Infantreflux.org | feel like i'm going over the edge....

This topic has 6 replies, 1 voice, and was last updated 15 years, 12 months ago by Anonymous.

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October 17, 2008 at 12:17 pm #57788

Anonymous
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ok, i just need to let it all out. i hope you don’t mind….

first off, still no sleep. he’s up every hour. yesterday i thought i was going to go out of my mind but managed to (just barely) hold it together. this morning i’m crying at every little thing! how did you all cope with the months of sleep deprivation? finn has been fussy all day as well. the only time he’s not fussing is if i’ve got him in the moby and i’m moving. well, i’m so tired that i can’t always be moving… this is new. he’s not usually this fussy.

i’m getting in with a new ped GI but have to wait for Medi-cal (state sponsored insurance in california). i won’t even go into the laborious details but the bureaucratic $#%^* is driving me insane!

i’m doing the NAET treatments which could take a while to work. now i’m starting to question whether anything will ever work.

we’re living in DH’s hometown for 2 months b/c he has work here. that means i’m also trying to understand the in-laws. they’re generous but i just don’t get them. today i needed a break, but MIL doesn’t like “driving other people’s children”. so….maybe later. also lots of advice. i’m so sick of hearing advice from people who know nothing about reflux. i feel badly, because i know they are well meaning….but….ugh. i’m just exhausted.

and (thanks for reading this far!!) my mom died last year while i was pregnant (stage 4 cancer). right now, i just want my own mommy!

October 17, 2008 at 1:15 pm #57795

Anonymous
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Colleen,

I feel so bad for you! I just have SO been there and so many of us can relate. The sleep deprivation is the worst and then on top of it, having a fussy, inconsolable baby during the day when you are a zombie. I felt SO cheated during my maternity leave b/c I spent EVERY WAKING MOMENT with a miserable baby and a toddler that just wasnt getting enough attention. Also, trying to research, find a good GI, getting unsolicited advice (haha- yeah, I can relate to that too!!) and then I had to go back to work and that is when Landen’s feeding aversion started up b/c I could not find a doc to medicate him properly. I would have to set my alarm for midnight and 4am to sleepfeed him and then he would wake a million other times but not want to eat, just wanted to scream and writhe in pain. I soooo feel for you.

I know I sound like a broken record, but NONE of it stopped until all of stuff that bothered landen was complety out of his damaged GI system and he was on a high dose of a PPI. When I went back to work, he was on Neocate only, but the missing link was that he was on a mid-dose of a PPI. It was not until he got on a high dose that I had a new baby. And we had to wait waaaay too long for that!

It’s really hard. I always ALWAYS say this: God gives these babies to the moms he KNOWS can handle it, anyone else would just break down. You will get through this!!!

I don’t know much about NAET, so I can’t comment much on that. Maybe you can try TED from square one (I know you are thinking hush up …easier said that done!) I admire ANYONE doing TED…believe me!!!

October 17, 2008 at 1:27 pm #57797

Anonymous
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Hi Colleen,

I am so sorry about your mom! That had to be so hard and I don’t even know what to say to you about that one.

I can totally relate to the sleep deprivation not “getting” my MIL, (I can’t tell you how many times I’ve heard “but he LOOKS so normal”, ughhh) and just plain in tears at the drop of a hat. I noticed your LO is at that 5 month mark, and I will say months 4-7 were the worst, and then things really turned around for us a ton, so I am hoping that this is very short lived for you and that things turn around quickly.

I wish I had better advice and words of wisdom, but I do want you to know we do know how you feel, and it is some of the hardest days of your entire life. You will get through this and you will have an amazing bond with Finn that nobody else that has not been through what you have will ever know how strong that bond will be.

You are a great mom!!!!!! And you are doing an amazing job, so please vent any time you need to and know that we are all here for you! Are you close to anyone here on the boards to set up a meeting? I have met with a couple of moms (neither still here, as past these issues) but I still try to get together with one of them every once in a while and we also talk a lot on the phone just to vent, reconnect, etc…..

I am sending hugs your way!!!

Ann Marie

October 17, 2008 at 2:13 pm #57802

Anonymous
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Oh Colleen. Just like Jill and Ann Marie said, we have all been there. I used to just sit outside with Cooper on our back porch and we would cry together… noone could see us that way and at least we got alittle fresh air! The lack of sleep is the worst and I will say that whenever he shuts his eyes you need to do the same. I don’t care if there are 100 things that need to get done… well they will just have to wait. He can sense that you are stressed and it does make it worse. I am speaking from experience here. i totally get the whole MIL thing. My MIL lives less than 1mile from us and she just never understood and still doesn’t on so many levels. I agree with Jill you gotta get him on a good dose of PPI. My little guy was 4 months old before we got there but I will say his sleep didn’t get decent until he was 6-7n months old. We still had many nights of multiple wakings until he was a 12-14 months old. But it does get better we are all proof of that. Hang in there.

October 17, 2008 at 2:49 pm #57805

Anonymous
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Colleen, I’m SO sorry that things are not getting better but worse! I wonder if maybe Finn is coming down with something? If you haven’t changed anything (meds, diet), that was usually my first guess with my boys….or maybe a tooth?

But I just can’t imagine why he hasn’t improved before today, with your diet and with the Prevacid. I’m sorry I don’t have any good advice at all, since TED and a marci-kids PPI dose did the trick for us. I read from your other post that he’s having more normal poop now, with no mucous, so it doesn’t really sound like anything you’re currently eating is bothering him, but I don’t know…. I will say that my Nathan couldn’t tolerate really any major protein in my diet til he was about 7-8 months old, so I did TED minus turkey (I’m a vegetarian anyway).

I completely understand about the unsolicited in-law advice…it’s awful. But I can’t imagine going through this without being able to vent to my own mom, who understood so well because she had a “colicky” baby 20 years ago, my younger brother. I’m so, so sorry that your mom isn’t here.

Please vent here anytime, and hold onto hope that it will be SO much better one day, hopefully soon.

October 17, 2008 at 5:14 pm #57814

Anonymous
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thank you all so much! i feel better already just from reading your notes…really

yes, he is on the marci-kids ppi dose–so that can’t be it. it seems like the mucous is pretty much gone, but he is definitely having intestinal pain and stinky gas, so i think that intolerance must still be an issue.
i could start back at the beginning of TED , but i do feel like we are narrowing down what bothers him with the NAET. for example, yesterday his horribly, extra-bad night could have been due to the cookie i break down and ate!(it was small, i swear!) or the parmasean cheese that was in my dinner. (we thought we fixed dairy, but it took us six sessions, so it may not be clear)

i’m also wondering if he might have a hernia– he has a hydrocele (fluid filled testicles) which can lead to or indicate a hernia–which can cause reflux.

today, i finally figured out the medi-cal situation (I think!) so we have a new GI appointment on the 30th.

xxoo

October 17, 2008 at 5:33 pm #57815

Anonymous
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I feel for you. It must be hard not to binge some sweets when you are exhausted and upset, once again my hat goes off to anyone that does TED!

I am glad you got the insurance issue straight. I won’t even start hyjacking your thread and venting about how I feel about insurance companies. lol. seriously, b/c then I just might get political, and nobody wants to hear that! haha I hope your new GI is a blessing to you guys and can help out a ton!

P.S. have you tried an H2 blocker in addition to the prevacid? Do you have any zantac or pepcid complete? Landen was really bad during 4-7 mos and we had to use prevacid and pepcid (OTC) during that time.

I hope you get a better night’s sleep!
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