Prilosec-1 week later, and a question

[Anonymous]

We have had Aidan on the Prilosec for about a week now and he seems to improve alittle and then the medication seems to wear off too soon before the next dosage is due. (this if course is EXACTLY what the marci-kids.com website mentions about metabolizing the dosage too quickly) Even with giving him the Zantac to supplement to help him along he still has some episodes, not as severe as theyve been but severe enough to make him uncomfortable. So I called the GI department at CHOP and theyve increased his dosage to 2 ml 3xs per day of the 2mg/ml suspension so we are at 12 mg per day. Unfortunately the GI doc’s at CHOP dose up instead of using the maximum dosage at first. They did mention using Mylanta or Maalox to help him with the discomfort til we find the right dose.

Here is another group of questions…….is there anyone who has their child on Axid as an H2 blocker instead of Zantac? Are you finding it more effective than Zantac? Is there risks to using it? The neonatologist that Aidan sees for the apnea monitor recommended this as an alternative to Zantac. Aidan absolutely HATES the taste of the Zantac and the Axid has a bubblegum flavoring to it that I know he will like.

[hellbennt]

you can try it- it’s the same ‘kind’ of drug as the zantac

in the meantime, you can mix the zantac w/ a bit of mylanta to help it taste better

[Anonymous]

Thanks Laura. I have some samples of Axid here so I may try it instead of the Zantac till we get an adequate dosage of Prilosec. We have an upper GI scheduled for Friday and I am considering going to the GI’s office since its right next door to the hospital and cornering her with printouts from Marci-Kids to see if she would consider switching him to Zegerid or at the very least give him the 27 to 36mg of Prilosec recommended on the website. He is in pain still and last night we saw some small steaks of blood in his bowel movement so hes not getting better.

[Anonymous]

aidanstiredmom,12 mg sounds like a very low dose!! thats probably why you are not seeing complete reflief. 🙁

have you showed the doctors the marci-kids.com dosing recommendations?

[Anonymous]

The doctor is calling me tomorrow AM and I plan on talking to her then about the dosing recommendations but the nurse I spoke to today said she works closely with the doctor and shes never heard of the Marci-Kids website herself……hopefully theyll be receptive like they were at Aidan’s initial appointment and listen to me and the website!!

Will keep you all posted!

[Anonymous]

Good luck! It took me many long, miserable weeks to convince Myles’ doctor, but it sure was worth the aggravation. Once he was on the dose recommended by marci-kids, things finally turned around.

[Anonymous]

We use pepcid instead of zantac because the taste is much better. The copay is also much much higher, but it’s been worth it.

[Anonymous]

Aidan is on Prilosec suspension but he fights so bad as soon as he tastes the medication in his mouth. It has absolutely no appealing flavor to it. He gags and cries when I give it to him unless he is absolutely famished and wants to feed and he gets so upset that it takes awhile to calm him down afterwards. Once its down I do see alittle bit of progress alittle while after he takes the medication but then it wears off so quickly and his episodes start, the apnea monitor starts going off, and I feel like I am going off of the deep end.

The thing that sucks is I think I am going to have to fight to get him a higher dosage because they want to dose up and have a wait-and-see attitude about his progress. Right now he is at 12mg a day which is 1/3 to 1/2 of what is recommended on the Marci-Kids website for his age and weight. I know kids sometimes do well on less but this isnt the case with Aidan so far. His reflux is pretty severe and it affects not only his digestive system but also his breathing (apnea) and his heart rate. Thats why hes on a monitor. Maybe I could use that angle. That I dont want to have a wait-and-see attitude BECAUSE of the monitor.

After hearing all of the wonderful things about Zegerid and being able to not have to wait to feed and being able to mix it with food to administer it, Id love to use that because of Aidan’s taste issues with everything else hes been on so far. I tried the Axid with him yesterday and he liked the bubblegum flavor but we all know he needs a PPI and not an H2 blocker. BUT, according to the GI nurse I spoke to yesterday, she doesnt recall any of my son’s GI doctor’s patients being on Zegerid. Maybe I can convince them to have Aidan be the first.

Anxiously awaiting a call from the doctor today……..Keep your fingers crossed for us………..

AidansTiredMom2006-9-14 8:9:17

[hellbennt]

I’d FAX the docoto the info so s/he can look at it as you talk

& (sorry!) IGNORE the nurse!

[Anonymous]

Ellen,

I know what it’s like to have doctors dissmiss you and want to use the wait and see attitude. I could never convince doctors to use the marci-kids info, and I found that the more reputable the facility, the less likely they were to accept that there might be info out there that they didn’t know.

That being said, I’ve heard that Dr. Phillips has called the docs of a few people on this site, and has spoken to them directly about a higher dose and also about zegerid. If that’s something that you’re interested in, perhaps someone else can post for you about how to do that. I really do believe it’s best to start with a higher dose and dose down if you’re able then the other way around.

As for the prilosec suspension itself, it sounds like you’re getting an unflavoured suspension, but are you having it prepared with 16.8 percent sodium bicarbonate? The other issue, from the sounds of the dose, is that according to the marci-kids research, each dose has to be at least 3.5ml in order to ensure that there is enough buffer present to protect the drug from the stomach acid. Joel from marci-kids once explained it to me, that giving a PPI suspension with a volume less than 3.5 ml per dose, is like sending in an army with only 10 soldiers, rather than 20. Some of the drug is going to be destroyed because there’s not enough buffer to protect it, and so he’s not even getting the full amount of the med.

As for the pepcid, you might want to give it a try. I’ve heard good things about it, though we couldn’t get it here. I’ve also heard that there’s a new form of zantac out now called the ZANTAC EFFERDOSE. It’s a little tablet that you dissolve in some water and give by syringe. That may be an option as well. The site is:

http://www.zantac.com/about_zantac.html

Good luck. I hope that you can get your son’s meds sorted out soon.

[Anonymous]

Just a thought……if there is blood in his stool this is a sign of an allergy. Abby’s GI said if she found blood in the stool it was a sign that she was allergic to the Nutramigen. She never had the blood but we switched to Neocate 2wks. ago b/c of her crying during feedings and the Neocate has helped. This might me something to look into to b/c MSPI can contribute or even cause reflux. The Neocate also decrease her spitting up now only about 2 or 3 times per day mostly only when she burps. Good Luck!

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