mom with 6mo MSPI Silent Reflux Unhelpful Ped

[Anonymous]

Hello!

I’m so grateful to have found this forum, with such a wondeful admin! Laura, your intro was awesome! Guess I’ll have to research on a real cocomputer instead of on my phone with my sleeping boy in my lap.

My son, Bear, has MSPI & silent reflux. Our pediatrician came recommended from my own doctor and she’s very nice & sweet, the 5 minutes we see here during appts. But it took 4months to diagnose our son, basically I just told her what he had, then another wasted month on zantac, then finally prevacid, which worked for two weeks. The prevacid was compounded with flavoring, so i went back and insisted on granules, we’re on day 4 with those. He had gained 2lbs but they did not adjust his dose.

We have another month til we get in to the GI.

I EBF, I eat no dairy/soy/gluten/peanuts and very few gas producing or acidic foods.

We’ve so just started hypoallergenic probiotics & as of today, aloe vera juice as well.

I just spent the entire morning in Tears after accidentally learning the mylanta we’ve been giving him, after two pediatricians said it was ok, is in fact not ok & we were giving him large amounts of daily aluminum.

Everyone is tired & poor Bear is trying so hard to rest.

[hellbennt]

Welcome!

Don’t beat yourself up! The mylanta w/ the aluminum is fairly safe, it’s just that most, once they know (like you!) would prefer NOT to give aluminum to a baby…

how do you know that he has MSPI? have you seen a difference with your diet?

how old is Bear?

so glad you found us!

[Anonymous]

Oh yeah I forgot to put his info

Bear is 6months on 10mg/day of omeprozole

I went with MSPI after he poop turned into dark green water with mucous, at 1mo, his doc wouldn’t even entertain it as a possibility and being veryn gluten intolerant myself I remember my doc once saying that about me. I rooted out every hidden source of soy & dairy and exactly 10days later we had orange poop with bits and everything. Ate tacos at a place that was supposed to be soy free (missed the sign that said exception was the chicken, and we had green poop for 4days straight. We still get some greens, I don’t eat out anymore or even leave the house so I’m going to keep a food journal to see if i can make a connection for these random greenones.

Thanks for the mylanta info, I went to crazy lengths to gaurd against all chemical exposure I could as soon as I got pregnant, stopped volunteering at at the animal shelter, even changed our deoderant. I have a brain tumor caused by atrazine exposure so I’m pretty sensitive about trying to protect him.

This forum is great, I’m just going to read every post I can!

[hellbennt]

my guess is that the PPI dose could go higher

Prevacid 101:
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

you might think that I’m a drug-pusher, but I also tried everything natural, etc, and the ONLY thing that worked for my son was high doses of PPI…and zantac, too…and babywearing…

however, he didn’t have MSPI…
I know bcse I did the TED, etc…

best EXPLANATION OF FOOD ALLERGIES/INTOLERANCES 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

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/forums/topic/probiotics-70/

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

Mylanta Cherry Supreme is the one variety of mylanta that does not contain aluminum. you can’t find it anymore, but you can find store brand equivalents. Try rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.

you can look online to find store brand equivalents.

here, I did a google search:
http://www.rxzone.us/product.cfm/rx/medicine/antacids–laxativesnbsp/genericantacids/Antacid-Liquid-Cherry-12-Oz-710723.html

http://shop.mywebgrocer.com/shop.aspx?&strid=55DF78707&shopurl=ProductDetail.aspx&pid=75998&clk_src=seopd&sc=SEOPD_CA_4795D138-B97E-465B-9428-AF62E970711D

cvs brand: http://www.cvs.com/shop/product-detail/CVS-Antacid-Liquid-Supreme-Cherry?skuId=191659

[Anonymous]

Wow! Your story sounds EXACTLY like mine. The GI Dr we took the twins to refused to prescribe a PPI though so I am using zantac and controlling the screaming by carefully eating nothing dairy/soy. One of the girls seems to be not gaining so well, but i’m the only one that thinks that so far. At their next ped appt we have to give the GI a report of theirnweighta and maybe he’ll do something else when he sees Emma has gained only 6ounces in a month and a half!

Good luck! Figuring all this out.is the hardest thing I have done.

[hellbennt]

how are you two doing?

please update

AND this post is good for newcomers, that is if they think that diet/formula/protein sensitivity is an issue…

hellbennt2013-06-18 22:09:53

[Anonymous]

I can tell you are a really good mama trying your best for your little one! Good for you in all your food eliminations!I am sorry your peds aren’t very helpful! 🙁 I know the feeling.

Something you might want to consider adding in for your little one is probiotics and digestive enzymes. Here is my story on how they helped my children.

https://www.infantreflux.org/forum/forum_posts.asp?TID=16038&PID=123639#123639Happy Mom2013-06-19 19:50:18

[Anonymous]

Hello!

Oh gosh thank you all so much for the great help!

Well I used to wear Bear a lot until he was 4.5months, then he decided it was time to move, although I still do the ergo baby when we go for walks or store visits. It definitely helped when he was younger.

I started probiotics about 10days ago, think they’re helping, it was the same time we switched his omeprozole from a compound formulation to the granules, so both helped. I got Klaire labs, hypoallergenic probiotics, he’ll eat the powder right off a spoon!

We’re starting slippery elm instead of aloe juice (aloe juice tastes like sour plastic, it wasn’t going down easy.)

We had our pediatrician ask the pediatric gastroenterologist for a sooner appointment, it worked! They scheduled us two weeks earlier! So we just took him in yesterday morning and I love this doctor! He was wonderful, really listened, went over all the alternative therapies with us. My main concern, after researching my brains out, became esophagitis. Especially considering how long it took to get Bear diagnosed & on any treatment. The GI agreed with me and we changed his meds to lanzoprozole at 15mg, splitting the dose one in the morning one at night. Its only been two days, so no change yet but I’m excited to help Bear finally feel really better.

Its pretty hard timing wise to get the two doses in with the empty stomach & waiting 30mins after, between solids and BF feedings and naps, but we’re working it out so far. The plan is to walk the meds down after 2months when it should start to improve with development.

The GI said to start him on green beans and peas before cereal or bananas, which I was surprised at, he said refluxers are different and tend to do really well with those.

He also heartily agreed with no dairy/soy based on my detailed poop description and calendar. I like cheese, but not as much as I like a happy baby.

The Gi doc called us dream parents for doing all the stuff we are and I had to tell him we found a great forum online with amazing people who know what its like, he was impressed!

We did order the CVS mylanta, since we’re near Seattle that was the only way, but the GI said he really doesn’t recommend it. So we’re keeping it for super emergencies only.

So all and all I think we’re on a good road, I wanna focus on healing his gut, keeping him healthy.

I got yelled at on Father’s day by my father in law because I’m so careful to keep Bear on his routine (hard when he won’t sleep or eat if its not at home) that we asked them to come over to our house instead of us going over to theirs. Then I asked my sister in law to wash her hands before letting Bear chew on her finger (illicited a huge eye roll and a huff) even though I explained that people on PPIs are more susceptible to C.Diff infections, which would totally ruin his progress not to mention cause him a lot of pain, she does not have kids. So now I’m the crazy mom who is being too protective, but ya know what, they can swy whatever they want, I’m doing what’s best for my son and Im confident in that! But now I feel like crap for my husband since I really don’t want to be around his father ( no one wants to be around my sister in law, but hubs likes his brother & she runs the show) sorry to bring up family drama, its been four days and I clearly am still upset. How can people who are supposed to love this little baby not want to put his needs before their wants?

My parents aren’t around so these are our only support system, although so far they usually say they’re on their way to happy hour when I ask for help. I spent almost a decade doing what they want and At this point I’ve only got enough energy to make Bear happy, everyone else can shove off!

Again, sorry for the drama, had to vent.

I would switch docs if mine wasn’t listening or interested enough in healing LOs pain. I wish, oh how I wish I’d have gone straight for a good GI when the pediatrician said it was colic. Even a pediatric nathropath. Oh the coulda woulda shoulda list that starts when you have a baby!!!!

-Sadie

Mama to Bear, MSPI silent reflux

15mg/daily lanzoprozole

[hellbennt]

so glad to read your good news!

Could you please share your doctors’ info? In the Pediatrician/Specialist forum – its so hard to know which dr to go to…

There’s slippery elm info here, too, thanks for reminding me – search 1 year & older

I hear you about the family drama! My ‘issue’ is car seats nowadays (why do they need to be in a car seat for so long? How long does he have to be in a booster?) – I suppose if it’s not one thing it’s another!

Hang in there & please share as you go along & find what works for you & your baby!

Laura

[Anonymous]

WOW I like your detailed reply. I am so glad you got such a nice GI!! I hope things continue to get better for your little one!

Don’t worry about the vent. I know just how you feel! You are being a great mom and try not to let what others think or say bother you. They don’t have to live with or take care of your child and don’t know what it’s like.

[Anonymous]

That is great that you are already giving your little one probiotics and I’m glad he gladly eats it. 🙂 Often times when a baby is low on probiotics, it is because he is low on digestive enzymes also. Not having enough enzymes to properly break down our food, often depletes our body of probiotics.

But trying too many new things at once is not a good idea so for now I would stick with what you’ve been doing and the new things the doctor has prescribed. But after awhile if you don’t see the improvement you’d like, then I’d suggest giving digestive enzymes along with the probiotics.

[hellbennt]

update? name of dr(s), to help others in your area? or, just an update in general also: i can help find links for solids

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