extended TED and the end of the rope

[MommaLura]

I'm going to try and reach out one last time, praying somebody can help. In short, my TED is too extreme and I have been on it for too long now. I had to do a TED with my ds for 2 years and an extreme ED another 6 months. The only time I ate somewhat normally in the last 3 years was while pregnant. I'm having to choose between eating and sleeping and it sucks! I've been choosing sleep and basically starving. I have 2 safe foods, and a sugar and an oil. I think what happened is that when I went on a TED I detoxed all the yuckies and made her problems worse. I know we can't do dairy, soy, corn, wheat and rice. Every fruit cases reflux and vegetables cause terrible, terrible gas (as in trapped, baby doesn't sleep, but screams for *hours*) I can't do any mylicon or gripe water because she reacts to them. Any time I try something it means not sleeping and knowing that I'm causing the pain she's in. Her reactions to dairy, corn and rice are much more severe, including vomiting, rashes, "colic", trouble breathing, stuffy nose, and awful, frequent poops. I have to breastfeed due to finances, but I always wanted to and I had looked forward to happily nursing her till she weaned herself. There are so many benefits to bf and I want to enjoy them! Today I went off the deep end after listening to her cry from about 8am until 1pm, I don't remember eating anything unusual. She slept badly the night before, so I was tired and hungry. Dh doesn't get it. He just keeps saying how I did it with ds, but at least I had rice with him and I never missed a meal while home.

I need to go to the doc about some issues that have arised in me due to not eating, but I know how poorly that will go. I'm kinda scared I'm gonna end up in the hospital and my dh seems to think I'm exaggerating or its amusing =/ Please, somebody help! I don't know what to trial, I don't know how to cope through the reactions. It was much easier the first time! (and I've thought about going to a normal diet, but without somebody to help I'll never make it through without sleep and having to know that I'm causing the pain from food).

[changingseasons]

mama. I'm off to bed, but I'll check back in the morning when my brain is functioning better.

What are your safe foods right now? What have you already trialed (that has failed)?

Do you have insurance? If so, you might be able to get coverage for elemental formula. I know how much you want to breastfeed, and I am ready to help give suggestions if you want to continue, but you really sound like you need a break to keep yourself healthy right now.

Be back tomorrow....

[kjbrown92]

I was going to ask some of the same questions as ChangingSeasons. What are your safe foods now? And what has tried and failed? (so we can see if there are some foods that you haven't tried).

Kids can react to elemental formulas as well, so that might not be the answer either. Am I reading right that this is a 4 month old? So she's not eating any solids herself yet, it's all you, right?

[changingseasons]

Originally Posted by kjbrown92 

>

Kids can react to elemental formulas as well, so that might not be the answer either. Am I reading right that this is a 4 month old? So she's not eating any solids herself yet, it's all you, right?

True. But it seems worth a shot if mama is at her breaking point.

Kathy is a genius at coming up with meal ideas on really restricted diets, so definitely let us know what you're eating now and we can do some brainstorming!!

[bodhitree]

Hugs to you, mama. I agree that elemental formula is worth a try. You are working so hard to help your baby, but it sounds like being on such a limited diet is damaging to your own health, and you matter too! I'm interested to hear what your current safe foods are and what you've tried. Maybe we can brainstorm and come up with some ideas for you.

[kjbrown92]

I wasn't saying not to try the elemental formula, I was just saying that kids can react to that too (some people aren't aware of that, that's all).

[MommaLura]

Ok, sorry for the delay in response the last few days have been a rollercoaster! My known safe foods are goat, lamb, buckwheat, sugar, and canola oil. I'm pretty sure almonds are fine, but I think if I eat too many than it causes problems (like eating almonds, almond butter several times, ect). I know she reacts to dairy, goat milk, wheat, corn, mango, apples, rice, millet, broccoli, asparagus, , tilapia, shrimp, crab legs, sweet potato, chicken, buffalo, beef, winter squash, chickpeas, cashews, tomatoes, blueberries, stawberries, coconut, allergy free chocolate ....

I know there is more.  Soy is questionable, I haven't done a good trial. I know its a top 8 though. Turkey may be safe, but its hard to fine pure turkey without something added to it. I have rotated eggs in sometimes and I need to do a clean trial. I think they are safe, but I am trying not to eat too many. I have gotten so little sleep in the last few days I'm running into things. Saturday and Sunday night I think I got about 5 hours of sleep total, maybe. Monday night she let me get some sleep and last night she slept 5 hours, then was up screaming at midnight and did so for hours and taking super short naps. She's refluxing terribly. She's a little less fussy than she has been, but still a rough.

Yes, she's 4 months and not eating any solids.

Question about reflux meds- I've heard that if its food then the meds won't help. But is that true? I mean things that are triggers like fruits and sweet potato. Thanks!

[changingseasons]

Question about reflux meds- I've heard that if its food then the meds won't help. But is that true?

No, that's not true. And I would say that most reflux IS caused by food sensitivities. The problem with meds is that if they help, you won't know which foods are bothering her, which means that you'll have to stay on the meds long-term. You can't really do food trials while using them, because you won't get any clear answers.

Another thing to consider is that if you're not eating enough and losing weight, you're probably flushing a lot of toxins out of your fat stores, and they will end up in your breastmilk. So it's really important to keep yourself really nourished- even if you have to eat the same thing 5 times in one day. If you tell us what you're eating, we can help brainstorm meals/snacks to keep you full.

Have you tried any homeopathic remedies for your DD? Boiron makes a liquid colic relief that doesn't have any allergens (it's just in water; don't get the tablets because they have lactose)... here it is: http://www.boironusa.com/products/cocyntal.php Sometimes it seemed to help us, sometimes not. You could also try a dairy-free probiotic- that might help her digestion a bit. Kirkman Labs makes an allergen-free probiotic for infants: http://kirkmanlabs.com/ViewProductDetails@[e-mail]

[rhesp1212]

Actually zantac doesn't stop the reflux from occuring, it just neutralizes the acid so it doesn't burn and cause damage. This is what we used and my son still had reflux as we figured out his food triggers, but atleast he wasn't miserable with it. Here's a really great website with LOTS of reflux and reflux med info on it. It was a life saver for me...www.infantreflux.org

Also, I see that your little one is sensative to corn, and most meats. My son was the same way....if the animal was fed grains, including corn or soy he would react horribly to the meat. I started giving him grass fed beef and he is able to tolerate it just fine. That might be worth a try. It made a huge difference....I buy mine at a local farmers market where I can also get pasture fed chicken, turkey, lamb and pork (not fed any corn or soy at all and no hormones or antibiotics). It's pricey, but it was sooooooo worth it ! Also, most fish that come from a fish farm are fed those ingredients as well. Try getting some wild caught salmon or other fishes that are wild caught to try.

I hope you and your little one get some relief soon, I can totally relate to what you are going through. It's a rough road!! Hang in there mamma, you can do it!!

Valerie

[MommaLura]

Originally Posted by changingseasons 

Question about reflux meds- I've heard that if its food then the meds won't help. But is that true?

No, that's not true. And I would say that most reflux IS caused by food sensitivities. The problem with meds is that if they help, you won't know which foods are bothering her, which means that you'll have to stay on the meds long-term. You can't really do food trials while using them, because you won't get any clear answers.

Another thing to consider is that if you're not eating enough and losing weight, you're probably flushing a lot of toxins out of your fat stores, and they will end up in your breastmilk. So it's really important to keep yourself really nourished- even if you have to eat the same thing 5 times in one day. If you tell us what you're eating, we can help brainstorm meals/snacks to keep you full.

Have you tried any homeopathic remedies for your DD? Boiron makes a liquid colic relief that doesn't have any allergens (it's just in water; don't get the tablets because they have lactose)... here it is: http://www.boironusa.com/products/cocyntal.php Sometimes it seemed to help us, sometimes not. You could also try a dairy-free probiotic- that might help her digestion a bit. Kirkman Labs makes an allergen-free probiotic for infants: http://kirkmanlabs.com/ViewProductDetails@[e-mail]

But when I do trial food she's miserable for days. I believe your right about the toxins, but I can't afford to eat the same thing 5 times a day. I need to eat that often, but I only eat twice a day now.  Above I wrote what I'm eating: goat or lamb and buckwheat (most of the time in pancake form-sugar, oil, and water). TMI warning, but when I eat the pancakes more frequently saying I'm constipated is putting it mildly. I'll look into the above remedies, but since its more than allergies she reacts to the strangest things.

Thanks for the meat/fish ideas, Valerie. Yea, this is #2 with this problem. Ds at least tolerated sushi rice and I lived off that. I was naive enough to think it couldn't happen twice. Ha!

[changingseasons]

Trust me- I know how hard an elimination diet can be on a limited income. But eating 2 meals a day is not going to keep either of you healthy.

For the constipation issue, I would say make sure you're getting adequate amounts of vitamin C and magnesium- that should help. (Twinlabs makes a sago palm-derived C if corn is a problem for you; most others are derived from corn. Natural Calm is a easy way to get mag, and they now use beet-derived citric acid rather than corn.)

If you have a waffle iron, the buckwheat/oil/water combo is much tastier as a waffle than a pancake (I ate them for about 2 years straight )
Make some extra, and you can pop one in the toaster anytime you want.
If you're using sugar, make a sugar syrup with sugar, oil, and water for a few extra calories.
You can also make extra and crush them up for breadcrumbs. Add them to some ground lamb and salt (and spices if you have any), and you have meatballs (makes the meat go much further!!)
If you save your lamb bones, you can make bone broth, and then you have meatball soup (another way to fill yourself up, get nutrients, and stretch the meat budget.)
I've seen a recipe online for buckwheat noodles, but I haven't tried making them- but that might be another good addition to soup.

And trust me, I know how bad it sucks to do food trials when they always seem to fail, but you HAVE to get more foods into your diet.

What type of oil are you using? Just curious.

[MommaLura]

Thank you. changingseasons! I'm using canola oil. I'm not comfortable with olive oil, I think it flairs her reflux. You're right, I need more food, but during a reaction my heart breaks and life falls apart =(

[bodhitree]

Originally Posted by changingseasons 

I've seen a recipe online for buckwheat noodles, but I haven't tried making them- but that might be another good addition to soup.
 

Japanese soba noodles traditionally are made with buckwheat. You can buy them in stores or online, but make sure to check the label, as some do contain wheat. I know Eden Foods is one brand that is 100% buckwheat.

[changingseasons]

Originally Posted by MommaLura 

Thank you. changingseasons! I'm using canola oil. I'm not comfortable with olive oil, I think it flairs her reflux. You're right, I need more food, but during a reaction my heart breaks and life falls apart =(

I know. Even after 3 years of dealing with this stuff, I have a really hard time with reactions (and we have them pretty frequently, unfortunately.)

Originally Posted by bodhitree 

Originally Posted by changingseasons 

I've seen a recipe online for buckwheat noodles, but I haven't tried making them- but that might be another good addition to soup.
 

Japanese soba noodles traditionally are made with buckwheat. You can buy them in stores or online, but make sure to check the label, as some do contain wheat. I know Eden Foods is one brand that is 100% buckwheat.

Wow- thanks for posting that!!! I have looked and looked and looked and looked, and hadn't found any buckwheat soba noodles without wheat in them.