but then again, they compounded it. The Walgreens here in Round Rock wouldn’t even compound it. Ahhhh!!! In addition, I will have to try to convince my new pedi to increase the dosage. She just finished her residency last year so I have a feeling she is going to be reluctant to do it, which means I will likely be looking for a new pedi. Sigh…..

Keep the suggestions coming!!

Julie

[Anonymous]

Hi –

Just an FYI, my 13 month old was on probiotics, and he was having terrible gas!! After I cut him down to half a dose, the gas went away.

[Anonymous]

Your lo might have lactose intolerance….does your probiotic contain any dairy? Levi is dairy intolerant so the probiotic I give him doesn’t contain any diary. BUT my older son and I are both lactose intolerant and that is usually the biggest symptom….lots of gas. 🙂

Julie

[Anonymous]

Julie, check out the thread stickied under the medications forum called “about pharmacy compounded PPIs”. That will tell you exactly how to get it compounded. I’m not sure where you read about compounding with chocolate, but a properly compounded PPI is made without ANY flavouring agents whatsoever- no flavour, no sweeteners, sugars or syrups. It’s pretty much the medication, sodium bicarbonate, and water. The thread I’m talking about describes how it needs to be made- 16.8 percent sodium bicarbonate, between 2-4mg/ml such that each dose given is at least 3.5ml.

We were on compounded prilosec for a long time b/c it was the only PPI available in Canada at the time. This is just our experience, but even when the dose was fine, it never worked b/c it wasn’t being made correctly. My daughter developed a serious feeding aversion and bottle/breast aversion which was very difficult to resolve.

I’m not trying to scare you, I just noticed that the behaviours you’re describing with your son- pulling off when feeding- is a sign of reflux pain, and I’d hate for you to have to go through what we did.

As for the PPI, you have a few options: First try to get the doc to up your dose if he will. Then you can try to get your pharmacy to prepare the compound correctly, but if you do, ask for a printout of all the ingredients so you know what’s in there. Also, beware that prilosec compounded without flavouring tastes terrible… very bitter. Also, with the compound you need to keep it in the fridge and only get it in two week doses. Alternately, you can try zegerid which is a stable prilosec suspension, that hopefully someone else can comment on as we don’t get it in Canada. Another option is to switch to the prevacid solutabs, which are easy to give, only thing is that you need to time them- 30 minutes before a meal on an empty stomach, which can be hard to do with a baby.

Good luck.

[Anonymous]

I could never get the compounded Prevacid to work right for us, but as soon as we got on Prevacid solutabs and got tubes in the ears, things got better. I would suggest getting away from any compound! It just doesn’t seem like pharmacies do it right no matter where you go! (I live in Lincoln) And if you try to correct them, they become offended– in my experience and then it’s like they don’t even want to serve you!

[Anonymous]

It’s funny (and completely unrelated) but our compounding pharmacy was said to be the best in the whole city (and we live in a big city). It was an upscale pharmacy that was done up to look like an apothecary. The pharmacists all wore lab coats, and they had these big consultation rooms to talk to you. Really cool, actually, and ALL they did was compounding. They didn’t carry anything else. This was there specialty. And they had no clue how to do the compound as per these directions. They added flavourings and other agents that marci-kids told us were shown to degrade the med. They also prepared one month doses. One time they even prepared Hailey’s meds at 20mg/ml so we only had to give 0.5ml twice a day!!!! Anyhow, they got really offended and swore up and down that they were doing it right. Eventually I gave up and stopped with the compound. Last year, that same pharmacy was closed down for making/selling fake viagara!

[Anonymous]

Lori,

I just found those posts yesterday and they were very helpful. In fact, I printed them out and am taking them with me to the pedi today. I’m not sure what to do. Other than the pulling away, he seems to do really well on the Prilosec (until the new pharmacy) so I’m hoping a higher dosage might work. We tried the Zegerid (along with Prevacid, Prevacid solutabs ((couldn’t tolerate the solutabs due to the dairy)) and Zantac when he was younger and it didn’t work for him.

Well, I just called the pharmacy both here and in Omaha (where it seemed to work much better) and found out that the Omaha pharmacy did not use any flavorings and they only used 8.4% sodium bicarb and the prilosec. The pharmacy here added grape flavoring. The pharmacy here said that doing a 16% sodium bicarb (which is what is recommended in the post about compounding) is impossible b/c it would never dissolve. She said that the highest % available that will dissolve is 9%. So, I think if I can get a higher dosage and get them to mix it without any flavoring, I may be able to get it under control. Whew!!!

Now, if I can just get the pedi to increase his dose!!

Thanks to all for your help!!!

Julie

[Anonymous]

Good luck. Our pharmacy used 16.8 percent sodium bicarbonate even before I asked them to do it. It didn’t dissolve terribly well, it’s true. A lot of the bicarb was often left at the bottom of the bottle as a sediment and you had to shake it up REALLY well to get it through the compound. But after shaking, it was temporarily dissolved and I gave it that way. A lot of shaking each time. How many mls are you giving in each dose? That could also be part of the problem. Anyhow, I hope that it works better for you without the flavouring. Good luck.

[Anonymous]

Julie, my daughter’s main reflux symptom was the pulling away from the breast during feeds. It took me a LONG time to figure out it was reflux because she didn’t spit up much and she really didn’t fuss that much either, other than during feeds. She eventually would nurse for such a short time that she stopped gaining weight. She would just want to suck her thumb instead of eat! It got scary for a while… but once her dose was high enough, she was more comfortable and began to eat better.

[Anonymous]

Lori,

Well, I hope the 9% bicarb works. I called several pharmacies here and they all use the 9%. One pharmacy even told me they don’t use the bicarb at all, just flavoring!!! Needless to say I won’t be going to them. LOL

The pedi didn’t hesitate to increase his dose and to set the prescription for 3 weeks. So, he is now going to be on 20 mg a day divided into two 10 mg doses, given in 5 ml each. If it’s not effective after a week or 10 days then I may start calling more pharmacies. I just don’t know what else to do since the Zegerid didn’t work for him or any of the others for that matter. This seems to be the best when it’s compounded just strictly with the bicarb.

Naomi, thank you for sharing your story with me. This stuff is so very frustrating isn’t it? I’m so glad you got it figured out. 🙂

Julie

[Anonymous]

It should be okay. I heard without flavouring omeprazole can actually go longer in the fridge, but we always did it in two week doses just to be safe! Glad to hear that the doc upped his dose! Hope it helps.

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