Infantreflux.org | Never ending

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December 8, 2006 at 8:48 am #19802

Anonymous
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I am so tired. I am tired of feeling tired. I am tired of feeling like I have half of a brain due to exhaustion. I am tired of having to ignore my daughter because Jacob is having yet another acid fit. I am tired of doctors telling me they are baffled by my son. I am tired of waiting for useless doctor’s appointments. I am tired of worrying that something serious is wrong with him. I am SO tired of complaining about this. I am just over it all. And the worst is when you feel you have run out of options….all that we’ve tried and nothing has worked. I just don’t what to do anymore. And how I can get him to sleep…he does okay from about 9 to 12 and then we are up for the rest of the night. He bucks around and arches his back and literally looks like a fish out of water. I just don’t know what to do for him (or me) anymore. I know there isn’t much anyone can even say – jsut needed to vent, I guess.

Johanna

December 8, 2006 at 9:15 am #19803

Anonymous
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Just wondering, have you tried Mylanta? Abby for a couple of weeks was having a hard time getting to sleep and we started giving Mylanta just before we laid her down and (I don’t want to curse things here) but she has been falling asleep great ever since.

It is so hard being a mommy to a little refluxer but know you are doing a great job. It may not seem like it sometimes, but Jacob is a very lucky little guy to have you for a mommy.

Robin

December 8, 2006 at 11:14 am #19812

Anonymous
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Thank you, Robin….although I feel like he isn’t all that lucky nowadays, as I have been really losing my patience. Makes me feel bad.

Anyway, not only have we tried Mylanta (didn’t work), but he is also on carafate….doesn’t seem to help either.

I just feel like NOTHING is going to make this nightmare end. I feel like we are out of options.

December 8, 2006 at 11:35 am #19817

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Maybe an H2 blocker at bedtime? I’ve read a few posts of moms who’ve said their babies needed an H2 blocker to prevent break through acid at night. The makers or Prevacid admit that there is some break through at night, but I think it’s usually between 3 and 4 am. Anyway, I tried searching for some of the posts but I’m lousy at searching and couldn’t find any. Maybe some one else remembers the details. I think the moms were giving Prevacid twice a day, the last dose at around 3pm and then Zantac or Pepcid at bedtime and they found their babies slept better.

How is he during the day? How long has he been on Prevacid?

I used to get impatient with Myles, too. And of course I felt bad. You probably just need a break to re-engergize yourself from time to time. Do you take any time for yourself?

December 8, 2006 at 12:10 pm #19819

Anonymous
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Sorry to hear things are so bad. Boy do I understand how you feel. Has he had any testing done? Maybe that would be the next step to give you some answers. Hang in there.

December 8, 2006 at 1:08 pm #19822

Anonymous
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Tay has been on compounded prilosec since she was 1 month old, she hates the taste and everytime she is sick is always, she just cannot tolerate the extra fluid from the compound. We switched her to prevacid recently, much easier giving her prevacid but it didn’t seem to work on her at all. I can hear her refluxing like crazy and very fussy and not sleeping. We switched her back to the prilosec and she is doing much better. I guess what I’m saying is not all PPIs work the same on each child if you are still having problems maybe see if you can switch PPIs to see if it makes a difference.

December 8, 2006 at 6:19 pm #19857

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Boy do I hear ya. Justice has never slept well. I nurse him all night in bed just to get every 2 hours. Now he is sick and for the last two days he has been waking every 30 min. Nothing makes it any better. At first it was an ear infection. Well today is day ten of his antibotic and things are only worse. We went into the doc today and the ear infection is gone, but he has a temp and some inflamation in his nose. Also she said what is probably bothering him the most is his reflux. He doesn’t really want to eat which scares me since I’m breastfeeding. I worry about my supply. I think I will be okay though as long as he nurses at least 5min every few hours. Now I’m honestly considering just not leaving the house until winter is over. I can’t take him getting sick again. I’m sorry for all your going through. Just know your not alone. You know what really stinks is that we all live so far from each other. it would be nice to hang out with someone who has a baby like mine rather than my friends whose babies sleep so well. I just don’t know what to do anymore. Sorry to steal your post. I have just been feeling the same way today. I just don’t feel like I can do this anymore. I am so sick of being a monster.

December 8, 2006 at 11:44 pm #19880

Anonymous
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Johanna- You sound like a great mum to me

1) you worry about making sure your children get love- some don’t even care

2) you wait hours for appts you know will end up being useless (from experience)- some don’t even bother going

3) you worry about your son and care that he is healthy and happy- some just leave them to raise themselves.

Don’t underestimate the value of what you see as normal- these things are all signs of you being a great mum. So you might get a little crabby at times- who the bloody hell doesn’t!!! (we are allowed to say this word in Aus- its even in our ads- hope no one’s offended)

(Ditto above to you Shelby- monsters do not care about their children in the way that you do)

I have never felt love for children like i have when reading these boards.

On the more practical side, like Christine suggested, have you used a combination with Zantac. I use both zoton (prevacid) and zantac (max dose of both)- neither controls things 100% but both together makes Alana so much better. She’s got a touch of gastro at the moment and even though she’s sick it is still controlling it. If I miss a dose of zantac though things go down hill a little. Mind you when I read about your struggles Alana’s struggles don’t seem that bad. Do you think that it would be worth a trial doing both?

I am sure you have tried all these things,but heres some of the thinking I went through with Alana. Does he seem any better when on some paracetamol- could he have some stomach cramping or something? Regular stomach massage could help with that- Alana loves it. I swear by her chiropractor as well- she cried a bit at first but always feels better after- not hawking the trade but have you done any complementary stuff like this?

December 9, 2006 at 3:57 pm #19918

Anonymous
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Johanna,

Hang in there, and know you are not alone. I think we’ve all felt the same way. I told someone the other day that I spend half my day frustrated at my son for all his crying and not sleeping, and the other half I spend feeling guilty for getting frustrated at him when he can’t help it. It gets better… I keep telling myself this. It did with my daughter, and now I am so blessed by her every day. I look back at that time when things were at there worst with her, and it seems like a little blip on the screen… I know the days seem interminable now, but they do pass, and he is growing and maturing.. your daughter is learning valuable skills by entertaining herself and learning that other people need attention too (I keep telling myself this too!). You know, with all of us reflux mommies out there, why the heck isn’t there a real support group anyway around? We could all use some time I think to interact with others who know exactly what we are going through. Not to mention the fact, that it’s been ages since I’ve had some adult interaction!!!!

December 10, 2006 at 8:01 am #19942

Anonymous
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Therese – what is “paracetamol?” I use Mylicon sometimes because he gets awful gas pains/gas (only in the middle of the night thouhg)?!?! I don’t get that!

Also, I would love to try some zantac or pepcid in combo with the prevacid, but the doc won’t give it. Can anyone tell me exactly what their prescription for these meds says on it? I know this is awful, but I may call a doctor friend of mine and have them call it in for me. I will do anything at this point! And, thank you for your kind words. I love my baby so much – I just want him well.

Naomi – I haven’t ever looked into a support group? Are we sure none exist? Does anyone live in the Atlanta area??? We could start one! And I am with you on the guilt – I am always feeling guilty after I get upset with Jacob because he feels badly….like he can help it?!?! But, let’s face it, a crying/fussy baby is hard to hear – even when we know what the problem is! It just grates on my nerves sometimes!

December 10, 2006 at 8:02 am #19943

Anonymous
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Oh – one more thing – to Christine:

How is he during the day? How long has he been on Prevacid?[/QUOTE]

he has okay and then really bad days – no pattern that I can tell. He has been on the prevacid for about two or more months now….

December 10, 2006 at 10:05 am #19953

Anonymous
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I think it’s a great idea to ask your doctor friend to call in a script for Zantac. Some babies need both the H2 Blocker and the PPI to get full relief…especially at night.

Laura’s intro link has info on Zantac dosing. He’d probably just need one dose per day. Just make sure it’s high enough for his body weight. If you get the script then I’d post a question to moms using both PPI and H2 Blockers and see what times they are giving the meds. I think most are giving the PPI twice a day and the Zantac at bedtime…..but I’m not positive.

December 10, 2006 at 4:18 pm #19971

Anonymous
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Paracetamol is tylenol. I just wondered because if it is stomach cramping or intestinal cramping causing pain it might settle him a little?

I only give PPI once – in the morning- then give zantac later in the day (I don’t give it at the last feed because I have found it doesn’t really change things for better or worse- however, Alana is a good sleeper at night so it might be different for someone who doesn’t sleep well).

As I have posted elsewhere I am a big fan of the Zantac efferdose or effervescent tablet as it is called alternatively.

Alana is about 15 1/2 pounds and she takes 1/2 efferdose tablet per day which is = to about 75mgs. I divide it into two though- which is just a habit really. After xmas I am going to try giving it to her once. If on the syrup I think it would be about 1 1/2 mls x 3.

December 10, 2006 at 4:56 pm #19976

Anonymous
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Have you tried Nutramigen?? Also I have noticed that premixed formulas are a definite no-no for my little guy.
I too tried ALL the formulas… this one worked the best for him.
So sorry but I am right there with ya.

December 11, 2006 at 2:21 pm #20047

Anonymous
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Hey, I was thinking about you the other day. When do you dose the Carafate and the Prevacid? My son was on both for awhile, and we noticed that his spit ups really reeked of acid. I talked to the pharmacist and he said to be sure to space them a couple hours apart because the Carafate coats the stomach, so if you give Prevacid too close then it won’t be absorbed and won’t do its job. Just a thought…
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