Feeling Miserable

[Anonymous]

After reading back through all of the old posts, I feel so depressed at the thought of this going on for so long. I am so tired of the fussing, crying, and more crying. I am just tired. I feel like my DS will never sleep through the night b/c he is such a restless sleeper and seems unconfortable most of the time. I can hear “stuff” coming up and then he swallows it back down or he spits it out everywhere. How can he actually sleep through the night with all of this going on? He is on prevacid and neocate which has helped somewhat, but I know that it is going to be sometime before we are off this rollercoaster. I don’t feel like I have a life right now–can’t go anywhere–too afraid of him having an attack. How do others get through this without feeling so miserable? I know it will get better and I know it could be worse so I shouldn’t complain, just feel so down right now. He also seems to be a pretty intense baby with a bad temper. This combination makes it hard to determine when he is in pain or uncomfortable from the reflux or when he is just being demanding and tempermental. I know I am rambling on. Thanks for listening!

[Anonymous]

How long has he been on neocate? It can take 4-6 weeks before you see relief from it. What form and dose of prevacid is he on? If he is comfortable and properly treated he should NOT still be so miserable. Sure, you’ll still hear him reflux but it shouldn’t bother him. Things will get soooo much better once he is on the right meds and formula. It sounds like you’re on the right track…just might need an increase in dosage or different form of prevacid.

Sarah outgrew her reflux at 18 months…but that’s not a reason to feel like it’s never ending…Her reflux was under control at 4 months old and it was SMOOTH SAILING after that! Even though she didn’t ‘outgrow it’ for quite a while, that didn’t mean that every day was miserable until that point. She just became a “happy spitter”! Does that make sense?

HANG IN THERE! I totally remember how you feel. We never went anywhere in the midst of it all and I felt like such a prisoner!!! Hey, I just realized Sawyer’s bday is two days before Sarah’s! It was mid August w/ her before we finally got everything figured out…so hopefully you’re not too far off either!

[Anonymous]

Hi Amy,

Thanks for your quick reply. Sawyer has been on Neocate for about 3 weeks now. Also, the Prevacid was increased to 30 mg. 1 week ago. I am a bit nervous giving a higher dose of Prevacid than what is recommended by Marci-kids (which is 22.5) but thought I would try for a few weeks to see what kind results I have. He is taking the solutab and I make sure to give it on an empty stomach and then follow-up with a feeding 30 min. later.

I am glad to hear that Sarah finally had relief. Maybe I am getting close. When did she finally start sleeping through the night?

[Anonymous]

It sounds like time is all you need! Just give it a few more weeks…I know that probably feels like an eternity though! We had Sarah on zegerid (another PPI) and it was 14-17 days before we saw full relief.

My other thought is that the solutabs (I am pretty sure) contain a small amount of milk. If he required neocate, that small amount of milk in the solutabs might be upsetting him.

If I were you I would give it two more weeks and if things don’t seem to be improving, look into another form of prevacid. For us it wasn’t an overnight miracle. I slowly started to see changes (crying less and less, etc…) until things were perfect! Hopefully within the next several days you’ll start to see small improvements as well.

Sleeping through the night was never an issue for us (thank goodness!) Our problems revolved around short naps. Sarah required a TIGHT swaddle, bouncing on an exercise ball and sleeping in the swing for both nap and bedtime but thankfully would sleep longer stretches at night. Once she was properly treated all of her sleeping quirks worked themselves out and now she is a happy independent little sleeper!

Good luck and keep me posted!

[hellbennt]

demanding & tempermental? oh, mama, he’s so tiny!!

please just hold that baby. do what you can to make him comfortable.

it’s so hard!!!! I used to cry right along w/ my little one…

sleep through the night? every baby is different! even my little non-refluxer took quite some time before he could do this…

please focus on trying to fight for him to get the meds & formula he needs, rather than focusing on his supposed ‘bad temper.’

give the prevacid another week or two and if you need to switch, please read ‘Prevacid 101’ to learn about the different kinds…Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

also, please go check out http://www.askdrsears.com when you have a moment. it’s a great site and it should help you see ‘where’ your baby should be & when (as in sleeping through the night, etc)

hang in there!!

[Anonymous]

Depending on your view of sleeping through the night it may take some time. Technically sleeping through the night I believe is 5-6 hrs. For us that didn’t happen until 10-11 months… but I “babied” my baby in that I rocked him to sleep until oh about a month ago, partly me and partly him. The reflux stopped at about 12 months, but our spitting up stopped at about 10 months. All babies are different. Don’t believe those people that tell you that you are spoiling your baby. Do like Laura said… just hold and love that baby. I spent so much time last summer just sitting on my back porch with Cooper and crying… this was the only place I could take him that was secluded yet outside where he would not cry… so I took that time to cry myself. In hindsight… I should have just loaded him up and gone about my life… yes people will stare and make comments etc… but you can just say yea that darn acid reflux.. gets us everytime…Somehow we all have to find a sense of humor about it esp since we can’t control the actual spitting only the pain. You are on the right track.. try and stay positive.

[Anonymous]

I’m so sorry you and your little one are going through this! I think I actually wrote this exact same post more than once when my son was really little. I agree with Beth that you have to carry on with your life. I know its really hard. But you will feel so much better to be out in the sunshine or just out anywhere. I would be mean and chase the people that give you dirty looks or make comments in stores. Go up and down every aisle they do. That’ll show ’em LOL.

My ds is 7 months and he still doesn’t sleep all the way through the night. I think every baby is different. For us, right around your sons age was a really tough time for some reason. Hang in there!

[Anonymous]

Hi Everyone,

Thank you for the information, support, and encouragement. I was just having a bad day yesterday but I am feeling better today. Sometimes it is just hard to stay positive when you are so sleep deprived. I was actually doing some searching for Sandifer’s Syndrome yesterday and came across some You Tube videos showing Infantile Spasms (IS). IS is a very serious form of epilepsy with no cure that causes developmental delay to severe mental retardation. I now feel blessed that my DS “only” has reflux and MSPI. I hope this makes sense, it just really struck me that things really could be worse.

[hellbennt]

Babywearing: https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

[Anonymous]

Hi there,

I just wanted to say I have def written posts similar to this! The Neocate takes some time. And I know what you mean about stumbling across other things that brings you back to your knees and makes you thankful that it is “only” this or that. It happens to me too. Reflux & mspi is still very hard tho, and so is the sleepless nights and screaming babies. God gives reflux babies to the special mommy’s who can handle them, he knows which mommy’s they are. Hang in there- this too shall pass.

[Anonymous]

Thanks Jill! It really is nice to know that I am not alone in how I feel.

[Author]

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