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This topic has 17 replies, 1 voice, and was last updated 16 years, 2 months ago by Anonymous.

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July 24, 2008 at 10:52 am #54415

Anonymous
Inactive

The endoscopies can not come soon enough.

Despite getting Prevacid bumped up to 30mg/day, Evan is now fussing during feedings & pulling off the breast frequently. He never did this even when his reflux was unmedicated. Feedings are getting exhausting.

He was sleeping very well @ night as long as he was in bed w/ me. Last 3 nights he’s barely slept – restless & uncomfortable most of the night – not really into nursing, etc.

Still has blood in his stool (the most I’ve ever seen 2 nights ago). I will say though his diapers & gas aren’t super stinky anymore… some even smell sweet-ish (like a breastmilk diaper).

I wouldn’t be suprised if it’s esophageal thrush… that would cause reflux-like pain right?!…even if he wasn’t refluxing stomach acid (b/c of the Prevacid). Drs. don’t want to treat unless dx – which won’t be until endoscopy next week.

I just want my little guy to feel better…

Oh, & I’m so getting tired of eating 6 things…but don’t want to jump ship until there’s a baseline (no blood in diapers) to work from.

July 24, 2008 at 11:18 am #54416

Anonymous
Inactive

I am so sorry! I wish I had some advice, but just support and

The only thing I could think of was can you ask for carafate or can you do mylanta for a bit of instant (albeit short term ) relief?

I’ll be thinking of you guys! Hang in there!

July 24, 2008 at 11:35 am #54417

Anonymous
Inactive

Carafate is good. The only thing I HATE about it is the spacing. Carafate coats the stomach and esophagus (think of it as prescription strength Mylanta). By coating, it lessens the absorption of food and meds so you can’t take it within one hour either way of eating or taking meds. I found this to be a PITA. It does work well though. HUGS!

July 24, 2008 at 1:07 pm #54424

Anonymous
Inactive

to you!. I don’t have any advice other than to 2nd what every one said about the carafate and the mylanta. Good Luck.

July 24, 2008 at 2:02 pm #54428

Anonymous
Inactive

Oh I’m so sorry! I vividly remember those days when it just didn’t seem like anything was going our way. Hang in there! Is there any way you can call the office to see if they can get you in earlier? On a cancellation list, etc?

Also, I know the feeding is probably related to the reflux and/or thrush, but do you have OAL? The bobbing on and off reminds me of my kids, and it was mostly a letdown issue for us.

July 24, 2008 at 9:58 pm #54457

Anonymous
Inactive

Whenever we give Mylanta he throws up… so I haven’t been giving it. I also didn’t think he would need it really since his Prevacid dose is so high now -ugh who knows.

I’m wondering now (after talking w/ Jill) if he’s reacting to the CaraCream (contains corn syrup solids as well as sodium bicarbonate). He started fussing w/ the pre-bed feeding starting when we started CaraCream (exactly). Now, since getting a big dose of CaraCream in a.m. also (starting Wednesday) he’s fussing w/ most feedings. I think we’ll give it until Monday (to see if it’s shots, the probiotic, etc) & if still no good we’ll go back to giving the capsules w/ pureed pears. (ugh to having to do timing again!).

Naomi- the only day he does procedures is Thursdays (& he was booked for today). I do have OAL but I’ve been block feeding & also he doesn’t bob on & off @ the beginning or during letdown, it’s usually 5+ min into the feeding.

Thank you for all the support. Today was truly a tough tough day. It was almost as bad as pre-med. He screamed, scrunched up his legs, arched his back, etc, etc. He wouldn’t sleep in swing, didn’t want to nurse, wiggled the entire time in the moby, etc. When dh got home I just went back to our room & took a 15min nap & cried .

Oh, & also – Brodie is under the weather AND our microwave is broken . As if it’s easy cooking for the TED now I have to do it (& cook for a toddler) w/o a microwave. I know, I’m spoiled but it’s so time consuming.

erinntx2008-07-24 22:03:27

July 25, 2008 at 1:27 am #54464

Anonymous
Inactive

Erin: I am so sorry to hear that you’ve been having such a rough time! I know how hard it is to be stuck on the same handful of foods during an extremely stressful time. I admire your determination and dedication! Hang in there a few more days! I’m glad you have a potential dx of the thrush and also of the possible CaraCream reaction. That, plus the upcoming appt, at least give you hope of finding a resolution. I hope Friday is better for you and that Brodie feels better, too.

July 25, 2008 at 8:03 am #54465

hellbennt
Keymaster

July 25, 2008 at 8:33 am #54468

Anonymous
Inactive

can you go back to capsules now? that might be an almost instant improvement…. timing the feeds sucks but could possibly make things a bit better for now until the tests.

hang in there!

July 25, 2008 at 4:03 pm #54489

Anonymous
Inactive

Erin,

The only other thing I was thinking about (and you may have already done this so I am sorry if it is posted everywhere else) but I know the probiotics you have been giving Evan might have trace amounts of dairy and soy. Brianna reacted awfully to those everytime I tried giving her them. Just a thought…I know you are getting the new probiotics soon. Hugs to you!!! Less than a week away and you will be able to get some answers.

July 25, 2008 at 8:18 pm #54497

Anonymous
Inactive

Ok, today started out bad again (we gave CaraCream @ 8am).

He threw up around noon (a TON) & it smelled like the CaraCream (sorry if that’s TMI & don’t even know if that’s possible to throw it up so much later). Right after throwing up he relaxed immediately & took a 2.5hr nap in bed w/ me (dh was home to watch Brodie).

So, we are doing capsules w/ pears tonight & seeing how that goes. I don’t think it’s the answer to the blood in the stool (although that would be great) but it could be causing extra discomfort.

Also, got the hypo probiotic today so started them.

Brodie’s feeling better I think.

Microwave won’t be fixed until Tues/Wed BUT my fabulous mil let us borrow hers.

July 25, 2008 at 8:51 pm #54501

Anonymous
Inactive

Well praise God for the microwave…it is funny, ours was broken for a bit a while ago and it was amazing to me once I realized how much I relied on that thing. 🙂

Erin, that which does not kill you only makes you stronger. 🙂 You will make it through all this and we will be there to help in any way that we can.

July 25, 2008 at 8:53 pm #54502

Anonymous
Inactive

Prayers going out for you guys this weekend. I hope the change back to capsules with pears will help with the new discomfort and make the next bit until you get in for the scopes better. You guys have been through so much lately. I agree with Emily what doesn’t kill us only makes us stronger.. you are about to be Super MOM!!

July 26, 2008 at 8:38 pm #54538

hellbennt
Keymaster

yay for helpful MILs, LOL!

I wish I had something great to say.

Well:

YOU’RE great!

July 27, 2008 at 10:05 pm #54570

Anonymous
Inactive

Update:

Things have definitely been better since going back to capsules w/ pears. Hopefully they will remain that way.

He’s also had 4 YELLOW poopy diapers in the past 2 days. The poor guy has never had anything but green mucousy poops since he’s been alive. They’re alternating yellow & green right now but I was floored. Also, no visible blood today & 2 negative hemmocults (hadn’t seen a neg one in almost 3wks). So, hopefully we’re on the path to better things. We’ll still have the scopes on Thursday just to be sure, but maybe we’re almost there.

Thank you everyone for your support & prayers.
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