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Nov 12, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Janet and Jessica
Hi Ladies! Have you two made any headway in getting your boys off the PPIs? Ryan is down from 30 mg to 12 mg split 6 mg in morning and 6 mg at night. (Zegrid + Caracream) That equates to 3 ml in morning and 3 ml at night which is the smallest single dose you can do in one shot. This week I have been trying to eliminate the morning dose and give 4ml (8mg) at dinner. Unfortunately the last 3 nights he opens the fridge immediately when he gets home from daycare, grabs the PPI, hands it to me and tells me that his tummy hurts. He cries until I give it to him. Trying to decide if I should give him Pepcid chewables in the morning for awhile and stick with my night time dose of the PPI, consider it a failed wean, or push through. Any thoughts? Thank- Karen
Nov 15, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I would stick with both at the same time for a bit and wean slower. It took us what felt like forever to wean Jedd over to a H2blocker full time, for him it was Axid.

We would give the Axid in the morning and the Prilosec in the afternoon. If he's asking, then I'd go ahead and do it.

We have times now when Jedd asks for meds in between, when he does, we give him Mylanta to tide him over to his next dose. This is per his GIs request. He is trying to keep him at the same dose of Axid even though we have been on the same dose for well over a year now.

I'd really like to up his dose, the GI does not at this point. We see him at the end of this month and shall see what we will end up doing.

Nov 15, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
We are in the process of a wean right now...but I think it's a fail...GENERALLY Z is doing well, but I am noticing some sleep interruption (minor, but he has NEVER had sleep issues) and the morning cough is back (niiiice and juicy). I'm giving it one more week (Z is not in pain and he's eating "fairly" well)...to see if the cough is related to the reflux or if it's just a minor cold ...he has a few other cold symptoms as well. I wasn't recommended to step down to an H2 Blocker...I was thinking that might be enough for Z at this point..any thoughts? Our GI wanted us to go cold turkey! I hope we're not rebounding...
Nov 15, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
on a happy note...guess who is eating a regular dinner at the table now...His last few meals have consisted of 5-6 cocktail weenies and a slice of cheese or one slice of pizza and one night he had roasted chicken and garlic bread!!! It's an exhausting process to get him to keep taking bites and I don't have it in me to do this outside of the home yet, but MAN oh MAN...6 months ago if you told me my son would be eating dinner wiht me, I'd have laughed at you....volume is still low, but we are totally getting there!! He's even uttered the magic words "i'm hungry mama!" a few times!
Nov 15, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Eating at the table?! Whoo Hoo!!!! Congrats to you! and real food to boot! That has been a long haul for you.

I called the ped today just to bounce it off him.. and to get his blood test results. Speaking of, have you ever had Zach of Jedds iron and B12 levels checked. Dr. Phillips from the U recommended it because he has been on a PPI for so long. Anyway I told him I was trying to see him down another 2 mg but that to do that I had to cut the morning dose and up the evening dose. I asked if it were his son would he replace the morning dose with an H2 blocker, keep pushing through with what I am doing for go back to the morning and night dose. (his reflux cough is back.... high pitch and no juicey) His vote was to back to what he was and to consider the fact that we have gone from 30 mg to 12mg in a matter of a year and to try again this spring. Oh and he is definately not a fan of cold turkey.

Janet, did you end up trying the Zegrid? If you could get Zach to take it, you could do the wean down with that. Since you only do a once a day dose anyway you could start at 7ml, which would give you 14.5mg, and then keep dropping it back a ml every couple of month until you get to 3ml and then stop after that. That might be a great option for Zach. A much better step down approach. What is getting us is the split dose issue.

Nov 15, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Jedd has had all of his levels checked when he was around 18/24 months old and it was all completely normal. And for a child with feeding issues, we were amazed, as we were in a tube wean at the time and his diet was less than stellar. Think a Peanut Butter cup for lunch at least 2x's a week....LOL

I'm glad to hear they are not a fan of cold turkey, it still amazes me that it's suggested soo often. Most meds adults are on long term are weaned down not done cold turkey.

And Janet, WHOOHOO on the eating!!! *inset jumping up and down smilely* It will get better with time. It takes a while, but it does.

Nov 16, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
We have an appt with his GI coming soon...i think jsut after Xmas. I think I'll call and see if the Zegerid would be an appropriate measure. I think that he does still need something, but I'm not convinced that he needs the high dose Prevacid...I think he's digesting better, but there are still some unresolved acid issues...and of course he is still "learning" to swallow properly...he tends to stuff his mouth then panic...but we're getting there...
and yes...he's eating at the table..he stands in his chair..he wont use a high chair or a booster, but he'll stand and eat with us...it's starting to become routine for him...he doens't argue and whine...too much...And a peanut butter cup for lunch...sounds good to me. I was starting to worry about nutrition when I realized that most toddlers are surviving on hot dogs, pizza and chicken nuggets...oh...and pringles and cheetos :)
Check with your
doctor first!