Home › Forums › Feeding Issues › Total Elimination Diet (TED) Basics › new and need advice
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June 19, 2011 at 7:10 pm #68537AnonymousInactive
I realized I cant really do formula since she can’t really tolerate corn. My son was less sensitive than her, and he couldn’t tolerate the corn in Elacare.
Her diapers are slowly clearing up! I tested squash today. If it passes, we go to a meat or avocado next.
June 21, 2011 at 12:51 am #68549AnonymousInactiveI’m so sorry to hear about your difficult situation! The first thing I thought was whether you are open to using/trying Zegerid? My second child at 6 weeks was a total nightmare with sleeping and I was already doing the elimination diet and had her on Zantac which only really worked for her for about a week’s time. Zegerid was what made the difference for us (and both my children have been on it). I believe it is the same as prilosec, omeprezole plus the stabilizer (that’s not the right term, but I can’t think of the medical word– the stuff that keeps it from being eaten by the acid in the stomach). But slightly different from Prevacid? Just a thought. Anyway, top 8 plus corn is pretty comprehensive. Although if you had soy contamination then I feel you need to give it a few more days with the totally clear diet. Are you nursing? Is your supply affected already or do you have low supply issues? I never felt any affects on my supply on very restricted diets….but I had oversupply issues and was always “feeding the world” even with very little meat on my bones during the worst of my elimination diet. Another thought I have is to try probiotics….but I can’t remember if the infant one we used was free of all the top 8 and corn….. we used Nature’s Way Primodophilus in a powder form that you could mix into breastmilk or formula. I mixed it and gave it with either water or bmilk with a syringe cause neither of my kids took to bottles well at all. I also used aloe vera juice, but you have to weigh the pros and cons of starting something new while you are trying to tease out the food issues. Are you off traditionally acidic things? Just a question, you probably are, but it’s something to consider. The fussiness and hard to sleep sounds like reflux which could be there EVEN with all the foods taken out that are bothering her. Although the foods can make the reflux worse, as you probably know, they can have reflux without any food issues or they can have reflux on top of multiple food issues. So the burning and reflux can be there regardless and the more they experience it, the worse it can get as time goes on. you are probably doing the Dr. Sears suggestions for keeping them upright as well, and those are great ideas too. Even with all that, both my children suffered greatly from reflux and did not improve until we used both modified diet, and reflux meds (Zegerid was the only thing, plus mylanta cherry supreme that worked for us) and environmental things like sleeping upright and being upright after eating, etc. They were essentially upright as much as possible. I still cringe when I see a baby laying on its back. We used babywearing as the lifesaver, i had a maya wrap style sling, and a mei-tai carrier as well. I was able to nurse both kiddos until age two, so if you are committed and really want to hang in there, it really is possible, once you figure out what’s going on. Hang in there!! Get as much help as you can. Really, if anyone is offering, just say yes and take a nap or get a breath of fresh air.
June 21, 2011 at 7:36 am #68550hellbenntKeymasterprobiotics, brands used:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
zegerid is found here: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=1June 21, 2011 at 12:29 pm #68551AnonymousInactiveHi Anne, thanks for writing all of that out!
Zegerid: Yes, I would like to put her on it. Her pedi won’t prescribe anything, and the GI doesn’t want to at this point. I put a call in to her today, because we haven’t reached baseline yet (more on this in a bit) and she was refluxing a lot last night. I’m assuming from the yellow squash that I ate, but who knows? If she won’t prescribe it, I’m getting caracream max from Marci-kids and going to give her OTC prilosec. But I’m waiting to see what the GI says about the Zegerid. My son was on Prevacid. I won’t do that. In fact, I have a couple dozen solutabs left over that I could give her, as well as unfulfilled perscriptions, and still won’t do it.
Gi also gave me a name of probiotics to put her on. It’s called BioGaia. Anyone heard of it? I emailed them to make sure that it’s allergen free, but haven’t heard back yet.
So, I’ve been on millet, oil and water for 6 days. Day 3 and 4 showed slight improvement in the poop (less mucous, more seed, more yellow) but days 5 and 6 are back to normal (dark green and mucous). I tested squash the day before yesterday in a fit of starvation induced delusion that we were ok to start trialling. She’s been refluxing a lot in the past 10 hours, and nursing A LOT, I don’t know if she’s reacting or nursing due to a growth spurt and the extra liquid is causing her to reflux. This is so confusing. I ate some more squash today, figured I might as well see the trial out to the end. but I’m thinking that if she’s STILL got green mucous poops, then maybe its the millet? Maybe the oil? I’ve been using grapeseed oil. Maybe I should switch things up and move to potatoes and sunflower oil? Or should I keep going with the millet? I really hate millet.Veeeyloova2011-06-21 12:30:50
June 21, 2011 at 4:48 pm #68552AnonymousInactiveugh. blood in diaper. squash is a fail.
question remains the same; if she had green mucousy stool 6 days on millet, should i switch to something else?Veeeyloova2011-06-21 16:50:00
June 21, 2011 at 5:10 pm #68553hellbenntKeymasterfrom reading erinntx’s posts, it seems like mucous isn’t such a ‘bad’ thing? it’s not ideal of course, but the gas and of course blood are what you can use as indicators? so I would keep with it and try something else? add in potatoes? or, stop the millet and try potatoes since you don’t like the millet? have you tried white potatoes? another grain? quinoa? maybe it’s the oil? you say it’s grapeseed? have you tried olive oil? how about avocado? there’s even avocado oil…
June 21, 2011 at 5:38 pm #68554hellbenntKeymasterLast post on this page: https://www.infantreflux.org/forum/forum_posts.asp?TID=7553
I’ve been on TED for 8 or 9 wks (had been milk/soy free since 31 wks pregnant as my older two boys were MSPI and I did the MSPI diet a total of about 2 1/2 years with them)… My dd did not tolerate white potatoes, and I did use brown rice up until about a week ago (now she seems ok with white rice). I hate squash and sweet potato, so I never used them. The starting foods in the TED are not guaranteed to NOT cause a problem; they are just more likely to be okay. However, many kids of TED moms do seem to have problems with some of the them. This is where a food journal – and trial and error – seem to help. I also could not eat pears, as my dd’s reflux and discomfort just went crazy.At this point, I am using free range turkey (ground and fresh turkey breasts), white and brown rice, Westsoy rice milk, plain mineral water, grapes, and organic white grape juice. I use sea salt and olive oil for food seasoning/preparation. I was using black pepper, and it seemed to cause some irritability so I’ve discontinued that. I also use organic pure can sugar. Iodized table salt contains corn products. I do not take any supplements or vitamins due to their contents, and have avoided any OTC or prescription meds as well. (FYI-Some moms on the mspiguide.com website reported that their kiddos had problems with Rice Dream brand rice milk, apparently due to some possible contamination issues.)
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Pancrease to Resolve Blood in the stoolJune 21, 2011 at 5:47 pm #68555AnonymousInactivethanks for those, Laura. Gas isn’t an issue so much anymore, just the mucous and blood. She’s still also pooping upwards of 8 times a day. I ordered her a probiotic nd am switching to white potatoes. I’ll go back to olive oil too.
I just sat and cried for awhile. This is way too hard.
June 22, 2011 at 12:11 am #68559AnonymousInactiveoh goodness. it is waaaaaaaaay.toooo.hard. There is really no other way to say it. I think you need more than millet, and I agree that trying olive oil might be a good idea. Maybe brown rice? Another thought is to just go to about five things that will give you some nutrition and then play around with them. I know that sounds counter to the whole add one thing in very incrimentally, but you also have to think of your mental health and nutrition. Unfortunately, I never did the TED like you are/have, and I suffered in the long term for not going whole hog but I found it too difficult to imagine how I could cope with going down to nothing and then building back. I kept to a handful of things and played with them. So, some of us never had the guts to even do it the way you are doing it. You have to feel good about trying so hard. you are doing tremendous work right now, and it’s all for a good cause. If you can, I recommend the avacado like Laura cause it will add so much nutrition for you. If you are not vegetarian I also reocmmend the ground turkey and rice or ground turkey and a grain. My first child reacted to gluten so with my second I cut all the gluten (among other things) as soon as she showed signs of reflux, well, it turns out she reacted to corn and other ingrediants commonly found in gluten free foods! ARGH! So even though a lot of these foods are free of lots of allergens, if it’s got the thing that your kiddo is sensitive to….then bam, it’s no good. Just an anecdote for you. Also, I strongly recommend printing out the info on Zegerid….and faxing it or taking it into your docs office with a very good attitude and see if they can realize how seriously you want to try it. I did this with my ped who had NEVER rxed anything but zantac for infant reflux six years ago with my son– printed out all this info, and told him very seriously that I was not sleeping nad described our scenario and said that I really needed help and I wanted to try this med and I would switch immediately if a specialist wanted me to but until I could get in with a specialist, could we give this a try? Since his other ideas were not working…? And he caved in. SAid he would read the info and gave me the rx. Now, he’s a nice guy, but he was young and new and could have held the line if he’d wanted to. I wasn’t weepy, just very matter of fact nad had my ducks in a row as much as you can when you only sleep 45 minutes at a time. Just a thought. You can ask in multiple ways and you can also seek another opinion. Within the practice or outside, if your insurance will allow it. Hope something in here helps. Get as much help as you can with the rest of your life, in the meantime.
June 22, 2011 at 11:33 am #68561AnonymousInactiveHi Veeeyloova,
I just posted yesterday, and to be honest, I don’t know if my story will make you feel better or worse:
The short version is: my 9 month old has had GERD and colitis from the getgo, and I’ve been playing around with some form of TED for the past 8 months or so. I’ve finally found a decent baseline with potatoes, apples (and unfiltered juice), bananas, brussel sprouts, olive oil, and kosher salt, but it took a lot of subtracting and adding things (and it took me FOREVER to realize that rice was probably a problem for him).
It’s not a long term sustainable diet (I don’t get a lot of protein), so I’m constantly trying new proteins, having them rejected, and going through the process of recovery. It’s demoralizing, to say the least.
Anyway, it sounds like we have had rather similar experiences, and I’m so sorry for that. This is, easily, the hardest thing I’ve ever done, and I think you’re really incredible for doing just millet, oil, and water for days on end. For what it’s worth, once we found a baseline, the fussiness and sleep issues disappeared as well….but I know it’s so hard getting there.
Jennifer
P.S. Oh! After I started TED, I got really (really) sick — my symptoms were essentially the same as my son’s. My doctor thought I might have a C Diff imbalance due to antibiotics I took for the uterine infection I got after giving birth (oh yes, this has been a loooooong 9 months for me), but in retrospect, I think it’s because my body’s fauna went way out of whack. Pre-TED I had been eating a half cup of plain yogurt every morning for breakfast, and then suddenly I wasn’t.
Anyway, that’s a long way of saying that you might want to consider taking probiotics…..of course, the difficulty is that most probiotics have dairy, and even those that don’t might have proteins that your daughter could react to. It’s a balancing act.
[edited by laura, just to make the link work- sorry for the intrusion]hellbennt2011-06-22 16:25:06
June 25, 2011 at 10:10 am #68569AnonymousInactiveI am astonished.
Last week, I was in tears every day because my baby girl was not tolerating anything that I ate, had blood in her green mucousy poop and I was only eating millet, oil and water.
This week, as I sit here with my cup of coffee, eating oatmeal, I am happy to announce that this morning, she had a totally normal, if not a tiny bit mucousy, poop. I have eaten apple, avocado, veal, millet, yucca, coffee, oatmeal, BREAD and sugar. No reaction. She’s refluxed a little, but isn’t in pain.
What happened to cause this near miraculous change? I started giving her a probiotic. Amazing.
A HUGE thanks to all of you who helped try and figure this out. I wouldn’t have been able to do it without this board!
June 25, 2011 at 12:07 pm #68570hellbenntKeymasterwell throw out that millet!
June 27, 2011 at 1:42 am #68573AnonymousInactiveThat’s sooooo great! What probiotic are you using? Always good to know one that had such a great effect on a young baby…
July 10, 2011 at 8:46 pm #68630hellbenntKeymasterHow’s it going, Veeeyloova?
July 13, 2011 at 3:48 pm #68656AnonymousInactiveHi, sorry I vanished.
The probiotic is the therm-biotic infant formula from Klair Labs.
Shes doing great on it, and it’s allowed me to eat a lot of foods. She isnt as sensitive as she was, and only really reacts to dairy, soy, beef, rice and grapes.
Unfortunately, and the reason I vanished, she has much bigger issues. We discovered that she was born with a birth defect called Saggital Craniosynostosis, where her skull bones have already fused together, and were at birth. This requires surgical intervention on her skull to remove the fused portion of bone and allowed for brain growth. She also has to wear a helmet for 6 months or so.
Thanks again for all your help.
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