Infantreflux.org | Zegrid CaraCream sucess stories please

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June 9, 2006 at 3:46 pm #9460

Anonymous
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Hi everyone.

I’m going to be seeing a new doc on Tuesday and am going to be asking

him to switch Hannah to Zegrid (we’re just having so much difficulty with

the prevacid packets). I’m anticipating a bit of a confict as so many here

on this board have described, and as I have experienced in trying to get

Zantac and the Prevacid. I will be printing out and taking with me all (and

I do mean ALL ) of the info from MARCI-KIDS.org, but I also wanted to

bring in as much anecdotal evidence as possible. I started going through

all these past posts looking for sucess stories and it was taking quite

awhile (esspecially with a fussy baby in hand). So then I thought about

asking all of you if you wouldn’t mind telling your Zegrid sucess story

here in this thread so that if anyone is trying to get it prescribed, a

compilation will already exsist and will be here for printing in the future.

I’m also hoping for Caracream or Chocobase stories too, as that will be

my olive branch to the doc if he is vehemently and unshakingly opposed

to Zegrid, or for later if the taste becomes an issue w/ Hannah.

It would be great if your story incuded what other meds you tried, why

other meds weren’t working for your child, and the difference Zegid (or

Caracream/Chocobase) has made in the treatment of your childs reflux.

This way, we can all have this to take to the doc. I hope it’s okay that I

ask this of you all. I’m sure you’ve told your stories a zillion times,

and hopefully this wll make it easy for someone to find them in the future

without you having to write them again. I didn’t know whether to post

this here or in the “Hip Hip Hooray” section, so if someone in charge

would prefer it someplace else, just say so and I’ll move it.

Thank you so much, all of you, for your help! HannahLove2006-6-9 16:2:58

June 9, 2006 at 4:44 pm #9465

Anonymous
Inactive

Erin:

My daughter (born 2/2/06) was diagnosed with moderate to severe gastroesophogeal refulx by upper GI at 2 weeks of age. We tried pepcid for about a week and then tried Prevacid solutabs, which gave her such terrible gas and it actually made the reflux worse. It was also extremely difficult to make a baby that young wait the 30 minutes after medicating to eat.

After doing much research about Zegerid, I asked Abby’s doctor if he would consider switching her to Zegerid. He figured that since it had the same basic ingredient as Prilosec (although it has a buffer added), it would be OK to try. After presenting all of my information to him on why the dose and frequency needed to be more than what his information recommended, he did agree to the dose and frequency for Abby’s weight – 3.5 ml 3 times per day – we mixed 1 20mg packet with 6.5 ml of water in a big syringe and kept it in the fridge and put the individual doses in small syringes. We put the medication in one ounce of formula for each dose and she takes it very willingly.

We began to notice results almost instantly and by 1-2 weeks later, her symptoms were basically GONE. Still, as she has been growing, we have had to increase her dose two times as we were seeing some breakthrough reflux. We used the simple formula given to us by Dr. Phillips for dose amounts (weight X .7 divided by 2 = ml to give the child) It has worked wonders for her with no side effects. Within a month of starting her on it, she was sleeping through the night. She still occaisionally has a small amount of spit up but it doesn’t phase her a bit, as it no longer burns her little esophogus anymore. Our doctor even has told his med students about the success of the Zegerid and was amazed how well Abby was doing on it. It is also so nice for both the baby and the child that it does not have to be given 30 minutes before a meal. We have always given it to her with one ounce of formula and it has worked great.

Zegerid truly has been a life saver to our little sweetie. Hope this helps you out Erin!!

Robin

June 9, 2006 at 5:31 pm #9466

hellbennt
Keymaster

our story in a nutshell:

Jonah was in NICU at birth. When he was taken to the nursery after birth for observation, he had a few apnea episodes- he stopped breathing. Turns out the acid went so high up his esophogus that his lungs shut down to protect themselves. Drs there gave him pepsid & reglan and sent him home on an apnea monitor. I hopped on the computer to do some research. Bcse of the NICU, we had a ped GI appt soon (2wks maybe?)…regular ped didn’t want to (nor should she have!!) deal w/ Jonah’s GERD…I *think* it was NICU dr follow-up appt where he was then switched to zantac…poor Jonah shrieked/howled, couldnt sleep, exhibited Sandifer symptoms- it was truly a nightmare with him those early days/weeks…

At first ped GI appt. I said “why is he taking reglan?” And the ped GI explained that it’s given ‘just because’ and that it’s for motility. He said Jonah could be taken off of it. I also asked about mylanta cherry supreme and he said “absolutely.” I told him about Jonah’s Sandifer symptoms. (I think he was a little shocked at how prepared I was, but he always took me seriously!) Then, he switched Jonah to compouned prilosec. He never said to stop the zantac but I was FREAKED OUT by all the meds that my newborn was on, so I asked and he said I could stop it…he wasn’t clear ( I probably wasn’t clear then either, being so freaked out & sleep deprived!) that he should take the zantac until the prilosec worked bcse, until it did, it would be as if Jonah was on no meds at all…well, after Jonah litterally going HOARSE FROM SCREAMING over the weekend, I called and had everything explained to me and put Jonah back on the zantac. I started researching some more and came across caracream info and prilosec dosing info. I found this site. The prilosec kicked in on day 12 (yes I remember the day!) and although Jonah was FAR from a happy, ‘normal’ baby, there WAS improvement. I saw some lessinging of the Sandifer symptpms (he had tortcilitis, BAD arching, he had what I at first thought was him being milk-drunk, but it was w/ eye rolling, etc). I then called and FAXED the doctor about caracream (this was before there even was Zegerid!) and he said fine, as caracream is a what’s used WITH the PPI (not a substitue for it- just something used with it) to make a stable compound that tastes good. Plus, Caracream/chocobase was developed out of the U of Missouri, and coincidentally that’s where our ped GI went.

Ok, so after Jonah was maxed out on his prilosec dose for his weight (at that time there was no marci-kids and the ‘high’ recommended dose for prilosec was 1-3mgs per kilo and for prevacid it was 1.5mgs-3mgs per kilo – look how I know that by heart!) and once again I was FREAKED out, I mean here’s a baby that is on both zantac and an adult dose of prilosec, what could possibly help my poor baby? The ped GI said some babies do better w/ one PPI over another, let’s try prevacid.

Sometime in here, I decided to rule out the possibility of mspi. I really didn’t think that Jonah had it, but I was desperate. I breastfed Jonah so I did the Dr. Sears Elimination diet for 2wks. My husband, god bless him!!! did it along with me, as he only thought it was fair (well he got to eat ‘normally’ out of the house, but still!). I was very glad I did the diet bcse I did find some things that I ate that affected Jonah, just not the ‘major’ proteins of milk and soy. (the ped GI by the way, humoured me but I don’t think he really believed that the food I ate affected Jonah…).

Ok, so meanwhile Jonah was on prevacid with caracream and doing better. via faxing the ped GI he had his dose increased until he was at the max (3mgs/kilo)…finally at about 4 months things were looking better. I had a happy baby hidden underneath all that shrieking!!!

Eventually we could stop the zantac. We used it at night a lot for break-through acid. there was a time we used carafate, too, at night…

I found the love of babywearing throughout all of this. And of course, this board which I cannot get away from. At 9 months we tried to wean jonah off of the prevacid and it was a no-go. So we tried again at 12 months and were successful!! In retrospect we could have gone until 15 months but he was ok w/ zantac (& tums- he had teeth) as needed…

Hope this helps!

~laura

June 9, 2006 at 8:32 pm #9479

Anonymous
Inactive

Colton was diagnosed with reflux at 2 weeks old. He was given a barium swallow test and later an upper G.I. and scope. Colt was put on reglan and zantac. Well just after a very long week we noticed that the zantac and reglan didn’t do anything for him. We were lucky to find this site very early on. We found out that reglan was for motility issues and were told that Colt didn’t have this issue so we took him off the reglan and were given Prevacid solu-tabs. After two weeks Colt did show improvement on the solu-tabs but he would scream because he was hungry so I couldn’t keep him on the fasting before giving and waiting thirty minutes schedule. We contacted Dr. Phillips and he gave us all the information about Zegerid and how we would no longer be on a schedule and for us that was great. Colt was only 2 months old when we started him on Zegerid. Colt loves the taste and takes it with no problems. We were lucky because we have a family doctor who was willing to give Zegerid a try and was also willing to go by Dr. Phillips recommendations for dosage. Colt is almost 15 months and is still on Zegerid but our Dr. is very optimistic that by the time he is 2 that we will no longer need it.

June 9, 2006 at 9:45 pm #9487

Anonymous
Inactive

Hailey screamed non-stop (literally) from the time we brought her home from the hospital and needed to be held all the time. She always wanted to nurse for comfort, but she didn’t want to eat. She pulled on and off all the time. She choked and sputtered, milk came out of her nose, she had stridor. We paced around the house all day and night with her for 2 months, until one day our feeding difficulties turned into a feeding strike. We went to the doc and were diagnosed with reflux (which I started to suspect at this point because of the swallowing sounds she was making). We tried Zantac for a week, but it tasted so awful that I couldn’t even get her to take it without vomitting it up. The next week we tried a losec compound. We tried this for 4 months, gradually increasing her dose to 20 mg at 6 months. But there was little improvement. During this whole time, she started to develop Sandifer’s. She was still screaming day and night. Wouldn’t sleep. Needed to be held, but you couldn’t hold her because she was arching so badly from the reflux. I BEGGED 3 different doctors (including our ped GI) to up her losec to the marci-kids dose but they wouldn’t agree. I brought research, but no one would look at it. We are in Canada so zegerid wasn’t an option and PPIs can only come in capsule form for the most part. The compound wasn’t at a high enough dose, and wasn’t being prepared properly so it wasn’t stable. The compound pharmacy argued with me constantly about this. The capsules really aren’t good for babies with feeding issues, because you can’t feed them on command, so you can’t time the meds properly. So I waited to see doctor after doctor begging for testing and for new meds. We tried domperidone but it did nothing. During this time, Hailey refused to eat. We had to feed her asleep and even that was a struggle. She wouldn’t take solids. She arched and cried during and after feeds. It was awful. It wasn’t until she was 9.5 months old that we finally found a doctor who would give her a try on prevacid at a higher dose, but still conservative for her weight. We also tried CaraCream since we couldn’t do zegerid. It was still difficult to administer because Hailey didn’t like the taste, but after two weeks, she finally stopped arching and the screaming stopped. She started moving around where she had previously had developmental delays. Once the pain stopped she was able to focus on being a baby, instead of just surviving. But the consequences of untreated reflux are still there.

THE BOTTOM LINE: Sadly, since Hailey had suffered for so long, she had developed a full blown feeding aversion that will take a long time to overcome. She missed out on nearly a year of her life. We were trapped in the house trying to sleep feed her all day long. She missed out on social interaction and now has issues with social anxiety. She developed muscle weakness from needing to be held all the time, which she is now just starting to move past. She will likely have speech delays from delayed oral motor use. If doctors would have listened to us in the first place and prescribed her a decent dose of medication then I truly believe that this could have been prevented. I don’t yet know if we are a success story, but hope to be one day.

s&h’s mum2006-6-9 21:46:12

June 10, 2006 at 9:09 am #9504

Anonymous
Inactive

Wow, your stories have made me cry!

But they have happy endings which can offer up hope to all of us!

Thank you so much for sharing these.

Keep them comimg! I think this is really going to help when I take it to he

doc!

Thanks again….so very much! HannahLove2006-6-10 9:9:38

June 10, 2006 at 9:50 pm #9541

Anonymous
Inactive

Truman was diagnosed with reflux at 2.5 months. He was initially put on a very low dose of Zantac by our pediatrician. When that did nothing she allowed me to increase the dose. Small improvement but not enough. She referred us to a pediatric gastroenterologist. I was hoping he would prescribe a PPI but he only increased the Zantac dosage. Again, improvement but not much. Truman was still crying, arching his back and it seemed like the Zantac only lasted 5 hours tops.

I finally got the ped gastro to prescribe the Prevacid and Truman did not respond well to it. He had what looked like bad abdominal cramping, so after three doses I stopped giving it to him. He seemed like he was in a lot of pain–but it wasn’t the same pain as the reflux, and the cry was different.

I found this website and educated myself on Zegerid and pushed and pushed for this doctor to prescribe it for him. I faxed dosage information as well as some of the research from marci-kids. He finally relented and prescribed it.

I must say it took a full two weeks to get real improvement, but it did happen. And now its like he doesn’t have reflux at all anymore. Unlike Zantac where I was trying hard to stretch the doses out to 8 hours (and never making it past 5 because he was screaming so), I can go beyond the 8 hours without any consequences with Zegerid. He truly is a much happier baby on it.

Its a pain to get it prescribed, but its so worth it once you do. Good luck!

June 11, 2006 at 7:39 am #9546

Anonymous
Inactive

Hi,

Good luck getting Zegerid perscribed- the right dose is key! It has been a lifesaver for us

My little guy, Haden is now 7.5 months and was diagnosed with reflux at around 6 weeks. Although, looking back he had it from day one but it was all new to me, so it took many hours of research, finding this wonderful forum and phone calls to my doctor to get a diagnosis. On Jan 24th I finally got Zegerid perscribed. Before this we tried compounded Prevacid flavored (that did almost nothing), we then went to the Solutabs (very hard to time the 30 minute mark, etc.- didn’t see very good results-seemed to just take the edge off) During these trials of medicines we were still using Cherry Mylanta Supreme and Pepcid along with the PPI. A “cocktail” of different medicines, but not enough of one to make a differnce.

Those beginning months were very difficult- I remember saying to the doctor if Haden is not screaming in pain-he was either sleeping or I was doing something to keep him from crying (swaddling, shhsssshing, rocking, babywearing, etc.) Riding in the car was a nightmare. Oh,,,,those memories….

Since getting the Zegerid (Jan.) we have not had to give any Mylanta or Pepcid. He is pain free and we saw results almost immediately. Some things I have learned with the Zeg- give 3 times a day it really makes a difference in your overall 24 hour coverage, dose and mix based on the Marci kids website, give it minimum 2 weeks to work- slowly but surely it does get better. I would hear that over and over during those first months- it was hard to wrap my brain around that! But, it DID get better- hour by hour, day by day!!

Haden started solids at around 6 months and the PPI has helped to control the reflux during this and teething. I still see “signs” of the reflux at times- not very often ( coughing, sometimes has a gurgle or rattle sound with no cold, face rubbing) but seems to be truly pain free. A very happy, healthy, active baby!!!

We have a GI appointment at the end of month and she has mentioned possibly starting to wean him off of the Zeg. I’m not sure if he is ready for that- we’ll see.

Remember the coupon on the Zegerid website. I have been able to use it 3 months in a row. It really is a big savings!!

Best of luck!

June 12, 2006 at 11:54 am #9610

Anonymous
Inactive

Emma was diagnosed with reflux at 3 weeks. We have never had any tests done. I took her to her ped and she started her on zantac. She had all the typical reflux symptoms; crying nonstop, not sleeping, arching her back, refusing the bottle, spitting up, occasional vomiting, etc…. Of course the zantac wore off, we went to pepsid, then prevacid packets. I seen a difference with the packets, she was at least starting to eat but she was still a very cranky baby. The prevacid packets are so dependent on food and we could not wait the 30 minutes, by then she was crying so hard she would throw up. It just wasn’t working. We switched to Alimentum formula at 5 months and that helped a lot. Finally at/around 9 months I found the greatest ped GI on earth. I took all the info from the marci-kids website with me and asked her for Zegerid. I am from MO and dr Phillips from the site works in Columbia MO and my GI knew all about him and was willing to let me try it. She had never put anyone on it before. It was our miracle drug. She has been reflux free ever since she has been on it (We seen a difference within the first week). My GI doc has put several babies on it since and has heard nothing but positive reactions. I don’t know where we would be without it. Good luck!!!
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