At my wit’s end…

[Anonymous]

I just don’t know what to do anymore. My son was put on 15mg of Prevacid (he has Sandifer’s) about two weeks ago. It was helping, but not completely. My ped told me to try adding rice to his bottles and we did for a few days, but it just made him worse! Two days ago I stopped adding the rice and he’s still at the same place he was WITH the rice cereal. I just can’t believe this – I never should have added the stinkin’ cereal to his bottles. My ped will not increase his meds, so I made an appointment with a GI….but that’s not until NOVEMBER 16th! There was nothing sooner. I can’t stop crying! My poor little guy is in pain and nobody will help us! I just don’t know what to do. I really don’t.

Johanna

[Anonymous]

Remind me, what formula? Did you try Beechnut rice? Oatmeal is better for us, and maybe your son needs a different formula…..

[Anonymous]

Enfamil Gentle Ease….I am too afraid to try anything else at this point, but maybe I will try oatmeal if I get brave again. 🙂

[Anonymous]

I am so sorry you are going through this!! Boy have I been there. I have read your other posts also, have you tried Alimentum or Nutramigen?? Alimentum was a life saver for us. Does he have any mucous in his stools?

Beechnut is the best cereal/oatmeal since it is easier on the tummy, however why are you thicking? My daughter could not handle cereal/oatmeal until 8 months old. She spit up ALOT so I tried thicking at 4 months also and it was a disaster. It was just easier to deal with all the spit up then it was to deal with her having an upset stomach.

Is there anyway you can see another ped until you get into the GI or have you faxed your current doc the info from marci-kids.com to see if they will listen to you??

Also alot of parents recordered their little ones episodes on a tape recorder and taken it to the ped office to show them. This is just an idea and a never promote anyone to do this but can you up his dosage on your own? Do you have enough? Its just a thought and something that I have tried personally but if you can tape record him at his current dosage and then tape record him with the dosage upped and still have enough meds and then show your doc, I wonder what they would say. It just seems like when we are losing our minds we will try just about anything to help our babies. These are just ideas, but I wanted to pass them along incase you wanted to try them. I know how hard it is and alot of parents including me agree that 4 months is a really challenging time.

Good luck, your doing great, call the doc everyday if you have to!!!

btrue2006-10-13 12:57:54

[Anonymous]

I agree with Brandy on another formula. It could be the milk proteins that are giving your son trouble.

For us, thickening was a big help with both of my boys as they swallowed less air with the thickened formula because it had more texture and it kept the food heavier in their bellies. It was a big help for us. My boys were both prior to their due dates when we started thickening and they could only tolerate the thickened neocate. How old is your son?

I think I would call the GI and ask for the waiting list. Also, as ours said they didn’t have one, I called every day crying, (with Dylan screaming in the background) and eventually they fit us in that week. You may want to try that.

Hang in there!!!!!

Ann Marie

[Anonymous]

My son is 4 months old. I am not sure why the doctor recommended that we try the rice – I was assuming that a thicker formula would stay down better, but he does not spit up a lot to begin with. It totally backfired on us.

I haven’t ever noticed mucous in his stool, or any other of the typical symptoms of MSPI. You think I should try the Alimentum anyway?

I have already wracked my brain with ways to up the meds myself, but I will run out. I am going to consider tape recording him. I am also going to call the GI everyday. I may even make a sick appointment with my ped and beg her to up the dose in person. It’s always harder to say no in person, I think. Thanks for the suggestions.

Johanna

[Anonymous]

We had no typical MSPI symptoms either. Very little eczema, and no blood or mucousy stools, etc…. Just EXTREME fussiness, not sleeping well, generally very uncomfortable. Nutramigen made things better for us for both boys, but not all the way better. Once we went to Neocate, it was two weeks for Dylan to a brand new baby, and Carter was less than that.

If it were me, and they were going to make me wait that long, I would try the nutramigen. But, I would not thicken at first because I think you need to make one change at a time. Let us know what you try….

Ann Marie

[Anonymous]

Please on’t blame yourself….you followed doctor’s orders. And, some babies do fine with rice.

If he’s the same three days later, it may have more to do with his meds than the rice. I still wouldn’t go back to rice, I’d do oatmeal….but I think I’d try to find another doctor to try and get him on a higher dose of Prevacid. That’s what finally turned things around for Myles. It was pure h*ll until he was on the marci-kids dose. I felt the same way you feel ….I truly understand and I really feel for you and your baby.

November 16th is an awful long wait. Too long for a baby to have to be in pain. Is there another ped you could see until then? Or a family doctor? Sometimes family doctors are more open because they deal with reflux more and they are more knowledgeable about ppi’s. Myles doctor is a family doctor. Whoever you see, I’d advice you to print and bring along as much of the http://www.marci-kids.com information as you can. That’s what swayed my doctor to give Myles the high dose he needed.

Good luck. I’m sorry it’s so hard. I hope brighter days are not too far off for you and your little guy.

[Anonymous]

Thank you so much, Christine and Ann Marie. I appreciate your help more than I can tell you.

Maybe I do need another doctor. I put a call into her today BEGGING for her to up the dose and that’s my last hope.

What would be the difference between changing him to Nutramigen/Alimentum verses going straight to Neocate?

[Anonymous]

I was all for going right to Neocate with Carter as it worked for Dylan, but the insurance company fight I think is easier if you do the nutramigen first. Then you truely have eliminated all other possibilities that might work. The nutramigen milk proteins are already broken down, so the baby’s body doesn’t have to do that work. Dylan and Carter were still sensitive to the small proteins and needed the neocate which has no proteins at all. The cost of the nutramigen is less than the neocate, but you might be able to get your insurance company to pay for them. They paid with Dylan for our neocate, but we have new insurance now that will not pay for Carter’s.

Hopefully the doctor will get back to you soon!!!

Ann Marie

[Anonymous]

johanna, i am with you on this one. my dd is 8 weeks. she is 10lbs and is already on the recommended marci kids dose for prevacid. you cannot give to much prevacid to them anyways. i deff would record the sandifers.

when my daughter was a week old we brought her to the er b/c she was choking on her reflux. that got us to see a specialist, fast. you need to tell them that youre baby is turning colors when the formula comes up. even if it’s just a little white lie. make it sound really bad. not that it already isn’t really bad, but they don’t care. you should also tell youre pedi the same thing. my pedi was worried about covering her butt and said that if anything ever happened to my dd then she would feel horrible. so if youre pedi has a conscience then she will get you to a specialist sooner.

basically what i am trying to say is to be as dramatic as you can. the reflux is not going to go away by itself. i have put my dd on every formula possible and it may have worked for a couple of days but then her sandifers/reflux would flare up again. allimentum may help but for us it didn’t. i don’t care what anyone says i am going straight to neocate. sometimes i fell they should just do that in the first place b/c that seems to work for so many babies.

i hope that things work out for you please keep us updated.

sorry about the long post but i am in the same position as you.

as my fiancee always says”what do you do when you want somthing from me?” and i say that i make sure i get it!!! so he tells me “you should do the same with the doctors”

[Anonymous]

I agree with everyone!! I would give up on the cereal/oatmeal for now just to give him a break. Like Ann Marie said some babies do need it but if there is no reason he needs it and he doesn’t spit up that much then it could be creating more problems. That was definetly my experience. It is so hard to tell whether he will do better on the alimentum/nutramigen or neocate. Personally if I was to do it again, I would start with the insurance company and if they cover Neocate, I would go for it. Since it does not have any milk proteins that is one less thing to irritate him!! Good luck with getting the Prevacid upped!!

[Anonymous]

I also agree with everyone else. My son did not have MSPI but he was like a different baby on Alimentum. We also tried the gentlease and everything under the sun. What also helped us, we always bought the ready to feed. It is thicker than the powder and some babies handle the ready to feed much better since you do not have to shake it up. This also causes alot of air bubbles and tons of gas. We also add gas drops to every bottle he has. We also did not have to add the oatmeal since we used the ready to feed cans. Once he turned 6 months old, we went to Enfamil A.R. and he could then handle that and it was even thicker than the Alimentum. I hope that you can find a doctor that will up the dose. It made a huge difference one we went to 22.5mg of prevacid with Marshall.

[Anonymous]

I don’t have much help with the formula issue since we’re nursing, but for a month, our GI did have us try the Neocate. It didn’t help Aidan at all, but she’s not MSPI. We also tried the rice cereal, and we have ended up using the oatmeal because Aidan’s body handles it much better. (((Hugs))) I know exactly how you feel! It sucks watching your little one in pain, and not having people take you seriously about it. Our first GI completely blew me off after he hospitalized her. Once he cleared her for pyloric stenosis, then he just said “oh, she’s gaining weight. she’s not refluxing.” I can’t imagine where we’d be if we had listened to him! Mommy’s know best.

I agree with a previous poster. Maybe you should find a different primary care physician. Our’s is fantastic (he is a family doctor), and he’s been really supportive of this whole reflux issue.

[hellbennt]

to get insurance to cover:

Going to the Top: https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a mp;a mp;KW=going

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