at my wits end!!!!!

[Anonymous]

I have been lurking around these forums for a while now and I think it’s about time that I chime in. Hi, I’m a FTM (and SAHM) of a 4.5 month old boy. He is the biggest joy and blessing of my life…but oh boy do we struggle to be happy. Since he was arounf 2-3 weeks he has just been so miserable. His Ped diagnosed him with silent reflux (he rarely spits up but would cry and arch his back during feedings, had sour breath, and screamed unless he was held upright at all times). It has been a nightmare to say the least. There were days where my husband and I didnt sleep just trying to get him to sleep…we would just walk around with him in our carrier like zombies…we tried wedges, sleep positioners, the tucker sling (worked well but the velcro sound would always wake him up fully and thus make it harder to put him back to sleep). As far as meds go I must say that I am a natural mama and generally against medicines but we caved in when he was around 8 weeks old and started up zantac. despite playing with dosages he never really improved. I tried changing my diet and removing dairy amongst other foods but it wouldnt last more than a week or two because it was nearly impossible for me to make dinner after a full days worth of holding my screaming baby and we often resorted to take out. Finally yesterday we went to a Ped GI who told us that he most likely had MSPI based on his green muscousy stools, extreme irritability/fussiness, and silent reflux. She also suggested he start up on omeprazole BID. My question is this: Has anyone had success treating SILENT reflux by simply eliminating all milk and soy products for a couple weeks? I’m at my wits end here but I don’t want to medicate if this is something that can be solved in a natural way. There are minutes during the day where he smiles and laughs and plays so nicely and developmentally he is right on track (weight and height are above average ) and he barely ever spits up…his main symptoms relate mostly to the MSPI…so I am hoping that if there are any mamas out there whose babes were diagnosed with MSPI you all could give me some support…let me know the downfalls, successes, tips, advice…anything to lend me a helping hand even if its just for the emotional support. I just can’t bare seeing how happy and content other babies his age are when he just seems so uncomfortable and frustrated. not only does he have this extreme discomfort but he is also very overtired due to his poor sleeping habits (naps 4-5x a day about 30 minutes and goes to bed around 7 and wakes up as early as 4am and cried till 6am)…thanks, and sorry for the long post…i guess i just needed to vent since I dont feel comfortable talking to other moms who dont understand what having a reflux baby is really like.

[hellbennt]

Hi & welcome!

I would read through ERINNTX posts- she’s a mama here who tried only to do diet…she’s remarkable!

she did wind up w/ prevacid, too, but she really tried to manage everything w/ diet…

the TED takes two weeks and then you start adding foods in to see what you CAN eat.

Research all you can! You are your baby’s best advocate!

Look for all posts by Erinntx! (be SURE to read her ‘sticky’ – the link is below)

here’s some more light reading for you :

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

THIS IS REALLY IMPORTANT:

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576

Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242

Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

erin posts that mentions enzymes:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12781&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12610&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12227&KW=enzyme

Post from me:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12200&KW=enzyme

[Anonymous]

Thanks…I’ve looked through a bunch of your posts. I have done a lot of reading…I’m not sure if I should do a TED or just the MSPI diet which is hard enough. I am also avoiding gassy foods such as cabbage, peppers, onions, garlic, broccoli/cauliflower..etc and also acidic foods like tomato products, carbonated beverage, excessiv red meat…I just want to avoid medicine since he doesnt really vomit. the main issues are his sleeplessness and irritabilty.

[hellbennt]

if you remove all milk & soy proteins and perhaps all beef, too, then you should see results w/ sleep.

erin describes how to arrive at a ‘baseline’ using diapers and gas and then she’ll add in a food, see how it goes and if it’s not successful, stop that food and try anotherone…

try avocados, they are a good fat and not likely to affect baby, but you never know. I’m glad I did the TED bcse I found my baby reacted to tuna and eggplant! weird! (also citrus & tomatoes)…

[Anonymous]

I think I will try the no milk and soy first. It’s hard enough and my gut is telling me that’s the main problem. If he isn’t happier in a couple weeks I will try the TED and if he isn’t better I will start him on the meds…thanks for the help.

[Anonymous]

Help! I started the TED 4 days ago and things havent changed AT ALL! same gassiness/fussiness/green mucousy diapers!!! Is this normal? I have been 100% strictly eating the following and nothing else: turkey, rice, potato, sweet potato, winter squash, pear, apple juice. When should I expect to see a change? he seems unhappier than ever and sleep has gotten so bad…wakes up every hour and a half at night 🙁

[hellbennt]

I would cut out the apple juice; the diet calls for pear…there have been 2 babies that I know of in the 8 yrs here that were intolerant/allergic/reacted to apples…anyway, aside frim apples, you need to stick w/ it. I’d say that if things aren’t better at day 7 or 8 then try cutting out the rice…there are lots of posts about how to do the TED, especially erinntx link, above…ok I just skimmed through erin’s sticky post & she’s very encouraging I don’t know is the kind of squash matters? I did yellow squash & erin did that & zucchini…anyway her post(s) are really informative & you can do this here’s a cheer for you hellbennt2011-11-26 23:01:17

[Anonymous]

Welcome mama. SO there may be many here that wont agree with me, but here goes anyway -food for thought. We had the same issue with DD by 4 weeks of age. SR and the whole gamut of symptoms. I also did elimination diets, cut out dairy, soy and everything in between. The first issue with elimination diets is that they take almost three weeks to start having an effect. two weeks for things to clear out of your system, and then another week to clear out of his. The second problem with them is that you are trying to eliminate EVERYTHING -you have no base line to start with, so it drives you insane!!! I’m of the same mind set to do everything as naturally as possible, and my husband and I hmmm’d and haaaa’d over medication, but in the long run, it was the best thing for all of us! Prilosec and prevacid are both over the counter (not that this means they should be taken lightly, but it makes them slightly less scary) Even though your son isn’t vomiting he’s in extreme amounts of pain, because with SR it burns on the way up AND on the way down. It’s a touch decisions, and I am by no means trying to discourage you from doing things the natural way, just to let you know that in the end, these meds can be a HUGE relief for the whole family. My daughter has been med free now since 9 months so there is a light at the end of the tunnel! Also, infant probiotics can really help with their tummies! OK, good luck and keep us posted!

[hellbennt]

yes, I’ve held back offering-up advice regarding medicating your son, Emommy706, because I totally understand; I also didn’t want to medicate and I FREAKED out when he was on: reglan, zantac and prilosec!!!

I found this board, researched all I could and right away stopped the reglan. I also did the TED because I was desperate and we even went to a QUACK (a therapy called bodytalk ) & we even did chiropractic care which, while it didn’t help, certainly did not hurt. In my son’s case he needed meds because his reflux was so severe and because after the TED I learned it was not my diet…

I really encourage you to read through Erinntx’s posts because she really went through everything the ‘natural’ way & is a true inspirtation!!

All in all you have to make the decisions that are best for you & your baby

hugs

~laura

from my first response in this thread there’s this link:

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

[Anonymous]

Oh, I forgot we used a chiropractor!! I actually think it did work for us some -although finding one that specializes in infants can be really hard. I don’t want to give the impression that I don’t support what you’re doing, I do completely!!! I guess what I was trying to get at in my earlier post is that IF, in the future, you choose to go the route of meds, don’t feel like you’ve failed. I think it’s really easy for all of us moms to put every ounce of blood, sweat and tears into our babies -because that’s what you do, and then if it doesn’t work it can feel devastating. I do think that these GERD babies do best with a combination of things: sleep positioning (the ResQ wedge was great for us) probiotics, chiropractor, diet, baby wearing, different nursing positions, etc. Hang in there, you’re doing great!

[Anonymous]

We actually bought a Tucker sling but it really didnt work for us…our little one started waking up from the velcro so it became harder to put him back to bed after his feedings. I really hope the TED helps him…is it normal for GERD babies to have explosive slimy mucusy green poos? he also seems to be straining with gas during his especially irritable moments…

I must say Im so thankful to have this website…its been so hard raising a baby with GERD and other people just DONT get it. Its so hard going to little mommy and me events because he just cries the WHOLE time (usually babies go on their backs…i bring my boppy pillow along but he is still isnt as happy as when he is the carrier)…my son also has pretty bad larangeomalacia so his breathing sounds super congested even though he isnt actually congested so moms always flip out and ask me “OMG?! is he sick? why does he breath like that?!”

Am i horrible for just wishing I had a baby who would just be content lying on his back looking around the world with wide happy eyes? I feel horrible that I’m so jealous of other mommies who can just tote around their little one who just sit their quietly and happily. He is also just so miserable from sleep deprivation that even when he is held in an upright position he is so unhappy and fussy…AAAAAAAAAAAAARGH when will this be better??? If i put him on the medicine will he sleep better? will he play nicer? He is so cute and appy sometimes I just wish his smile wouldnt fade into fussing and kvetching all the time…its psychologically exhausting…last night he woke up 7 times and today he only took 3 small 30 minute naps…this family needs him to sleep better so we can ALL be happier!

[hellbennt]

oh mama I’ve been there! really! even the mommy & me situation!

well, about the slimey poops & gas- NO that’s not ‘normal.’ That’s why I say to please read the link below, “Erin’s Sticky”…To be honest, I WOULD medicate AND do the diet and work on the gas and poop and, then when that’s all good, then you could try backing down/coming off the meds…the meds really are safe…of course no one wants their baby on medication! but if you see it helps, then you’ll know…and you can always play w/ the dose, adjusting it here & there to try to get it to be the lowest it can be for your baby…it seems like we all are drug-pushers, but really it’s because we’ve all been there – we’ve all been at a very similar place to where you are now…and we’ve given the meds and we’ve seen the difference…EVERYTHING takes two weeks, even the meds. The TED, the meds, ANY CHANGE takes two weeks…so again, this is a lot of patience & trial & error, some experimentation, but really IT DOES GET BETTER!!!

you are not a failure if your baby needs meds…sometimes it’s not just that theyr’e reacting to something in your diet- it’s also an immature valve- that’s what it was w/ my little guy- his LES (lower esophogeal sphincter was immature and not developed- it would open and close at whim (if it even closed at all, until it was developed), so that he would have HORRENDOUS reflux no matter what time of the day or night- it had nothing to do w/ when he ate- we knew this because he had reflux so bad he wound up in the NICU and he hadn’t eaten anything- well he did get some collostrum before he was whisked away for observation and then the reflux went so far up his esophogus that his lungs shut down to protect themselves- that’s apnea- he stopped breathing and turned dusky/blue…anyway, here’s

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

[hellbennt]

any updates?

[Anonymous]

Yes…I was going strong on the elimination diet but Wednesday night we were out with family and i didn’t bring any snacks…stupid…of course I got soooo desperate for food I caved in and ate a burger and a beer! Oh boy do I regret it…he had a flare up of course and i soooo regret that weak moment. BUT I also forgive myself cuz it was a onetime blunder. I’ve been back on since then and started last night with the 3mL of omeprazole. Other than the blunder he started to get better…less fussy, better diapers in color but still had mucus! They smell sweet and are now more yellow…why is the mucus still there? Sleep has improved slightly…he wakes for a briefer time and instead if 6/7 times its more like 4/5. I’m eating GF oatmeal for breakfast, guzzling pear juice and water all day, rice cakes and kettle cooked potato chips as snacks and meals consist of some type of turkey with potatoes, sweet potatoes, and brown rice. He is still very gassy, especially at night, but its NOT smelly…does this mean there’s still an allergy going on? I must reiterate that his fussiness has substantially dimished and he seems much happier (needing to be held less, plays on his own). I started him on the omeprazole in hopes that his sleep will improve. He is still a chronic 40 minute napper and I’d prefer it if he kept his nightwakings to 2-3 times (i wish!) because he started falling into a routine of of going to bed around 7:30, then waking at 10:30, 1:30, 3:30, 5:30 (this one is the longest, around 30-45 minutes of waking time because he is usually straining to poop and needs us to hold him) and then up around 7/7:30 for the day. Those early morning wakings are such a killer! Our Pediatrician is very pro the TED..OH i have to add I have been giving him mashed organic yams…i just put him in a bumbo chair with the tray and he plays with it…a but gets into his mouth. He seems to really enjoy it. His pediatrician suggested I try a bit of oatmeal at night before bed to see if he goes a bit longer with his first night stretch. (I should add he gained 9 ounces in 2 weeks so his weight gain is great, he doesnt necessarily NEED the solids although he nurses VERY often…I might appreciate the break!) Any thoughts? advice? tips?Emommy7062011-12-02 10:19:03

[hellbennt]

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126 this explains why the mucous is still there sorry- I can’t not type in bold for some reason…

if things are improving, I’d read all that I’ve given you (in terms of links) to know how and when to reintroduce more foods into your diet…

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