So sick of wearing this baby!!!

[Anonymous]

Great news! Thanks for posting. It’s nice to hear when a baby is doing better! I hope Tess continues to do well.

[Anonymous]

Hi Karen, was Tess on Prevacid and then you changed to Prilosec? I just started Michael on Prevacid and he is also on the Zantac and his stool is o.k. I hope he doesn’t get constipated because that would only make things worse.

I am so very very happy to hear that Tess is doing a lot better. I know what you mean about the jinxing thing. When Michael has a good day, or even a good few hours, I try not to say anything bacause of the jinx thing.

How old is Tess and how long has she had problems with reflux. I am just curious to know. My neice had it and she grew out of it by 3-4 months. I am just hoping that there is an end to this soon.

Good luck and thank you.

[Anonymous]

Fantastic news – hope she continues to do well!

[Anonymous]

Teresa,

Tess basically had reflux from the day we came home from the hospital. I diagnosed it after about 3-4 weeks. It took me probably another 3-4 weeks and two pediatricians to get it officially diagnosed and start her on serious medication. We started with Zantac, then switched to Prevacid. Our doc didn’t want us using the PPI with the Zantac. We tried the Prevacid for 10 days and saw no results. Actually toward the end things were getting worse than they were with just the Zantac. I asked the doc about using both and he said no way. He also refused to up her dose of Prevacid. We were told to choose either the Zantac or the Prevacid. I decided to try both medications together anyway. This did not constipate Tess at all but then again I don’t think the Prevacid was working for her anyway. We did this for another 7-10 days while waiting to see a GI. He freaked out when I told him we were using both medications and gave us the script for Prilosec. Said to only use that. At the time I figured the Prilosec wouldn’t be any different than the Prevacid so I just stashed the script and we went to a higher dose of Zantac alone. That worked OK for another 3-4 weeks. Things got worse and we upped her dose again. Not much improvement so I broke out the old script for the Prilosec and it’s been working well so far.

I, too, had heard that some kids outgrow this by 3-4 months and was so hopeful. Alas, Tess is now 5 months old and we’re only now just getting it under control with medication. I don’t see her going off the meds anytime soon. As long as she’s not in pain I don’t mind doing the meds. As it is she’s on a lower dose than what she should be for her weight, even by our conservative GI’s estimate, so I guess that’s good. I hope you get Michael’s meds figured out. It’s so frustrating to see them in pain.

Karen

momtotess2006-5-31 21:5:55

[Anonymous]

Hi Karen, I still have to give the Prevacid time to work before changing the PPI. I have a 2 month visit with the ped on the 8th of June so we shall see what happens. At the present the only thing that is difficult is that he doesn’t sleep well, unless he is exhausted from crying or just staying up. The only thing that has gotten worse for us in the past 2 weeks is that he can’t/won’t sleep on his own. He must be in the arms. When he is in my arms I can at least rock him back to sleep when he wakes up after 1/2 hour of sleep. The problem with this is the middle of the night is tough. I am hoping that the meds start to help us as they did for Tess.

I hope Tess continues to get better.

Thank you

[Anonymous]

Teresa,

Tess was the same way – waking every 30 minutes – when the meds weren’t working for her. It’s so hard to see them like that. Have you tried Mylanta when he’s having a rough night? We slept, sitting in a recliner, with Tess on our chests until she was a little over 3 months old. It SUCKED. Naps were always with her almost completely upright in a wrap on us (and we couldn’t sit down or she would wake up). Sucked, sucked, sucked. She’s now sleeping in her crib on a Tucker wedge/sling. I’m not sure she needs it still with the better meds but I’m afraid to take her off of it. June 8th isn’t too far away. Hang in there and I hope both you and Michael get some relief soon.

Karen

[Anonymous]

Hi Karen, this is exactly what is going on here. I can’t accept that fact that I am medicating Michael and we are getting no results. I put him on Zantac on Sunday and I feel that he is getting worse. I might go back on the Pepsid. I put a call into the DR. today to see what I can do. I will give the Prevacid another week to see if it will work. If it doesn’t I am going to make an appt for another GI.

Yesterday was a really bad day and I was about to pull all of my hair out. I understand that time will heal all but it feels like time is moving slower than anything. I am praying that by 3 months I will see some type of an improvement.

Do you feel that if we find the right meds I should see an improvement by now?

signed….DESPERATE

[Anonymous]

Teresa,

You sound so much like me just a few short months ago. I am by no means an expert as I’ve only been dealing with this for 5 months but I can tell you my experience. I wish I would have tried the PPI sooner so you’re ahead of me in that regard. Give it time to work but definitely use some other meds in the meantime to try to get Michael some temporary relief. Have you had success with the Pepcid in the past? If so, go with that. Have you tried Mylanta at all?

Is your appt on the 8th with your pediatrician or a GI? If it’s just with your regular ped I might go ahead and get another GI appt set up. My thought is that you can always cancel it later if you decide you don’t need it but it seems that they can never get you in right away if you call at the last minute and want to see someone ASAP. So just get on their calendar for now.

I TOTALLY know what you mean about time dragging on. It’s so frustrating to think that you have to wait 1-2 weeks to see if something is going to work and then if it doesn’t there is another 1-2 weeks of waiting for the next set of meds to work. ARGH! All I can say is that I jumped around a lot between meds and doses and whatnot in the beginning and with hindsight I wish I had been more systematic about the whole thing. It’s like constantly switching lanes at the grocery store… eventually it just messes everything up and you end up waiting longer than you would have it you had just stayed put.

I would also say that go for any tests that the GI recommends/offers. We were offered an endoscopy early on. The GI that we were with at the time was a complete a$$ (IMHO) and didn’t recommend the procedure but seemed to be pacifing us by offering it. I wanted to try a PPI before doing what seemed like an invasive test but I realized later that if I had just had it done that many of the doctors we had to deal with probably would have taken us a lot more seriously. It’s sad that you have to prove that your child is worthy of attention but that’s how it is sometimes.

Lastly, if you don’t feel you are getting the treatment that you need from your doctor(s) find new ones. We went through 2 pediatricians and two GI’s before finding people I felt were actually listening to us.

Tess has only really been “good” for 3 weeks or so. It may take some time yet to find the right combination of medications for Michael. I know how hard that is to think about but just take it one day at a time.

Karen

[hellbennt]

After being on the board for jsut about 3 years now, I can tell you that you should ‘check’ your baby’s PPI dose, because oftentimes, it is NOT high enough to be effective!!!!(that face is for the doctors!)

PPI dosing chart: https://www.infantreflux.org/forum/forum_posts.asp?TID=2668&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1&TPN=1

[Anonymous]

Hi Karen, We had a pretty BAD night on Friday, so bad that we wanted to take him to the ER to get some tests done NOW. I called a new GI and the next appt isn’t until AUGUST. I laughed then called my PED and told them to get me in to this new GI earlier. I still haven’t heard back from anyone. My husband, my Mom and myself woke up on Saturday with the plan of going to the ER and demanding that a Ped GI see Michael. I then called our Ped and told them what we were going to do and they asked that we come in to see them AGAIN. Our Ped has 6 different doctors and I have seen two different ones and one nurse practitioner. This new doctor that we saw weighted Michael, he is now 12 LBS, and checked him thoroughly. He has no fever, his ears are o.k., his belly is o.k. and so is everything else. He is gaining weight so fast. They increased our Pepsid to .6ml and she told me to take him off the Previcid, I DIDN’T. Until I see the new GI I am leaving things as is. She also told me to give him Mylanta 3 times a day (as needed). Needless to say, we did not go to the ER.

Listen to this, after the doctor, which was 10:00 am, the remaining day and night (all the way through till 8:00am this morning) Michael had an EXCELLENT day. He slept for 3 hours then got up and ate (with no problem) then fell back to sleep within the hour. NO PROBLEM. I just don’t understand how he can have a day like yesterday and then wake up this morning to discomfort??????. Is this a sign that the meds are working? Or is this just one of those things?

I try not to get my hopes up on those good day because when the bad day comes my heart BREAKS even more.

I hope Tess is still doing better. I would love to see a pics of her if you can. I must say that before Michael I had no simpathy for new Moms but now my heart goes out to everyone, especially the ones with boo boo babies.

It is now Sunday and I let my Mom sleep a full and quiet night, my husband took over her spot last night. She now has him, since she is well rested, and I am going to nap now. I will check on line later tonight, depending on my little man.

Signed

Exhausted.

[Anonymous]

Hi Laura, I checked the dose of the PPI and it reads:

1.75 mg per KG (weight)

Michael = 12 LBS = 5.5 KGS which equals 9.6 mgs of prevacid.

I have been giving him 3/4 of a tablet (each tablet = 15 mg).

Do you think this is correct. He has been on it since May 27th. Do you think that I should see some results by now?

[hellbennt]

I’d give the whole thing- 1/2 in the am & 1/2 in the pm…

BUT I cannot tell you to go against your doctors.

way back when (3 yrs ago) the dosing for prevacid that jonah’s ped GI gave was from 1.25mgs per kg (on the low side) – 3mgs per kg (on the higher side)

so yes, 1.75mg per kilo is ‘ok’ (if it’s helping) however, there’s room to increase the dose… http://www.marci-kids.com recommends even higher dosing…

at 3mgs per kilo it’s 3 x 5.5 = 16.5mgs total on the day

I would try splitting whatever dose you’re giving him into 2 doses (even 3) bcse babies have fast metablisms and the meds go through their systems rather quicky…

I’d continue w/ the pepsid if he seems uncomfortable- just make sure you give it (& the mylanta) at least 2hrs seperate from the prevacid.

HTH,

~laura

[Anonymous]

Teresa,

I agree with Laura. I’d give him 1/2 the tablet in the am and 1/2 in the pm. And then use Mylanta Cherry Supreme or Pepcid mid-day. According to marci-kids he could be getting 10mg three times per day. Maybe print the information from marci-kids and take it or fax it to your doctor and ask for a higher dose if Michael doesn’t improve. That’s how I convinced my doctor to give Myles the higher dose and it made all the difference in the world for my little guy.

Good luck and I hope Michael is feeling better soon.

Christine

ndrose2006-6-4 13:51:46

[Anonymous]

Hi Christine and Laura, I will look into the higher dosage of meds. Tomorrow my doctor will call and I will go over everything with her. The only thing I see different with Michael is that the Pepsid helps him from spitting up. I don’t see a difference with the Prevacid yet (he’s been on it for 8 days now). I will try the splitting up system and see if I get results.

I am still going to a ped GI.

Thanks again

I hear him starting up again. He’s with my Mom since today he didn’t go down except when I gave him a bath and had to change him.

I get so confused with this illness because yesterday was a PERFECT day. Not one fit and he slept three hours on and he ate and when right back to sleep within the hour. He did this for 24 hours and then there was today; TOTAL OPPOSITE.

[Anonymous]

Teresa,

I agree with Laura and Christine about splitting the dose up. When Tess was on the Prevacid she also only got one dose a day. So now that the Prilosec seems to be working it’s hard to know if it’s the different drug that did the trick or the fact that the we’re doing two doses a day instead of one.

I have a hard time being assertive with doctors but if you can do it then certainly present the MARCI info to your doc. If they won’t go for a higher dose of the Prevacid you can ask to try Prilosec. I know from what I’ve read on these boards that different meds work for different kids. My own experience seems to indicate that as well but like I said it’s hard to know how much was due to the different dosing. It’s certainly worth a shot.

Tess continues to do well, although I think she’s outgrowing her dosage a bit. Nothing horrible just some increased fussiness during the day which could also be due to teething or something. I think we can make it to our next GI appt on the current dose unless her sleeping gets compromised.

I know what you mean about the good days throwing you off. Tess was like that a lot right before we started up with the Prilosec. We’d have a horrible day/night and I’d swear I was going to take her to the ER or be waiting at the ped’s office when they opened. Then the next couple of days would be OK. Then another bad one, then a good one. After about a week of that back and forth with some nights where she only slept in 30 minute intervals I got the Prilosec and said to hell with the docs I’m giving her the Zantac, too. Five days later we were off the Zantac and just doing Prilosec. She’s been fine ever since.

I really hope you find the right combination for Michael soon. It will happen – and it only feels like forever. Keep me posted.

Karen

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