Confused – what would you do?

[Anonymous]

Well, we never did start the Neocate…she wouldn’t take it, even mixed in with her other formula (which wasn’t going very well anyway). I made my own rice based formula and she refused that too.

Last Monday night I stood in the baby isle at the drug store, waiting for DD’s prevacid to be filled and I was in tears. My DH called me on my cell and I could hear DD screaming – I knew she was hungry but everything either made her sick or she wouldn’t eat it. She had not eaten in at least 12 hours. She was refluxing horribly too. I calmed down and knew I was at the end of my rope. I closed my eyes and silently prayed to God. “Dear Lord, guide my hand, there is nothing left to feed my baby girl. Guide my hand to something she can eat as I have tried it all.”

I picked up a can of a different brand of soy (she had been on soy for a week), got my prevacid, popped a xanax to be ready for the screaming at home and left.

She has been perfect ever since. She had a few bad times while the old formula got out of her system but after that it has been perfect. 3 hour naps, 11 hour sleeps at night….happy, normal poops… everything.

We stopped the prevacid yesterday to get her ready for her tests in the hospital Thursday and Fri. (endoscopy and ph probe).

Now I know once the prevacid is totally out of her system all hell could break loose, but so far, she has felt better than she ever has in her short little life.

Our GI doesn’t understand why this is working and our homeopath has said that the allergy wasn’t soy but was to additives in the other brands of formula.

Am I getting my hopes up? Would you still do the tests if she is still doing perfectly? I feel she is soooo young to be sedated. I am very conflicted. My DH says we can always schedule the tests, why not wait? My friend says do it now and not waste anymore time. My gut says to wait. *sigh* I am so confused.

Maybe this is in the wrong forum but you ladies have been so great to me as we have gone from milk to goat to soy to neocate and back…. Any and all opinions/advice are welcome. I just dont’ know what to do….I am breathlessly waiting for the other shoe to drop….

If nothing else, thanks for listening. YOu ladies are just the best!!!

[Anonymous]

I would keep the appointments only because it has been such a difficult 4 months and we would sometimes experience this “honeymoon period” after trying something new, and then gradually go back to the bad spells. Just my opinion, but you need to do what you and your DH are comfortable with……

I am glad that she is doing better, though!

[Anonymous]

I’d do the tests, too. I haven’t had to experience the endo or ph probe, but most of the moms who’ve posted about them here have said they weren’t bad and the answers were all worth it. Having answers means an awful lot.

[Anonymous]

Go for the tests. Not to be negative but we switched from Neocate to Alimentum and back a few times – each time, we had a honeymoon period and then all hell broke lose again… you need the results to get on with the proper treatment

[Anonymous]

yes i agree with the honeymoon periods….we had them as well. then things got even worse.

[Anonymous]

Well, the honeymoon is over…the shoe dropped…. we are officially back in hell.

I just had such high hopes. In we go on Thursday. In the mean time what can I do to make her comfortable since she can’t have any prevacid or mylanta???

I am so grateful to have a fresh RX for xanax…. I’m not kidding either. Isn’t that sad?

I just started to think – hey! maybe there isn’t anything wrong! Maybe I imagined 3 months of hell! Maybe it *was* just in my head. Maybe our Ped was right – I”m crazy! Nope….. how will I cope till we get this all over with? How can I watch her in pain for the rest of the week?

I have to find a way to get her to take the neocate – I ordered those flavorings from that natural company and now they are here…maybe I’ll try that.

I just can’t believe how stupid I am for thinking it was all better. I should know better by now!!!!

what am I gonig to do???

[Anonymous]

Can you do tylenol? I know, not much help, but it should help a little with the pain… Not sure if you can’t do anthing prior to the tests…..

Hang in there, and no, it is not sad about the xanex comment. Going through this is really he**. I think I would try the Neocate with the flavor, but if you do make that switch, I would commit to two weeks at least. It really does take a little while to see for sure what changes are working and are not.

I am sorry this is so hard. I just remember feeling much like you do and it is just exhausting. Hopefully the tests will give you answers and she will take to the flavored neocate….

[Anonymous]

Valerie,

I haven’t been around to know all that is going on but I did want to make a few comments:

1-

2- I know exactly how you feel with the xanex… For me it was/is Wellbutrin. Sometimes I feel like what you said – – that it’s sad that I need meds just to deal with “life” – – but then I have some great friends from another baby forum who tell me I’m being smart and that it takes guts to ask for help. Same to you babe! You aren’t alone but for you doing what you have to in order to keep yourself together.

3- Can you get Rachael to take cereal on a spoon? I just thought about this today when I was posting with another Mom about cleft lip/ palate but my niece (18 years old now!) had a cleft lip and they did surgery when she was 6 – 8 weeks old. After that she could not suck and the only alternative the doctors presented my sister was a feeding tube. Well, she fed Kathleen cereal on a spoon for 2 weeks and the doctors were amazed that she actually gained weight! They said most babies who have that surgery LOOSE weight until they can suck again. Maybe you could do this? I don’t know…

4- Just another

[Anonymous]

All I can think is – if she is ok on the prevacid then why do the tests??? SHe is already back to screaming hours at a time and has only been off the prevacid for 2 days. I just don’t know how I can cope with this. And the sedation…she is so young to be sedated.

What can they find with the tests? I hear you all loud and clear that we should do them…maybe we should. Why wait any longer I guess.

thanks for listening…she is calming down.

Here’s prayers that all your little ones have a good night’s sleep!

[Anonymous]

Hugs and prayers for Rachel.

[hellbennt]

a hug to you!

why do tests? well some reasons may include:

finding, through biopsies done during the endo, whether or not their are eos cells and, the endo can also tell you if there’s esopogeal thrush, irritations, etc

ph probe can tell you how often baby is refluxing & how long each episode lasts: gives you a good ‘picture’ of what’s going on…

[Anonymous]

I would do the test even though the prevacid is working for the reasons that Laura stated above. We were never offered the option of the testing for Alexis, but I would have really like to know how much damage her reflux did to her esophogus and how much she was actually refluxing so we could get her on the proper medications. I know the sedation is hard but I feel that she is in so much pain now, the testing could only help answer some questions of what is going on with her poor little body.

[Anonymous]

ohhh, im so sorry that you are going through this. i am going throught the same thing. dd is on neocate but just started having alot of mucus in her poop, and she is still in pain some days, i just don’t know what to do anymore. as far as the test is concerned, i wish i could get it done with my daughter but they wont do it. so basically i would get it done to rule out anything.

As far as the zanax, i know how you feel. i cant’ go a day w/o my klonopin. when i don’t take it my dh says “oh mommy hasn’t taken her medicine yet” im not condoning controlled substances…… ha ha yes i am. but hey someday i would like to get off the stuff and try natural stuff… but for right now it’s drugs

[Anonymous]

I am really glad I found these forums because it really makes me feel less alone when I see that others are also having such trouble with this….not that I am by any means happy that ANYONE has to go through it! I try to explain it to friends, family, etc and they just don’t get how awful it is. Anyway, to make you feel better I think I have started to have mild anxiety/panic attacks in the last few weeks because of the stress of this reflux cr**! I am thinking I may need to get some zanax for myself! Really, sometimes I just have to laugh! Will it ever end???

Johanna

[Anonymous]

Johanna,

I can totally relate….I used to have little panic attacks as feeding times approached becuase they were so horrendously stressful, and when things were at it’s worst I used to actually dread my baby waking up at all because when he was awake he was crying or screaming. I was nursing (pumping, really) so I couldn’t take anything but, boy I would have downed a few Xanax everyday to get by if I could have.

And yes, it will end. It’s a long, hard journey, but fortunatley for most of us reflux does end, and ione day t will be nothing but a bad (ok, really bad) memory.

[Author]

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