Update…still frustrated!

[Anonymous]

Hey All,

Well, we had Kate’s upper G.I this morning at the hospital. The worst part of the whole thing was watching her scream in hunger for two hours while we waited to get into the X-ray room. When we got there, the room was packed and I asked the nurse(Kate was screaming full force by now)how long it would be, not that I wanted to be a pain, but just wanted to have an idea what we were in for. She was completely rude to me which got the whole procedure off to a lovely start. Then, the technician asked what her symptoms were of reflux because ” she looks so healthy”. I explained that it was the feeding that was our main issue and that she is so uncomfortable and in pain and she looked at me skeptically like I just told her dogs can fly. Arrrrg!!! My husband was so furious(I’ve had him reading a lot of posts on this site to help him understand how serious it is to get things under control A.S.A.P), he just glared at her.

Anyway, she said she ” refluxed a little, but not much” and that everything looked great looking at me like “see? she’s fine!”. I felt relief, and then frustration that we STILL have no idea what to do or what’s wrong. Hopefully Kate’s ped will shed some light or have something helpful to say that won’t send me running to find our fourth doc this month. I’m slowly losing faith in the pediatric medical community here in Indiana. Anyway, just needed to vent. Thanks for listening…reading

Kate’s Mommy2007-5-22 13:7:18

[Anonymous]

Most the time reflux doesn’t show in an upper G.I. What they are looking for is to make sure that there is no abnormal parts in the G.I. tract. The ph probe tells more about refluxing because it counts how many times a person reflux. That may be your next step. I have grown to hate nurses and doctors thru this experience. I am sorry you had to go thru that.

[Anonymous]

I’m sorry you were treated so rudely during the test. I was fortunate that the nurses and technician were wonderful during Myles’ Upper GI. However I was told that he had mild to moderate reflux as if that was no big deal whatsoever. The boy was on the verge of a feeding aversion; was only eating when half asleep, and was puking up entire feedings multiple times each day. Some days he puked up every feeding. I was very confused, but I read on here that the Upper GI is not a definitive test for reflux, nor can it really say for sure how bad reflux is because it’s basically just a snapshot in time.

Anyway, it is good news that no structurally abnormalities were found, and I’m sure you are relieved about that. Now you just have to figure out how to convince her doctor to treat her reflux seriously.

Is she getting any relief on the 15 mgs of Prevacid and the Carafate? If not then I would try to push for a higher dose of Prevacid. Myles finally got relief once he was on 30 mgs. a day, but I really had to work at it to get his doctor to agree. Faxing her the marci-kids info with a nice cover letter explaining how miserable he was finally swayed her.

Good luck and please keep us posted.

[Anonymous]

Like the mom’s mentioned about Upper GI’s are not the best to diagnosis Reflux. Alexis had horrible silent reflux and the Upper GI showed nothing, but she was in really bad pain due to her reflux and displayed a lot of Sandifer symptoms. Taylor did not display any Sandifer’s but she had a lot of gas, and eating problems but her Upper GI showed servere refluxing. The PH probe as mentioned is the one that is better for testing for reflux.

[Anonymous]

Yeah, I had read that the Upper G.I was not an answer or even a way to diagnose anything, I guess I was just naively hopeful that we would find out something helpful seeing as Kate had to endure a couple of hours or torterous screaming. She was exausted, me too. What is Sandifer’s? Kate’s the same way, she has a lot of gas and the eating is the problem which makes me panic that she will associate eating with hurting and develop a feeding aversion. We’ll see what the doc says this afternoon…or what I have to ever so sweetly say to her

[Anonymous]

With these things I always try (emphasis on try) to focus on the positive – at least she doesn’t have any abnormalities. I’m sorry that the nurse and technician were so awful. It drives me crazy that so many people in “service” industry jobs are so rude on a regular basis.

As others have said, the upper GI often doesn’t show reflux at all. Our technician actually was really surprised at the level of reflux that Kaelyn displayed. She said that it was rare to see someone reflux that much during the test.

[Anonymous]

I may have missed your intro, so I apologize if this isn’t helpful or if I missed something, but from what you have described it sounds like your daughter has some of the same symptoms my son did until I got my OALD under control.

I produce too much milk, and it lets down too fast which initially caused Caden to cough, pull off the breast repeatedly, fuss, and get gassy. I thought his symptoms were only due to reflux until I learned more about OALD (over active let down). Once I got that under control his symptoms improved.

Is it possible that you could have that? Do you breastfeed? If you bottlefeed, please disregard

[Anonymous]

That’s true. she doesn’t have any abnormalities and I am grateful for that, believe me. Momof4- Yes, I think I do have OALD. I read a couple of the threads Laura suggested and it’s helped a little. I feed her only on one side per feed, take her off when my milk let’s down, keep her upright like I would feed her a bottle which looks kind of silly having to reach my boob up that far but it works better than her lying down! The only thing is that when my milk let’s down it doesn’t always shoot out so I figure it’s not coming out too fast but when she sucks she’s gulping, gulping and I can hear her swallowing air. Also, it’s mainly the evening feeds that are horrible which is why I suspected reflux figuring her poor throat was getting beat up all day and her dose of prevacid is somewhat low according to marcikids.com. The guessing game continues. When she’s feeding too she screams and pulls off when my milk isn’t even letting down and then the back arching, pulling off, screaming, latching on, fighting through pain, body stiffening and looking at me like ” mommy, what are you doing to me!!” The nurse called and our appoint. is thursday. It won’t come too soon!!!

[Anonymous]

Claire,

This may not help Kate, but what helped Caden the most was/is nursing while lying down. He always nurses better that way. That might be something to try if you haven’t already.

Poor little thing – it does sound like she is in pain though. You are doing the right thing to check everything out.

I was never positive Caden was in a lot of pain, but my instinct told me he was uncomfortable. He didn’t really scream in pain, arch, etc. while nursing, but he did have colic, so I never knew for sure what he was crying for or how to help him.

We just do the best we can, right? It sounds like you’re doing everything you can to finding out what is causing little Kate’s pain.

Good luck, and please keep us posted

[Anonymous]

This is from Laura’s intro, it is information about Sandifer’s *

Jonah had Sandifer Symptoms before he was on the right medication & dose. It’s symptoms like back arching, stiffening a leg, twisting the head in one direction, & can also include seizure type episodes…i always use the symptoms as a barometer- as we got the meds figured out, the symptoms pretty much disappeared…

from: https://www.infantreflux.org/Forum/forum_posts.asp?TID=627&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=1

sandifer threads: https://www.infantreflux.org/Forum/forum_posts.asp?TID=195&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=sandifer

https://www.infantreflux.org/Forum/forum_posts.asp?TID=417&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=sandifer

[Anonymous]

Alexis’s Mom- Thanks so much for the Sandifer’s info. Hmmm, the search continues to find out what’s going on with Kate. She definately was showing Sandifer symptoms a couple of days ago but I haven’t seen it lately. The only thing is, could it be possible to show these symptoms WHILE feeding? That’s when I saw them with her. She would sort of jerk her neck into my breast, jerk her wrist around in this seizure like way, stretch out one leg, arch her back. It’s so strange it has a name because our second ped( what a rollercoaster this has been)actually laughed at me when I asked if it could be siezure and proceeded to tell me all children feed differently. Ha! Boy am I glad we kept on moving after one visit with him.

Momof4- You’re so sweetThanks for the supprt. It means a lot when you feel like a failure of a mom because you feel so helpless and can’t FIX what’s wrong. Did you feed Caden lying in bed or reclining in a chair? We might as well give it a whirl!

[Anonymous]

Have you also tryed block feeding? I know you said you only feed from one side at each feed, but also feed from the same side for two feedings. If you see some improvement, but not enough maybe try the same side for 3 feedings. Of course, if you try that and she seems to be still hungry then go to the other side. As far as the sandifers, check out marci-kids. I think they have a video of it. Maybe even try to google sandifer’s symptoms video. Who know what you might find. I am so sorry you are having to go through this. I hope you figure it out soon.

[Anonymous]

Alexis during feeding was when she would arch her head/neck all the way back and form a reverse C shape and crying the entire time. It was a horrible site. As suggested by the mom’s on the site here video taped it and was ready to present to the Peds GI if needed, but fortunately for us, the GI was very understanding and started Alexis on a PPI immediately. Alexis’s mom2007-5-23 21:19:50

[Anonymous]

I’m so sorry to hear that they were so rude to you during the test. We went through something similar with Hailey. At the time of the test her feeding aversion was already going strong, and I could barely get her to eat. So when we went and I had concerns about them forcing a bottle of barium on her b/c she had a feeding aversion, they basically looked at me like I was crazy. She said “what do you mean that she “won’t BF or take a bottle. Have you tried different nipples? Have you seen an LC?”…. they were talking to me like I was a complete moron. It was very frustrating and made me feel very alone and as if no one understood. I was too naive to have lost all faith in doctors at that point, but I think that’s definitely where we’re at now. It’s certainly been eye-opening, to say the least.

I really know where you’re at and the feeling of desperation.

If your daughter is showing Sandifer’s symptoms then I’d say that she’s uncomfortable from the reflux and would definitely try to see if someone will up her PPI- 15mg might be a decent conventional dose, but when it doesn’t work, and since it seems to be safe to give, I generally think it’s better to go higher and see if you can get the feedings under control. Also, make sure that you are not giving the carafate near the PPI. I once remember reading that the carafate actually requires an acidic environment to work, so if the PPI is working at controlling the acid, then the carafate might not work. If you are giving the PPI in the am, then I might give the carafate at night.

We dealt with Sandifer’s for a very long time, and I had video footage of me feeding Hailey that I took to all my appointments, but before that I tried to BF Hailey in front of the ped when she hadn’t fed for hours and theoretically should have been hungry. When he saw her refuse and arch away and thrash around he suspected reflux and referred us immediately to a GI and we were in within two days. Her Sandifer’s persisted until she was around a year or more, I can’t exactly remember, and we had an EEG when she was about a year old to rule out myoclonic seizures and confirm Sandifer’s. During the first two months, we were told that the behaviours were due to OAL, and I believed that, which is why it took so long to diagnose Hailey. I don’t know too much about OAL, but I did know that my milk sprayed, and then Hailey choked and gulped, and pulled off etc. I thought that it was all related to BF kinks and getting things under control. My ped, who I love dearly, but who is obviously not the best informed about BF, would weigh Hailey, listen to the symptoms, and tell me that b/c she’s gaining weight, even though she’s only sucking for less than a minute on each side (almost all day long), my “milk must be spraying down her throat so that she’s getting a full feed in just a minute”. I thought it sounded strange, but didn’t know really what was going on.

And by the way, we always saw Sandifer’s the most when she was feeding, and then also after the feed. I really hope that someone can help you, and I’m so sorry that you’re going through this. It’s really hard. HUGS.

[Anonymous]

Claire,

What I do that works for us is lie down on my bed and nurse him. He always likes that, and now he will even lean way back when he’s ready to nurse so I’ll go lie down with him! It’s funny, because we’ll be out somewhere, and he’ll lean back toward my breast, and it’s kind of obvious what he wants

I hope that will help with your baby too. It just seems like I tried everything I could until I finally found something that worked for Caden. It was so frustrating, because the Prevacid didn’t do anything for him, and he was on the highest dose on the Marci-kids site. So, we just didn’t know what to do.

We finally took him off Prevacid since it wasn’t helping – why medicate if there aren’t any results? So, he’s med-free and doing no worse than he was on the meds.

Actually, he is outgrowing his reflux now (thank goodness), and we’re so happy to see him babbling, laughing, smiling, etc. like normal babies.

It WILL get better, I promise. But, in the meantime, maybe one of the suggestions on here will help you in some way. I got lots of help from these nice ladies here, and some of the ideas really did help Caden.

Please take care of yourself too. This is such a stressful thing to deal with on a daily basis. It’s easy to forget about yourself, but in order to take care of someone else, you can’t forget to allow yourself to have some positives once in awhile too (like a bath uninterrupted or a small nap). As hard as it is to accomplish this – I know – it really helps you refuel

I hope things improve soon!

[Author]

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