I am at wits end AGAIN.

[Anonymous]

So those of you who read my post in Medicines know that we are trying Prilosec since Zantac dosage is maxxed out. We had tried Prevacid Solutabs previously and it caused terrible gassiness waking at night screaming etc. I was so hopeful that this time it would be different, but it is not. I am sitting here crying because Tyler has woken up 4 times tonight screaming arching burping farting – you name it. He woke up screaming for both of his naps today and yesterday. He never did this even at his worse reflux.

The 2 things that kept me sane throughout the past several months is that Tyler was an awesome sleeper and that he did not seem to cry with reflux pain. He would be fussy and whiny and arch and wiggle while awake but he slept better than any healthy baby I have ever seen and now that is gone too.

Everytime I try to help him it makes it worse. I am still giving him his Zantac so even though the Prilosec is probably not working yet the Zantac was still working moderatly well for him 2 days ago and I refuse to beleive that it is a coincidence that the Zantac wore off at exactly the same time as I started the Prilosec and caused the exact symptoms that the Prevacid caused. It has to be a side effect.

Obviously if it is a side effect I can take him off the Priolsec but where the hell do I go from here? If he is maxxed out on Zantac and can’t tolerate a PPI how the hell am I supposed to treat him until he grows out of this? It could take another 4-12 months for him to outgrow this. What am I supposed to give him?

Zantac at the right dosage makes him reasonably comfortable. It is not perfect he still arches a few times in a day and is sometimes whiny and uncomfortable – he is far from “normal baby” – but with Zantac, careful positioning and careful feeding – he sleeps well and he does not scream in pain. But even that is not an option anymore since we can’t get a higher dosage of Zantac so what am I supposed to do?

Do I just need to face the fact that moderately comfortable is the best that it is going to get for him until he outgrows this? Maybe I need to give up on making him normal and just face the fact that he and I both are going to have to live with slightly abnormal. I just have a hard time knowing that he is uncomfortable to any extent EVERYDAY and that I cannot seem to do anything to fix it. I know that children are going to experience discomfort throughtout their lives and I can live with that – but every damn day is too much to bear. That is why I am really crying right now – not because he woke up 4 times but because I can’t fix it. I spend hours reading, reasearching, going to the peditrician, going to specialists, burping him, planning his day to make sure that he is positioned well, not putting him in the car too soon, holding him upright after every bottle, keeping him entertained to distract him from the discomfort, being careful about what solids I am feeding him- and all of this is for nothing because no matter what I do nothing makes it right. Sometimes it makes it a little better for a little while but ultimately I end up back here – crying on this damn forum because we are right back where we started from. I want off this damn roller coaster.

Sometimes I feel like I am losing my mind. In some ways I think it might be better if his reflux was so bad that he did not gain weight and screamed all day – at least then there would be no question about how aggressively to approach it. But when the reflux causes discomfort but not screaming writhing failure to thrive pain you have to evaluate how far you should go to fix it – especially when the fix causes more problems than the problem.

Thank you for listening to my nervous breakdown.

[Anonymous]

Well, I do think you need to try not to focus on making him “normal” – I think
coming in with that sort of expectation is only going to put too much
stress on you and him.

However, I do think that with the right formula and meds, you can have
him at least moderately comfortable and maybe more – he shouldn’t have to be in pain. How long did you
give the Prevacid last time? I’ve heard others say that it caused their
babies gas until their systems adjusted after a week or even two.

I think Tyler may do very well on a PPI, once his system adjusts to it.
Maybe some others can chime in about what PPIs their babies did best on?

Good luck – I hope Tyler feels better soon!

knb182006-6-6 9:53:20

[hellbennt]

it seems with every adjustment, whether it be formula or medication, or anything, really, that 2wks seems to be the ‘measure’ of when you can tell how a switch is working…

you DO NOT HAVE TO HAVE a baby in pain, nor SHOULD YOU.

what form of prilosec is it? caracream? if not I would go that route: find pharmacy (walgreens) that uses FlavorX flavorings & then contact joel or anyone at http://www.marci-kids.com to contact the pharmacist and to instruct how exactly s/he should make/compound the prilosec w/ caracream.

if after you’ve given prilosec a good fighting chance it still doesnt work, then there’s nexium and there’s protonix. you can do a search. other babies here have taken these forms of a PPI.

yes it stinks to have to go through all of this trial & error!!!!!

BUT, the end result will be a happy baby

~laura

[Anonymous]

Myles had definite tummy cramps on his first two weeks of Prevacid. I was scared too that it wasn’t going to work but I read here that it sometimes passes and it did with Myles.

I’m sorry things are so hard and I wish I had more advice, but it sounds like you’re doing everything you can do.

What about Zegerid? So many babies seem to do well on it.

[Anonymous]

Don’t give up!!! Although PPI’s are all classified together, what works for one may not work for another. I know when I had reflux I had to try four different ones before we found the one that worked for me.

Both my twins did not do well on prevacid. Actually, they seemed to do well on the powder in the beginning, than they got bad. After about a month the GI switched to solutabs, I only gave that to them for 1 day and that was because she made us not give the powder for the rest of the day on the day she switched them. By the time they had their first dose of solutab, they were happy babies, than they had the solutab and they were miserable 2 hours later.

Anyway, my point is, although I didn’t give the solutabs time, you should give the prilosec time. I figured, they had been on prevacid for so long, the form shouldn’t need 2 weeks to kick in. If prilosec doesn’t work, try something else.

I have been very lucky that Zegerid is finally the med that is working for both of my twins.

[Anonymous]

Shelly,

I’m so so sorry you’re going through that. I am in EXACTLY the same boat. I

wish I could tell you it gets better, but I haven’t experienced a “getting

better” so I can’t honestly do that. I can, however, say that you are a mother.

And that means that you are among the most strong, most patient, most

amazing people on this planet. You will figure this out; when? not sure.

how? don’t know. But you will, because you are Tylers mom. When moms

are ready to fall apart, we find one more bottle of glue somewhere. Because

we love our kids…and we refuse to let them suffer.

hope that helps

[Anonymous]

Erin:

Those have to be the most inspiring words I have heard on this board yet – I just made a copy to put by my favorite rocking chair.

Robin

[Anonymous]

Erin

Thank you so much. That is exactly what I needed to hear and I needed to hear it from someone who is going through what I am. It made me cry AGAIN! But this time good inspiring tears instead of ones of frustration and sadness. I am going to start searching for that “bottle of glue”. There has to be one around here somewhere! Thanks for listening to my nervous breakdown and for caring. I really appreciate it.

As an update – the Ped GI called me back and told me to discontinue the Prilosec and upped the Zantac dosage (which he told me he could not do before which is why we tried the Prilosec ) I am going to evaluate him on the increased Zantac dosage to see how he does and pray that he outgrows this before the dosage wear off again. ( unlikely – I know – but he is 8 months old so it is possible ). If not we will probably have to try the PPI’s again later for the third time- but if it is possible to keep him reasonably comfortable on the right dosage of Zantac then that is what we are going to do. I am just not sure if that is possible anymore or not. When he outgrows this I am having a NO MORE REFLUX party and you are all invited

[hellbennt]

shelly (& everyone),

to make you feel better, go surf through the whole ‘Hip Hip Hurray’ section of the Forum- go back as far back as you can

~laura

[Anonymous]

I hope the increased Zantac works and that Tylers feels like himself again soon!

[Anonymous]

Good luck with the new dose!

[Anonymous]

I hope things return to your pre-ppi stage of equilibrium….but if they don’t, you might want to explore what kind of foods you have recently introduced, or look into using carafate, mylanta and other meds in order to keep him more comfortable at night.

I had a severe night-waker and can totally relate….keep pushing to find solutions, babies should not wake screaming multiple times a night nor should you have to watch him go through that pain.

Other options….probiotics, aloe vera, chiropractor adjustments and assessments, allergists and testing…. Trust me, you still have avenues to investigate if things keep going downhill. Keep us posted and I hope things improve!

[Anonymous]

Thanks Anne

Tyler actually is great sleeper even with the reflux – her hardly ever work from reflux. It was the PPI side effects that were causing the night wakings. This happened both times that we tried a PPI and as soon as we take him back off of it he sleeps great. He has been napping a bit less – but not waking up screaming just less interested in sleep than before – but I hear that is normal for an 8 month old.

It is the daytime that Tyler’ reflux is the worse. He is doing a bit better with the increased Zantac dosage. I am interested in the Aloe Vera though. He had developed a chronic cough. It is much better than it was – but still has a bit of it.

Has anyone used Aloe vera? Where do you get it? Any possible side effects? Was it effective?

Thanks

[Anonymous]

There’s a whole big thread on this. I’ll try to find it for you but I’m not good at posting links. Otherwise, you can do a search by clicking on the search button in the top right hand corner and typing in “aloe vera”. It was pretty recent.

[hellbennt]

to do a search: there’s the ‘search’ button located in the upper right hand corner of the screen

you put the key word/s you’re searching for

then you choose “Topic Subject” from the drop- down menu of “Search In”

then I like to choose “All Forums” from the drop- down menu of “Search Forum”

then I like to choose “Topic Start Date” from the drop- down menu of “Sort Results By” (this way I get all the posts from the past that might help me)

[Author]

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