Eye rolling?

[Anonymous]

Hey guys,

Me again! Well, I’m absolutely exasperated. I feel like Kate’s been through three medications and things were fine for two short weeks and nursing was bliss but now, I just don’t know what to do. Here’s the thing. I KNOW she had Sandifer’s before she was medicated. But what is the difference between REM sleep and Sandifer’s? I’ve tried looking it up and there’s just not a lot of info about it out there and my doctor’s are,once again, clueless. Surprise! Kate’s body when she eats is completely calm, no bucking or pulling off really or head tilting but her eyes dart back and forth. We have out of desperation scheduled an emergency endoscopy for this Wednesday and I’m scared to death. I read Jenny’s post about Adriana’s possible endoscopy and that helped calm me a little and give me some good info. I don’t want to put her through it(fasting,anstesia(sp?))but dh and I don’t know what else to do. I guess what I’m wondering is that if they do the scope and everything is fine, could the eye rolling STILL be Sandifer’s? Also, I forget, but will they be able to tell if she does have an allergy to dairy by the biopsies?

You all are so understanding and sweet for putting up with all of my neurotic posts but these last two months have been absolutley exhausting. I feel like I’ve tried to be as proactive as I can. Heck I FOUGHT her docs for 30mg of prevacid and then again with now the 24mg of Zegerid. I’m spent and I feel like I’ve sacrificed getting to know my baby and enjoying her her whole life so far because I’m so busy trying to play doctor,detective, and researcher. I’m so tired If any of you have any ideas about the Sandifer’s or the scope please let me know. Thanks.

[Anonymous]

Claire, I’m not sure of the difference between REM and sandifer’s, but I do know that when Ben was Kate’s age, his reflux was pretty bad AND he got RSV, so it was just hellish for a while. The only way he would eat for awhile was when he was nearly asleep. He would eat, as you describe, with his body still, his head would jerk back and forth, almost like he was shaking his head no, but in very short quick jerks. It freaked me out. He would also roll his eyes some too.

This all did end once we upped his Zegerid and he got over the RSV.

I hope you find some answers with the endoscopy. we never had one done though I really wish that we had, so I can’t tell you anything about it. I hope you get some answers soon though! Keep us posted on how it goes.

[Anonymous]

Evie does the eye rolling ALL the time during feedings. Normally, something like that would totally freak me out, but I read somewhere that it is totally normal. Sometimes the rolling is back and forth and sometimes it’s back up into the head. Now, it is accompanied by some strange obsession with feeling her eyelashes Sorry I can’t remember where I read it, but if it helps, Evie does it during EVERY feeding!

[Anonymous]

I’m sorry, I haven’t experienced either (the scope or the eye rolling) so I don’t have any advice or ideas. I’m sorry that you are going through this. I hope you get it worked out soon. Good luck with the endoscope and please keep us posted.

Hugs and prayers.

[hellbennt]

the endoscopy can show allergies- they look for eos cells- sorry there’s a longer word that eos stands for that I don’t have at the tip of my fingers, lol

however, intolerances will not show up

rolling eyes when breastfeeding can be normal if baby is relaxed and just feeding, being calm…

if you up the dose of PPI and the eye rolling stops, then it was sandifer’s…

jonah rolled his eyes but it was part of what I called a tic-dance-trance where he would roll his eyes & be all jerky after eating & I used to think “oh cure, he’s milk-drunk.” Not. bcse then after being calm for a moment he’d start shrieking/howling…almost as if he was ‘snapping out of it’

it all really went away w/ higher PPI dose…

Also: see if you can contact the actual TECHNICIAN who will be doing the endoscopy (unless it’s the doctor doing it? I have no clue) and ask about fasting for a breastfed baby- oftentimes they will make it a shorter fast bcse breastmilk digests faster than formula- but you have to ask someone who knows, usually the technician in the case of an Upper Gi but I don’t know who it’d be for an endoscopy?

[Anonymous]

Like Laura said, many babies roll their eyes while feeding- we called it “milk drunk”. So it can be hard to tell the difference. Usually their super relaxed while feeding, and I always thought that they were kind of falling asleep. Hailey had eye rolling that was Sandifer’s.

The scope really isn’t as bad as you (and all of us going through it) fear. It was probably the easiest test she had done. It can tell you if there are allergies, but a clear scope doesn’t mean that there are no allergies or intolerances. I believe the biopsies they take look for EE (allergic esophagitis) or celiac. A clear scope will tell you at least that the zegerid is doing the job and the dose is fine, which gave me a lot of peace of mind. Even though Hailey’s scope was clear when we had it done (after being on a good dose of prevacid for several months) she still had bad Sandifer’s. I don’t know why. Maybe she still had acid, but not bad enough to damage her esophagus, just to be uncomfortable.

Good luck with the test. Keep us posted.

[Anonymous]

I forgot to add that Laura’s point about the BF and fasting is a good one. I’d call beforehand and ask. It’s the GI himself (or herself) who does the scope so they should be able to tell you how they want her to fast.

[Anonymous]

Thanks guys! I called the surgery center where it will be done and they were really nice and willing to answer all of my questions. The director was on the phone with me for 30min! Anyway, they said three hours still which really stinks b/c she eats every two usually She’s totally calm and fine when she’s rolling her eyes so I think that might be normal. They’re going to do bloodwork and all that jazz too so hopefully they’ll be able to put the dairy allergy to rest. Is it only if you have an allergy that you have to go onto an elemental formula or an intolerance too? Sorry if that’s a dumb question, I was just wondering…..

Thanks again for your continued concern and support! Say a prayer for our little family on Wednesday!

[Anonymous]

Good luck on Wednesday. I will say a prayer for little Kate.

[Anonymous]

Thanks so much Christine!!!

[Anonymous]

Claire,

Caden sometimes rolls his eyes when nursing, but it’s when he’s sleepy and relaxed. I can tell it’s not from pain, so that probably doesn’t help you, but I just wanted to let you know that it can be normal for some.

Also, I will definitely say a prayer for you all. I hope the endoscopy goes well and that you are able to get the answers you’re seeking! I know how hard you have worked to figure out what is going on with little Kate.

Good luck!

[Anonymous]

Claire,

I meant to mention that I love the new up close photo of Kate. What a beautiful little girl!

[Anonymous]

Claire,

Not to confuse matters further, but we were told that the blood testing for allergies is quite unreliable in babies that young. There were two different kinds they told us about, and we were told that one kind usually gives false positives, and the other false negatives. With that information, we didn’t do either of them, so I don’t know any more details. We did have a complete metabolic workup- blood and urine- and they did look for some allergy markers in the blood, but again we were told that they can’t be ruled out even if they’re negative. We were told the same thing by the GI who did the biopsy. Also, intolerances won’t show up in the testing, and many moms of babies with intolerances do choose to try either the elimination diet (if BF) or elemental formula (if bottle feeding). But as I said in my other reply, the scope can show eos cells looking for EE, and also can indicate celiac. We found it useful to assure us that any previously existing damage was now healed on her current dose of prevacid. We’ll definitely say a prayer for your little on next week. HUGS.

[Anonymous]

ARRRRG!!!! Lori-This is so frustrating. If she did have a milk allergy, does that mean they wouldn’t even be able to tell with the endoscopy? Man alive!!!! I was really psyched about putting that puzzle to rest Well, we’ll see what happens I guess. My main hope is just that she doesn’t come out traumatised for life and that it shows that the prevacid and zegerid have been helping. That will ease my mind a TON!! Thanks for the info by the way.

Emily- Thanks!!! I put a new picture up mainly for me b/c I love to look at her so much that when I’m here and I see an old picture, I think, ” she doesn’t even look like that anymore!!” I can’t help it, she’s my sweet, spitting-up-all the-time angel and I could stare at her all day long. Ah, mommyhood! Even with all its trials, my heart swells everytime!

[Anonymous]

Claire,

She won’t be traumatized! She won’t even know that anything ever happened. Ask the anaesthesiologist if they’ll use gas prior to putting in the IV. Many people have said that they’ve been allowed to walk their babes into the OR, and then stay until they were asleep by gas, and then leave. So they never even knew what happened. Hailey had a MAJOR social anxiety (fear of people) at that time, and she took it like a trooper. It will be okay. And the best part will be knowing for sure whether or not there’s damage. You might want to ask others your question about the endoscopy and milk allergy. I only know that we were told that she can still have a milk allergy and not have it show up on the endoscopy. The endoscopy will tell if there are eos cells, which develop as an allergic response. Their presence definitely means that there is an allergy, but I don’t believe the converse is true.

[Author]

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