Need Prilosec Help

[Anonymous]

My dd (2 1/2 months and 12 pounds) was prescribed prilosec at 2mg/ml and she is on 4ml 2x per day. She was previously on Zantac but that became ineffective as revealed by her symptoms reappearing. I had the pharmacy flavor it. That was before I read all the posts saying that it was not stable that way. I called the pharmacy and they said that they will not flavor it and that they mix it at 8.4% sodium bicarbonate. I said that I had read that the proper buffer was 16.8%. The pharmacy said that he had never heard of a concentration that strong and that he was getting is info from something called the compounding association. Please help with any input you have for me. What do I do? How do I get the correct buffer?

[Anonymous]

Could you print out the stuff from marci-kids and give it to the pharmacist. Alternatively (or also) email marci-kids and see if they will ring the pharmacist. Step three…go to another pharmacy and see if they will do it?

[hellbennt]

where’s lori when you need her?

check out the link in prevacid 101 about how to ask for the compound

I *think* that you can get the lesser concentration but if you do then the dose has to be a certain amount (ml) per dose in order to be effective…

[Anonymous]

Here I am, Laura! LOL.

Ugh! I hated having to deal with the compounding pharmacy. They told us the same thing. According to marci-kids research on this, unless each dose is going to be 7ml or more (which it rarely is at the doses we’re giving), then it needs to be made with 16.8 percent sodium bicarbonate. (If you are giving 7ml or more each time then you can do 8.4 percent.) The concentration should be somewhere between 2-4mg/ml so that each dose has at least 3.5ml to ensure enough buffer.

Your dose is pretty low, so unless you have it made with the 16.8 percent sodium bicarb, there won’t be enough per dose to protect the drug.

Our compounding pharmacist told us that they followed the compounding association and did use 16.8 percent sodium bicarbonate, but they didn’t believe any of the other rules about flavourings etc.

I would suggest writing all the instructions out on how you want it prepared and ask them to humor you and prepare it this way. If they won’t do it, then I’d either see if marci-kids would contact them, or better yet, just go to another pharmacy. When you do get it made, ask for a printout of all the ingredients used in the compound. We did this, and found out that additional flavouring agents were being added to our supposedly unstable suspension. In the end, it almost drove me batty trying to get the compound made properly.

Can you use zegerid? Then you wouldn’t have to worry about the stability.

s&h’s mum2007-3-18 15:53:23

[Anonymous]

Just to sympathize. We had the same problem with our compounded Prevacid. The pharmacist thought I was looney to suggest the 16.8% bicarb., and said that he wouldn’t do it. I did some looking around, but we actually ended up going with the Zegerid instead. You mix it yourself, don’t have to time it around meals, and it is stable for I think up to 3 weeks if refrigerated.

[Anonymous]

Thank you everyone who responded. We had a horrible weekend with Katie. You could hear the acid come up, she would swallow it again and then scream. She did not sleep much at all for naps. I am glad that my dh was home to witness this as he beleives she has reflux but thinks that I over exagerate the symptoms sometimes.

Anyway….

I took her into the doctor this morning. It has been 12 days that she has been on the Prilosec and after this weekend, I knew it was not working. I tried giving him the stuff from Marci-kids but he poo pood it and stated that he got his info from Childrens Hospital here in St.Paul.

He switched her to Prevacid – compounded. I started my rampage of calling pharmacies to see who was willing to mix it at 16.8 sodium bicarbonate. Finally – I had to contact a compounding pharmacy an hour away. They actually knew what I was talking about. What a relief. The only question I have is that he said that he tests the ph level and makes sure it is over 8.5 ph. What does this mean. He was also willing to make it 2 weeks at a time. I go to pick it up tomorrow morning. Meanwhile we are still on the Zantac until everthing kicks in.

Why is it that we have to be so much more informed that the pharmacies? Isn’t that their job to be up to date on what works and what doesn’t? This is so frustrating. Pray that we find relief soon.

Tracy

[Anonymous]

Oh yeah – the prescription is for 5 mg 3x per day total of 15mg per day. Do you think this will be enough?

[hellbennt]

hmm..maybe w/ the refilling it every 2 weeks and that it’s a liquid you might be able to give more w/o drawing attention…not that I am advocating going against your doctor…but after 2 wks at the 15mgs a day if you don’t seee any improvement you might try a bit higher and if it helps you can then try & ‘reason’ w/ your doctor- but try the 15mgs first-

also: you might want to try splitting the 15mgs ‘unevenly’ w/ a higher dose given at the ‘worse’ time- for us we gave a bit of a higher dose in the evenings

ps: for my ‘lowest’ calculations I get 16.5 mgs a day so your doctor isn’t too far off – I’d feel ‘safe’ going up to this if the 15 didn’t work- but that’s just me…way back in my day (close to 4 yrs ago) 3mgs or 3.5mgs per kilo was considered a high dose…

[Anonymous]

15 mgs sounds really low…have you showed the doc the marci-kids.com dosing for your childs weight/age?

a few people have had to “accidentally” increase themeselves after not seeing improvemtents with the doses give by their doctors.

[Anonymous]

I was already planning on accidently increasing a bit. I think I will go on marci to see what they recommend. I will start at what the doctor said first but without hesitation go up if needed. Now I know that it takes 2 weeks for the full effect, but I should see SOME improvement within a few days. Right?

[hellbennt]

yes, some. but continue with the zantac! it should be spaced 2-5hrs seperate from the PPI

[Anonymous]

It is MADDENING that the compounding pharmacies don’t know the info about preparing these compounds. I spoke to Dr. Phillips about it, and he said that they’re still trying to get the results out which can take many years.

The pharmacist is talking about the pH of the medication, which for some reason is the indicator that they use to say whether or not it is stable or not. But that’s only one part of the whole picture.

I would ask the pharmacist for a printout of all the ingredients in the compound. Even when we thought that it was being made properly, it wasn’t, b/c they were adding all kinds of other ingredients.

I hope this works for you. Be sure to shake it REALLY well so that all the sediment comes off the bottom of the bottle. Our pharmacy used a brown bottle so I didn’t realize that most of the buffer was sitting on the bottom of the container!

Good luck.

BTW, You can ask Dr. Phillips to call your doctor if you want, as he has done this for some people. But he recommends zegerid- not sure if you wanted to go that route.

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