Infantreflux.org | Am I going Crazy?? PPI Questions!!!

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April 3, 2006 at 3:50 pm #5287

Anonymous
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Hi

my name is Kim and I am new hear…..

I Have a 5 ½ month old son (Elijah) and the first week we were home with him I was practically crying, saying what is wrong with this baby. He was never happy….not happy sleeping, not happy eating , not happy after eating….we had almost no happy moments. At his one month apt. the pedi said she thought he might have acid reflux (he spit up 8 times during the 45 minute apt.) and talked to me about medicine….I was to nervous to put him on the meds so we decided to wait and see what happened over the next month…..things got worse!!!

So, at his two month apt. she started him on zantac….after two weeks of it not helping I call to let her know it was not helping and she increased the dose. This then seemed to help a little bit for about two weeks and then It just did not seem to help at all. By his 4 month apt. I was practically begging her to do something to help us, as Eli was so uncomfortable he could not nap or sleep for more then 20 minutes at a time. I was exhausted and walking around with a constantly cranky 4 month old and a very active 2 year old.

So, at 4 months his pedi changed us to prilosec and referred us to a pedi GI specialist. Well, we had to wait five weeks to get the apt. with the pedi GI specialist!!!! So, In the mean time, We start giving him the prilosec compound. At first it did nothing and then after 10 to 14 days I started to see a change…..he was starting to nap…..and was much more pleasant to be around. At around day 19 of being on the prilosc he was sleeping better at night. (I went from getting up with him around 10 time a night to only 2 or three times….heck!!! my husband even started sleep upstairs with us again) Things were not great, but they were surely improving. And then after the third week of being on the medicine he started giving me a hard time about taking it and it seemed to stop working…

So I went to the pharmacy that compounded it and asked them if something could have happed to the medicine. She said maybe and compounded a new 30 day batch in the CaraCream. That did the trick…..we were back on track again….but Eli was still giving me a very hard time about taking it because it tastes so bad…..(that caracream compound really does taste bad!!!)

Sorry this is so long…….

So, when we saw the Pedi Gi Specialist last Thursday….he said his dose was not high enough and wanted to more then double it. I told him I was kinda having a hard time getting the medicine into him and I was concerned with the added volume, it would be more difficult….so he suggesting switching to prevacid Solutab. What a great Idea…I gave him the first tab that day and it just melted in his mouth with not problem….and I thought to myself this is great!!!!

One problem….the prevacid does not seem to be working……he has be taking it now for 5 days and we are back to square one. He is flipping out while nursing, cranky, waking up all night long.

I feel like I am going crazy!!! Does prevacid just not work for some babies??? Is there a long adjustment period and I should stick with it?? Should I switch back to that Compound and just try to get as much into him as I can?? I just don’t now what to do.

Anyone that has any advice for me I would really be open to hearing it.

Thanks

April 3, 2006 at 8:49 pm #5306
Anonymous
Inactive
Kim,

First let me start by saying I have NO IDEA what the answer to your question is because I am experiencing the EXACT same problem.

To summarize our story (my son is 4 1/2 months): first, Zantac that didn’t work at all. Then we went to the compounded prilosec which did help things at first, but I am confident even without the flavoring it was only effective for at most 2 weeks. Plus, Henry hates taking the prilosec. He screams; we battle; we have to regive it because he is spitting it out. SOOOOO we switched to the prevacid solutabs on Friday. He doesn’t mind taking it all, BUT it is NOT working. Of course I believe the dose is too low just like it was on prilosec but who really wants to give even more medicine to a child who is screaming.

I emailed Dr. Phillips at Marci-Kids today and asked if there was THAT much of a difference between the prilosec and the prevacid if they were both a PPI. He said, “Zantac is not terribly effective as you have discovered. There really is no difference in PPIs except for two issues.
1. The appropriate dose must be used
2. The buffered (sodium bicarbonate usually) version is more effective than the non-buffered version (the non-buffered version is Prevacid, Prilosec, Nexium, Protonix, Aciphex). You should only use Zegerid as the buffered version as it is FDA approved – what your pharmacists made up is not FDA approved so who knows what you actually got. “
I FEEL your frustration!

Ruby

Henry, 4-months old, reflux and MSPI

Breastfeeding on dairy-free soy-free diet

3ml of 2mg/ml liquid Prilosec 2x a day, now switching to 7.5 mg prevacid 1x a day
April 3, 2006 at 9:16 pm #5308

Anonymous
Inactive

Kim, for the solutabs to be fully effective, they have to be given on an empty stomach, with a full feeding to follow as close to the 30 minutes after that is possible. Otherwise the drug will not work as well. Good luck.

April 3, 2006 at 9:19 pm #5309

hellbennt
Keymaster

Kim,

I hear you, I really do!!! My first guess is that the compound you had was probably only good for 2wks…

caracream did wonders for my son, so I can rave about it…you are LUCKY to have gotten it, as it is not readily available at all anymore…HOWEVER, it is NOT good for 30 days (don’t quote me)…even caracream has its limitations, LOL!!!

So, what I would do is:

1) get back to the caracream- since you’ve used it already, you ‘qualify’ to buy it directly from the company- contact marci-kids (link below) and then you can just make it yourself- that’s what we did

2) have the pharmacist contact dr. philips (mentioned above- he ‘created’ it! and he ‘created’ zegerid, also mentioned above) as to how to properly USE it and

3) then make sure your baby is on a GOOD dose for his weight (dr philips will help with this, too- there’s a chart at http://www.marci-kids.com)

4) in the meantime, break out the zantac you have

5) figure out a GOOD dose for baby’s weight (see my welcome/intro for dosing info: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1)

6) give it at LEAST 2 hours seperate from the caracream (caracream can be used with either prilosec or prevacid. my son started on prilosec and went to prevacid, both w/ caracream, but he did better for some reason w/ the prevacid) if not more…

WELCOME

~laura

April 3, 2006 at 9:34 pm #5316

Anonymous
Inactive

Hi Ruby,

It is so nice to know someone else is going through the same thing. I feel like I am losing my mind sometimes. After reading through the posts It seams that so many people are doing great on the prevacid so I don’t know why it is not working for Eli…….I got up with him no less then 8 times last night!!!!

My Husband thinks we should try it for two weeks…..but if Dr. Phillips at Marci-Kids says there is not difference between the two….why is the prevacid not working as well as the prilosec?? I know you don’t know either.

Currently, he is on 7.Mg prevacid 2x day.

I guess if I switch back to prilosec I better ask the Dr. to write out a scrip for the zegerid.

Thanks for share your experience Ruby!!!

KIM

April 3, 2006 at 9:58 pm #5317

hellbennt
Keymaster

kim,

if you go back to prilosec, you can use caracream (or zegeried) & you can use caracream with the prevacid…so many variables…it can be so hard!

~laura

as to why one works better than another? I think it’s like what works for you- like advil, motrin, tylenol- they’re all similar yet some swear by one over the other…they seem all the same to me, but I know people who say tylenol does nothing for them, they need advil or motrin or whichever…

April 4, 2006 at 12:05 pm #5363

Anonymous
Inactive

Hi Laura,

There is a lot of great information you have compiled!!!! Thank You, I am learning so much!!!

So I think the problem with these Solutabs is that my son is not eating solids (therefor no meals) and because things are out of control right now, he is not on a very good schedule anymore ethier…so to say he is getting the prevacid 2-3 hours after one nursing and 30 minutes before the next does not seem doable??? He is one of those comfort feeders (no weight gain problem here!!! Even with everything he spits up)……At 5 1/2 months he is weighting in at 20 lbs and is 29 inches long!!!!

I think you are right we need to go back to the prilosec…..I just dread trying to get him to take it because he hates the taste.

Would you (Or anyone else) know which tastes better the Caracream or the zegeried?? or visa versa.

If I am going to get the caracream myself from the company what form of prilosec do I ask the DR. For??? or if I am going ask for the Zegeried is there anything special I should have him write on the script to the pharmacist?

Thanks for all your help!!!

April 4, 2006 at 12:21 pm #5365

Anonymous
Inactive

You might want to check with your insurance company on whether they cover Zegerid. I checked with mine yesterday and they said they would not cover it even with a doctor’s note.

Ruby

Henry, 4-months old, reflux and MSPI

Breastfeeding on dairy-free soy-free diet

3ml of 2mg/ml liquid Prilosec 2x a day, now switching to 7.5 mg prevacid 1x a day

April 4, 2006 at 5:57 pm #5405

hellbennt
Keymaster

for caracream, you get capsules- but contact http://www.marci-kids.com lookfor a ph # and call them…

I’ve never tasted zegerid, but I hear it’s fruity

I tasted caracream and it tasted like white chocolate/yogurt covered pretzles to me– jonah really liked it…

April 4, 2006 at 6:03 pm #5407

Anonymous
Inactive

I manage the lab here at the University of Missouri where CaraCream is made. If you have any questions, feel free to email me (andrewsjj@health.missouri.edu) or call me: (573) 884-0672.

CaraCream tastes a lot better with Prevacid mixed in it than with Prilosec, since the drug in Prilosec is very very bitter.

April 5, 2006 at 3:15 pm #5436

Anonymous
Inactive

Hi All,

Ruby, Thanks for the heads up on the insurance not covering the zegerid……I called my insurance this morning and they said they will cover it but it requires prior authorization.

I think at this point I either need to try the caracream (if the pharmacy still has some) with prevacid instead of prilosec….as it sounds like the prevacid tastes better then the prilosec. Or…we need to give the Zegerid a try.

I have a call into the Dr. now to see what we can agree on….Hum!!

After speaking with Joel..(Thanks Joel!!!)…I also found out that that the pharmacy did not mix the caracream in the right concentration so he was getting the right amount of Buffer with every dose. So Once I get things worked out with the Dr. I need to go to the Pharmacy and show them the paperwork with the mixing instruction so they can see what they did wrong.

This is like a three ring circus!!! All of you here on this board seem to know way more then the Dr.’s and pharmacists I have been dealing with. And, I can’t believe how much I have learned and am learning in just a few days.

I will let you all know what we end up going with and how it works out.

Thanks
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