Question About Prilosec

[Anonymous]

For all of you who dont remember, my son Aidan who is now almost 8 weeks old had been diagnosed with GER at 3 weeks of age by his pediatrician. He was placed on thickened feedings, 1 TBSP rice to 2 ounces of Nutramigen (which he is on due to suspected MSPI issues). The thicked feedings helped alittle and still do but the severe GER episodes remained.

At 5 weeks of age he went inpatient at the hospital for a 12 hour polysomnogram. 5 hours into the test, he coughed and gagged the pH probe out of his nose but completed the remainder of the test where it was seen he had frequent episodes of apnea and brachycardia, which we all know are clear indications that there is GER going on. Eventhough he didnt show any major reflux episodes, partially due to the fact that he didnt eat more than 2 ounces the whole 5 hours after the probe was inserted because he was traumatized I think and chose to sleep the time away, he was diagnosed by the neonatologist as having GER and placed on Zantac. He responded OK for a week or 2 on the medication but he started having frequent severe reflux episodes again. I pushed our pedi to request a rush appointment at the Childrens Hospital of Philadelphia (CHOP) and we went yesterday. The GI there diagnosed him with significant GER and placed him on Prilosec suspension 2mg/ml. We also scheduled an Upper GI for next Friday and it feels like we are FINALLY getting some answers for Aidan. We had to search for a pharmacist knowledgable enough to actually make the suspension but I am happy that we now have a PPI which the doctor at CHOP acknowledged to be the best treatment for GER.

OK, here are my questions:

For those of you who use Prilosec suspension, how long did it take for you to see an improvement in your baby? (I know we have to take into account the possibility of damage to the espohagus and irritability and discomfort from that pain.)

Do you have to time the administration of the medication so he cannot feed immediately before or after the medication is given? (The doctor did not specify, other than to say its “preferred” but she didnt say it was required)

Is the dosage of 1 ml, 3xs per day of the 2mg/ml suspension underdosed in a 8 week old infant weighing 15lbs, 2 oz (hes a chubby guy from the thickened feeds)?

TIA for all your help!

Ellen

[hellbennt]

give any time- doesn’t matter about feeding

it was day 12 that we saw it help jonah- I truly suggest you continue w/ the zantac until you see an improvement w/ the prilosec. how will you know? you’ll KNOW (zantac needs to be given at least 2hrs, or more, seperate from the prilosec)

sounds very low…he can take 20mgs or even more a day and he’s getting only 6

even at 1mg per kilo, he should get 7mgs & he’s getting 6

hellbennt2006-9-8 8:38:45

[Anonymous]

It took us 2 weeks to see any difference and my daughter started on 5ml once a day so 5mg. We saw a difference but she was still in alot of pain.

For the second lot of medicine the pharmacist forgot to order it in and we had to go 2 days without it, I can’t tell you how bad she got I just want to wipe it from my memory. The emergency dr we saw gave us losec mups to use and we are trying to get to grips with these now. She is now on 20mg a day as we went to 10mg and it still wasn’t helping completely.

My daughter is 15lbs 4oz and Dr Philips from Marci kids said she should be in 30mg 3 times a day so i will wait and see how the 20mg goes.

Also i found our condensed prilosec became unstable for the last 2-3days and her symtoms returned which was annoying. That is why we are trying the tablets although it is a pain as you have to time them around her feeding.

[Anonymous]

suspensions have been known to lose stability in 1-2 weeks.

did you get it compunded with sodiuym bicarb and no flavor?

also, that sounds like a pretty low dose. if you dont see improvement soon, i would show your doctor the marci-kids.com dosing calculator.

good luck.

[Anonymous]

According to http://www.marci-kids.com his dose is very low. I was able to get my son on a higher dose of Prevacid by printing and faxing the marci-kids info to his doctor. The higher dose turned things around for him.

[Anonymous]

Thanks for the info/advice…..

We have decided to continue the Zantac with the Prilosec until we see improvements, if any, since it seems that his dosage is way lower than what it should be. IF he doesnt improve in the next week or so with the dosage he has now, I am going to call his GI doctor and ask her to look at the info on the Marci-Kids website. My guess is Ill be making the phone call to the doctor because his reflux tends to be severe. Hopefully she will read and follow the info on the website. During our first meeting she seemed pretty receptive to what we told her and she even said that Zantac is horrible as a sole treatment for GER.

The pharmacist compunded the Prilosec with sodium bicarbonate and did not add flavoring to the mixture and gave us a two week supply and told me to call when we are getting within a day or two of running out so he can compound more so he seems like he knows his stuff.

Will let you all know how Aidan does……

Thanks again!

Ellen

[Anonymous]

Good luck. I’m happy to hear that your pediatrician is receptive and your pharmacist seems to be on the ball, too. Keep us posted!

[Anonymous]

We took Aidan back to the GI doctor 2 days ago after he went through an Upper GI (Which came back normal) a few weeks ago. The main reason we went is because after talking to the doctor on the phone through the nurse practitioner, she only increased his medication to 12mg per day (or 2ml of 2mg/ml 3xs per day) despite continued problems with breakthrough bouts of reflux. I showed her the literature from marci-kids.com and she looked it all over. After she skimmed the literature, she agreed to place him on the minimum recommended 3.5ml of the suspension 3xs per day. So now hes receiving 21mg per day and he seems to be doing well. She did say if we needed to go higher that she would do so. So if anything shows up, Ill be on the phone to her!

She didnt want to place him on Zegerid because he was responding to the Prilosec suspension so she said we should try to increase the dose instead.

She also was very receptive to the information, asked to keep what I printed out, and asked for the exact website URL so she could research more.

Hopefully I enlightened her enough so she starts giving kids adequate dosages so they wont have to suffer in pain…….

[Anonymous]

thats awesome!!

[Anonymous]

if only all drs were like that!!!

most hate to be told things they don’t know

[Anonymous]

The nurse practitioner was like that. She got offended when I asked her to look and to ask the doctor to look at the information on the website. She made comments llike “We are a specialty hospital just like MARCI, we know what we are doing here”, the usual “Doses that high can have disastrous implications for a child your son’s age’…..blah blah, blah……..when I asked her to describe some implications, she had none…..same speech. different health care worker…..

Just glad his doctor was receptive and listened to me…..shes actual a great lady….taking the time to talk and listen despite having a huge caseload the day we were there (she was running 2 hours behind but we waited and we got what we wanted)

Aidan has been sleeping in 3-4 hour stretches instead of 20 minutes ones……hes smiley and laughing now when a few weeks ago, he spent most of his waking time in tears……..no more Mylanta necessary. Only an occasional dose of Mylicon on days where hes a tad bit gassier than usual…..I say we are on our way to better days for him…..

keep your fingers (and toes!) crossed for us………

[Anonymous]

Great news!!!

I hope it continues. Once Myles was on the right dose things were GREAT!!

[Author]

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