HELP! MSPI? Reflux? I'm totally lost

[Anonymous]

Okay, so I’ll make this as brief as possible. My 10 week old DD has been fussy since birth. My older daughter had mild reflux, so I recognized a lot of the symptoms (pulling off while breastfeeding/crying/arching back) and took her to the ped at about 3 weeks. They put her on zantac, it did nothing but make her an insomniac. Visited a lactation consultant who confirmed I have overactive/forceful letdown and thought she had thrush, even though a white coating on her tongue was the only symptom either of us had. Treated that with nystatin for a week and took her back to the ped when we saw no improvement.

Ped put her on prevacid (compounded), and I eliminated all soy and dairy from my diet. We did see some improvement, but about a week later she was back to crying in pain a lot, not to mention they seemed to give her headaches (she’d shake her head repeatedly and quickly run her hands back and forth over her head). We found a new ped after the first one pretty much wrote us off. They switched her to the solutabs. They made her miserable. The head-shaking got worse and she spent the two days we gave it to her screaming (I should mention that she does have a decent amount of happy time where she’ll just hang out and talk/smile, but when she’d get fussy, it was full out screaming). I stopped giving it to her two days ago, so she has had no meds at ALL for two full days. Today she was great, very little crying, and just a little fussing. The dr. prescribed her levsin drops and we tried those when she got kind of upset earlier and she calmed right down.

At her appt today they tested her diapers – absolutely nothing abnormal. The new ped suggested I continue with the prevacid (she said baby wasn’t on it long enough to decide if she was truly getting headaches because of it), adding in axid, and doing a trial of stopping breastfeeding and giving her elecare.

I don’t really want to do any of that. To be quite honest, I question if she actually has reflux at all. She doesn’t spit up (though my older daughter was a silent refluxer). She doesn’t mind lying on her back. She does pull of while feeding still, but it seems to be related to gas (often tries to pass it while feeding.) The prevacid made absolutely no difference. And, all along she’s had streaks of good days, and after two days of having no meds she had a great day today. I sort of question the MSPI as well for the same reasons.

Do reflux and MSPI come and go? I don’t want my little girl to be in pain, but I don’t want to mess with breastfeeding if I don’t have to — from everything I’ve read here and elsewhere, it seems like switching her to elecare for a week isn’t really going to show us anything. Her poop is sometimes a little mucousy and sometimes foul smelling, but neither all the time, or even all that often. Clearly something is causing her pain, but am I naive to think it’s just that her digestive system hasn’t fully matured yet? Or that her system is just upset from being given so many meds since she was 3 weeks old? The new ped’s suggestions just seem a bit drastic considering we’ve only been dairy/soy free for three weeks and she had such a good day on absolutely no reflux meds.

Sorry for the book, I’m just grasping at anything that might help at this point.

I should also add that I hold and/or wear her during the entire day, so she’s almost always upright, but she actually is a better sleeper at night where she’s flat on her back for 10+hours. She does wake to feed a few times still, but mostly goes right back to sleep. She’s sort of grumpy in the morning because she gets gassy and usually poops first thing.ASquare2013-01-07 22:08:24

[hellbennt]

as always I’m rushing out the door- do NOT stop breastfeeding! if you don’t want to! no need!

I WOULD do the TED diet, just to rule out any proteins that may be affecting her

if the TED seems to hard (I did it! and found out my lo was not MSPI BUT I DID find out there were certain foods he reacted to when I ate them)

then start out by cutting ALL dairy & soy (including ‘hidden’ as ingredients- more about this in links you must read)

the upper right-hand corner of this page has the Search button ! it’s your friend!

do a search for

1) GROUPIE INTRO

it’s loong but it WILL HELP YOU

2) do a search for

Erin’s Sticky

3) do a search for zantac dosing

(this has PROPER axid dosing there!)

4) give highest axid dose by weight

5) do a search for

Prevacid 101

6) do a search for

Probiotics, brands used

ok that’s it- you’re good to go!

more later!

~laura hellbennt2013-01-08 07:55:04

[Anonymous]

YOU are the mom! So I’d say that you are the one that will make the best decisions for your little one! 🙂 I agree with Laura, DON’T quit nursing! And I personally wouldn’t give the meds either. You can always change your mind later if you think she needs formula or meds.

I created a blog about what all we found to help our little ones with their reflux and food intolerances and I’m sure you would find it of interest. (See signature) Be sure to read the page titled “Side effects of Prevacid”.

Also the page titled “C-sections and Breastfeeding” I think would interest you.

If your little one has thrush, that is a sign that she is low on probiotics. You can read my home page to learn more about probiotics and also the page titled “How to choose the right enzyme/probiotic supplements”.

I hope that soon you can get it all sorted out! (((HUG)))

[hellbennt]

I wouldn’t necessarily say to not give medication, but, if you’re on the fence, I would give the PROPER axid dose and see if it helps. It’s ‘mild’ in that to start & stop it isn’t as big a deal as it to start & stop a PPI…

Zantac dosing- my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

how much does baby weigh? from the link above, there’s a link to a conversion chart (from pounds to kilos)

tell me baby’s weight in kilos and what the axid dose is (from link above) & I can help you figure dosing out (if you need help)

[Anonymous]

When it comes to meds, its probably better to follow Laura’a advice than mine. 🙂 It just is frustrating to me if a doctor pushes meds if the person may not really need them. I try to stay away from meds as much as possible but sometimes we have to have them.

[Anonymous]

Thank you both! Today started out good but she started crying midday so I broke down and gave her the meds. If you’d be willing to help figure out dosage I’d sooo appreciate it! She’s 12lb 2oz. The script is for 1.7 ml 2x/day. I hate giving her meds, but hearing her cry in obvious pain makes me willing to do it. And she’s been crying a lot while feeding and I’m just scared to death of creating a bad association. :(. I’m not switching to the formula tho. I just can’t do it until I know I’ve exhausted all other options. I’m starting TED as of today. Didn’t see this in the links I was able to read through ( not much free time with the baby, a toddler, and a husband that travels for work 40 weeks/year), but is there any kind of cereal that’s TED compatible? I’m not sure I can eat turkey for breakfast. 🙂

Thanks again, we have a 2nd opinion dr appt tomorrow, but you’ve made me feel much better about not following dr’s orders. I hate her being in pain, but I just don’t see putting on formula, no matter what kind, when she’s only had BM is going to help her. It’s nice to have people who’ve been there and get it. So thanks.

[Anonymous]

Quick question on the alkaline water tho. Can you give it to a 2 month old? How much? In just wary of giving her any kind if water at such a young age.

And exactly which probiotic did you take? This one? http://www.corehealthproducts.com/products/digestive?idev_username= I’ll order the damned things tonight!!ASquare2013-01-08 20:10:38

[Anonymous]

I sure know the up-and-down-not-know-what-to-do feeling! It is no fun! ((HUG))

Yeah, we use the “Digestive Health” from Core Health Products. I’m sorry I didn’t give you links earlier to those pages on my blog. My computer is not behaving right and so now I am using my husband’s. It’s ok if you didn’t have time to read it all. I know how it is with little ones around. As far as how much of the Digestive Health to give here is a page that tells about it. http://help4acidreflux.wordpress.com/dosage/ But feel free to ask questions if that is not clear enough.

Also you should be aware of temporary side effects from probiotics and enzymes. http://help4acidreflux.wordpress.com/side-effects-of-probiotics-and-enzymes/

Here is a statement from Micaela’s story. (I’ll copy it so you don’t have to read her whole story.) So I denied the referral to the GI and order the Probiotics/Enzymes, I remember I started him on a thursday and friday, saturday and sunday were the worst days for my Leo but I had also read the side effects and detoxification process so I waited and on Monday we had a loving, happy little guy. I was still skeptical that he was going to regress but no. Every day is better and better, he now started to giggle and laugh and he started sleeping throughout the night. I has being a month from his recovery and I thinks it’s all thanks to the probiotics. He does not need cereal on his bottle anymore.

If you have time to read it, I think you will find this of interest too. http://help4acidreflux.wordpress.com/should-i-quit-nursing-and-go-to-formula/

I am not saying that probiotics and enzymes are the cure all but I do know that they have helped many!

I used alkaline water on my baby as soon as I started supplementing with formula (probably when she was around a month old). A friend said they it right away on their newborn. I am not the expert on it but as far as know, there is not reason a baby couldn’t drink it. But it is not good for a baby to fill up on water rather than milk. Does she get any supplement bottles? If so, you could start making them with half alkaline water and half whatever you are using now. If there is no adverse reactions then you could make the bottle with all alkaline water. If she takes no bottles, then you can give her the alkaline water with a dropper. It might help. It sure does for my children. I mix Shiloh’s Digestive Health pill with 3ml of Kangen water and after she drinks that I sometimes fill the dropper with just water and let her drink it. I have been amazed over and over with my boys and Shiloh too how fast and well the 9.5 water will calm their stomachs.

As far as different kinds of alkaline water, we have a machine that makes it (kangen water) but you can buy just plain alkaline water in some health food stores. The water that our machine makes, is not only alkaline but it is microclustering which means the molecules in it are broken down much smaller and so therefore are very easily absorbed into the body. Also it is an antioxidant. So the water you buy may not work as well or the same as what we use. If you have time you might find this demo about Kangen water interesting. http://www.kangendemo.com/

I have never tried this water but someone told about it and said they were thinking of using it for their little one with digestive problems. http://www.evamor.com/ Some stores sell it. The pH of it is 8.8 and what we use is normally 9.5. But beings the machines are fairly expensive, I’d say this be worth a try first. I’m sure there are other brands but this is the only one I’ve heard of and the claims about it sound good.

[Anonymous]

P.S. You could try drinking the alkaline water yourself beings you are nursing and see if that helps any. 🙂 I don’t know about the alkaline water that you buy but the water that our machine makes can cause your body to detoxify and make symptoms temporarily worse. So if you decide to try some alkaline water and it seems to make you or baby worse, that might be why.

[hellbennt]

TED diet: rice

you need to find a cereal that is ONLY rice – puffed rice, maybe even babyfood rice cereal – but you need to read ingredients and make sure there’s nothing added – no milk no soy or any of their HIDDEN names/forms

TED diet potatoes:

roasted potatoes in a skillet or in the oven made with olive oil

ground organic, free range turkey

ground organic, free range lamb

(you really need to google/search the Dr. Sears TED diet to get all of what you CAN eat- this is off the top of my head!)

pears! get pear juice, babyfood pears, whatever and add ice & some rice milk (nothing added to any of these!) and make a smoothie!

12lbs 2 oz = 5.5 kilos

dosing for axid (don’t just take my word on this! read from the link above!)

is 10mgs/per kilo given in 2 doses

so 5.5 x 10 = 50 mgs a day

what does the bottle say?

it should say a number mgs/mls

does it say 15mgs/ml ?

if it does, this means that for every 1ml of the liquid w/ the medicine in it, your baby gets 15mgs of the medicine

so, to get a 25mg dose (baby should get two 25mg doses, which equals 50 mgs total for the day)

it’s 1.7mls a dose

two of these 1.7ml doses

*that’s what your doctor says! so, when baby gains a kilo you can adjust the dose accordingly, as these meds are very weight sensitive*

hellbennt2013-01-09 19:23:56

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