Please be careful if you are nursing and considering a TED

[Wugmama]

I went on a TED for 17 days and my dd, age 6 months DID NOT IMPROVE AT ALL NOT EVEN IN THE SLIGHTEST.

At age 6 months we got her weighed, and she weighed only 1.7 lbs than she did at age 3 months.

My milk dried up quite a bit on the TED. Even before I started the TED, I had cut out the top 8 and then kept cutting out other stuff that I suspected. At the end of it, I weighed less than I had before I got pregnant the first time (I have 3 kids).

We have taken baby to:

family practice doc
dermatologist
allergist
cranial sacral doc
homeopath
chiropractor
naturopath
Chinese medicine/accupuncturist doc
NAET practioner
Another NAET practioner

We up and bought tickets to Florida one morning in February and flew out that same day to try sunshine and ocean water. We live in MN and thought the cold dry air could be contributing to it. She got much worse while we were there and we almost had her hospitalized.

We have spent thousands of dollars.

In the last few months baby had two severe immediate allergic reactions. One was to a homeopathic teething drop. The second time she got it her lower lip swelled up so much we called 911 afraid she was going into anaphalactic shock. We were in FL at the time staying in a rented place, so had no benedryl.

The next time she had a reaction was at the end of my TED. I had left formula as a backup for our nanny (I work part time) as I wasn't able to pump enough any more. Baby had had this formula before for 2 full days at age 12 days because I had a TIA (mini stroke) and was hospitaled and not able to nurse as I had tests that injected dye, plus it was winter and my dh wouldn't bring the baby into the hospital for fear should would catch something. The sitter gave her one bottle, and she was fine, then later gave her a second and she got huge marble sized welts immediately on her face and had to have bendryl.

So there I was with a malnourished baby, unble to produce enough milk, unable to give her formula.

Let me tell you I nursed my first born for 3.5 years. I nursed my second born through my entire 3rd pregnancy, and he is STILL NURSING at age 2 yrs, 3 months. I am a huge proponent of nursing, nurse in public all the time, even was nursing on the jumbotron screen at a Minnesota Wild game, my proudest moment ever, I kid you not. Neither of my other two ever had a drop of formula, ever.

We had to get neocate for my baby. (we tried nutramigen, wouldn't take it, the neocate is more hypoallergenic anyways, and it tastes fine, like chicken broth).

I'm still nursing but we are trying to get as much neocate in her as possible. The day she drank the most of it, she slept the best - a 3 hour stretch!!! ( she used to sleep 8 hours before she had the eczema get bad at about 2 months).

I am now seeing a woman who is a chiropractor and also certified Chinese Medicine doc and accupuncturist. She comes highly recommend to me, and we are driving 45 minutes one way once per week to see her.

**************************************************
This is her theory:
************************************************** **
There was nothing wrong with the baby when she was born - the problem is all with me. My body was depleted from being pregnant and/or nursing solid the last 7 years. My gut was not healthy as I had antibiotics during or immediately following all three births. I was not digesting my food correctly and not eliminating my own waste effectively (I also have eczema now - never used to). My liver, kidneys, large intestine, small intesting and spleen were all under duress and not functioning well. As a result my milk had proteins and stuff in it the baby was not able to digest. And the baby's gut does not have the proper flora/fauna balance. And this has built up in her body and the most visible symptom is her eczema.

She is not allergic to any one food. She will react to many different foods on a rotating basis as she gets exposed to them in an undigestible form and they cause her problems. Once I am healed and my milk is "good", or as she is getting easily digestible formula (the neocate) she can heal and eliminate toxins that have built up in her. Her skin will clear, she will sleep.

I've only been seeing this woman for 3 weeks, but I've improved quite a bit in that time. My eczema is all but gone. I'm eating everything but nightshade family (white potatoes, tomatos, peppers) and just this Monday went off of dairy temporarily. I had gone hog wild on dairy - kefir, yogurt and raw goats milk.

You can remove all the foods from your diet you want, it may not make a difference if it is your body or your baby's body that needs healing which is causing the reaction. If it isn't one food one day, it may well be that food the next day.


Since adding all of the other foods back into my diet, the baby has not gotten any worse than she was.

We are doing comfort care on a limited basis, hydrocotrizone ointment and more recently antibiotic ointment as she had some open sores that wouldn't heal and were probably infected. Now we have black walnut for an anitbiotic. We believe that she will be healing and will not need these things long term.

When I first decided to give her formula I made a bottle and left the house and parked at a park and just sobbed. That was nutramigen and when she wouldn't take it I was secretly glad and went back to nursing.

Then she had the allergic reaction to the regular, lactose free formula that she had previously tolerated, and my milk was dried up. So we had to get the neocate.

I believe that if I had put aside my pride and MY own need to nurse, my baby wouldn't have gotten so sick. Instead it got to the point where she couldn't even tolerate formula she previously had or even the teething drops. And was underweight and malnourished to boot.



I hope no one will start up a total elimination diet unless they and their baby are being followed by some sort of health care professional. It is so easy to say it is only temporary, but as nothing works, and you get more and more desperate, you can put yourself and your baby at risk.


Sorry to speak against the advice of so many experienced and helpful mama's here, but I just feel so strongly about it after what happened to us.

I certainly don't have the answers, but just some things to think about.

Best wishes to all,
Tracy

[joybird]

My experience has been very similar to yours. I also came to the same conclusion that your chiro has. I tried desperately to find what foods were the problem, but in the end our digestion was the problem. We've made very significant improvement since we began dealing with the issues of our systems and stopped chasing food. I really wanted to find the food culprits so I could eliminate them and go on my way, but our issues have led me to a new way of eating and living that is altogether more healthy than I ever was before. My state of mind after the elimination and fear of food was totally unhealthy. I was fit for the loony bin. Not to mention the weight I lost that I couldn't afford to lose, and the stress that my stressing must have been putting on dd. But, I wouldn't have figured any of this out if I hadn't gone through it, hellish and all as it was.

However, ours were only sensitivites and not IgE mediated allergies. I think elimination can be helpful for folks who are trying to pinpoint those. We also do have issues with gluten and dairy and so we avoid them, but honestly I think most people would benefit from that. But when dealing with IgG allergies, they change often and I'm not sure it's necessary to totally eliminate every food that causes a reaction in order to heal. We did do the ELISA test and got some useful info, but I believe it is totally possible to heal without such tools. The focus needs to be on healing, not illness. We focus on what we are putting into our bodies, not what we are taking out. This mindset is essential to facilitate positive energy and health, at least it was for us. It is no joke that state of mind is at the forefront of healing. It is paramount.

I feel for you reading your post because our situations are so similar, but I can tell that you are well on your way to figuring out the path that is best for your family. Best wishes to you mama!

[dannic]

[QUOTE=joybird;11064573]My experience has been very similar to yours. I also came to the same conclusion that your chiro has. I tried desperately to find what foods were the problem, but in the end our digestion was the problem. We've made very significant improvement since we began dealing with the issues of our systems and stopped chasing food.

May I ask what steps you took to heal your digestion? This sounds so familiar to what we are dealing with! I would love to hear your experience as well.

[joybird]

Oh, lots. We did the SCD for a while which probably helped us start healing. We are currently GF, CF, Egg-free, sugar-free and do limited GF grains. We are doing a ridiculous amount of supplements. I think the most important of these are digestive enzymes, glutamine, CLO and probiotics. It has taken us a long time, about 6 months, to get this far but dd went from having severe eczema and constant diarrhea to having occasional dry skin and totally normal stools.

We went through some very rough spots but I just kept searching and hoping. I knew our problems were connected because I had serious digestive problems too, and I had all the markers for digestive flora imbalance and bacteria/yeast/whatever. My digestion has normalized too, I am happy to say. We are still healing, though and I look at it as a long path that we will be on indefinitely. I know that if I went back to eating the way we used to that we would regress for sure. I will probably not be eating gluten or sugar again in this lifetime because I have come to realize how unhealthy and unnecessary they are. I don't even want them anymore.

Our stools finally normalized right after we started S. Boulardii, but I don't know if that was a coincidince or not since we had been doing lots of healing stuff before that. But it is supposed to help fight off bacteria and restore healthy bowel function so who knows.

[kittywitty]

I understand your frustration, but why the need to warn people against nursing and doing a TED? It works for most people. And I would bet most of us would disagree about the importance of this being mediated by a HCP. Most docs I have encountered with my childrens' allergies told me to stop bf b/c it was killing them. I went on a TED by my own and they are perfectly healthy and most certainly not dead.

[joybird]

Originally Posted by kittywitty

I understand your frustration, but why the need to warn people against nursing and doing a TED? It works for most people.

I think because for some people it doesn't work, and those people need to know that there are other avenues of healing and other options. It is really exhausting to do EDs and not find answers no matter how hard you look. I was convinced elimination would help us but it didn't and it took me a while to start looking at things from a different perspective. I would have liked to hear about alternatives sooner than I did.

Oh, and if I could afford it, I would most certainly have been consulting with experienced natural practitioners to see if they could offer any help. I saw a few and got a bit of help but the rest I've done on my own. Allopathic practitioners are useless for the most part, I agree.

[joybird]

Wugmama~

I also had an intuitive tell me that dd was not allergic to any foods. She told me that my digestion and imbalance were causing dd to be toxic and that her eczema was the visible result of that. I thought she was crazy. I did not believe her at all. It is only much later and after much healing that I know for a fact that she was absolutely right.

[Chinese Pistache]

Wugmama, this is definitely an important perspective because the issue is so multi-faceted, but I do disagree that it needs to be managed by an hcp, as kittywitty said. From my personal experience and numerous experiences I've read here, most hcps, even alternative ones, give all kinds of erroneous advice. IMO, ed/ted's do work for IgE allergies, and since testing doesn't always identify them (particularly for children under 4), there is no other way to figure them out. I agree that going on a TED for more than two weeks is unwise and that if you don't see ANY improvements within a week or your milk supply drops or your baby/you get sicker, then, it's not working for you and you (general you) should look at other options. But for many people, it yields results immediately (some improvement within days).

It is sad that there aren't more educated professionals out there. We tried SCD, an anti-yeast diet, eliminating just dairy, using steroid creams, (eta: NAET and naturopath) and on and on until we came upon the tools that helped us: a gut healing regimen of supplements, combined with allopathic allergy testing, combined with food journals that identified other food sensitivities, and strict avoidance of IgE allergies. My dd and I both have our health back, and she's been able to reintroduce many foods (though not the 3 IgEs). Her skin and bms are perfect now, something I cried over everyday before figuring it all out.

So, I agree, there are a lot of healing paths that one needs to investigate, but I don't agree that one is intrinsically better or more safe than another.

[kjbrown92]

Even while on a TED, you still need to eat. Even if you are restricted to turkey, rice, zucchini, and pear, you can have variety (add olive oil, sea salt, honey and tapioca starch to your diet - they aren't very allergenic).

Rice: rice milk, rice pasta, rice cakes, brown rice, white rice, rice crackers, rice pudding
Turkey: roast turkey, turkey broth
Zucchini: steamed, sauteed, roasted
pear: baked, poached, fresh, stewed over rice

There are a lot of people who are on restricted diets, who are saying they're losing lots of weight. You need to maintain calories, first and foremost. And yes, it would be nice to have a nutritionist helping you, but good luck, since most doctors think nothing is food related anyway. The ED that my DD went on was not a TED, just an ED, and the first part is only one week and then you started adding foods back in.

I guess I just want to say that they are very beneficial if food is the answer (and it isn't always, but is for a lot of us who couldn't get answers anywhere else). And they aren't meant for the long term.

[Wugmama]

kittywitty I want to warn people because when I entered into it I never expected the TED could drag on so long, and I didn't anticipate how my mind set would develop into "just a little longer..." and that I would develop such a fear of food. Nor did I anticipate how my milk supply would drop or how my baby would get sicker while I was on the TED. It was very hard mentally to stop the TED. Even after I stopped 17 days later, I still didn't stop, I still ate hardly anything different and was so afraid of so many foods. It does something to you, and I just want to warn mama's to think about that, and how long they should go on if it isn't working. I'm glad your kids aren't dead. I'm glad my tiny baby isn't either.

joybird That reminds me, I forgot to put in my initial list of practitioners our intuitive healer. She told me digestion was an issue, and also said she sensed fear in the baby. One of the NAET practitioners also mentioned fear. The intuitives are so nteresting, aren't they?

Chinese Pistache I think it is impractical for most people to have a hcp helping them with an elimination diet. Heck, it is difficult for most of us to find anyone that can help us with these health problems effectively, isn't it? Someone said it here, and I know I feel like allopathic medicine is mostly a waste of time. I just know it became unsafe for me and my baby for me to be on this TED. There was no voice of reason, only others online encouraging me to keep going with the TED. I appreciated the support so much, but utimately it wasn't healthy. I wish no one had to go it alone. I don't know what the answer is. This has been the hardest time in my life. I wish no one had to go through it and I wish I could help everyone, starting with my own baby. I just think if I had some sort of hcp working with me, I never would have got to the point that I was at, so wish others wouldn't do it on there own. I have 2 other children I successfully bf'd but still for some reason couldn't recognize the jeopardy my baby was in. "Just a little longer..."

I'm really glad to hear you dd is doing so well. For some reason I thougth she still struggled with flare ups.

I do believe an TED is intrinsically less safe than other healing methods mentioned here. It isn't normal or healthy to limit your intake of food down to 6 things.

kjbrown92 Yes, you definitely need to still eat when you are on a TED. But there are two main reasons, I believe, why so many of us do not get adequate calories and/or nutrition while on a TED. One is that when you have 3 kids and a part time job like me, or any of the various things that any of us have that makes our life so busy, it is really hard to only be able to eat things that need time to cook. I unfortunately rely a fair amount on convenience foods, and with those off the menu, found it very had to get enough to eat in one day. If I wasn't able to stand at the stove and spend the 45 minutes preparing brown rice, and I had nothing else to eat, I just ate nothing. I ate a lot of sweet potatoes and pear though, as they were easy (potato in the microwave).

Another problem with the TED, no matter how much you eat of those same things, is that you will not get a balanced nutritional intake. Ideally we need to eat a wide variety of foods as foods have varying nutritional values. Our wise body will grab what it needs from the foods we eat, and not take what it doesn't need. Your body cannot grab what isn't there, if you are only eating certain foods and none of them contain a certain vitamin or mineral (like calcium for instance). You many tell yourself it will only be for a little while you will go with out, but in my experience, it can drag on long after it is healthy. This is why I want to warn folks.




I'm glad we can have this discussion. I guess I feel the botton line is that if you or your child is reacting to such a wide variety of foods that you have to go down to just a handful of foods only in order to eliminate all of the offenders, than the problem is NOT the food, it is the body. Your body is designed to accept things which are good for it, ie food. When it had problems accepting that healthy food, that is an indication of something not functioning correctly in the body. THat is my understanding from the doc we are with right now anyways. I'm not sure what to think about the individual allergies like peanuts for instance.

My hopes in posting that thread is that those who are experiencing a sensitvity to so many things will try to find away to heal there body, not try to find a way to live without all of the foods that they are reacting to.

Here's to a RETURN TO HEALTH for all of us (this is my new personal mantra).

Tracy

[Chinese Pistache]

Hi Wugmama,
I'm glad you shared your perspective and I hope you didn't feel like I was minimizing it. I think it's a really important perspective, especially for moms with your challenges, because it can give them another path to consider. There are so many, and it's frustrating to have to trial and error everything. But, in our case, there was no other option.

As for flare ups, happily (or unhappily) my dd has only gotten them when she's inadvertently gotten her allergens. We know she's allergic (IgE) to corn and just when I think I'm giving her some new, safe food (usually packaged), I find out that there's some hidden or undeclared corn. The last one that happened was when I re-trialed coconut (she'd been off of it for close to a year). She seemed fine with coconut oil for 4 or 5 days and then, started flaring and I was frantically looking for the culprit (), thinking it was one of her previously safe foods (like wheat or eggs). In the end, it turned out to be the darned coconut oil, that took longer to build up a reaction than consuming it just once. I still wonder if coconut oil is an IgE reaction or not, but in our case, I don't think that rotation of this food would be beneficial at all. Like I said, it's trial and error

[Chinese Pistache]

Originally Posted by Wugmama

I'm glad we can have this discussion. I guess I feel the botton line is that if you or your child is reacting to such a wide variety of foods that you have to go down to just a handful of foods only in order to eliminate all of the offenders, than the problem is NOT the food, it is the body. Your body is designed to accept things which are good for it, ie food. When it had problems accepting that healthy food, that is an indication of something not functioning correctly in the body. THat is my understanding from the doc we are with right now anyways. I'm not sure what to think about the individual allergies like peanuts for instance.

My hopes in posting that thread is that those who are experiencing a sensitvity to so many things will try to find away to heal there body, not try to find a way to live without all of the foods that they are reacting to.

Here's to a RETURN TO HEALTH for all of us (this is my new personal mantra).

Tracy

I just wanted to mention that I totally agree with this. For people without access to a care provider to guide them in this, there is a wealth of information in the Healing the Gut cheatsheet and the reading list there.

[Wugmama]

Yeah, that healing the gut cheat sheet has so much info!

I feel so incredibly fortunate to have found, and be able to afford, a practitioner that seems to subscribe to most if not all of the stuff in that sheet, to. It is so much easier to have someone telling me what to do than to have to figure it out for myself!

I want to send everyone I know to this woman.

A return to health, a return to health, a return to health, a return to health ...

~Tracy

[Wugmama]

Chinese Pistache, I'm so, so, so happy you guys have a handle on it. I'd give anything to have my baby be so fortunate. Hopefully that day is coming for us!

A return to health, a return to health, a return to health, a return to health ...

Warmly,
Tracy

[Astromom]

Wugmama, I'm glad you posted the details of all of this. And I'm glad you pointed these things out over the past couple weeks because it's helped me too.

In my case, the TED clearly helped us determine the major problems. However, as I added food in, DS seemed like he reacted moderately to just about everything... so in our case I think we have both things happening. True intolerances (the major reactions), and leaky gut (the minor/medium reactions). I'm not sure how we could have determined the major problems without the TED - it's one of the hardest things I've ever done but it did ultimately give us some answers I think. But I might not have been able to see beyond it and shift gears to start working on gut healing without your recent posts.

I just wanted to add that I think it's probably really hard to distinguish between possible scenarios while on a TED. It's hard to know which it is -- 1. "This is the hardest thing in the world, things are getting worse but that can happen before they get better, and I have to keep going." or 2. "This is the hardest thing in the world, we are getting sicker, there is no light at the end of the tunnel, and we need to stop."

Good luck and best wishes to every mama and baby who have to stand at this point and figure out what on earth is going on.

[Chinese Pistache]

Originally Posted by Wugmama

Chinese Pistache, I'm so, so, so happy you guys have a handle on it. I'd give anything to have my baby be so fortunate. Hopefully that day is coming for us!

A return to health, a return to health, a return to health, a return to health ...

Warmly,
Tracy

Tracy, I know it will come for you! Through our gut healing, dd has been able to add back in several fruits and vegetables. Even though her IgEs are still off-limits as well as a few others that I'm not sure what kind of sensitivity they are, she can now eat grapes, bananas, peppers, and tomatoes. It was huge for us to be able to reintroduce those! I know it's because her gut had time to heal (6 mths to 1 1/2 yrs, depending on the food) and because of the immune support she had (probiotics, clo, glutamine, etc.). The hard thing is seeing the light at the end of the tunnel, because you can't rush the body healing itself. Sure, you can support it, but it just takes time.

I'll be so anxious to hear about the progress you and your dcs make over time.

[Calm]

where can I get the healing the gut cheat sheet?

[SAmama]

Originally Posted by Calm

where can I get the healing the gut cheat sheet?

http://www.mothering.com/discussions...d.php?t=434071

[mommydancer]

Wugmama, I thought your post was really clear and complete, and I thank you for posting it. I knew from pp's that things had been really hard for you, and seeing the whole experience in one post was sad but helpful, if that makes sense. I think I can really identify with your fear of eating different foods. I sometimes feel as I go to the cupboard or fridge like I am playing russian roulette. I haven't done the TED, in part because of the nutritional issues you'd pointed out. I have restricted a lot though, and have had a really tough go trying to find medical folks who will "supervise" or even let me "check in".

With respect to this discussion, many of the p posters have had valid points. I think most everyone here is trying to use herself as a tool to the best of her ability to nurture her child. We are all dealing to differing degrees with the less-than-perfect practices of professional helpers. We are coming at things from different places, and choosing different strategies. Each of us has to find her way. You have introduced a perspective shift with this post, and generated a thought-provoking exchange of ideas.

You and your LO are in my thoughts.

[Wugmama]

Thanks mamas! Please note this is an old thread someone bumped up. I am still very leery of total elim diets but see now the need to avoid certain foods, and the benefits of being able to pin point those that ail us and our little ones.

See my more recent "Update for what it's worth" thread!


HERE'S TO HEALING FOR ALL OF US!

Tracy