Infantreflux.org | update on Trace

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September 13, 2006 at 3:27 pm #13486

Anonymous
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i havent been around much lately because our computers hard drive blew so we are in the process of fixing everything and setting up the internet connection. i miss this place 🙁 it seriously keeps me sane i think.
Trace is now on Prevacid/caracream bc insurance woulnt cover zegerid. he is on 27 mgs and doing great. i was nervous about prevacid at first because of reported stomach cramping-but he is doing good.
Trace got a docband today!! (a helmet). He has a terrible flat spot as well as toricollis and now started physical therapy. i feel so bad for him because he suffered enough with the reflux. he looks really uncomfortable with his helmet on. i am hoping he has it off by christmas. i am not looking forward to the awkward stares and people thinking my son has mental issues. its a pretty akward medical device and most people dont know its just for a flat spot!!

also…….had a 4 month check up. he is in the 7th percentile for weight!! he is 12 lbs 8 oz!! ahhh!! i dont know what to do.
Trace has developed an attitude lately! he screams and throws fits like a 2 year old, its nuts. i have to hold him all day long and cant even sit down, or else he screams. he makes these weird whiny sounds. its draining. people tell me i have spoiled him. i dont know what to do anymore…..does he have behavioral issues?

agh hes crying gotta go….

nataliachick72006-9-13 15:47:53

September 13, 2006 at 4:17 pm #13490

Anonymous
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Natalia-
My son just got a helmet today too! That’s good that you are able to start him early with the treatment. I wish we would have. Bryce is already 9 months old, but he’s so small, that they say it should still work really well, especially if he has a good growth spurt.

Well, good luck with the helmet therapy! Hopefully they won’t have to wear them for very long. They’re so awkward.

September 13, 2006 at 4:20 pm #13491

hellbennt
Keymaster

you CANNOT spoil a FOUR MONTH old

here is what I have to say about it: https://www.infantreflux.org/forum/forum_posts.asp?TID=5793&a mp;KW=article

go check out http://www.thebabywearer.com

September 13, 2006 at 5:47 pm #13497

Anonymous
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Natalia,

Thanks for the update. I really feel for you….two of my three have been difficult, “hold me all day or I’ll scream“ kind of babies. It’s hard, but it does pass.

I hope the helmet isn’t too uncomfortable for him and that it fixes the problem quickly so he doesn’t have to wear it for too long.

What did the doc say about his weight? Is he concerned? Are you sure he’s not hurting, and that’s why he’s screaming and whining so much? His PPi dose certainly seems adequate. What about his formula?

Heather,

Good luck with Bryce’s helmet, too. I hope it works great and can come off soon.

Do they have to wear it 24/7?

September 13, 2006 at 6:43 pm #13499

Anonymous
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Thanks Christine,
They have a 5 day break in period where you slowly work them up to wearing the helmet for 23 hours a day. (You can take the helmet off for a bath or whatever once a day.) At least that’s what they told us for the kind Bryce has. I assume they’re all similar.

(sorry if I’m hijacking, Natalia )

Bryce’sMom2006-9-13 18:43:41

September 13, 2006 at 7:08 pm #13500

Anonymous
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I have never heard of the helmet but I hope it works out for both of you!!

Natalia…do you think Trace might be teething? I only ask b/c Sarah is just a few weeks older than him and I THINK she’s getting her first tooth. She had a few days where she was really whiney and cranky and now I THINK I can see a little white spot. She fusses when I rub on her gums too much. Being my first, I’m not 100% sure…but it’s my best guess. I know it’s so easy for us moms to always think it’s the reflux…this time I’m hoping it’s teething. I have also read that reflux tends to get worse when teething so maybe that would explain his attitude lately? I also agree with Laura that he’s too young to be spoiled. All the books say you can’t spoil before 4 months…but a Developmental Therapist I know who works in EI says you can’t spoil before a YEAR! That seems like a long time…but she’s an expert too! Don’t fret over other peoples opinions…chances are they have not lived with a reflux baby to know the things we have to do to keep them happy!

Also, my pharmacist was WONDERFUL and spent an hour on the phone convincing my insurance company to cover Zegerid. Apparently we didn’t follow the insurance company’s “textbook” guidelines for trialing several medicines before Zegerid. They finally gave in and have us covered with just the co-pay for a full year. Something to think about!

Hang in there!
Amy

September 13, 2006 at 7:10 pm #13502

Anonymous
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for us, the first 2 days i just check it his head for red spots, but he pretty much starts wearing it 23 hours a day right away. poor kids 🙁

the doc said she wants to re check his weight at 5 months. she said if he doesnt gain soon she will be concerned. does anyone know what they can do if a baby isnt gaining wait appropriately?

Christine,
Trace is on neocate and has a high PPI dose. i just think he is a high needs baby. 🙁 VERY exhausting, and i get just about zero help.

amy, i dont know for sure but yes he could be teething. i dont see anything but he drools all the time and chews on everything…..

god i know this sounds awful, but i cant wait till he turns 1. maybe then he will become less high needs and the reflux will be gone and it will get easier!!!?

nataliachick72006-9-13 19:13:26

September 13, 2006 at 7:13 pm #13503

Anonymous
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oh and amy-thanks for the info on the zegerid. i am going to keep him on the prevacid for a year, and then after that i will try for the zegerid again if he still has reflux. i hate insurance companies!!

September 13, 2006 at 7:50 pm #13505

Anonymous
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Natalia,

I truly understand where you are coming from. I so desperately wanted Eliana and Myles to grow up FAST because they were so hard and I get almost no help as well. BUT, they both became much easier once the reflux was gone and when they started crawling. I know that seems like an eternity right now, but it goes by so fast.

Anway, just a though, but did you have his ears checked again to make sure the amoxicillin worked and his ear infection is gone? My doc always says check again in 3-4 weeks but if my kids are still irritable I take them to our local Health Services Dept. (convenient because no appt. needed) and the nurse practitioners there will take a look at the ears. The last time, sure enough Myles still had an ear infection after nearly a week of amoxicillin. After a few days on Zithromax he was finally better.

Has Trace always been high needs? I ask because in my experience with infants, many times when holding them is not enough and you have to stand or walk with them (beyond the newborn period), it is often due to one of two things; 1.something is bothering them and walking with them helps to distract them, or 2. they are bored, and walking with them gives them something to occupy themselves. Just something to think about…..

I hope easier days are ahead.

September 13, 2006 at 7:57 pm #13506

Anonymous
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If he’s not gaining weight you can talk to your doctor about fortifying his formula (adding extra concentrated formula to his bottle) for extra calories. Bryce has always been on fortified breastmilk because of all his issues and all the spitting up. Unfortunately, even that hasn’t helped lately . Anyway, that’s something to consider. Is he spitting up a lot? Or just not eating much?

Don’t worry, I’ve had those same thoughts. I feel guilty – like I’m wishing my son’s babyhood away, but sometimes I just can’t wait until all this is behind us!

Just curious – do you have the clear helmet?

September 14, 2006 at 10:14 am #13538

Anonymous
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Natalia,

Sorry to hear that you are having a hard time with Trace right now. I agree with Christine to double check and make sure his ears have cleared. Other than that, if you’re sure it’s not the reflux, you might have a high needs baby on your hands. Both my kids were high needs… Hailey bordering on pathologically, I often thought. But even for her, she did get much better behaviourally around 11 months or so (and she was an extreme case).

As for spoiling a baby… I reallly don’t believe that you can spoil a four month old. Hold him as much as he wants it (or as much as you can stand). Our doc is a firm believer that the best thing you can do for a baby is “spoil them rotten”, because you can’t actually spoil them when they’re so young. I know that I’ve spoiled Hailey, and just now at almost 16 months, she’s starting to manipulate us a bit because she’s getting a bit smarter. But I still tell myself that we’ll deal with those issues later on when life calms down for us.

Having a reflux baby is hard work, especially when you don’t have help. Don’t feel guilty about having him watch baby einstein a few times a day, if he’ll do that. You need to find time for yourself too, otherwise it’s just so draining. Does he like being worn in a carrier? If so, that might give you some relief.

As for the helmet, just ignore people that stare. People stare at anything that’s out of the ordinary, and that’s something that’s their problem not yours. My kids are of mixed descent, and people often stare at them when we walk by… I know they’re probably wondering if they’re my biological children or not, since there’s no resemblance between us at all. I know that many people I’ve talked to who have kids with ng tubes have said that they hate the stares. But my point is, that who cares what strangers think anyhow, it’s your family and friends that are important, not others. So try not to worry about that too much.

Heather- I also hope that you can get a break soon, and that Bryce does well with his helmet. I really do know how exhausting this is. I hope that all of our kids can get some relief soon.

Hang in there. HUGS.

September 14, 2006 at 11:44 am #13549

Anonymous
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thanks lori, that helps. what did you mean by hailey bordering pathologically?
i do believe he is high needs, he has been like this since about 2 months old…

brycesmom,its a whitish clearish helmet. did you get the docband? thats what ours is called. he was screaming all night yesterday because he hates it, once i took it off he was fine. its funny because everyone in that office said babies dont mind it at all and dont even realize theyre wearing it! yeah right! i actually didnt have him sleep in it because i didnt want to deal with it, though i know that will just slow down any progress

we are actually going in today to get it adjusted because the front part keeps pushing down on his eye.

September 14, 2006 at 12:35 pm #13557

Anonymous
Inactive

Hi! Ryann just got a docband last month too! She has a long narrow head because she was in the sling for the first 9 months. It’s hard at her age to keep it on, not to mention it is over 100 here in texas daily so the sweating is horrible. It can really start to smell so i am putting it in the sun for an hour a day. I don’t think we have gone one day with it on for 23 hours, she just can’t get comfortable sleeping in it, like we need anymore sleeping disturbances. It took a while to get used to all the stares, but I know it is only for a few months. My kids had fun decorating it with rub ons and stickers. Now it looks cute and she likes her “hat”. I hope it is successful for him. You’ll have to save it for him and show it to him when he gets bigger.

I hope he starts gaining soon. I know some mom’s have added oils to there babies bottles so they can get some more fat into their diet. I just saw a nutritionalist for Ryann and she reccommended this and feeding her avacado. DD never could handle rice or oatmeal added to her bottle so she couldn’t gain the weight that way. She really didn’t start showing improvement until she got off of neocate and alimentum. I hope you find something that works for him, once they start the behaviors it is difficult to stop them. They have been in pain for a year and have different coping mechanisms. I totally understand how you feel having a baby that reacts like a 2 year with the tantrums and screaming. It hasn’t gotton easier with Ryann she still throws herself down and kicks, arches. But… we taught her sign language around 9 months old and she does alot better because she can tell me some things. Best of luck !

September 14, 2006 at 12:44 pm #13558

Anonymous
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I’ll give you the abridged answer of why I said pathological (which knowing me will still be a novel ). But Hailey’s problems during her first year started with reflux, which led to sleep feeding. The sleep-feeding basically kept us isolated to the point that we could hardly leave the house except for medical appointments. We couldn’t take her to playgroups or anything, and we were paranoid about illness because everything affected her feeding, and we were teetering on the edge of a feeding tube. Add all that to the mix of a VERY high needs baby who never slept or napped, who was in serious pain from esophagitis and starving herself because she was afraid to eat, and what we ended up with was a hysterical child who LITERALLY needed to be held non-stop for the first 6 months of her life (and even beyond that). Our ped told us that she had “social anxiety disorder”. When her nonstop crying (which our ped described as “relentless” and “not normal” continued even when she was 9 and 10 montsh, her ped was quite concerned, and mentioned several times that he worried about autism. We had many people from EI coming to our home. Hailey became petrified of anything and everything. No one could look at her or she would go nuts (and I mean NUTS), she could cry for hours. Things would set her off and she couldn’t stop (little things, like the sound of the door opening or the blinds being pulled, noises, people’s houses, etc). On top of her reflux issues, and her eating issues she had serious sensory issues (and she still does). She also had developmental delays, social delays, and severe psychological anxiety. We saw a pediatric psychiatrist when she had her feeding issues at the worst, and we also saw a pediatric psychologist several times. On top of that, we saw a whole team of other people (OT, PT, SLP, and many docs). She still has sensory processing disorder, which I believe was caused by suffering with pain for so long and being stuck at home beyond what’s normal for children. I think that if her reflux was controlled early on, she would always have been “high needs”, and even likely a child who was hypersensitive to her environment since I’m the same way. But I don’t think it ever would have become as bad as it did. s&h’s mum2006-9-14 12:45:21

September 14, 2006 at 4:00 pm #13584

Anonymous
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Natalia-
Bryce’s helmet is a Starband, so I guess it’s just a different brand. Do you think it would help Trace to slowly work him up to the 23 hours? We’ve been doing that, and so far Bryce hasn’t minded it too much. Yesterday we did the 1 hr on, 1 hr off (cycling it) and off at naps & night. Today we do 2 hrs. on, 1 hr. off cycling it, then off at naps & night. Tomorrow we increase the time on and it’s the first day wearing it while sleeping, etc. I don’t know. That might help.

Sarah-
I didn’t know Ryann had a helmet! Bryce’s was caused by the same problem – always letting him sleep in his carseat because of the reflux when he was younger. It’s funny you mention giving them avacados for weight. We’ve been adding pureed avacados to Bryce’s milk (along w/ bananas for taste) for the past couple weeks. He’s getting weighed tomorrow so we’ll see if it worked.
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