What's Normal?

[Anonymous]

My baby is 7 months old and we have been dealing with colic and reflux since she was born. I finally stopped breastfeeding around 4 1/2 months and since then she has been on Alimentum, which has improved the reflux but it is still there. She has also been on Zantac, Prilosec, and is currently on Axid. It is the only one which has shown the slightest help. But she still arches her back, cries for at least three hours a day, has a lot of gas, only will eat 5 oz at most at a time, and stools are completely irregular (one minute diarrhea and another almost hard stools) and sometimes can go two-three days without one. What is normal and should I continue to talk to my pediatrician about this? They seem to think she is fine. The last couple of weeks she has learned to sit up on her own and that has helped some. She is still only sleeping (at the very most) 5 hours at a time (and that is pushing it). She used to only sleep maybe a half hour at a time before the Alimentum but after it increased to about 3 hours at most. I am exhausted still!!! Any advice? Is it normal for a 7 month old to still be refluxing this bad or is it something we are going to have to live with? I just feel sorry for her.

[Anonymous]

Do her stools have any mucus and/or blood? Does she have any skin rashes and/or eczema, does she seem to have a lot of stinky gas or tummy cramps? I ask because it is possible that even the small amount of milk in the Alimentum is still enough to bother her.

Or, it could be that she really needs a good dose of a PPI. You said you tried Prilosec before, but if the dose wasn’t high enough or given in the proper way, it wouldn’t help. Check out http://www.marci-kids.com for good info on reflux medication for infants.

[hellbennt]

hi & welcome!

I have a LOT to say & (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

Please PLEASE take the time to read/scroll/skim through the info from this link, as it truly will help you!

so glad you found us!

~laura

[Anonymous]

There is no blood in her stools but they can be very mucousy (sp?) most of the time or diarrhea or really hard. Her rashes have gone, but she is a very sensitve little one. She does have stinky gas and does have tummy cramps (I think that is one of the reasons for her fussiness).

The prilosec was given at the proper dose and it was given properly…it just didn’t do anything for her. She was on it for over a month and no improvement…she actually got worse.

I am due to talk to her ped on Thurs to figure it all out.

Thanks!!!

[Anonymous]

Good luck at your appt. I would definitely bring up the GI issues, her stools, the mucus, etc. It could be that she is dealing with an intolerance issue, and that’s why the reflux med wasn’t really effective.

[Anonymous]

Well we went to the ped yesterday. The doctor, who I have trusted for a long time, said she did not think it was an allergy or reflux. She said that one of the medications we tried would have worked and the formula is made for this kind of thing. I am completely irritated. She had us see a speach therapist and occupational therapist thinking that maybe there was something related to the swallowing that was causing all the problems.

The night before last (the night before the appt) our daughter was sitting in her Bumbo chair and had eaten a few bits of level 2 sweet peas decided she was going to stop breathing on us. She had her arms failing out and was starting to turn purple, I yanked her out of the chair…and she took a deep breath and did it again. This went one for probably less than a full minute, but seemed like forever…and it scared me so bad!

I explained this “episode” and the horrible screaming nights we have been experiencing to the doctor. She said she probably choked on her food and that because our daughter was not really spitting up in the office (she was actually doing great in the office) that it was probably not reflux because it would be hurting her ALL the time.

Well…after looking up infant seizures (because she did the breathing thing again after the appointment) I came across a couple clips of Sandifer’s. I feel like this is what has been going on with her since she was born. I feel awful and irritated that I have been trusting our pediatrician and not getting answers. She actually made me feel like I was one of those “crazy” moms who have nothing better to do but made their children sick. Personally I would like to get more than 3 hours of sleep at a time and when my baby is crying…I want to be able to console her.

So does anyone have any reccomendations? Do I get our daughter on video and take it to the pediatrician or do I skip her all together and go somewhere else. Do you think she could slowly have developed an allergy to the allimentum and all of a sudden her symptoms of reflux and the like are as bad as they can be? Is it normal for infants to have the majority of their reflux at night and in the evenings? Is all that acid (reguardless if she spits it up or swallows it before it can get all the way up) hurting her esophagus?

All I want to do is cry because our baby has been hurting so bad all this time.

[hellbennt]

It sounds like you’re irritated w/ your ped. I would look for a new one and also get in with a ped GI. there’s a link from ‘groupie intro’ where people have posted the ped GIs they like and don’t like…it’s called ‘looking for a ped Gi’ and it’s close tothe top of groupie intro…

it DOES sound like MSPI to me, maybe alimentum isn’t ‘enough’ and it’s time to try neocate or elecare. I think what I would do (and I am no doctor!) is to get baby on the http://www.marci-kids.com dose of PPI, given in proper form and administered properly, for a good 2 weeks. then, I would address formula change. you say you were giving the PPI properly, etc, for a month- so how was the Sandifers then? this should have stopped. or at least lessened the sandifer symptoms…

now what I would do is give the MAX dose of axid for weight, or even zantac, you decide:

Zantac dosing- my/other’s question (has axid & pepcid dose, too): https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

and start up the PPI again- give both meds for 2 weeks- just space the axid or zantac 4 hrs seperate from the PPI

[Anonymous]

Well little B has been put on omeprazole. It came mixed in a 2mg/ml solution. It is white and powdery and the bottom until I shake it up. She is not to happy about the taste. Is it normal to be mixed like this? Is is supposed to look like that? If someone could let me know I would really appreciate it

According to the websites it says that it does not have to be given in regards to meals but the pharmacist says it does. Also according to http://www.marci-kids.com she is only getting a third of the needed dose. She is to be getting 2mg in the am and 4mg in the evening.

She seems to be doing slightly better even after a couple doses of the medication but the sandifers symptoms are still present.

Is it common to come to your doctor and tell them this is what YOU think should be done about the medications? I don’t know how I should present the information to her. Any suggestions?

And hellbennt….thank you for your suggestions. When B was on the prevacid solutabs and the axid at the same time….we were not told to space them out 4 hours apart…which could have been the problem.

[hellbennt]

sorry to be a bummer/downer, but most often the compound (liquid like you have) is NOT made properly…

Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

and yes, unfortunately we have found we must TELL the dr what our babies need…

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

[Anonymous]

OK…well…a lot has happened in the last few days/week. Little B has been put on omeprazole….I talked to the Dr and explained that I thought it was too low of a dosage and she argued but I told her I was willing to find an alternate ped who would listen to her patient. I explained to her that I felt like I was being be-littled and not actually heard. I also explained that I felt like a crazy person after the last appt because she made it sound like I was making everything up. Well I got the little one’s Sandifer’s symptoms on video and our ped “believes” me now. She wondered if they weren’t real seizures and if they persist over the weekend we are going to get an EEG done (poor baby). She consulted with a new Ped GI that is a couple hours away (and B has an appt with her next week)….she said to UP the omeprazole (see we are ALL correct in fighting for our children). So we are going to see how that is going. She also got some blood work to see if she is currently having an allergic reaction to her formula. Not sure how that works, but hopefully it will work well and we can find out if she really needs to be changed to the Neocate. A friend of ours son was on it for 12 months after a 6mo trial of Nutramagen/Allimentum….and she had a couple of cans left.

Does anyone know if it is ok to use the rest of a Neocate can even after the expiration date? I know some medications/items are still good for up to two months, technically, after the expire date. Our insurance does not cover it “at-all” I am told. So that extra can would be a help.

Well I am excited to see how she does….I am exhausted and am anxious to finally be able to sleep knowing that she is feeling good.

Thank you again to all so far for all of your help!

[hellbennt]

bravo, mama!!!!!

we are here to support you!!!

not sure about the blood test, it sounds like RAST? you can do a search here but of course, again, it is not a definitive test as far as I can recall…

there are ALLEGIES and there are INTOLERANCES. your lo may not have an actual ‘allergy’ that may not show up in the bloodwork, but YOU are the mama and your lo may have an INTOLERANCE

Sheri’s allergy/intolerance explanation; https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

if you want neocate and feel it will help your lo, then GO FOR IT!

I would first give the PROPER PPI dose a good 2 weeks to see if Sandifer symptoms lessen, etc, and then after trialing medication, if you feel it’s time for neocate then GO FOR IT!

there ARE ways to get it covered! Going to the Top: https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;KW=going

keep up the good work!!!!

[Anonymous]

Our GI said it’s ok to use neocate up to 4 months past the expiration date listed. We’ve gotten lots of free samples that way(ones that are nearing exp. date anyway). Also, about the insurance issues, we have BCBS and they denied us every which way possible as well. We ended up hearing about a home health company called Apria that helped us get it covered at 80% under our durable medical equipment/supplies policy. HTH!

Good job in putting your foot down! Hope your GI is more open to your opinion! Good luck!

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