Infantreflux.org | a flare up???

This topic has 10 replies, 1 voice, and was last updated 19 years, 3 months ago by Anonymous.

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June 5, 2007 at 11:55 pm #35734

Anonymous
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I posted can’t we just have a good month, a couple of days ago and then we had a couple of good nights. I thought we were on track again, but tonite, it’s not even 11 pm and Owen has thrown up twice in bed, pjs, bedding and all changed.

He seems flemmy and is coughing a lot, not during the day, only at night.

He’s on Prevacid and his dose has been the same since 6 mo. 2ml twice daily.

When do they up it again? I know my doc is way behind on the whole marci-kids thing. He brought out a really old outdated paper to show me what Owen’s dose should be at his 6 mo check so I’m thinking it will be hard to convince him to up it even at his 9 mo. I’ve been through this with everyone I don’t want to change docs cause we’ve been through sooooooooo much together! I don’t have the energy to tell this story again to another doc!!!!

I know this has got to be reflux, but do I just let it pass? He sleeps as long as he doesn’t start coughing.

He’s also on the compounded Prevacid. I know it should be mixed every 2 wks, but I do the whole mo b/c I’m afraid our insurance won’t cover it twice. The price has already gone up on Prevacid twice since he’s been on it. I pay $50 per mo and I certainly don’t need to double that! Especially since we pay out of pocket for his Neocate also!!!!

How do you get ins to cover so that it can be compounded twice a mo instead of just once without them charging you double????

I HATE ALL OF THIS!!!!!!!!! I JUST WANT TO TELL THEM THIS IS A POOR LITTLE CHILD THEY ARE DOING THIS TOO!!!!!!

June 6, 2007 at 7:41 am #35739

hellbennt
Keymaster

erica,

sounds like you need it compounded 2x a month-

just ask you doctor- fax a nice note even- to please humour you and to please write the perscription to be made every 2 weeks- while you at it, tell him to please humour you to write it up just the way you want (if it’s not already) this way: https://www.infantreflux.org/forum/forum_posts.asp?TID=7855&a mp;TPN=1

as for the dose increase, you can try but it sounds like first the compounding issues need to be addressed?

June 6, 2007 at 9:40 am #35744

Anonymous
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Addy was on compounded omeprazole. I believe some other moms here found it to work for their child but our only compounding pharmacy on our Rx plan in our city was clueless on how to correctly compound it. It can be compounded incorrectly and be ineffective. Most compounds last between 7-14 days at best even if they are compounded correctly. http://www.marci-kids.com has some info on compounded meds. I would definitely ask for a Rx for it twice a month to see if that helps first. Hopefully that will solve it!

June 6, 2007 at 9:41 am #35745

Anonymous
Inactive

Erica,
We use the compounded Prevacid too, and we just get 2 weeks worth at a time. Our insurance has no problem with it because you’re only paying half the price each time. In so at the end of the month, they’re not paying any more for it than you would be if you got it once a month. I’m sorry your doctor is being so narrow-minded about the Prevacid dose. I sure hope you can convince him to try a higher dose soon. Meanwhile, could you try giving him some Pepcid Complete at night?

June 6, 2007 at 10:00 am #35749

Anonymous
Inactive

That’s what I was going to suggest……..ask the doc for two week scripts, and mabye try some Pepecid Complete at bedtime. (I think you have to make sure it’s spaced four hours apart from the Prevacid). Dr. Phillips at marci-kids says infants can have 1/2 a tablet once a day.

Good luck. I hope things improve soon. It sounds like he probably has a cold which is likely complicating things. Hopefully that will pass soon.

June 6, 2007 at 8:31 pm #35814

Anonymous
Inactive

Hey Erica,

Man, our little guys sound so similar. Ben has that flemmy nighttime cough too, and seems to be fine except when he coughs and wakes up. I’m not altogether sure myself if it is actually reflux… I’m actually starting to wonder if it might be allergies?? like hay fever. My reasoning is that he doesn’t really cough during the day, and if it were the reflux I would think he would be doing it then too. But maybe not, as he is upright more? Anyway, let me know if you figure it out. I’m going to ask the doc. about allergies at his 9 mo. appt.

Also, my daughter was on compounded prevacid and we had it done every two weeks. Our insurance didn’t have a problem paying because you actually only pay for it one time… you just get half of the prescription filled. I would call your pharmacy and see what they say about it. I’m sure they deal with insurance companies all the time.

June 6, 2007 at 8:37 pm #35816

Anonymous
Inactive

yes i agree that your compound is becoming inneffective after 14 days. and you may also need the dose increased.

good luck to you.

June 6, 2007 at 10:11 pm #35839

Anonymous
Inactive

our insurance coverage wasnt a problem either as long as that is what the script says.. if its says for 2 weeks.. than they will charge you for half the amount. and to get the dose increased doesnt matter either.. at least for us it didnt.

i would def do the pepcid complete @ night prob almost half a tablet w/water. and i hope the higher dosage and the newer stability of the ppi helps! if for some reason they wont do it your way.. you can always try the capsules or the solutabs?!

June 6, 2007 at 10:35 pm #35841

Anonymous
Inactive

Naomi- you know, I am really starting to think allergies too b/c when we shut the house up at night, he seems to sleep better. I really like having the windows open, and it’s been realatively nice here and it’s sure to hit 100 soon so I like to keep the air off as long as possible, but I really think he needs the a/c.

Thanks all for explaining the whole ins thing. I have had more trouble with Blue Cross since I switched the kids from my ins to DH’s.

June 7, 2007 at 10:30 am #35867

Anonymous
Inactive

Yeah, I’ve noticed that when we don’t get outside during the day, he doesn’t cough as much. We were at the pool yesterday, and he was coughing a lot last night and is congested today with little crusties in his eyes.

I’ve been using the cool mist humidifier every night and that seems to help, and I’ve also been using a lot of the saline drops in hopes of washing out any irritants and also trying to guard against any new ear infections!!

June 7, 2007 at 11:29 am #35872

Anonymous
Inactive

I hope that you can get the meds sorted out. Do you think that you can get your doc to prescribe 3.5ml twice a day? It’s not really a big increase, but marci-kids feels that 3.5ml is really needed per dose to ensure that there’s enough buffer each time you give the med. That along with the two week doses might help. Even our compounding pharmacy told us that it’s only stable for a maximum of two week periods according to their compounding information (which was minimal), so your pharmacy really shouldn’t even be making so much at one time.

How much does Owen weigh now? How many MG (not ml) of meds is he getting a day? How many mg/ml is your solution? I’m just asking b/c I have some information from the North American Society of pediatric gastroenterologists and they have a position paper on treating infant GERD. They also have somewhat low dosing, but it might be higher then what your doc is suggesting, and he might be agreeable to follow their directives, since it’s really what they’re supposed to follow anyways.

Good luck.
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