Yes, the twins are now 3 months old, but for today I'm just not feeling a celebratory post. I'll aim for their 3 month post tomorrow, complete with a cute picture, because hey- you can still be miserable and cute at the same time!
We got into our pediatrician today (Although I did get a call from her nurse saying that an appointment was not needed since the suggestion was to keep trying the Nutramigen formula for another week. I argued that I thought it necessary we meet with pedi, so we kept the appointment.). The short version is that she agreed that Sam and Anna have been worse on the Nutramigen (Now refusing just about every bottle from the get-go. We can only get them to eat a solid amount of 3-4 oz when they are sleepy and ready for a nap). And we don't have to suffer through 2 weeks of "trying" the Nutramigen. However, her suggestion was to switch to Alimentum- basically the same thing (a hypoallergenic formula), different brand (Similac instead of Enfamil). She would not agree to increasing the prevacid amount, reinterating that she's never perscribed more than 7.5 mg daily. I even told her I knew several people who were on more and showed her printed out research I had done, and no go. I STILL don't think Sam and Anna have a milk/soy protein intolerance, which would make the Alimentum pointless. Our pedi wants us to do that because its the protocol the GI specialist wants before a referral is made.
Thanks to the Reflux Rebels group on babycenter.com, I decided to take matters into our own hands. Let's face it- I doubt the Alimentum is going to be the answer, since it is so obvious to me that they need more prevacid daily. We are going to give them OTC prevacid for two doses a day, and the Rx prevacid for one dose a day, for a total of 22.5 mg a day, as recommended from the Midwest Acid Reflux Children's Institute for their age/weight.
Our pedi did say their recent weight gain is borderline, but they are still doing okay because they gained well before this reflux flare up. She mentioned the possibility of admitting them to the hospital if we wanted to for extra help with them, since she at least understands the magnitude of trying to bottle feed two infants that are refusing the bottle by myself for 10 hours a day. We are obviously not going to do that, because having two babies in the hospital is not going to be less stressful for me than going at it alone during the day, among other reasons. My mom is coming out this weekend to help us, since my husband has a lot on his plate at work right now and needs to g into work this weekend. That will help.
We did get a referral to a GI specialist and have a consult appointment in two weeks. They said they would not make any changes before doing a PH probe on both Sam and Anna though... which they cannot get us in to until the end of July. Ridiculous. Although, again, I don't think there is something else wrong here, I just think my children need more medication!
So please cross your fingers that our plan to take matters into our own hands is the right path for us to take. I feel like our history of me getting prescribed Clomid for our difficulties TTC for months without any appropriate testing for what ended up to be MFI (making Clomid for me pointless) maybe happened for a reason... so that I would see beyond what our pedi is suggesting we do and be proactive in doing what's best for our children.
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*After reading the 7 comments so far, I thought I had typed this clearly enough, but I'll explain a little more thoroughly: I wrote that we would give the 22.5 mg/daily - meaning spread out in 3 doses of 7.5 mg each. The site I linked to explained that babies metabolize 2-3 times faster than adults, so by giving 7.5 mg in one dose a day, it is doing next to nothing for most of the day. For those of you that give 15 mg- do you give it in one or two doses? If you give it in 2 doses, when during the day? I would be willing to start at 15 mg first (two doses a day at 7.5 mg each) and see how that goes before adding in a third daily dose, but I'm not sure how I'd spread it out. Please comment asap so I can attempt this today!
From what I read, you shouldn't give a dose after 6 pm, because acid production is very low at night (due to our genetic coding) and it would pointless to give it then. This also explains why my babies sleep well at night, but so badly during the day. This is why we switched the Rx prevacid to am, because we had been giving it before their bedtime bottle. So far, their bottle after that this morning was relatively good- both drinking 3 oz before refusing. They drank 2 more oz while they were sleepy before their nap. (It bothers me that we are no longer following the Wake/Eat/Play or EASY, but we gotta do what we can to get them to eat more at this point.) Big step when yesterday morning they wouldn't drink more than 1/2 oz when they woke up- even though it had been many hours since they last ate. So yay that is is only 8 am and they've both already drank 5 oz. Small victories at this point.
Cut and pasted info FYI:
(From a GI doctor) [Prevacid] SoluTab and any of the delayed release PPIs (the type of drug prevacid is) do not work at nighttime very well. Let me clarify, from 9 pm till about 2 am there is very little acid production (this is because of ancient genetic encoding). Ate the evening meal while day light 6pm or so, then go to sleep (then acid kicks in in early am (~2 am to 6 am) to kill any bacteria that were ingested). This remnant genetic predisposition is still with us. What do PPIs require to work??? (Answer: Actively secreting acid pumps). How long is the PPI in your babies system? (for approx 120 minutes after you give it). If the acid pumps (proton pumps) are not on during that time period then acid will not be blocked.
Is it possible to give too much PPI?
The short answer is no. Fortunately, PPI drugs are very specific in where they work in the
body. They are only active in a very specific place – that is the acid secreting cell,
parietal cell. Since PPI drugs only work on the acid secreting cell the chance of side
effects is very, very low–even if you give 3 times more than your child needs. In fact, PPI
drugs are known as prodrugs because they are not active as they pass through the body.
PPIs become active only when they pass into the acid secreting cell where the pH drops
to less than 3.
Clinical studies showing that higher PPI doses are required to achieve healing in
pediatric patients:
Gunasekaran TS, Hassall EG. Efficacy and safety of omeprazole for severe
gastroesophageal reflux in children. The Journal of Pediatrics 1993;123:148154.
Hassall E, Israel D, Shepherd R, et al. Omeprazole for treatment of chronic erosive
esophagitis in children: a multicenter study of efficacy, safety, tolerability and dose
requirements. The Journal of Pediatrics 2000; 137:800807.
Iarocci TP, Tan H, Singer, J, Barron J, Pilzer E, Patel D, Bakst A. Proton pump inhibitors
in infants. [Abstract] American Journal of Gastroenterology. 2005;100 (suppl.):S273.
Reviews of PPI use in children: pharmacokinetics, safety, efficacy, and dosing
information:
Israel DM, Hassall E. Omeprazole and other proton pump inhibitors: pharmacology,
efficacy, safety, with special reference to use in children. Journal of Pediatric
Gastroenterology and Nutrition. 1998; 27:568579.
(Specifically states that on a per kilogram (weight) basis, children require higher doses of
omeprazole than adults due to different pharmacokinetics of omeprazole in children.
Discusses at length the use of buffered PPI suspensions in children as a preferred dosage
form.)
Clinical study of pharmacokinetics of omeprazole in children:
Andersson T, Hassall E, Lundborg P, et al. Pharmacokinetics of orally administered
omeprazole in children. American Journal of Gastroenterology 2000; 95:31013106.
(Pharmacokinetic study showing the relationship between lower age and higher dosing
requirments in pediatric patients: younger children require higher and/or more frequent
doses due to shorter PPI halflife.)
10 comments:
Well you seem to have some bad luck with doctors. It is a good thing you are smart enough to do some more research. I hope either the over the counter medication helps or you are able to find a new doctor quickly who is willing to prescribe the medicine your babies need.
DD is on 15 mg/day of prevacid (prescription)... 22.5mg/day sounds like a lot... I would double check that...
Also, Alimentum is the same thing as Nutramigen (as you said), so I think you'll just be wasting your money personally. DD is on Alimentum, and it's WICKED EXPENSIVE.
Let us know how it goes!
i don't know much about reflux babies and prevacid doses, but i would say going from 7.5mg to 22mg seems like a pretty big jump. you are tripling the dose she's currently on. i would try slightly increasing until it gets better. but- that's just my opinion. they are your babies and i'm sure you've thought about this thoroughly. i wish you all the luck with whatever you decide to do. they are beautiful and i'm sure they will be just fine!!!
oh, i also meant to suggest you try looking for a new pediatrician now. your babies are only 3 months old and you feel the drs are already not listening/taking into account your concerns. if they aren't now, then they probably won't later either. i changed my babies' dr a week after birth and it was the best thing i ever did!!!
I have to say that 7.5 mg doesn't seem like much at all, but then again that is coming from someone who was started out at 15mg for her baby from the get go. I definitely think they need more. Increasing it slowly sounds like a good idea. You may not need the full 22.5 mg, you may just need 15. But like anything, if their reflux is bad, the benefits of high doses of prevacid far outweigh the risks. Your babies need to eat and that's that. If that's what it takes, that's what it takes. I will do pretty much anything to get Lexi to eat well. So far we are not very successful, but you do what you have to do. You are doing a wonderful job and I think it's good that you are researching on your own as well. If the pedi continues to be stubborn about the dosage I would strongly recommend finding a new one. You know what's best for your little ones. You're with them all day long, your pedi isn't. End of discussion. Love you much and hope things get better soon!
22.5 mg/day does seem like an awful lot, coming from someone who has worked in a pharmacy for 5 years. I clicked on the link you left and I am pretty sure that calculation gives you the total amount your babies should have in one day and then that number gets divided into 3 daily doses (not given for each dose). Full grown adults only have doses of 15-30 mg per day.
I can't believe the doctor said that she would admit you all to the hospital if you needed help...I have tried to imagine how hard all this has been for you...but hearing that made me realize just how difficult it must be!!! WOW...good job doing your own research...and perhaps the others are right in that you should find a new pediatrician...its no good having one that doesn't listen to you!!!
Good luck!!!
Thank you for this Katie!!! I have been giving Lexi half a tablet (15mg) before bed, but now I know better! This has been super helpful for me! I was doing 15mg in the morning and 15mg at night. No one told me about the acid production being lowest at night but I also heard about babies metabolizing it really quickly and that's why it's ok to give the bigger doses. You certainly made my day by posting these facts because I had been worried about how high of a dose that Lexi was on but now I feel so much better and now I will know to try giving her the higher doses during the day as opposed to night. Hopefully this will help her! i hope you figure things out for your babies too. I think I'm going to start giving her 7.5 mg every other feeding now starting in the morning since she eats about 6 times.
Sorry you're dealing with this and a stubborn doctor at the same time. And that the GI doc won't do anything different till the pH probe is done. If the PPI makes things better, I think you already have your diagnosis.
I say good for you for doing your research! You are their mother and you know in your gut what they need. I would certainly look into finding another pedi.
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