Infantreflux.org | Desperate for advice

This topic has 10 replies, 1 voice, and was last updated 20 years, 1 month ago by Anonymous.

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August 29, 2006 at 5:25 am #12517

Anonymous
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Hello,

I have been a member here before but i think my login got lost when the forum crashed??

Anyway this is the story so far and why i desperatly need some advice.

Daughter is 5.5months old and has silent reflux since 5 weeks old.

Started on Gaviscon, didn’t help.

Went onto Zantac and domperidone, didn’t help. Stopped the domperidone and carried on with zantac upping the dose when needed and seemed to help for a month or so. Then it stopped working dispite putting the dose up.

Now trying omeprazole (losec) condensed, tried it for 2 weeks and it def seemed to help some although she was still in pain (maybe dose too low?) was taking 5 ml once daily.

Heres where things go bad again, the pharmacist forgot to order the meds in as they have to be specially made, NOT HAPPY so i tried everywhere to get some with no luck. In the end i found a dr who prescribed losec mups which we are now giving 10mg once daily.

The problem is she missed 2 days of the med and has been taking the mups for 2 days and there has been no change. Being off the meds has caused her to get very bad very quickly. She won’t sleep at all night or day, she is crying all day, arching her back all the time, not feeding well, jerking and thrashing when refluxing, it is horrendous.

My question is how long should it take for the mups to kick in after missing 2 days of the meds?

Also i wonder if the dosing is correct? She was on condensed 5mg/5ml and taking 5 ml once a day, now giving her 10mg mup once a day, is this the same strength?

I just don’t know what to do she is in so much pain with it. I’m still giving her the zantac but it doesn’t seem to be doing anything

August 29, 2006 at 6:09 am #12518

Anonymous
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I’m so sorry about the pharmacy. That really stinks!

It shouldn’t take too long for the meds to kick back in. Her dose is really low. It sounds like she is actually getting double the meds now, but it’s still a really low dose. You could try to help get through the period until the meds kick in by using gaviscon or mylanta. Other than that, I’m out of ideas. Sorry.

August 29, 2006 at 6:30 am #12519

Anonymous
Inactive

I thought the dose was low but the drs i keep seeing don’t know much about reflux or the meds!!!

I am going to book a private appointment with a dr who speaclises in reflux but of course he is on holiday until next Monday so more waiting around. Then he normally has a waiting time off 2 weeks although if she is still like this next week i will beg for a emergnecy apopintment. Hopefully he will be more realist about the doses.

I am wary about upping the meds myself plus the dr didn’t give me many tablets just enough to get me through until thursday when the pharmacist will be getting the condensed in.

What a nightmare

I emailed Dr Phillips at marci kids who said she should be on 30mg a day

kkmum2006-8-29 6:36:5

August 29, 2006 at 8:00 am #12523

Anonymous
Inactive

Was it 5mg/5ml OR 5mg/ml. If it was 5mg/5ml and she took 5ml a day then she was on 5mg a day. If it was 5mg/ml (the way our bottles are usually written up here), then she was on 25mg/day.

5mg a day is unusually low, and even 10mg is a very low dose. Hailey was on 7.5mg per day when she was 2 months old and it did nothing for her. She eventually went up to 10mg/day and it still did nothing for her. She was on this dose for months. At 6 months she went up to 20mg/day and it still did nothing for her. At 10 months she finally went up to 30mg and it gave her some relief.

How old is your dd and how much does she weigh? Also, for the mups, you should try to follow the 30 minute rule and give them on an empty stomach, and then wait 30 minutes and follow up with a meal, if possible.

We have a thread going right now called the long-term safety of PPI use. If you scroll down, you’ll see some info about how to dose PPI’s in infants and children. Maybe you can bring it to your doc and see if you can get an increase.

Also, I know you don’t have zegerid there, but if omeprazole doesn’t work for her in the long run, maybe you could try prevacid.

Best of luck.

August 29, 2006 at 8:18 am #12524

Anonymous
Inactive

Yeah it def says 5mg/5ml on the bottle.

It did help a fair bit as i see now how bad she is without it!!! but she was still in pain and i’m sure that it would only have worked for a short period of time.

I am now giving her 10mg a day but so far nothing has happened she seems to be worse then ever …. is that common? Because all the drs ever say is she will grow out of it around 6 months due to sitting up and solids, i guess i was starting to get my hopes up but she seems worse and we have tried a few solids and although she loved them it made the reflux more painful for her! so i will forget that for a while!!

There is no point changing to prevacid yet as they will start me on a stupidly low dose again and get no where again!!!

I will have to grin and bear it until we get to see the specialist dr!

My daughter is 5.5months old and weighs 15lb.

kkmum2006-8-29 8:19:37

August 29, 2006 at 8:37 am #12525

Anonymous
Inactive

plus it says to give once a day so i am still giving zantac also maybe i should give twice a day?

August 29, 2006 at 9:29 am #12530

Anonymous
Inactive

Are you spacing the Zantac and losec at least 2-4 hours apart? If not, they would cancel out each other’s effectiveness. Just a thought…

Robin

August 29, 2006 at 9:57 am #12534

Anonymous
Inactive

Abby’s Mom wrote:

Are you spacing the Zantac and losec at least 2-4 hours apart? If not, they would cancel out each other’s effectiveness. Just a thought…

Robin

Thanks for the info i already read that here somewhere!!! Thank goodness for this site as the drs never tell you anything which could be why none of the meds ever seem to work

August 29, 2006 at 2:18 pm #12567

Anonymous
Inactive

I know…. it’s awful how the pharmacists don’t even seem to know how to give these meds. When Hailey was doing really poorly on her compounded losec, I kept going back and forth to the compound pharmacy. She was doing terribly, her feeding aversion was out of control, her reflux and Sandifer’s were awful. We had been upped to 20mg of losec given in two 10mg doses, but it wasn’t doing anything. I suspected that something was wrong with the meds, and when I told the pharmacy about it, they said that they’ve been preparing this med for so many children, and it’s saved so many kids from needing feeding tubes, and if Hailey wasn’t getting better, then it wasn’t the med, because she was on an adult dose, but that she must have a more severe underlying medical condition that they haven’t yet discovered. I left there crying.

Then I found this site. I cried (again) when Joel emailed me and told me that maybe it wasn’t being prepared properly. It turns out that in addition to them preparing it in 30 day doses (which they SWORE was stable), they were giving me what they called an “unflavoured suspension” but they were adding a flavouring called stevia powder that was degrading the drug. And the worst part is that they were compounding it as 20mg/ML!!!! We were giving 0.5ml twice daily. When I went back to the pharmacy to tell them about this, they denied any of the issues I mentioned, though they were willing to fill it as I specifically asked to fix what I “thought” to be problems.

I have recently been thinking of filing a formal complaint against this pharmacy with the compounding pharmacy association. I really don’t think that it’s acceptable that people are dispensing medications to our childre, but that they don’t know how to prepare them or how they should be administered.

I really hope that your daughter can get some relief soon. It’s so awful to watch them suffer. Don’t give up. HUGS.

August 29, 2006 at 2:25 pm #12570

Anonymous
Inactive

wow that is a low dose!!!

show your doc marci-kids.com dosing!

August 30, 2006 at 4:04 am #12638

Anonymous
Inactive

nataliachick7 wrote: wow that is a low dose!!!

show your doc marci-kids.com dosing!

I’m going on friday and gonna show him, not sure that it will do any good though??!!!

As for the suspension i found the last 2 days or so didn’t work as it had become unstable!! I much prefer these mups we have been given i think they are starting to kick slowly.

kkmum2006-8-30 4:5:40
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