Infantreflux.org | I am devastated

This topic has 31 replies, 1 voice, and was last updated 18 years, 9 months ago by Anonymous.

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February 1, 2006 at 8:18 pm #489

Anonymous
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I am so sorry you are going through this. I can definitely relate as my little Haden cried all the time until we got him on the proper dose of a PPI (Zegerid). I remember telling my GI that he was always doing one of three things-crying, if he wasn’t crying we were doing something to prevent him from crying (swaddling, shshshshing, rocking, etc.) or he was sleeping. Basically, when he was awake he was crying!

It sounds to me like your baby is definitely in pain. I ended up calling our GI’s office after being told I had to wait 3 weeks for an appointment and just crying to the receptionist. Telling her we needed help NOW, that my little baby was in pain and we couldn’t wait 3 weeks. You’ll find most doctors/nurses are compassionate and its so unfortunate you got stuck with such a doozy!

Can you call a Children’s Hospital or another GI? Asking for a sample of Neocate is a great idea.

I would trust your intuition and your heart!

February 1, 2006 at 8:36 pm #490

Anonymous
Inactive

Mason’s symptoms don’t sound behavioral to me. Our ped and ped GI said that they don’t really learn behaviors like that until after 6 months. Up until that point, the “behaviors” are a symptom of some other problem. Kaelyn was extremely difficult as a baby. She screamed constantly, arching and fighting us, but also wanting to be held all the time. Both doctors said that it was normal for her to act that way with the severe case of reflux that she had (and they continued to work to find a way to help her). As she got older, we could always tell when her reflux was bothering her because she would get much more clingy and whiny.

Personally, I’ve always wished that we had done the ph probe and endoscopy when she was in the throes of reflux. We know now that she has a really high tolerance for pain, so I suspect that her reflux was even worse than when thought it was. Plus, I’ll always wonder if the endoscopy would have clued us in to her milk allergy way back then and possibly helped us avoid the allergy issues that we’re having now. I’m so glad that you found another GI and that you were able to get him an appointment with an allergist. Hopefully, they’ll be a better source of support than the idiot that you just saw!

February 1, 2006 at 9:10 pm #496

hellbennt
Keymaster

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;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;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;KW=sandifer

February 2, 2006 at 2:25 am #508

Anonymous
Inactive

Wow. What a story. So sorry this has happened to you. I am also a first time mom, and don’t know what a “normal” baby is like, but my little guy, who has severe reflux and a hiatal hernia, screamed, cried, fussed, arched his back ALL the time, spit up constantly, coughed, and did all the other classic reflux things and there were times when I still questioned myself. He had to be held nearly all the time as a little one, we used the baby bjorn and a sling and our arms and he had to sleep elevated or on top of me. Many of these symptoms were alleviated when meds were given at proper doses and after we had discovered he was also MSPI and corrected for that. Your little guy sounds extremely uncomfortable and you need to trust your gut instinct.

I also had a doc (our first, we’ve moved onto another) say that nightwakings were part of reflux and “you’ll get used to it” when I explained to her that he was waking screaming every 45 minutes. She also didn’t take me seriously because our child was great with the weight gain, and cooed and smiled at her in the office visits. It’s unfortunate to get one of those docs, but he was honest with you when he said that he couldn’t help you. He can’t. No one with that attitude can, and they will not be able to help you get to the bottom of your child’s problems. You’ll find you will have to be the best advocate you can be, nad hopefully you can find a doc who will work with you. We went around teh ped gi after we decided to get a new one, and I asked my regular ped to put my son on a higher dose of meds, based on what Dr. PHillips at the Midwest Acid Reflux Children’s Institute recommended. You can try the same as a bandaid in the meantime until you can get in with the new ped gi. Just a suggestion. I hope things improve!

February 2, 2006 at 6:44 am #512

Anonymous
Inactive

Oh I’m so sorry about this – what a horrible experience and I think
ridiculous for the doctor to say those things. I would do the tests
though (and also ask for an endoscopy) so you can see what’s really
going on. I don’t think it’s behavioral myself and like others here
have said, mother’s intuition is often best too. I’m glad you are
seeing a new doctor – even though you have to wait.

February 2, 2006 at 8:07 am #515

Anonymous
Inactive

I think all of his behaviors point to reflux. Also i noticed that he is on enfamil ar. Have you tried nutramigen b/c it may be a milk related issue or you could even try soy.

February 2, 2006 at 9:43 am #521

Anonymous
Inactive

Hailey also arches all the time, but not the kind associated with feedings/reflux. I don’t know why they do it, but I don’t think it’s a typical baby behaviour. At least I don’t know other babies who arch when they are upset or bored, but Hailey certainly does. I think that she started arching with pain surrounding reflux, and now she does it behaviourally for other reasons (I do not believe she’s in pain when she’s arching b/c she’s bored, or upset, or scared etc.)

As for the fussy baby thing I know what you mean. Hailey is a lot more difficult this way then other babies, but I think partly it comes from reflux, and partly from temperament…she’s pretty touchy- easily overwhelmed by everything and everyone. Makes for quite a difficult baby if we’re out and about.

I notice that you say your son has motor delays, but I also see that he’s only 4 months old. What kind of delays is he having at such a young age?

I hope that you get some anwers soon.

February 2, 2006 at 12:29 pm #525

Anonymous
Inactive

Just wanted to chime in re: the Neocate trial…in addition to a milk/soy allergy or intolerance, he could be uncomfortable with the rice in the AR (I know they’re not “supposed” to react to it, but lots of babies react to lots of stuff they are not “supposed” to!) My youngest would get fussy and miserable every time I tried to give him cereal (and don’t even ask how many times I kept re-introducing it and making him miserable before I realized no baby HAS to eat cereal.) By doing a neocate-only trial, you can remove all potential allergans/irritants. That way, if he gets better, you can later gradually introduce things, one at a time, so you can know for sure what he reacts to. (This will be WAY helpful before venturing into the tricky world of baby foods!)

February 2, 2006 at 1:19 pm #532

Anonymous
Inactive

I’m curious about the developmental delay part too. He’s really only 3 months adjusted for prematurity. There really isn’t much he “should” be doing at that age. Maybe I can help ease your mind about some things because I too once thought my daughter was delayed and at 18 months – she’s completely caught up.

February 2, 2006 at 7:10 pm #552

Anonymous
Inactive

can someone tell me if i order neocate, will one case (4 cans of 14oz each) get me through two weeks? How many oz does each can make in liquid volume? My son eats big. He takes 6oz every three hours (except at night). He takes about 40oz a day.

As for developmental delays…he has a vision delay. It was bigtime but we went to the opthamologist for a followup and he’s doing TONS better but still delayed. No reason for it right now in regards to structure of the eye. Doc said that if he’s not caught up in 2mo. (next follow up) then we’ll move to some testing of the nerves (making sure they’re transferring to the brain?). He is very weak in his arms (hypotonic). He has difficult liftin ghimself up when on his belly. His arms lay still at his sides instead of doing those beginning skills of accidently hitting toys of an activity gym etc. One side of his body is dominate (stronger). That holds up in the upper body (he can sort of push a little with his left but right side doesn’t do anything). His tracking is shaky at best but getting much better. He won’t turn his head to the right to track..he’ll take his eyes to the corner of his eye following an object rather than turn his head. And apparently, according to the OT, he is having some vestibular issues. The way these play out is that he’s real insecure of movement. A lot of questions remain open. I’m not too worried at this point, just being proactive so the gap doesn’t widen. We aren’t sure if a lot of this is related to the vision (if you can’t see well, why would you bat at toys?) and if you can’t see well, movement might be uncomfortable. SO we aren’t sur what’s related to prematuriy, vision, being hospitalized for the first two months of life (no stimulus, hooked up to tubes so not a lot of movement etc). It’s crazy. The other crazy thing that is happening is the only thing that REALLY makes me nervous. Sometimes he “tunes out”. Like at daycare today, I went to pick him up and walked in the room while he was on the floor. His head was turned towards the wall (no exciting stimulus drawing him). I talked to the worker for a minute or two, so he had the opportunity to hear my voice. He didn’t move. I got down on all fours talking to him “Hi Mason!”. I’m inches from his face. Nothing. I physically turn his head which was hard b/c it seems rigid or like he was resisting. I turned his head towards my face and he stared right through me. It took him about 20 seconds to focus on me. It was so abnormal that it was awkward in the daycare room b/c the two workers were watching and one tried to say something (you know when things are awkward) to help. SHe said “oh, maybe he’s just confused.” He’s not confused. It made my stomach curl. My husband will say sometimes its like hes in his own world (not in an autism way, but a checked out way). Most of the time he is VERY interactive, super flirtatious (especially when people make over him) and smiley to get you to smile back (when he’s not fussing). So, it is such a sudden change. I told the ped about what happened today and she said I needed to make sure to tell the dev ped next week. If anyone’s kids do something like this and it’s “normal”…you’d really put my mind at ease! My mind goes a little crazy thinking neurological, seizures etc. Thank goodness alot of doc appt are coming up soon. BTW, we are doing the ph probe next thursday. And my ped was PISSED when i relayed what happen with the GI. SHe said she will never refer anyone to him again.

February 2, 2006 at 9:02 pm #558

Anonymous
Inactive

Has he had his hearing tested?

February 2, 2006 at 9:22 pm #563

Anonymous
Inactive

Yes twice because one of the antibiotics he was on intravenously for his staph infection had a possible side effect of hearing loss

We have wondered about that…does anyone know if they are 100% accurate?

February 2, 2006 at 9:23 pm #564

Anonymous
Inactive

Opps..forgot to add that both results came back normal! I guess that’s important!

February 2, 2006 at 9:45 pm #569

Anonymous
Inactive

In regards to your Neocate question-4 cans should get you close to 2 weeks. The difference in Neocate vs. other formulas is it is 1 scoop per ounce. Others are 1 scoop per 2 ounces. So it goes pretty fast!

Good Luck!

February 3, 2006 at 4:07 am #578

Anonymous
Inactive

i thought my little guy might have mspi, but he seems ok on the enfamil
ar and other than fussiness, reflux, and rash, he didn’t have all the
symptoms. i didn’t realize they didn’t need other gi symptoms to
be intolerant… (sorry to hog your post, i just wanted to thank
you all)
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