Infantreflux.org | Meds not working?

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June 20, 2006 at 12:52 pm #10108

Anonymous
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Since last weekend at bed time Connor takes his final bottle than screams in pain for a good hour or so afterwards. He lifts his legs to his belly and screams, cries, and makes some awful sounding sounds that are new.

Last Monday and Tuesday the babysitter said he did the same thing around 11 both days. At first we thought maybe his hernia was bothering him, even though we were told it wouldn’t hurt him unless it became strangulated. Well, he had the surgery Wed. Wed and Thursday night he did the same thing but we figured it was just post-op pain.

So now we are at Friday, he’s back to his normal self. He’s still doing it, sometimes once during the day but every night at bed time. Last night I felt horrible because he took his last bottle between 9 and 9:30. He was so sleepy, eyes heavy, rubbing his eyes. Every time he drifted off he woke up shrieking. This went on till about 11:30.

It seems like he gets some relief if we hold him in the reverse cradle and rub his belly or lay him flat and do “bicycle” legs. Although neither didn’t really work last night.

My mother in law thinks every time a baby cries he’s either hungry or has bad gas. She says he’s colic. I try to explain to her that he’s too old to all of a sudden get colic, but she doesn’t get it.

So now I don’t know, is it gas or reflux? We’ve been on the Zegerid for about a month now and it has been working great. He takes 4mls 3 times a day. He’s 14 lbs 6.9 oz. So, from what I figured out, he’s still on the right dose for his weight and age (5 months).

I’m concerned because when we did prevacid he was doing better than had obvious stomach cramps. It was different though, I think he was in pain more often and he was vomitting all the time

So, what do you all think this could be? Is it possible that my son’s system can’t handle PPI’s for longer than a month?

June 20, 2006 at 1:00 pm #10112

Anonymous
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Kristen:

Abby is on 4.5 ml right now for her morning and afternoon dose and we bumped her up to 5ml for the evening dose and she weighs almost 13 pounds. When we first started the Zegerid, Dr. Phillps said that the amount recommended is a “starting point”. Some kids may need more, some less. Ever since we upped her evening dose, she has been much, much happier in the evening and overnight. I guess maybe I am a bad mother, but I have upped the dose myself each time and when I go into see her doctor, he just says, so how much are you giving her now. He knows not to argue with me about the Zegerid and how you can’t give too much of it (within reason). Thank God he is understanding. I guess it is because he has been our main doctor for over 12 years. Abby is also extremely crabby and irritable if we don’t get her to bed early enough. When she starts rubbing her eyes, it’s bottle time, then off to bed.

Those are just my thoughts – hope something can get figured out

Robin

June 20, 2006 at 2:02 pm #10133

Anonymous
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I don’t think it’s likely that he cannot handle the ppi’s for longer than a month. I think it’s possible he has outgrown his dose. Maybe email Joel or Dr. Phillips and ask if they would recommend a higher dose for him.

I’m sorry that he is going through this now. It’s so hard when they are doing well and then take a turn for the worse again.

Just a thought….my husband has a hernia which he refuses to get repaired. Anyway, he clearly experiences pain when he over eats. Maybe his hernia is bothering him when his belly gets full.

June 20, 2006 at 2:34 pm #10142

Anonymous
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Thanks Robin and Christine,

I think I will email Dr. Phillips, maybe Joel will pop on here too.

Christine-I know it’s no longer the hernia because he had that repaired. As for your husband, I had a hernia repair 2 years ago, an femoral hernia…the surgery and recovery is really no big deal. But I think you may be talking about a hiatal hernia? Connor didn’t have that.

June 20, 2006 at 11:53 pm #10180

Anonymous
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What about gas from his formula? Could that be causing his pain?

Colic or other issues???—- this is a great website to help you determine between them…

http://www.disa.com.au/

Helped me out a lot. And they have tips on what to do with an upset baby.

June 21, 2006 at 6:43 am #10182

Anonymous
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Amy,

I’m not so sure it could be either…he’s been on the same formula since he was 4 weeks old and my doc says colic goes away by 3 or 4 months, you can’t just get it after that.

June 21, 2006 at 7:21 am #10185

Anonymous
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It’s a dairy-based formula he’s on, right? Could the milk proteins have
built up to an intolerable level in his system? Is it worth asking your
doctor about trying something like Alimentum?

June 21, 2006 at 9:46 am #10196

Anonymous
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It is dairy-based…Similac NeoSure.

Can milk proteins all of a sudden build up and cause an intolerance at 5 months?

I’m going to bring him to the ped tomorrow. Ours has off on Wed, we could see the other one, but than I would have to explain EVERYTHING from start to finish. I rather wait one more day for my ped who knows Connor and me.

We did try Alimentum once before and there was no differene, he didn’t care for it much. I will talk to him about trying that again.

I’ve been emailing Dr. Phillips back and fourth too, he’s so wonderful, he’s trying to help me figure this out. Last night was so bad for my little guy. He actually ate 8 oz (usually eats 6-7) napped till 8 which is normal. When he woke up he was shrieking and crying. It was like a switch went off at 9 pm. 9:45 final bottle, ate only 2 oz, by 10:10 shrieking and crying again. I don’t know, it’s just so frustrating. Part of me thinks it’s reflux, another teething, but he wont’ take a teether, just sucks his hands, and another gas.

June 21, 2006 at 10:18 am #10197

Anonymous
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Kristen:

With Abigail, she had been on soy formula since early March then in late May/early June, she started with the diarrhea which progressed to vomiting. When we took her into the pediatrician, he said he thought that she was intolorant of soy and that it took that long for it to build up in her system enough to cause problems. Since we switched to Alimentum (thickened with 1tsp rice cereal per ounce), the vomiting has stopped, spitting up greatly reduced and poopoo becoming a little bit better. I was very hesitant to even try Alimentum as it is so thin but with the rice, it has been great. My ped also really encouraged smaller amounts, more often. Sometimes this works, sometimes not. She was a little piggy yesterday afternoon and evening – 4 ounces at 4:00, 4 ounces at 6:00, then 5 ounces at 7:30. Didn’t seem to bother her though and off to bed. Hope you can get something figured out – isn’t it great to be able to get Dr. Phillips input on these issues?

Robin

June 21, 2006 at 10:30 am #10198

Anonymous
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Are you using the powder Alimentum? If so, if you make it in the blender it comes out a bit thicker.

You have me thinking now. Connor has been having some poopey that’s almost diarrhea. He will have a “hard” one than later a really soft one that’s a little watery. He’s only been doing that since his surgery so I thought it was just the anesthesia leaving his system.

What are other milk allergy signs I should look for?

June 21, 2006 at 10:31 am #10199

Anonymous
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One more question, if it’s a milk-protein allergy, wouldn’t he have these “fits” more often instead of just once a night, or as for last night, twice a night?

June 21, 2006 at 10:37 am #10200

Anonymous
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Other things that told my ped it could be the soy intolorance was that her poop was really mucousy and stringy(I know, really gross) and she was doing it at first 1-3 times per day, then it progressed to 3-5 times, then on to 10-12 times. This happened over a period of about 3-4 weeks, then the vomiting started. Not with every bottle, just once a day or so, then gradually, it became more frequent and she was very uncomfortable.

As far as the Alimentum goes, we do use the powder with the rice cereal and just shake it together in her bottle. So far it has worked really well (has been on it almost 3 weeks).

Good luck at your appointment tomorrow!!

Robin

June 21, 2006 at 10:42 am #10202

Anonymous
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Robin,

Alimentum is so expensive. Is your insurance covering it? If you need it, I have a number for a company that has a list of insurances they accept, which is alot, and will take care of all the insurance stuff and deliver a months worth of formula to your door. I gave it to someone on this board at one point and it worked for her.

June 21, 2006 at 10:53 am #10203

Anonymous
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I checked with my insurance and they said they do not cover it. I did, however, get money through the Children’s Miracle Network. I have posted all the info for that under Miscellaneous: Going to the Top. I got $500.00 from them which really will help out. It is about 3 months of formula. Alimentum is about double the price of regular formula so I guess it’s kind of like getting help for 6 months, as I would have had to buy formula anyway. I may try the APRIA option at a later time but for now, we are doing fine. Abby had her 4 month shots yesterday and the nurse gave us 4 cans also so that really helps as well. We don’t qualify for any other types of assistance so any help is appreciated!! $23.99 for a can that only makes 110 ounces (I think) gets kind of crazy. But if it helps, I am willing to do whatever it takes .

Hope things improve for you!!

Robin

June 21, 2006 at 11:04 am #10204

Anonymous
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Oh that’s right, I can’t keep things straight!

When you are about to run out I would definately call Apria. They told me that many insurance companies will tell patients that they don’t cover formula when they call themsleves even though they actually do cover it.
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