Infantreflux.org | I am done....VENT

This topic has 21 replies, 1 voice, and was last updated 16 years, 6 months ago by Anonymous.

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April 9, 2008 at 12:49 am #50119

Anonymous
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I am done. I am so terribly, incredibly done that I could not be more done unless I was charred and burnt in the toaster. I’m ready to throw in the towel. I want to resign from this job. I admit complete and utter defeat. Where’s the paperwork? Show me the dotted line and hand me a freakin’ pen!!!! I am ready for a straight jacket and a padded cell.

My kids are driving me crazy. My house is a mess. I am a MESS. I am EXHAUSTED. Nicholas’ reflux is bad again.

The ped GI wants to do an upper GI scope on Nicholas. Which is awesome and I can’t wait….except for the fact that I have to drag him to a hospital 250 miles from here to have the scope done. Real freakin’ nice, huh? After I spoke with the doc, I realized that I had TONS of questions about the scope that OF COURSE, I didn’t ask when I was ACTUALLY SPEAKING LIVE TO HIM. So I call back and leave a message. And who calls me back? The MOA (medical office assistant). I am sorry if any of you are one, but the moa’s in my ped GI’s office are idiots. They are all like 18 years old and have absolutely NO medical knowledge whatsoever. Why would they be allowed to call me back about this? I specifically stated in my message that I had questions about the scope. So this dumb girl calls me back and asks what my questions are. After spending 10 minutes unloading all of my thoughts and questions about the scope, she informs me that she will forward these questions to the doc and he will call me back when he gets a chance.

WHY COULDN’T HE CALL ME BACK IN THE FIRST PLACE?

They knew what I needed from my message. GRRRRRR!!! And the procedure scheduler has YET to call me back. The cheesy message on her voicemail says she returns all calls made before 3:30pm on the same business day. I call her bs on that one.

Where in the world is the bartender with my drink? I hate everything and everyone. I am soooo tired of reflux. I am tired of MSPI and having to read the entire label of EVERYTHING I want to feed my son. I am tired of doctors and doctors offices. I am tired of pharmacies. I am tired of remembering to give 4 different medications, all of which have multiple doses a day and have to be spaced out just right so as not to affect each other. But mostly, I am tired of being tired. If Nicholas can take Zantac, can I take Zanax?

And to top it all off:

when I logged into this forum to post this, the ad at the top of the page staring me right in the face said: How to Sleep More…and some jabber about nature’s remedy or something. I know the ads are generated by WebWiz or something and kind of help pay for the site…but have a heart. I think the ad is what sent me over the edge.

I am super sorry to vent……it’s just one of those days. Now I must go to bed, so I can do this all again tomorrow.

kdub2008-04-09 01:29:34

April 9, 2008 at 7:50 am #50121

Anonymous
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Hi Kristin,

I hear your frustration and boy do I feel for you! You are right, this sucks! And If I could have quit, I admit it, I think I might have. Reflux is horrible and it sucks when you know more than the idiot on the other side of the phone.

I got to a really bad place with some stuff and I did go to the doctor and ask for something. Xanex would have been nice! but I did get something else that really does help.

I don’t know if you are to that point, or just really have had it today, (been there, too) but I have to tell you, my day to day is much more enjoyable and I don’t feel the least bit out of it at all.

Hang in there! %$!k the house and who cares about the mess, you will get to that eventually. You need to get Nicholas to a better place. He is now 5 months and I remember 4 – 7 being the worst with the boys, from teething, growth spurts, etc. You are in the worst of it and it can only get better from here.

My heart goes out to you!!!

Ann Marie

April 9, 2008 at 8:39 am #50126

Anonymous
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God, I feel your pain. I’ve got to drive an hour and 1/2 to Albany, for EACH appt. Developmental…. GI…. Cardiology…. when she had her inguinal hernias repaired…. our local hospitals can’t do much of anything for our lil ones. 🙁

April 9, 2008 at 9:27 am #50128

Anonymous
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I could relate to every single feeling and frustration in your post! I have BEEN there with both kids but particularly, Landen. I think one of the worst things about raising a refluxing baby is seeing “happy” babies everywhere who are out and about and ALL over the tv. I never had that baby, and when I’d see placid, perfectly happy babies everywhere I would wonder what I did or what my babies did to deserve this. BUT I try to remind myself that God gives these babies to the mamas that can handle it , and they do outgrow it. But it’s HARD. Don’t worry about your house, just focus on getting Nicholas comfy again and try to sleep when they sleep. Hang in there.

Oh and let me add that when Landen was Nicholas’ age, he had his WORST reflux symptoms. I agree that 4-7 mos was the hardest. SO bad that we did an endoscopy on landen. the GI swore he probably had EE or something or erosions that were not healing, but he did not! Landen was the baby that cried cried cried and never ever slept. he’d “jerk” awake after a 10 min nap all day long. I could never imagine that he’d ever sleep. Now he takes two 2 hr naps/day or one 3.5-4 hr nap! It will get better!!

jilly782008-04-09 13:18:29

April 9, 2008 at 11:39 am #50131

Anonymous
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Months 4-7 were the worst for Myles too. And I definitley wanted to throw in the towel. I vividly remember that the first thougtht that entered my weary mind every morning of my life those months was, How the hell am I going to do this again? I remember those miserable days far too well and I definitely understand where you are coming from. Infant reflux is a nightmare and nobody understands that exept the poor moms and babies who’ve been there. The babies fortunately outgrow it and forget it. The moms survive it but remember it for life!

Ugh! And, the doctors and clinics we have to deal with only add to the frustration. I HATE with a passion having to call the doctor about ANYTHING, and I’m fortunate enough to live in a small town with a pretty darn good clinic and a great doc, but still I sometimes get the runaround from new and/or inexperienced nurses. Your clinic sounds like a doozie. 18 yr olds returning patient calls? How INFURIATING!!! And what the heck is a MOA anyway? At least I get to talk to a nurse when I call. And I thought that was challenging. I really feel for you. Can you submit your questions in writing or via email? I did that once when things were particularily bad with Myles because I was so d*mn tired I couldn’t think straight and I always get flustered when talking to the doc or nurse on the phone. So I wrote a letter and had my dh drop it off at the clinic. Just a thought….

Don’t be sorry about your vent. We all need to do that sometimes. This site has plenty of mine from back when things were so bad with Myles!

Hang in there. It’s hard to believe now but this will pass and happier days are ahead.

April 9, 2008 at 12:35 pm #50136

Anonymous
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Hi Kristin.

Hang in there. When Ashlynn was about 4 1/2 months was when her reflux was at it’s worse point. I thought that I was going to go beyond crazy. Ash did not have problem with weight becasue she was a comfort eater. Prevacid did not work for Ashlynn at all, we switced to Nexium about 4 1/2 months and this was our wonder drug. You might want to ask your Gi about this med. I know there a few kiddos on this med. I could see a difference in Ash that day. My dd has is always gone with his work,he goes in at 6a and gets home around 6p. Even though Ash sleeps through the night ,now Danika my two year old is waking up with nightmares. Ash also has some delays,she just recently started to crawl and roll aroung alot. I blame this on her not being able to lay flat for so long. She had to sleep in her swing tell about 5 months.

Hang in there. I will keep you and your family in my prayers and hopefully things will get better soon

April 9, 2008 at 1:11 pm #50139

Anonymous
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Ditto to all that everyone else has said about 4-7 months being the worst. I remember days of changing his cloths 4-5 times as well as mine at least 3-4 times. Our struggle at that time was that it was summer and horribly hot and boy did he stink, my house and me, but IT DOES GET BETTER I promise. I had many days where I just wanted to crawl under a rock and hide, but I couldn’t and somehow I made it through. Sometimes I wonder how I did it and I know everyone else has wondered that at sometime too. God doesn’t give us more than we can handle so just hang in there it will get better and you have us to vent to.

April 9, 2008 at 6:42 pm #50148

Anonymous
Inactive

Okay, someone upstairs DOES love me. The GI office finally called back to set-up the actual procedure. I asked about having the procedure done here as opposed to Denver (250 miles or 4 hours away). She put me on hold, and then yayyyy!! she fit me into the docs schedule when he comes over here from Denver. I think I sounded really pathetic or something. Hey, whatever works. So we are schedule for the scope on Friday April 18th. I’ll let ya’ll know.

Also, a moa (medical office assistant) is the person that usually takes your blood pressure, weight, temperature, etc. at the docs office. They also can give shots including immunizations. The offices have gone to moa’s instead of nurses b/c of the nursing shortage and b/c moa’s get paid less. They do have to go to school, but it’s only for 18 months. I’m not sure why this annoys me so much, but it does. Maybe I’m partial to nurses b/c my sister is a NICU nurse. Really good medical practices still have nurses. My ped’s office has one, and the vaccines that my kids do get, I make sure it’s the nurse giving them.

I’m better today, I think everything bad happened all at once yesterday and I lost it. Thanks for your support! It’s good to know that SOMEDAY, this will get better.

April 9, 2008 at 7:12 pm #50150

Anonymous
Inactive

kristin—-if it makes you feel any better—-i get up every morning and take 6 different pills just to keep myself sane and get myself moving—-and—–if i don’t take several more of them during the day, at the right time, (which could vary from day to day) i can end up losing it, or if my pain starts to set in before i realize it, it is already too late, because even if i take the meds then, the pain quite often gets worse before it gets better. sorry, now i’m really whining and this is your boo hoo thread!!

hang in there, it WILL get better—and it sounds like things are already improving with the scope being moved closer!!

April 9, 2008 at 8:00 pm #50153

Anonymous
Inactive

Hang in there. I’ve been where you are/were yesterday, and actually, yesterday wasn’t the best day for me either! It DOES get better. GOSH when Dagney was 5 months old, I’d be changing her and me, like someone else metnioned, 4-5 times/day, and we’d both still be soaked with spit up when my dh came home at 6. My dh was working crazy hours then too, so I was doing it mostly alone, and, of course, no one understood the hell we were going thru. I was ready to throw in the towel, too, but then I did realize that I (and my dh) was the ONLY ONE seeing that hell, and someone had to stick up for my little girl! And that’s what you’re doing, so just remember that on those particularly bad days. It does get better, one day, magically, you realize that they’re not spitting up as much, and there are more dry clothes than wet clothes, and that all the other symptoms are starting to dissappear too! Hang in there!

April 9, 2008 at 9:56 pm #50162

Anonymous
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Christine- I could never imagine taking that many pills! My mom has a lot of health problems, most of them being GI, and she takes tons of pills. Sucks! I just sometimes feel like all I do every day is try and stay on top of medications that in all honesty DON”T WORK. The meds really helped him for awhile, but his symptoms seem to be back BAD! I have to give Prevacid on an empty stomach 30 min before meals, can’t give Zantac within 4 hours of Prevacid. Can’t give Carafate within one hour of anything, and remembering the 4x daily Reglan is HARD! It just seems like it’s all for nothing, ya know.

I am excited for the scope and glad to have it done here. The sad part is that he doesn’t even spit up THAT MUCH, but you can definitely hear the refluxing and swallowing. The GI has even pointed it out. People look at me like I’m insane when I say he has reflux, b/c if you based it on how much he spits up, it’s like almost none.

And I did read yesterday that Nexium was approved for kiddos- GREAT NEWS! I will definitely ask about that one. Has anyone noticed side effects from Nexium and do you still have to do the whole empty stomach wait 30 minutes deal?

Thanks again, everybody!

April 10, 2008 at 7:23 am #50164

Anonymous
Inactive

When Landen took Nexium he did really well. We changed only b/c 30mg prevacid was finally offered to us by another doc! The nexium still has to be timed around meals. If you get the powder packet you mix it with water and it makes a lemony suspension. Landen liked the flavor a lot! I am so happy for you that you got the scope scheduled locally! YAY!

April 10, 2008 at 9:01 am #50172

Anonymous
Inactive

Hi Kristin,

In reading your post, then maybe could you stop the reglan? I know there have been lots of successes/failures here on that med, but I think it did cause a lot of fussiness in some children, so could it be that it has just built up in his system? (not sure but guessing). Most times it is added for the motility issues, but if he is not spitting up that much, do you think that maybe his tummy is starting to catch up and empty faster?

Just a guess and trying to give you something to try until the test….

Hang in there!

Ann marie

April 10, 2008 at 9:23 am #50176

Anonymous
Inactive

Ann Marie- I actually did stop his Reglan for awhile, b/c I swore that it gave him the tonic reflexes and he was just acting weird. After I stopped, he was diagnosed with MSPI. When his symptoms started to get bad again, I thought I’d add Reglan back in to see what it would do. Maybe his tonic reflexes were a side effect of his undiagnosed MSPI? I guess that he really hasn’t gotten better with adding Reglan back in. I’m just desperate to find something that will work, ya know? He’s not even really fussy so much, but his silent refluxing has gotten much worse and his sleep is totally downhill. He is also back to arching after feeds.

The GI wants to do erythromyacin (sp.?) instead. I’ve read about the stomach cramping as a side effect. Has anyone had success with erythromyacin? It seems funny to me that he will add the erythromyacin even with the cramping as a side effect, but is hesitant to up our Prevacid dose b/c he said a high dose of Prevacid can cause stomach cramping.???????????????????????????????? I don’t get these docs sometimes.

Thanks everyone again for letting me vent and sharing your thoughts!

April 10, 2008 at 11:05 am #50177

Anonymous
Inactive

kristen, is the doc planning on an endoscopy along with the ph probe? or is it just one or the other that he is doing?

oh yeah, about the carafate, even though it is supposed to be given only at certain times, i have given it to sylvia during the middle of a feed when she was fussy and it still seemed to help.

kevieb2008-04-10 11:06:15
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I am done….VENT