Concerned Father

[Anonymous]

A quick addition:

Should I be concerned if despite starting this new strategy, we have just been having a terrible episode that is going on hour 2?

I am assuming it takes a while for the Prevacid to kick in, or I should say, I praying it does.

[Anonymous]

man where do i start lol….

first, the prevacid has to be about 4 hours apart from a h2 blocker.

second, prevacid should be given 2 or 3 times per day as infants metabolize PPI’s very rapidly.

thrid, your dose is way too low. you are currently giving 6 mg per day. my son was started on 24 mg at about 3 months and 11 lbs.

fourth, i can almost garantee your pharamcy is making the compound incorrectly.

i know this is a lot to swallow.

i would work on upping the PPI dose to marci-kids. com standards. as for the compoound-you have to specifically ask for it to be made with 16.8 % sodium bicarb, absolutely no flavorings of any kind, because the solution will become unstable. it also has to be made every 14 days, dont allow them to make it monthly-it will loose stability.,

you may be better off ordering caracream from marci-kids. thats what we do. we make our own stable compound with it using prevacid capsules. and that way you can be sure you are getting a compound that is made correctly.

nataliachick72007-4-12 22:4:5

[hellbennt]

this is stickied in the Medicines Forum

treating GERD with PPIs: https://www.infantreflux.org/forum/forum_posts.asp?TID=6026&a mp;PN=1

[Anonymous]

oh and here is the sticky for “pharmacy compounded PPI”s”

Proton Pump Inhibitors – or PPIs – are probably the safest and most effective drugs that are currently available for treating GERD in infants. Usually pediatricians and pediatric gastroenterologists will prescribe PPIs such as Prevacid or Prilosec in the form of a compounded liquid suspension made by a pharmacy. This form is advantageous because it is generally easier to administer to infants, who cannot easily swallow pills, capsules or granular forms of medicine.

However, for a number of reasons, Dr Phillips and the MARCI-Kids team at the University of Missouri do not generally recommend the use of such compounds. We have done very extensive research on the stability of these compounds in an effort to find a liquid form of PPI that would keep its stability for a greater length of time. In the course of our research, we have found that an overwhelming majority of the PPI compounds made by pharmacies lose their stability within 5 to 7 days.

The main reason that these compounds lose stability is that a flavoring is added to them. There are very few flavoring agents that can be added to a PPI compound that will not cause a loss in stability over time. For this reason, if you are getting a PPI compounded at your pharmacy, we strongly recommend that you ask your pharmacist not to add any sort of flavoring agent to the mixture.

In response to this problem of stability, Dr Phillips developed a flavored, immediate-release form of omeprazole (the same drug that is in Prilosec), which forms a true liquid suspension that is very easy to mix and administer to infants, and which will remain stable in refrigeration for up to 21 days after it is mixed. This drug is called Zegerid, and it now sold by Santarus Inc. For more information on dosing and mixing Zegerid for infants, visit http://www.marci-kids.com.

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.

1. Make sure that your pharmacist does not put any kind of flavoring agent in the compound.

2. 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.

3. 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.

If you have any questions, please contact the MARCI-Kids team: info@marci-kids.com.

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&a mp;a mp;KW=pharmacy+compounded+PPI

nataliachick72007-4-12 22:14:5

[Anonymous]

Wonderful

We did get Natali’s 1 and 4 correct as I read about the 4 hour time gap between the PPI and H2 blocker in addition to having the pharmacy add no flavor and make only a 2 week supply. But it sounds like our dose is far below what most on here advise.

Not sure where to go from here? Should I atleast give it a shot to see if this works?

[Anonymous]

Hang in there, this will all be a second language to you before you know it! I have to say, it’s a pretty good feeling to talk to your dr/pharmacist and see the look of amazement on thier face…

I’d stick with the dose just to get started, it should provide SOME relief, but I’d start putting a bug in the GI’s ear about upping it after about two weeks if you don’t think he is feeling that great. It’s a slow process, but you will get there!! I’m not as familiar with the compounded version of prevacid, but it seems all drs start with the lowest possible dose and 99% of the time the baby needs more…

Tina

[Anonymous]

not to burst your bubble, but DR Phillips told me that if a PPI dose is too low, it actually wont provide any relief. i guess that is why he thinks its so crucial to get a proper dose.

[Anonymous]

I appreciate all the feedback, the honesty is needed, but very discouraging. While we are waiting to see if this works, I want to proceed with getting a 2nd opinion from someone who is familiar with the Marci-Kids studies. I got the impression from the GI we saw yesterday that he would definitely NOT be receptive to my opinion so rather than try to beat it to death, I want to make an appointment with someone for a second opinion, in the event this medication strategy does not work. If it does, I can always cancel.

A few pages back, I got some recommendations for FL doctors, (we’re around the Tampa area) however can someone let me know one around this state who will know what I am talking about when I discuss these studies, the increased dosing etc. Are these doc’s recommended familiar with this?

Thank you very much.

[Anonymous]

Yes, it is very discouraging. I remember the pure anquish I felt when my son was suffering and I knew what he needed from what I learned here but he wasn’t getting it. It took me weeks to convince his doctor to increase his Prevacid to the marci-kids dose, and those weeks were pure torture for me and my poor son. Fortunatley I did succeed in convincing her and things did turn around once he was on the high dose that marci-kids reccommends.

Have you considered trying your family doctor? Many of us have had better luck getting the high PPI doses from our family docs.

I’m not sure what part of Florida Laura (hellbent) is from, but perhaps you can PM her and ask her about doctors in your area.

Good luck. I truly feel your pain as I have been there too. I sure hope you find relief for your little guy soon.

[hellbennt]

doctors are given to you on page 2 of this thread

[Anonymous]

So those docs are familiar with Dr. Phillips’ studies and the Marci-Kids dosage?

[hellbennt]

you can contact each office and ask?

I know that dr. loret de mola gave jonah what was considered to be a ‘high’ dose 4 years ago (3 to 3.5 mgs/kilo of prevacid- I’m sure marci-kids would recommend higher but I always say that I think it’s ‘ok’ if a dr. starts there, bcse Jonah had severe GERD w/ Sandifer symptoms that would go away once he was properly medicated- we knew his does needed to be ncreased/he was outfrowing hte dose when the symptoms returned). he actually attended the University of Missouri, where marci-kids is based (coincidently). he was open to us using caracream (the predescessor to zegerid & you can still get it from marci-kids) and he always increased the PPI when I requested- I just faxed him a short & to the point note stating the dose that JOnah was on, how his symptoms had improved & but____ and what I thought the increase should be…

he TAKES TIME to listen to you as parents. no rush. he is an AMAZING person and doctor. if you go, be prepared to wait (because he does take his time w/ everyone) – we learned to make the first appointment in the a.m.

[Anonymous]

and bring your marci-kids info with you…

[Anonymous]

Well hello all. It has been a long time since I popped on here to give an update so I thought I would combine the latest information with yet another question. In summary, it was a struggle but my wife and I had to strong arm our GI into upping our little guys Prevacid to 2.5ML twice per day. You would have thought we were asking him for a morphine drip; man oh man. Anyway, shortly after this increased dosage, April 25th, Joshua was like another baby. The sandifer-syndrome symptoms disappeared and not only could he lie on his back without discomfort but he started sleeping, playing and in place of the screaming threw in a few great laughs.

My wife and I did some traveling this past week and since our return home, Saturday, the Silent Reflux symptoms are starting to once again reappear. He is starting to have small random bouts of discomfort, in addition to the tongue sucking- swallowing activity that always foreshadowed the coming opera.

Here are my thoughts, and I truly look forward to feedback.

Clearly the increased Prevacid dosage worked for 3 weeks, AMEN!

1.) In the process of all our travel did our compound break down?
2.) As he continues to grow, has he outgrown the dosage?
3.) Is there something else going on here?

This room has been such a life saver in the past so not only does my wife and I thank you for previous comments, but we thank you in advance for the comments that are to come.

[Anonymous]

2.5 ml twice is still very low assuming your compound is somewhere between 2-4 mg/ml.

have you checked dosing at marci-kids.com?

and yes, there are often times where the doses need increasing as the baby grows. higher weight=more med.

and are you having the compound made correctly, every 2 weeks, and keeping it refrigerated? here is how to compound it correctly.

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&a mp;KW=pharmacy+compounded

[Author]

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