Infantreflux.org | Sweet syrup used for compounding?

This topic has 16 replies, 1 voice, and was last updated 18 years, 8 months ago by Anonymous.

Viewing 15 posts - 1 through 15 (of 17 total)

1 2 →

Author

Posts
February 9, 2006 at 12:41 pm #1219

Anonymous
Inactive

Hi ladies

Is anyone familiar with sweet syrup?

We just moved and I had to find a new pharmacy to get Ava’s prilosec

compounded

Lucky for us, I think, a well known compounding pharmacy is close by

Anyway, i made sure to get it w/ out flavor etc but the pharmacist said it

would be sweet anyway because they use sweet syrup

What is this?

Of course he also said the small amount of flavoring, wouldn’t effect the

potency of the drug

i thought the only ing. would be prilosec powder and sodium bi-carb??

I’m getting a 30 day supply and it is still being made at 5mg/ml because

the pharmacy needed auth to make it 2-3mg/ml but I needed it sooner

than later and of course the Dr was MIA!

Thanks, Kim

February 9, 2006 at 1:50 pm #1227

Anonymous
Inactive

Looking at our ingredients, other than losec and sodium bicarb, it also says simple syrup and stevia powder (bitter stop). They told me this was how all losec was compounded, but that no flavouring was added. I hope it’s okay this way.

February 9, 2006 at 3:01 pm #1229

Anonymous
Inactive

I’m not sure about either of those additional ingredients. I would email and ask Dr Phillips about them: [email protected]. Please post his response here if you do email him.

February 9, 2006 at 5:33 pm #1237

Anonymous
Inactive

I sent the question to Dr. Phillips and will keep you posted.

February 9, 2006 at 5:49 pm #1238

Anonymous
Inactive

Hi

Thanks everyone!

Boy, if it’s not one thing it’s another…ugh!

Kim

Zachary and Ava’s mom

February 10, 2006 at 9:40 am #1270

Anonymous
Inactive

Our protonix compound is sweet and we have never had a problem with it losing its potentcy. I have always taken it to the same pharmacy though so i don’t know if it is any different somewhere else!

February 15, 2006 at 8:33 am #1538

Anonymous
Inactive

Dr. Phillips responded to my question this morning regarding the additional ingredients. I aksed about both sweet syrup/simple syrup and Stevia powder. Since I don’t know how to paste his reply into the forum, I’ll just paraphrase.

Basically he said that the addition of either of those ingredients would cause the drug to degrade within 2-3 days. Sorry to be the bearer of bad news…

February 15, 2006 at 4:04 pm #1587

Anonymous
Inactive

WHAT????

You’ve GOT to be kidding me

This is a compounding pharmacy…how could they not know this?????

Was your ds just put on compounded prilosec…..is is working, are you

having any problems

GREAT..I decided instead of 2 weeks to get a 30day supply made

I’m going to call the pharmacist but I am sure he will tell me it’s no

problem…

I have to say my dd is eating well and last night slept through the night

the first time in 10mnths!!

No crying out etc

Thanks for posting…

Kim

zachary and Ava’s mom

February 15, 2006 at 5:15 pm #1602

Anonymous
Inactive

Kim, I swear I almost started crying when I got Dr. Phillips’ reply. How can it be that a compounding pharmacy doesn’t know how to make compounds? How is it that I have to be a pediatric gastroenterologist and a compound pharmacist- don’t people know how to do their jobs? I really don’t get it. We have been using this for many many months, and hailey has not done any better. But I don’t get it, if this would degrade the drug, then why are all these other children getting better when taking the same medication and at much lower doses? These parents swear that this compound was their saviour! Our pharmacy swears up and down that the compound is “stable” whatever the heck that means. I don’t believe it at all. I would be interested in knowing though how inneffective it becomes when the drug starts to degrade. I will keep you posted if I decide to email marci-kids again. Good luck! What do you plan on doing?

February 15, 2006 at 7:55 pm #1614

Anonymous
Inactive

Lori

I am so with you as far as being frustrated

Some of the advice I have been given from multiple GI’s totally contradict

what I’ve read on this board (and other reflux sites)

I sometimes feel like I know more about meds, dosing etc then they do!

We recently moved and I called 4 local pharmacies (2 compounding

pharmacies) in regards to Ava’s meds….all 4 pharmacies said adding

flavor did NOT compromise the meds and they all said it did not matter

what concentration the drug was compounded

I don’t understand this?

How could these pharmacies be in business if the meds they are selling

lose effectiveness in 2-3 days??

I called the pharmacy and asked more about the sweet syrup….they said

they use it as a base and it does NOT compromise the med

BUT next time I could have it made with just prilosec powder and sodium

bi-carb…..NO added flavoring/sweetners etc

For now Ava is doing well, but I am worried how she will do the rest of the

mnth and I can not pay out of pocket for a new batch in a few days or a

week

When Ava was 3 mnths old we tried pepcid only, prevacid tabs, and

Nexium and nothing worked

We switched to compounded prilosec and she finally was doing

better

I then switched her to zegerid thinking it would be the same thing and I

wouldn’t have to worry about the potency of the med etc

BUT she hated (and I mean kicked and screamed) when I tried to give her

the zegerid

Oddly enough she will guzzle down unflavored compounded prilosec

I’m even thinking about trying zegerid again and adding the 20mg pack

to maybe 1 ounce of formula in the am when she is maybe the most

willing to drink it

I don’t know

Good Luck

Stay in touch and let me know what you decide….looks like our kids are

about 1 mnth apart

Kim

Ava

4/20/05

[email protected]

February 16, 2006 at 8:34 am #1646

Anonymous
Inactive

We tried zantac and 2 forms of prevacid and the only thing that has worked is protonix in a compounded form. It is always sweetened and we never have had an issue with him really refluxing again. I would never go back to an uncompounded form b/c the time issues with them and Isaac hates them. He sucks the compound right down. We have 3 other babies at our pharmacy on the same medicine as Isaac and they all swear by it too! I say if it seems like it is working then stick with it. I had to take zegrid for a while and to me it takes horrible and i was gagging the whole time but some people love it.

February 16, 2006 at 9:19 am #1648

Anonymous
Inactive

Kim, I’m with Sarah… I would keep with it if it works. In my case though, Hailey still seems to be in pain, so I don’t know. Unfortunately, the reason I have to give the compounded meds is because we have limited options available to us in Canada, and she won’t take anything else. She won’t even take the compound. I have to put it in her milk in the bottle, and even then, sometimes she’ll refuse the bottle so no meds. Or worse, sometimes she’ll take the whole dose, and then right when she’s done she gags from the taste and pukes the whole thing and the feed right up. I hope that Ava does well on it.

February 16, 2006 at 10:21 am #1663

Anonymous
Inactive

Thanks Lori

I’m sorry Hailey is having such a hard time with her meds….maybe that

has something to do with why she isn’t doing as well as you would like

If she is missing doses, or spitting up doses…the medicine is not

consistent in her system

I wish I could tell you something that would help…I have been through

every reflux med with both of my kids..it has sure been a struggle!

I’m sure you’ve thought of, or even tried everything, but I’ll throw

somethings out there…just in case!

Since she is old enough, do you think she would take prilosec capsules?

Does she like baby food?

You could open the capsules and sprinkle the beads on pears, plums, or

applesauce?

Also, have you ever tried pepcid (similar to zantac)..it’s NOT a PPI and not

as strong

BUT it comes in a liquid form and is very concentrated so you only need a

small amount, plus it tastes REALLY good

If you could get your Gi to prescribe a very aggressive dose, and haily will

take it….at least she will have meds in her system on a consistent basis

OR maybe you could add in pepcid to overlap the compounded prilosec??

GOOD LUCK

Kim

Zachary and Ava’s mom

February 16, 2006 at 1:32 pm #1684

Anonymous
Inactive

I agree with the Pepcid comment. It’s not a PPI and not a miracle cure
but it definitely can help – and tastes much better than Zantac and you
need much less of it.

February 17, 2006 at 5:38 pm #1784

Anonymous
Inactive

Thanks for the advice, guys. Unfortunately I’ve tried every trick in the book known to man for medicating this child, and I don’t really know what else can be done. The capsules won’t work for us since Hailey won’t eat solids- I’ve tried to put them in her mouth and then wash it down with water, but she won’t even take water anymore and just gags on the white balls. She used to take her compounded meds fine, and even then it didn’t help her, so I don’t know if the missed doses are the whole issue though it can’t help. She usually does get at least one dose a day (about 15 mg), but it’s not always a volume greater than 3ml as she doesn’t take the whole thing. I looked into pepcid, but of course, we only get the pills here so it would need to be compounded. I’m thinking of seeing if a doc friend in the US will write us a script and call it in to buffalo NY, and then we can drive there to get it, though we’ll have to pay out of pocket.
Author

Posts

Viewing 15 posts - 1 through 15 (of 17 total)

1 2 →

You must be logged in to reply to this topic.