Infantreflux.org | Things are only getting worse...

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October 18, 2006 at 5:16 pm #15998

Anonymous
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I am hoping you can give me some advice…. DD is now taking maybe 2 oz at a feeding totally 15 oz a day. This includes the 6 oz she will take sleep feeding in the middle of the night.

I am terrified that she is getting a feeding aversion. Is this how it starts? What can I do? Nothing is working… I ordered the neocate but it won’t be here till noon tomorrow and it is only 1 can.

I am at teh end of my rope… we finally gave the go ahead for the endoscopy. so far she has been gaining weight but I know that won’t continue on 15 oz a day… She was taking WAY more than that, almost double.

Please, any advice??

October 18, 2006 at 6:09 pm #16001

Anonymous
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go back on the goat milk and a really good vitamin drop?? at least until the scope?

October 18, 2006 at 7:02 pm #16005

Anonymous
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She’s allergic to the goat’s milk now. Once it built up in her system after 11 – 13 days the allergy showed itself.

I’m trying soy but it is even worse….

I have a recipe for rice milk formula but I don’t have all the ingredients..

For all those neocate users, how do you flavor it so they will drink it?

October 18, 2006 at 7:05 pm #16006

Anonymous
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i slowly had to intorduce the neocate and mixed it gradually with alimentum.
do you think she is not drinking bc of the falvor or because she is in pain from the GERD?

October 18, 2006 at 7:31 pm #16008

Anonymous
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she’s starting to show a lot of sandifer’s symptoms… she can take a little bit and then starts screaming in pain, arching her back, twisting around, turning her neck… it is horrible.

How do you order enough neocate to last a while? I mean you can’t just run out a buy it when you run low. Also, how long can it take to help?

thanks for any and all ideas. I just have no ideas left really.

October 18, 2006 at 8:03 pm #16009

Anonymous
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sounds like her PPI dose is too low in my opnion. have you asked the doc about increasing the prevacid dose?

i order two cases from the pharmacy which is 8 cans and i get that though WIC. i order 5 extra cans from sheild healthcare which our insurane pays for.

i saw immediate improvement within a day i think because my sons PPI dose was the marci-kids.com recommendation.

October 18, 2006 at 9:19 pm #16019

Anonymous
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Valerie,

I really don’t have much advice, but I just wanted to say that I’m sorry the goat’s milk didn’t work out and she’s in pain again. I hope and pray the Neocate helps her.

Also, I agree with Natalia….it might be a good idea to ask her doc for an increase in her Prevacid dose. Myles got absolutely no relief until he was on the marci-kids recommended dose, but once he was things turned around and he did great on it.

Good luck and hang in there.

October 19, 2006 at 9:45 am #16055

Anonymous
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Valerie,

I’m so sorry that you’re having hard time. That is similar to how Hailey’s feeding problems started, but I know that many people have been able to turn things around with a good dose of PPI.

Here is my thought: The compounded prevacid isn’t being prepared properly or stable. I see that you’re on 1.5ml’s 3 times a day. According to the marci-kids research, each dose needs to be at least 3.5mls to ensure that there is enough buffer to protect the drug from the acid in the stomach. Otherwise some (or all) of the meds will be destroyed before getting a chance to work. Also, the concentration should be between 2 and 4 mg/ml to ensure enough buffer per dose. If you are giving less than 7ml/dose then it needs to be prepared with at least 16.8 percent sodium bicarbonate, and NO flavourings whatsoever- this includes, simple syrup, sweet syrup, stevia powder and almost all other flavourings. If it’s made by those standards, then it will be stable for hopefully 2 weeks when kept in the fridge. Also, it needs to be shaken very well at each dose so that ALL of the white powder at the bottom of the bottle gets dispersed throughout the liquid. Our used to settle on the bottom, but the bottle was brown and I never noticed that it was caked on. So I would shake it well, I thought, but all of the buffer was still on the bottom.

I apologize if that information is repetitive, I just hate to see feeding problems develop, so I wanted to make sure that you had all the info. I’m sorry, but I can’t remember your whole story… Is it possible for you to try zegerid? We can’t get it here so I don’t have personal experience with it, but it’s worth a try. The compounded prevacid is so notoriously unstable and hard to get right (although I know that some have had success with it), that I would see if you can try something else. Solutabs might be another option if you can time her meals around the medications.

Also, I would try not to change too many things at once. Either do the meds (which I would suggest first) and then the formula later on, but not both or you’ll have such a hard time trying to sort out what’s what.

Good luck.

October 19, 2006 at 10:12 am #16061

Anonymous
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Aidan dropped down to 9 oz a day for about 2 weeks once. Never dehydrated, didn’t lose any weight, just wouldn’t eat. He doesn’t have any kind of feeding aversion, never did. I’m not sure if looking back, he had a cold, or was just going through a little stage or something. He has never taken more than 30 oz a day (30 was always rare), and his standard was 20-24, he also still only drinks 4-6 oz at a time. He inceased his intake to 24 oz when I switched him to lactose free formula (easier to digest). He just doesn’t eat much. I’m sorry I don’t really have any suggestions for you, just wanted you to know that I had a similar expierence with Aidan with taking in nearly no formula..He was around 4 months old when this happened.

October 19, 2006 at 11:46 am #16089

Anonymous
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Jill, were those values on feeds that were thickened with 1tb per ounce? If so, then he was actually on feeds that were 40 calories per ounce instead of 20 so he was getting twice the calories. So if he took 24 ounces then, calorie wise, it was as if he was eating 48 ounces. Maybe that’s why he didn’t take in that much regularly.

I think that your point is a good one- that sometimes children don’t take in that much, but it’s not a feeding aversion starting, it’s just the child. Also, Hailey never took in more than 20 ounces, for the most part we were somewhere between 14-16 ounces, and it wasn’t until much later (around 10 months or so that the feeds were hypercaloric). But feeding her was always a struggle and was horrible, and we were always worried about nutrition and dehydration. My advice, is that in general, it’s not the ounces as much as the behaviour that indicates a problem. If she is arching, twisting, having Sandifer’s, only able to take a few sucks at a time such that she can’t or won’t eat, then this is not normal feeding behaviour, but I’m also biased from our own experience. Good luck.

October 19, 2006 at 12:56 pm #16097

Anonymous
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I swear I am losing my mind. AT the peds office today he was like “well, she is off the charts, developmentally great and looks fabulous! Keep with the GI.” He was totally blowing me off and I am just furious. He is treating me like I am some nutcase. That just because she has overeaten in the past to try and settle her stomach/throat and gaining weight then nothing is wrong and she is “fine”.

She is not fine. They are starting to look at me like I am nuts. A few days ago my DS 2 1/2 shook DD and we had to take her to the emergency room. They called in a social worker. I was hysterical. Do I seem on edge? Do I seem kookoo? I’m sure if you were watching and hearing your baby scream for 7 hours a day in PAIN then you would be too. Xanax is my best friend. my poor DS has been a saint until the other day – ti was like the poor baby couldn’t take one more day of the screaming, one more day of Mommy having to take sissy to another dr., one more day of Mommy having to give sissy more attention because she is sick. My poor DS has started asking to go tot he Dr. himself!!! I am trying so hard to handle everything well and to be the best mother I can be.

How can I get our ped to take me seriously? We have an endoscopy next week and start neocate today.

Sorry to ramble but I am done. I am out of ideas, out of solutions, sick and tired of trying to get someone to listen to me that I am not crazy and that something is terribly wrong with my DD. We put her on soy for a few days to get her off the goat’s milk and she has stopped breathing 6 times. WHY WON’T ANYONE LISTEN TO ME? I swear the dr. thinks I must have Munchausen Syndrome..you know, making up crap just for attention. I can tell you nothing is further than the truth – I just want my baby to be happy! To have a normal life.

I need help. Serious help for my DD. I am hoping our GI, who up till now has been fantastic, can help us find some answers.

Off to get the neocate – the pharmacy just called…

October 19, 2006 at 1:14 pm #16099

Anonymous
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Valerie

Reflux can be so hard on babies and their families. Sorry i do not remember things these days… but do you have family close by that can help? When Matthew was at its worst, i went back to Spain to stay with my parents for about 4months and that is what saved me (we were living in NYC at the time and apart from some friends who all work or have kids, we had nobody close by and it was so hard on me). You need a break from time to time.

As difficult and devastating as reflux can be, a feeding aversion is just something i wished nobody had to experience – unfortunately we are still dealing with it BUT WE ARE ONE OF THE FEW CASES! So many babies have done great on Neocate (ok, i am going to refer to Laura’s intro again, but i believe that if is a true allergy you will notice a difference really quickly and if it is an intolerance you have to give it a couple of weeks), and have done great on the correct medication… to stop worrying about teh compounds we pressed our GI until she prescribed the solutabs… can you try that? Or the capsules if she is taking some applesauce. It is just so complicated that it was nice to know that i did not have to worry about that. Also, for several months, Matthew was on a high dose of prevacid + pepcid 2x a day… so you can always ask for an H2 blocker and give Mylanta as needed.

The endo should provide you with some answers hopefully. They will be able to determine if she is in pain from erosion, bacteria, allergy… please make sure they take some biopsies too (i was recently told that a clear esophagus does not mean anything and sometimes things come up in the biopsies). Will they do a pH probe as well?? maybe you need that too…. even when the acid is controlled, it is still uncomfortable to have stuff come up int your mouth and some babies just do not handle that well.

When you say she has stopped breathing what do you mean? Matthew choked a lot but he always managed to clear his airways…. so we were never concerned but when does your baby stop breathing?

When Matthew started having feeding strikes, i would just take him to the GI and feed him in front of her and then she would realise that something was off – can you do this?

October 19, 2006 at 1:38 pm #16102

Anonymous
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Oh boy do I hear your pain. My kids were 20 months apart. I think I missed out on at least 6-8 months of Sarah’s life trying to deal with this. It makes me very sad. But even though things still aren’t better, we’re the exception sadly, not the rule. And my kids now adore each other and are so sweet and it melts my heart every day.

I hope that this all comes out okay, because it can be so hard to convey tone online. I aplogize in advance if it doesn’t.

Your situation sounds very similar to ours, except that Hailey wouldn’t eat anything while awake, and everyone still told us that we were fine because she was gaining well and developing fine. Thankfully though she screamed non-stop every time we saw our ped, so he was concerned. But she was an angel at the GI’s office and so they never saw a problem. Even now, when my child has a serious feeding aversion, not one of the docs we’ve seen thinks that there’s a problem- except for our ped, and the GI who felt that our case was too complicated and transferred care.

Anyhow, I guess I’m trying to say that I’ve been there, and I know how hard it is and how rotten you feel. The best thing I can say is to ignore your ped when it comes to reflux (if you can do that) and let your GI- who you seem to be happy with- handle the care of all things reflux. I don’t know if that’s good advice overall, but some peds are more knowledgeable than others when it comes to reflux, and some doctors take it more seriously than others.

Every doctor we’ve seen has treated me like I was crazy, but what they don’t understand is that the desperation comes from having to deal with things day in and day out without anyone taking your situation seriously. I’m sure that it is written a million times on Hailey’s chart that I’m insane, but I don’t care. I know better, and you have to believe that you know better too.

Before you see your GI, can you prepare a list of your concerns, along with any video footage that you might be able to get? I’ve found that they take things more seriously when they have concrete issues that they can see first-hand. I actually nursed Hailey in front of our ped which is what made him realize that something was wrong. I would actually go in with a problem list and go through each issue and write down notes about what he was saying so that I could remember when I got home. I also would try to be matter-of-fact, and try to stay as unemotional as possible so that they would not try blame things on me feeling anxious or depressed. I found that my doctors were quick to blame things on my emotional state if I cried or couldn’t keep it together. Finally, if your doc won’t take you seriously is there another doctor you can see. I think that I’ve exhausted most of our phone book.

You mentioned that your daughter is going to have an endoscopy next week? Would they consider doing a probe at the same time? Then you would know how bad the reflux is, if acid is the problem etc. I have not had this test done, but I have been trying to get doctors to agree to do it. I think it can help to take some of the guesswork out of things, if there’s enough time to take them off the meds to get an accurate reading. I don’t know how long that takes.

Also, I don’t want to push the meds issue so I won’t say it again after this, but my daughter never got better on her compounded prilosec until we started following the rules for how to get it compounded. We were giving 0.5ml twice daily, and even though it was over 20mg, it was never enough buffer per dose. That wasn’t the salvation for us, but making that change did help a bit. If that’s not an option, what about the solutabs. It’s so much easier when you take the confusion of the compounds out of the equation. One less question mark.

Like I said, my older daughter was 20 months when Hailey was born and I literally had to carry her non-stop for the first 6 months of her life and even then she would scream and cry. Babywearing helped to free up my arms somewhat so that I could play with Sarah a bit at the same time. We used to dance around together and Sarah didn’t know that I was doing it really to calm Hailey and she would find it hysterical. Even now, the kids love to dance around and think it’s so funny. If your son is starting to lose his patience, whether it be from the constant screaming, or the natural overflow of attention that needs to go toward caring for a baby who is crying all the time, then he must be reaching his limit as well, but that’s nobody’s fault. Reflux affects everyone in the family. I don’t say that to make you feel bad because I had so much useless guilt when Hailey was at her worst. What I tried to do was that I had a set time every day that I would set aside as dedicated Sarah time and dh did the same. That way even though Hailey was always screaming in the background, Sarah knew that time was for her. I would also try to get someone to watch her when I had to go to appointments as much as possible so that she didn’t have to come along to them all. We also tried to set some time with her to get out of the house and away from the screaming- so I would take her with me grocery shopping and leave the baby at home with dh. It was a nice break for us both. I know it is hard and easier said than done.

Finally, you really do sound like you are at the end of your rope. Is there anyone who can take the baby for a bit so that you can get away and get a break? Dealing with a screaming baby can be so draining. Please try to take care of yourself as well.

Hang in there. The 4 month mark is bad for a lot of people. Good luck.

s&h’s mum2006-10-19 13:44:59

October 19, 2006 at 2:07 pm #16107

Anonymous
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First of all, thank you. Thank you for listening, for showing some empathy and for understanding. That alone helps.

Meds: I plan to push the GI for zegrid (sp?) or for the solutabs. however, I will say that her increased dose of prevacid is helping.

Feeding: she’s turning into a sleep feeder…. great going to bed, great in the middle of the night, ok first thing in the morning. Other than that, it is 2 oz here, 2 oz there, nothing more. Always ending up screaming, crying.

Food: The enfamil AR was a nightmare once the milk allergy/intolerance kicked in. I mean pure hell. The goat’s milk worked for around 11 – 12 days till that allergy/intolerance kicked in. I’ve got her on soy until we can get the neocate going and while she isn’t screaming 7 hours a day, she is having horrible reflux episodes where she chokes and gags and stops breathing for a few seconds. Wet and nasty rattle in her chest/throat. We have been thickening with rice cereal 1 tsp per ounce.

Bottles: we have tried it all (my ped said today that maybe it was all abottle/ nipple problem ) She will only take a playtex latex nipple. Nothing else. Her poor mouth can’t get a good suck/latch on anything else. Good news, the new gerber comfort hold bottles will take a playtex nipple. I am sick of those drop ins!!! Also, chiropractic adjustments have helped with her latch. We will continue with those.

Her mouth: her jaw and tounge constantly just hang open and out. She has very little control which makes the feedings that much harder.

THe GI: fantastic and willing to work with me and listen to me. I will probably also request the ph probe too. I need some answers. I call him and his staff and basically leave out the ped for now. However, since they see her gaining so much weight they are reluctant to say she has a serious problem….she is 4 mos old and 17.5 pounds!!! I keep telling the ped and the GI with all those thickened feedings who wouldn’t gain weight???

The ped: we need to have a heart to heart and if he isn’t on board then I’m changing peds. We dont’ vax so I have limited options there. I’d like to stay with him if he and I could just have a good conversation and clear a few things up. For now I am frustrated and angry with him.

My Sanity: I have so much support but our little girl is a mama’s girl and wants me over anyone. how can I deny her? I do try to get out for most of the day on saturday to get a break. Dh and I just decided after the ER fiasco to have a date with our DS once a week, just us, no sissy (DD). I am on xanax for PPanxiety/ panic attacks.

the video idea is a good one and I will start doing that along with a complete food/meds/reactions diary to hand over the next time I am in.

thank you soooo much. again, thank you. I feel like I just have to keep pushing forward for her sake, no matter what they think of me.

October 19, 2006 at 2:16 pm #16108

Anonymous
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OK – some thoughts… maybe MSPI but maybe the rice is also contributing to her system being off? What happens when you do not thicken?? Is she a spitter..?

The pH probe is always a good idea – again if she is refluxing all of the time she is not going to want to eat.

Has she had a swallow study??? Matthew does nto even choke and has never had a respiratory infection and has been seen by tons of therapists and STLL the feeding clinic is probably going to have us have a swallow study when we get there. YOu say she is uncoordinated etc and there may be something else going on

Even if she is mama’s girl, it is good to get time alone… with matthew, i could just have someone walk around with him while he was in his stroller and that way i had some time for myself
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Things are only getting worse…