new and need advice

[Anonymous]

little background: (nak, forgive typos) my lo is almost 6 weeks old. she started showing signs of MSPI/sensitivity almost immediately (her brother had mspi). I cut dairy when she was 3 days old – she had explosive poop, was refluxing, and really gassy. Three weeks later, I cut soy for acidic diarrhea. She was still getting really fussy/hard to settle and stopped sleeping as well (went from napping well to not napping at all. So after some experimentation, I cut out the top 8 plus corn. Wheat was the last to go 4 or 5 days ago. Still had the same symptoms, but not consistently. She’ll have a great day, everything normal, and then 2 days of total fussiness and pooping problems. I started a modified TED yesterday, following the Dr. Sears guidelines minus the lamb, and adding olive oil. Last night was one of the worst nights we’ve had in a while, with her wanting to comfort nurse (as she is today) and very mucousy diapers.

So, here’s where I need your collective wisdom:

*Do I push on with the Ted and hope she’s having her 6 week growth spurt, or should I get rid `of rice?

*I realized yesterday & today that we’ve had some soy contaminations (vitamins & olive oil) – should I back off the TED for now and give her a week or so to see if she clears? I’m already hating it and am really worried about supply issues.

*Why would she not have consistently bad days? I have a hunch but want to see if anyone has any thoughts.

*She’s currently not medicated, and I would like to try and keep her off (her brother was on Prevacid and had horrible insomnia). Nylanta Cherry Supreme isnt available. Any thoughts on how to help her pain? I tried crushing up Maalox, per marci-kids, but it’s kind of a pain.

thanks in advance

[hellbennt]

you can find store brand equivalants to mylanta cherry supreme, try cvs, riteaid, target, walmart, etc and also online…just look to find the variety that doesn’t have aluminum

I would go through the two weeks of TED (I did…so it’s not ‘just’ me telling you to do it)…

have you read:

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

babywearing SAVED US!
https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

http://www.thebabywearer.com/forum

Milk allergy/night wakings/lLoveMySophia:
https://www.infantreflux.org/forum/forum_posts.asp?TID=10017&KW=

[Anonymous]

thanks, yeah read all that. I got the generic MCS a it didnt seem to work.

[Anonymous]

Quick update: after 24 hours on TED, she has the worst gas she’s ever had and cant’t sleep longer than an our max (more likec20 minutes in arms). Wha should I do? Somebody please help me?

[Anonymous]

It sounds like she needs medication. Can you call and make an appointment for her Ped today?

[Anonymous]

I can. I’m waiting o get order forms from marci kids. Don’t really want to medicate her if I can control it with diet, but realize she may have mechanical reflux along with reflux caused by intolerance.

Is it too soon to start dropping the current foods I’m eating?

[hellbennt]

I would give it two weeks- the gas could be getting things through her system? If you were to cut something out, I’d say the rice and I’d also say to really check all that you’re eating, ingredients, even things like vitamins, medications, etc…

If there was no stinky gas before TED, then try & figure out what’s different?

From Erin’s Sticky:

So… I would track the stinky gas. I would also go back on TED. While tracking stinky gas, I would wait until 4-5 days of no stinky gas, then call that your ‘baseline’. Then, continue that diet until the blood & mucous goes away. Then, your db has baselined. Then, you can consider adding something to your diet. If after you start TED again after 4-5 days she’s still having stinky gas then she’s reacting to something in the TED & you’ll need to adjust (my dss reacted to 3-4 things in TED)… but don’t worry about that yet- we’ll deal w/ that if we need to.

From Erin Post, above:

Your ds sounds so much like my Evan. His diapers were green & mucousy pre-TED but once I started traditional TED they got SO MUCH WORSE. I finally realized he was reacting to rice, turkey & pears (he’s still intolerant to turkey & pears).
When he reacts to something new you try to add in does he get the stinky gas? Or just the diapers change… I ask b/c he could have a bad day/diaper & not really be reacting to something in your diet (as long as there’s no stinky gas to go along). If he’s not having stinky gas (& even if he’s only having a little) I would give it @ least 2 days of eating the item 2x/day before calling it a ‘fail’.
I would definitely add in the enzymes. I highly highly doubt they will affect him as they are very ‘safe’. I gave them to Evan sometimes (in water) before he started solids… & then definitely when he started solids (& still do them). Also, are you doing a probiotic for him?
I know it’s so hard & confusing but hang in there.

hellbennt2011-06-13 11:06:41

[Anonymous]

I was going to add that maybe it was something hidden in your diet like Laura mentioned…really check every label esepcially since you had problems with vitamins and oil. And then give it two weeks. My LO took over two weeks to be symptom free. I loosely followed TED, meaning that my LO did okay with me eating chicken, apples, bananas, in addition to the core Dr. Sear’s foods. I will say thought, like Erin’s sticky post, my LO cannot tolerate pears at all!! I’ve tried several times and it seems odd because pears are supposed to be one of the least allergenic.

I’m not sure that’s much help, but hang in there!

[Anonymous]

Thanks for the responses. She still really hasn’t had any improvement, nothing significant anyway. I’m having a hard time with the turkey, so I’m switching to chicken, and swapping the rice for quinoa, even though it’s gross. She’s going to the chiropractor tomorrow, and then to my sons pedi gi on Friday. Her diapers are still full of mucous, which leads me to believe that it’s gastrointestinal. I’m so frustrated.

Still searching for meats with no added flavors.

[hellbennt]

as per erinn (links above) the mucous is the ‘last’ to go…

Re: Baseline, I’m talking about waiting for visible blood & mucous to stop. Yes, when all stinky gas, mucous & visible blood is gone for 4-5 days you can declare ‘baseline’. Then, you can start trialing food one by one. Usually, I would eat it 2-3x/day for 4 days in a row to be sure before I declared it a success.

… my Evan. His diapers were green & mucousy pre-TED but once I started traditional TED they got SO MUCH WORSE. I finally realized he was reacting to rice, turkey & pears (he’s still intolerant to turkey & pears).
When he reacts to something new you try to add in does he get the stinky gas? Or just the diapers change… I ask b/c he could have a bad day/diaper & not really be reacting to something in your diet (as long as there’s no stinky gas to go along). If he’s not having stinky gas (& even if he’s only having a little) I would give it @ least 2 days of eating the item 2x/day before calling it a ‘fail’.
I would definitely add in the enzymes. I highly highly doubt they will affect him as they are very ‘safe’. I gave them to Evan sometimes (in water) before he started solids… & then definitely when he started solids (& still do them). Also, are you doing a probiotic for him?
I know it’s so hard & confusing but hang in there.

I had lots of stinky gas myself w/ the turkey as well. Consequently, my ds was intolerant to turkey (took me a while on TED to figure this out). BUT, even now when I eat ground turkey (ie: I made turkey meatloaf last week) I have stinky gas after so maybe it’s just a difficult protein for some ppl (you & me lol).

[Anonymous]

Thanks, yeah I read that. The problem is that she’s starting new symptoms, like the blood that I just found in her diaper. That’s new. So, I’m dropping down to just millet, oil & water for a few days and see what happens.

[Anonymous]

Oh gosh! I wish I could be more help:( I hope you can figure this out.

[Anonymous]

So for about 48 hours now, I’ve been eating only millet, oil and water. I feel like sh*t. Ellie showed slight improvement in that her gas went away, but is worse in that there is now blood in her stool. Overall, she’s not really getting better.

We had an appointment with the ped gi yesterday, and she tested and confirmed the blood.

She wants to me only do the diet for 5 more days, and then make a decision whether or not to put her on formula, or just live with the mucous and blood. She’s of the opinion that if my diet has been so restricted for so long that Ellie just might not be able to to tolerate my breast milk. I agree. But the formula could make her worse too. Don’t really know what to do. Actually, want a WANT is to put her on a ppi, go back to a mspi-based diet and have it work so that I can keep breast feeding without starving myself. But I know that a ppi won’t deal with blood, and I don’t want her to have to deal long term with open sores in her intestines.

She also doesn’t want to medicate her, since she doesn’t reflux too much and isn’t displaying ‘colicky’-type behavior. But she did give us something called Levsin, which is an anti-spasmodic and was supposed to help with her constant pooping. However, it did not. She screamed after the first dose, and then had horrible reflux all night combined with insomnia. Loverly. I got about 2 hours of sleep.

Veeeyloova2011-06-18 13:45:21

[hellbennt]

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

[hellbennt]

can you try eating avocado? it’s a good fat and I can’t imagine it affecting your baby? I could be wrong…how about potato? plain boiled potato?

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