Home › Forums › Infant Reflux Information › Medicines › How to Tell Pharmacist to make Compound
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hellbennt.
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January 15, 2012 at 8:56 pm #69705
Anonymous
InactiveHello. I am new to this forum and glad to have found the support. I have twin boys-6 weeks old one of whom is suffering from sever reflux-we are seeing a GI Tuesday. I am so nervous for him and my heart is breaking because he has such a hard time eating. HE swallows about one oz and then fights to drink another. We do this every two hours and it takes an hour for him to drink 2 oz. Tonight he projectiled vomit. I am in pain for him. He is hungry and just seems to be in too much pain to eat. Any feedback from people who have gone through this and have success stories would be appreciated. Also, does the projectiling ever NOT mean pyloric stenosis?
Also, my other son, with milk/soy allergies is on Elecare. His reflux was unnoticeable until the Elecare. I am wondering if this is because it is so thin. And if there is a safe way to thicken it. Its sad because he has traded one issue for another…
I’d appreciate any support and feedback, it is good to know there are other moms going through the same thing.
January 16, 2012 at 8:57 am #69709hellbennt
Keymasterwelcome! I would TELL your dr that your son(s?) NEED a SWALLOW STUDY- tell them you’re worried about him (them?) aspirating on the thin elecare. The person who administers the swallow study is a SLP (speech/ language pathologist) who specializes in this- sounds funny bcse a baby can’t speak, ha! but anyway, once you have this test s/he can tell you what exact consistancy to use w/ a thickening agent- either simply thick or Thick It. The consistancies are called ‘Nectar’ – things like that- they have SPECIFIC names/consistancies. Don’t let your dr tell you to thicken w/ cereal! your babies already have sensitive digestive systems! You can go to the upper right-hand corner of this board & click on ‘search’ & search all forums for Simply Thick & also for Thick It, making sure to go back 6 months & LONGER…
If/when your babies get on medication PLEASE REASEARCH all you can and then you must TELL your doctors what to prescribe, etc.I have a LOT MORE to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853so glad you found us!lauraps: you might want to TELL dr to prescribe CARAFATE as a ‘quick-fix.’ This is a short-term, band-aid type solution, until you can get your child properly medicated. You CAN give carafate and other meds, you’ll just have to figure out the spacing of the meds (some meds cannot be given together, as they’ll interfere w/ one another…)okay I did a quick search and here is what I found… 3rd post down from Sheri who unfortunately isn’t on much anymore… says space it 2hrs apart.
https://www.infantreflux.org/forum/forum_posts.asp?TID=10620&KW=carafatepps:
about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993
Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638
Another Sheri explanation- intolerance/allergy post:
https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442
Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
January 16, 2012 at 7:31 pm #69714Anonymous
Inactiveprojectile vomiting does not necessarily mean pyloric stenosis, especially if he is not doing it all the time. probably most babies with reflux will projectile vomit at times.
January 17, 2012 at 7:53 am #69715hellbennt
Keymastertell us how the dr apt. went
January 18, 2012 at 9:10 am #69721Anonymous
InactiveThanks so much for the quick responses…The GI doc was pretty uneventful. She doesn’t think my son needs any testing done right now and is keeping him on the pediatrician’s RX of 2.5ml of prevacid 2xdaily. He takes it as a compound and even though there are many questions about the effectiveness of the compound and its stability, she thinks it is still the best way. Strange that she said the only people who have to take the compound 30 min prior to eating are adults and we can give it to our 8wk old sons at any time. This seems to contradict what I’ve read in other places.
GI also put him on Elecare and She also strongly suggested we thicken his formula with rice cereal for added calories and less throwing up.. I was hesitant but did it yesterday because he was eating so little. He loved it and kept wanting more!!!; unfortunately, I think it really hurt his stomach because he cried alot after the first couple of feedings. But hasn’t since.We were sill so happy to see him actually wanting a bottle instead of pushing it away! I do have concerns with rice cereal for a 8wk old though…
Not sure if anyone else thickens but I am curious as to which rice cereal people use. I tried Earth’s Best (he loved it) but it makes it sooooo thick…I tried beechnut (didn’t seem to like this as much) and have been avoiding Gerber bc of the soy…
We go back in three weeks. Other than we don’t have any of the tests I’ve heard of scheduled and no other meds…
January 18, 2012 at 8:11 pm #69726hellbennt
Keymasterthe compound DOES make it so that baby can take meds & not have to time it around meals. HOWEVER, they are notoriously made INCORRECTLY.
TELL your doctor to TELL the pharmacist EXACTLY how to make the solution. TELL your doctor to PLEASE oh PLEASE just humour you…
A Word About Pharmacy Compounded PPIsMost PPIs can be compounded extemporaneously by a pharmacy into a buffered liquid suspension, and many pediatricians prescribe and recommend such suspensions.
However, MARCI-Kids [this is the research team of the University of Missouri]does not recommend the use of these suspensions, as our research and the research of others has shown that the vast majority of such suspensions become unstable within a very short period of time (usually a week or less). This loss of stability is related to the use of flavorings and other agents in the suspension.
In addition, most pharmacies do not add enough buffer to their suspensions to adequately protect the drug from degradation by the stomach acid. This is particularly a problem if a child is receiving a very low dose.
For these reasons, MARCI-Kids recommends the use of FDA Approved Zegerid Powder for Oral Suspension over the use of pharmacy compounded suspensions, which are not FDA approved.
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As
Ask for a printout of all the ingredients and amounts put into compound. If you see any flavourings (simple syrup, sweet syrup, sweetener, bitter stop, stevia powder, oraplus, flavouring) then you know it’s not being made correctly. Then look for the amounts of bicarb and mg/ml as per the description in Natalia’s link[the information found in the previous/above posts]. I’ve yet to find a pharmacy who makes it correctly. It works for some…~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you are either unable to get a prescription for Zegerid for your child or you would like to continue using the compounded PPI that you are currently using, here are some recommendations for how you should ask that your pharmacist make the compound so that it will remain stable for longer.- Make sure that your pharmacist does not put any kind of flavoring agent in the compound.
- Make sure that the concentration is between 2 mg/mL and 4 mg/mL. This means that for every milliliter of suspension, you are giving between 2 and 4 milligrams of drug.
- Ask that your pharmacist make the compound with 16.8% sodium bicarbonate if the total volume of each dose is less than 7 mL. If the total volume of each dose is greater than 7 mL, ask that your pharmacist make the compound with at least 8.4% sodium bicarbonate. We also do not recommend that you give less than 3.5 mL of a PPI suspension at any concentration. This is because doses smaller than 3.5 mL do not provide enough buffer to adequately protect the drug from being destroyed by the acid that is present in the stomach.
It is important that the pharmacy does not add flavoring to the compound as it will almost certainly cause it to lose its stability much more quickly. It tastes pretty aweful this way, I know, but it’s better than the alternative.
Remember, Dr Phillips and the MARCI-Kids team do not recommend the use of compounded PPIs of any kind for infants or children. We do recommend the use of immediate-release Zegerid Powder for Oral Suspension. The makers of Zegerid currently hold a patent which covers any combination of a buffer (such as sodium bicarbonate) with a PPI (such as Prevacid or Prilosec), and it is a violation of this patent for pharmacy to make such a compound.
In addition to this, there are no studies that have been done to show that such compounds made by pharmacies are effective or even safe. This is another reason why we cannot and do not recommend them.
~~~~~~~~~~~~~~~~~~~SO:1) figure out PROPER DOSEhave you readPrevacid 101:
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1 yet?2) TELL doctor to TELL pharmacist. TEll don’t ask.
FAX FAX FAX the dr
stick to the FACTS (no emotions and ramblings)
state current meds, doses & symptoms
make request- flat out- short & sweet
provide pharmacist name & contact info
follow up by calling office to tell them fax was sent
call again later to discuss requests made in fax, ie:
is RX w/ instructions called in yet?
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
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