Infantreflux.org | I feel like I'm in Hell

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November 28, 2007 at 10:58 am #45853

Anonymous
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Just when I think things are getting better and life is becoming slightly more normal- it all goes to hell.

My son’s background story is here

https://www.infantreflux.org/forum/forum_posts.asp?TID=9695

He is 3.5 months old now.

We finally saw the GI specialists a couple of weeks ago. They were very good and agreed that he needed a higher dose of meds. They changed the dosing of his Prevacid to 15mg in the morning and 7.5 mg at night. I always give it to my son 30 minutes to an hour before a feeding.

They also switched his forumla to Alimentum.

His feeds are thickened with oatmeal (since rice cereal was constipating him). We use Dr. Brown’s bottles and burp him after every ounce or two. We also use Mylanta up to 3 times a day.

Since changing to Alimentum and increased Prevacid, at first I was seeing great improvements but now things have taken a turn for the worse.

Even though he seems happier and has less crying fits and choking/gulping episdes, my son is spitting up more than ever. I must go through about 4 outfits a day on both him and I because we are always covered in it. He soaks through all his bibs. The new hypoallergenic forumla smells so disgusting when he spits it up. It’s very depressing because I’m afirad to leave the house with him or take him anywhere because I don’t want him throwing up in his carseat or in public.

For the past month he WAS sleeping 7-9 hours a night on his tummy https://www.infantreflux.org/forum/forum_posts.asp?TID=9771 now suddenly for the past week he keeps waking up at night. He will go to bed peacefully, only to wake up crying one hour later (just long enough for me to think he is asleep for the night and get in bed and fall asleep myself) He does this 4-5 times per night now (which is worse than his sleeping patterns when he was a newborn!)

The night waking is just the worst. Last night he went down at 9:00pm, woke up at 10:00pm, went back down at 11:00pm, woke up at 12:00am, then again at 1:00am, 1:30am, 2:47am …until FINALLY going to sleep in his swing at 3:00am.

I don’t know what to do. I’m exhausted and disgusted and wondering why my husband and I ever disrupted our peaceful lives and why we did this to ourselves. Then I feel guilty for thinking such a thing because it is not my son’s fault that he has reflux. Without it, he would be the perfect baby- he tries to be happy- and when he is waking at night it is just as bad for him as it is for me. It’s clear that he is very tired and very uncomfortable. His body jumps and he rubs his face in my shoulder over and over. I am so tired of seeing my baby in pain.

I’m just so sick of getting my hopes up and thinking he will get better- only to regress to a such horrible place. He did not even wake up this often when he was a newborn.

verykeri

November 28, 2007 at 11:46 am #45855

Anonymous
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I am so sorry that you are dealing with this. My son is the same age and we are dealing with the same thing! I wish that I had some advice, but I am also at my wits end! I just wanted to reach out to you and let you know that you are not alone. I think that the 4 month mark is often a tough one for a lot of people. So, maybe our babies’ reflux is peaking?

One thing that you said really struck me- you said that your son keeps rubbbing his face into your shoulder. My son does the same thing when I am trying to get him to sleep. What is that?

November 28, 2007 at 11:53 am #45856

Anonymous
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I know what you are going through, and please don’t feel guilty about your feelings. Sleep deprivation stinks, to say it politely, and I feel like I am changing into a different person. I try hard to be a pleasant and happy mommy despite being awoken every hour or so each night. My son is 4 months next week and was doing well on zantac until 2 weeks ago. Now, he can’t sleep for longer than 3 hours at night and often wakes every hour or so. The best is when my mil says, “You are too sensitive. He will be fine. Welcome to motherhood.” I feel like yelling, “What about all the babies that sleep atleast 5-6 hours straight at night!!” I know my baby will eventually be fine when we figure out the meds (He has an appointment with a GI on Friday) and I hope I will too. On top of this all, I got engaged, married, bought a house, and had a baby in less than a years time! Thank god my husband is an angel and helps me whenever he can. So much for the honeymoon period!!! All I can say is that you are definitely not alone and only those us who have high need babies know what a chanllenge it is. Don’t you love it when other moms complain about how tired they are and you know their babies sleep all night long!!

Hang in there!

November 28, 2007 at 1:27 pm #45859

Anonymous
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Keri,

I’m so sorry things have gotten worse, but don’t give up!! You are on the right track and you’re going to find the answers you and your little guy need.

I wanted to let you know that my son saw basically no relief on Prevacid until he got up to 30 mg/day at 2 1/2 months old. Any good days prior to that were flukes. On 30 mg, he’s been very happy but still sometimes wakes up early from naps in reflux pain (sudden screaming at the 30-45 minute mark). I’ve had to use trial and error to find out how best to give and divide up the 30 mg. At first, I gave 3 doses of roughly 10 mg each, but Nathan did not sleep well at all the entire day and night, despite being happy when awake. Then I switched to 15 mg in the morning and 15 mg at night about 2 or 3 months ago. Within 2 days, he was taking a very good morning nap (1 1/2 to 2 hrs) and sleeping great at night (on his tummy since about 10 wks) and has been ever since. In the afternoon when the first Prevacid dose is wearing off, he struggles to nap well, so I’ve been giving his Zantac dose then. I’m honestly not sure that it helps much, though. I wish I could give another 15 mg Prevacid dose, but I’m thankful to have a 30 mg prescription after much searching.

Anyway, it sounds like maybe 7.5 mg at one time is not enough to give your son relief?? Does he sleep well in the morning after the 15 mg dose? If so, I’d try giving the 15 mg at bedtime for a week or so and see if that helps the nightwaking. Then maybe push for 30 mg/day and experiment with how to divide it up. Also, my son is both milk protein intolerant and lactose intolerant, so he did not do well with the Prevacid solutabs. We had to switch to the powder packets, which do not contain lactose.

If after experimenting with a higher dose and different timings, then there are other formulas maybe you could look into?? Neocate or Elecare?? But I don’t know much about those, just mentioning it.

One last thing — my son started spitting up a LOT around 4 months, and I have no idea why. We used to go through the clothes and bibs just like you mentioned, but it’s calmed down a bit now. The main thing is to get them pain free so they (and we!) can get some sleep.

And don’t feel guilty about negative thoughts toward your son. Believe me — I have thought and said some HORRIBLE things in those early hard days. The bad thing is that I should’ve handled it better the second time around, but I didn’t. I’m ashamed of how I handled it, but I try to keep it in perspective and not feel too guilty. I’m sure soon these bad days will be just a memory for you, and you’ll be able to enjoy your son.

Good luck!!

November 28, 2007 at 2:02 pm #45861

Anonymous
Inactive

Paula,

You mentioned that your baby would wake up in pain from naps at the 30-45 minute mark. For my son it is the 40 minute mark. Is this the time that they are transitioning from deep sleep to active or light sleep? If so, they must not be able to resettle to deep sleep because of the pain.

November 28, 2007 at 2:22 pm #45862

Anonymous
Inactive

I’m sorry to hear things are so hard right now. I too felt like I was in hell with both of my reflux babies. The sleep deprivation alone is enough to drive you crazy. And I understand how hard it is to be tied to the house due to a constantly puking infant. With my son I never left the house for 7 straight months except for doctor’s appointments and to pick up my pre-schooler. It was a miserable existence.

Anyway, the way you feel is normal. Between the post-partum hormones, lack of sleep, and worrying yourself sick over a sick baby, who wouldn’t be unhappy? I used to question why I had another baby as well. Don’t feel bad. We all know you love your baby. You’re just in a miserable situation right now and you need to vent those feelings, so please feel free. I’ve sure vented my fair share on this site!

Anyway, my first question is…. what form of Prevacid is he on? And how long has he been on the 15 mg in the am and 7.5 mg in the pm? It can take two weeks once the right dose is started to see full relief from the pain. If he’s on the compounded version of Prevacid, let us know because that’s sometimes the problem.

Also, it’s possible he needs yet a higher dose. My son did not improve until he was on 30 mgs and he did best on three doses a day, so 10 mgs/3 times daily.

Another thing to consider is MSPI. Some babies with MSPI do fine on a hypo formula like Alimentum, but others need an elemental formula like Neocate.

What form of Alimentum are you using? The powder contains a lot of corn which bothers some babies. The RTF does not contain corn and some babies do better on it.

About the puking…..I truly understand how hard it is to deal with on a daily basis, but if he’s growing and gaining weight normally it’s really not anything to worry too much about and there’s not a whole lot you can do about it. My son puked entire feedings at least twice a day and threw up smaller amounts often. Some days he threw up every feeding. It was very discouraging and depressing, but he was on track with his growth and his doctor assured me that he would outgrow it and that as long as his weight was ok we didn’t need to do anything about it. PPI meds like Prevacid do not stop the vomting, they treat the pain of reflux, and sometimes babies will actually throw up more once their pain is under control. It does seem like your little guy may still be in pain though, because of the night wakings.

Oh, and like the previous poster said, sometimes there are peaks with reflux. I remember 4 months and 7 months as being the worse times for my little guy. Hopefully things will improve soon. Hang in there.

November 28, 2007 at 2:31 pm #45864

Anonymous
Inactive

Before I get going with my thoughts, I haven’t had time to read everyone elses responses so forgive me if I repeat something that has already been said. I understand where you are coming from. Keep in mind it will get better, reflux tends to peak between 4-7 months but in your case it could be earlier. The outfit changing I understand that all to well, we could change at least 5 times and usually 6 or 7 and I personally would change my shirt at least 4 times/day. Luckily now we just go through about 12-15 bibs/day more drool lately. The reason your lo maybe spitting more it b/c it no longer hurts b/c the meds and formula are doing their job… I know not really any consolation, but things will get better. Don’t be afraid to go out, it only makes things worse to be cooped up at home. About sleeping well… I feel like we have a good night when I can count on 1 hand how many times I got up with him. Cooper usually wakes 30-60 mins after we put him down, but usually it is because he needs to burp. Our toughest time is 2-4 am and sometimes 5-6 as well. At 3.5 months we weren’t medicated right so he was up every hour (that was if I could get him to sleep without dh or I holding him). Things do get better I promise, but in our case they got worse before they got better, but when I think about where we were at 3.5 months and where we are now at 9.5 months… boy things are way different. Hang in there.

November 28, 2007 at 2:46 pm #45866

Anonymous
Inactive

Thanks everyone. Even knowing that I’m not alone and that someone is listening, is a comfort.

In regards to the questions:

*I have been using the Alimentum powder

*He is taking the Prevacid solutabs- not the packets

*He has been on the Alimentum and the new dosing schedule for 2 weeks

His pediatrician origionally prescribed him 15mg of Prevacid one time a day. After reading the Marcikids website and using their dosing recommendations, I increased his dosage to a half tablet (7.5 mg) 3 times per day.

When I went to the GI specialist they agreed that he needed a higher dose, but said it would likely be more effective if I gave him the full 15 mg tab in the morning and then half tab (7.5mg) in the evening.

I will definitely ask about the corn content in the forumla, the lactose in the Prevacid solutabs, and the chance of increasing his dosage when the GI people return my call.

Sometimes I feel like this whole thing is a cruel science project and a constant trial and error roller coaster, all at the expense of our sanity. I wish my son could find some relief because as soon as he does, so will my husband and I. I just wish we could find the correct balance in his treatment to make a positive difference.

I noticed this morning after giving him the 15mg of Prevacid on an empty stomach that he got so tired and took a 1.5 hour nap. He slept through a feeding. He seems to sleep best when is stomach is empty and after a full tablet.

November 28, 2007 at 2:55 pm #45867

Anonymous
Inactive

“The reason your lo maybe spitting more it b/c it no longer hurts b/c the meds and formula are doing their job… “

I actually wondered that. Before he would make a choking noises with screaming fits- now those noises are gone, and have been replaced by the increased spitting up and sleepless nights.

November 28, 2007 at 4:55 pm #45871

Anonymous
Inactive

I’d really consider trying the RTF Alimentum. Quiet a few moms on this site have found the corn in the powder to be intolerable to their infants and they did better once they were on the RTF.

Good luck and hang in there. You’ll get it worked out. I remember those “science project” days, but once I found the key elements to helping my son things really got better.

November 28, 2007 at 8:02 pm #45881

hellbennt
Keymaster

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

November 28, 2007 at 8:22 pm #45886

Anonymous
Inactive

Not sure if anyone mentioned this yet, but reflux peaks at 4 months, so that could be it. The fact that he is happy during the day is a good thing. It may be that he’s not getting enough coverage during the night, or it may be that he’s just being disturbed by the reflux at night even if it’s not hurting him. It can be annoying to have vomit come into your throat when you’re sleeping, even if it doesn’t “hurt” per se. You might want to try something like mylanta during the night wakings and see if that has any effect. I know how terrible the sleep deprivation can be, to an extreme. It certainly is nightmarish and exhausting. Good luck sorting things out.

November 28, 2007 at 9:30 pm #45889

Anonymous
Inactive

Hi Luzaria — I’ve read that a newborn’s sleep cycle is approx. 20 minutes long, while an older baby’s is 30-60 minutes. For many reflux babies, it seems that when they do manage to finally fall asleep, they can only sleep through the first cycle and then the pain wakes them up. For both my boys, waking up with sudden screaming at the 45-minute mark is tell-tale reflux pain.

Verykeri — I just wanted to add that very few babies are actually lactose intolerant, even if they’re milk protein intolerant. So hopefully your son will be able to stay on the solutabs, which are much easier to give than the packets. Both my boys happen to be extremely lactose intolerant, though (my 2 1/2 year old can’t tolerate dairy at all and drinks only soymilk), so we saw more improvement on the Prevacid packets. Good luck!!

November 29, 2007 at 2:32 pm #45910

Anonymous
Inactive

Hey! I think everyone has covered anything that I would have added, so I just wanted to offer my support. I totally remember that helpless, guessing game, and I just want you to know that it DOES get better. Hang in there, and take it one day at a time.

November 30, 2007 at 10:00 pm #45974

Anonymous
Inactive

Reading your post reminds me so much of my son and his problems. He will be 8 months on Dec. 14th, so we’ve been battling this for a while. We are on 15 mg of Prevacid twice a day. Recently the G.I. switched my son to the Similac Alimentum. At first I thought it was helping, but my son is now spitting up everything. It is awful and I’m at my wits end. He has had a horrible time spitting up from three months through now. I feel like it will never end and he’ll never get the help he needs. The Alimentum stinks so bad. You can smell him from his room as I’m walking up the stairs. It is so yucky. I wish I had something to say to help, but I’m just as frustrated and don’t know what to do. I looked in the pantry today. We have so many cans of formula that he’s tried. I’m afraid to throw them away because maybe they’ll put him back on one of them. I also look at all of the unopened cans and I don’t know what to do with them. I’d pay any price for formula if it would help him. Sorry to ramble…it’s been one of those days! I hope your baby feels better soon!
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