Home › Forums › Infant Reflux Information › Medicines › Looking for Caracream for Losec/OTP Prilosec
- This topic has 7 replies, 1 voice, and was last updated 14 years, 11 months ago by
hellbennt.
-
AuthorPosts
-
November 1, 2011 at 11:31 pm #69271
Anonymous
InactiveHi there: My name is Sarah and I have lurked on these forums for the last year, getting support and information from all the wonderfully helpful mums and their tips. My son (8 years now) had silent acid reflux for 6 years (GERD free for 2 years now). He was on 20 mg of Losec daily, and that controlled his symptoms perfectly.
My daughter was born in Jan of this year, and was diagnosed with classic reflux at 1 month. She was put on prevacid and then losec – both of which helped initially, but within a week a two appeared to stop working. I searched through these forums, found MARCI kids and started using Caracream with Dr. P’s advice. Although we never got my daughter’s reflux under control the way we did with my son, Caracream was still a miracle, helping us to administer the losec more accurately, and giving us better results.
Two weeks ago when we ordered our Caracream as per usual we found the bufferbabies site down, and Dr. P and his team unreachable.
I live in Canada, and zegerid is not available here unfortunately. So we are back to starving my baby, and crushing losec pills 🙁 to give her dose (not to mention not being able to titrate accurately for weight).
Does anyone have Caracream for Losec/Prilosec that they would be willing to sell?
Any advice/shoulders to cry on would also be welcome as I am not looking forward to the no-Caracream days (I have about 2 weeks supply left). Also I hope Dr. P and his team are okay – there is no information, and it seems very strange as he has always been so helpful in the past.
Sarah (mum to Wesley aged 8, GERD free after 6 years; Ehlana aged 10 months, GERD since birth)
November 2, 2011 at 7:56 am #69272hellbennt
KeymasterDr P is around- I’m sure he’s swamped w/ emails- he did answer me recently- very briefly-
he & his team are no longer getting funding from the University- that’s all I know/can gatherso sad
you can try emailing him again/please keep me/us posted!email dr philips Dr. Philips: phillipsjo@health.missouri.edu
and/or call the office: (573) 884-0672
November 2, 2011 at 10:30 am #69274Anonymous
InactiveThanks Laura – I will keep trying to reach him. It is a shame because Dr. P has helped so many of us in the past and truly is a pioneer in this field.
November 2, 2011 at 8:15 pm #69278hellbennt
Keymastercan you get any capsules?
w/ a capsule, you can open it up and give the beadsyou give on an empty stomach, though, and when you administer the beads you give w/ 1/2 tsp of applesauceand then you follow w/ a ‘meal’ 30 minutes later…I’m SO UPSET about marci-kids and dr philips!November 5, 2011 at 12:11 am #69308Anonymous
InactiveEhlana requires a very exact custom dose. For a few months I did not think any ppi was working for her (we tried prevacid, losec and nexium), because she was always burpy, gassy, arching etc. Even with Dr. Phillips dosing recommendations. One day after we were away from home and forgot her ppi dose for the day, we noticed that she did fine for a few hours past the time of her normal dose. After several weeks of experimenting, I found that she did best (though never “normal), on a dose between what her GI recommends and what Dr. Phillips recommended. She was 5 months at the time, and the dose was 2.46 mg/kg losec (just to show how exact the calculation has to be). I have spreadsheets to track her dosage and symptoms.
With metabolic changes and weight changes, I have to constantly adjust her dosage, and Caracream allowed me to do that with precision as I could titrate it exactly, compared to pills/capsule. Ehlana is actually pretty good at swallowing the 10mg Losec pills, but then I cannot get exact dosing, as she seems to need.
Her current value is 3.17 mg/kg (again at odds with Dr. P’s research that says that amount needed/kg decreases with age – but Dr. Eric Hasall’s research says around 6-9 months of age, reflux/all babies often experience a surge in the amount of acid required – speculatively because around that age they start solid foods, and the body starts to produce more acid in anticipation).
I am going to drive to Buffalo this weekend, and get some OTC Zegerid. There are instructions, apparently with Dr. P’s blessing that suggest adding 1 20mg losec/Prilosec to a 20mg Zegerid packet with 1/4 tsp of NOW brand Calcium carbonate to provide needed buffer. That makes it closer to the 40 mg Zegerid prescription and reduces the sodium content per dose compared to the 20mg OTC zegerid.
http://community.babycenter.com/post/a29899039/zegerid_20mg_packets?cpg=-1#c2363674250
At least this way, I can try to get something closer to caracream, and be able to dose more precisely.
Keeping my fingers crossed :).
btw for any mums out there who have found that ppi’s don’t work, your LO may be the same as my girl – requiring a very exact dose. When we first started her on prevacid she responded very well for about a week and then started deteriorating. For weeks I believed that the ppi had stopped working. I now believe that is because the drug built up in her system and when she is “overdosed” she is gassy/burpy/vomits (similar to her regular reflux symptoms).
When “underdosed” she tends to be burpy, gassy and throws up chunky solids close to the time before her next ppi dose is due. When she is “overdosed” she tends to be burpy, gassy and throw up liquidy vomit a few hours after her last ppi dose. It is not much to go on, and often difficult to tell, but it is the only pattern I have noticed. And when I can get it right, she is only a little burpy and can sometimes nap for an hour at a time.
Even at the best we can get her, she gets up 5-6 times per night. On bad nights, it is more like 10-12.
….My son did not outgrow his reflux for 6 years, so I am terrified that she will be like him – or worse…….
November 5, 2011 at 10:47 am #69311hellbennt
KeymasterThanks for the link- But I’m confused: you can’t use Zegerid OTC – so you’re going to Buffalo to get the packets? you have a RX?
I’ve been collecting information, too about mixing the zegerid packets here:anway: yes! it’s true that oftentimes we must ‘experiment’ w/ dosing to find just what works for our los! thank you so much for your sharing
November 5, 2011 at 11:10 pm #69315Anonymous
InactiveI don’t have a prescription. Zegerid is not available in Canada, and my doctor here can’t write a prescription for a pharmacy in the US. So I can only buy the OTC Zegerid – the 20 mg packets. I wish that I could get the 40 mg packets, but though I called a few pediatricians in the US, none want to take my daughter because we would not be regular patients (and we don’t have US medical insurance).
The post from the baby centre is from a woman who talked to Dr. P. about using the 20 mg Zegerid (which has the same amount of Sodium as the 40 mg package). Basically Dr. P said that if you add 20 mg of Prilosec/losec to the 20mg of Zegerid (which itself is about 20 mg of losec plus sodium buffer and flavourings), then you get something close to the 40 mg prescription version of Zegerid.
Don’t know if it will work, but it is better than trying to starve dd and then guess at the dosing from the capsule version of losec.
Will keep you posted.
November 7, 2011 at 7:55 am #69317hellbennt
KeymasterI didn’t realize zegerid OTC came in packets- I thought it was some kind of pill…aha! thanks!
-
AuthorPosts
- You must be logged in to reply to this topic.
