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Discussion Starter #1
I've gotten so much help and support on this forum, and for that I'm very grateful. My TED has not gone well. I'm starting over today. This time I'm going to stick to the original for 6 days, then change one thing at a time per 5 days until I get a baseline. Not change 2 things at once, or go on for more than two weeks without making any changes. This is for my bf baby, btw, not me.<br><br>
I want a diet low in salicylic acid (I have to take 81 mg of aspirin a day as it is). I want as little citric acid as possible as I believe baby reacts to that. I am looking at the joneja allergy scale, and also the world's healthiest food list.<br><br>
I am thinking the following:<br><br>
free range turkey<br>
green beans<br>
fresh asparagus<br>
papaya (not on salicy/citric/joneja list ???)<br>
turnip (not on salicyclic list???)<br>
Canola oil<br><br><br>
Please, please let me know if any of the above foods are high in any of the things I'm trying to avoid or if they are common allergens.<br><br>
I hardly ever eat green beans as I hate them. I like asparagus but rarely have it. I want to avoid all grains as I already suspect baby reacted to wheat, rice AND quinoa.<br><br>
Thanks so much. Hoping to head to the health food store soon. I had turkey for breakfast.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love"> to you all for your support and help,<br>
Tracy and baby Alethea
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> I really hope this one works for you. But if it doesn't, I hope you'll consider a paradigm shift, and that is the idea that a "few foods" diet may not be the answer for you and Alethea.<br><br>
Have you considered the possibility that elimination diets won't be enough to get you to a baseline? If Alethea's gut is leaky enough and her liver isn't able to detox it all fast enough, even otherwise innocuous substances may cause reactions. There is such a thing as being reactive to just about everything, and fortunately the answer is not giving up food entirely. You can begin a program for healing the body even if you haven't reached a baseline.<br><br>
I know there are a few posters here who can comment with much more knowledge and personal experience. Firefaery comes to mind, so you might want to PM her, but I'm sure there are others too.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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Personally, I wouldn't do the green beans because they're a legume (think soy and peanuts as allergens) and also because beans in general are gassy, and if you eat a lot of them (since you don't have much variety) it might seem like symptoms are getting worse. Is there another vegetable you can put in there.<br><br>
When I look at the TEDs that some of you guys are on, I actually want to inject a note of humor (since it's so NOT funny a subject). Did you see Forrest Gump? Where the shrimp guy keeps monotonously reciting all the shrimp dishes. Well you guys that say you are starving because of the limited foods, I sit there at night and think turkey cutlets, turkey meatballs, turkey soup, roast turkey, grilled turkey leg, turkey sausage, etc.<br><br>
I would add sea salt to your list, because everyone needs salt, and I haven't heard of anyone reacting to it. I left pepper on the list as well, since it's in the pepper family (black pepper, white pepper) and not a nightshade. Can you do lettuce as your vegetable? Not sure about the citric acid, salicylic acid thing. But it might fill you up as well as give you fiber if you're not doing any grains.<br><br>
On that list, what are you going to drink -- just water? I would say rooibas (red) tea might be okay, and honey as sweetener, to make sure you're getting enough fluids. I think both of those are low allergen.<br><br>
I'm rooting for you to find your baseline!!<br><br>
Kathy
 

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I want to second what jplain said. If a gut is leaky enough, it can react to whatever, depending on the day. My dd didn't improve on eliminations so we started focusing on healing and have slowly gotten better and better. It has taken months - be prepard for that. I really wanted to find the 'problem' foods so I could just eliminate them, but we really had to change our whole lifestyle. In order to heal, the body needs varied nourishment.<br><br>
For my dd, her symptoms (eczema, allergy shiners, wetting herself, behavioral) were detox signs. Her liver was overtaxed and couldn't cope. I found out through an ELISA test that she is highly gluten-intolerant and her little system was very stressed from that. It took a long time being gluten-free before her system calmed down at all. Healing has been slow but it is happening. Are you taking digestive enzymes? Probiotics? Both of these are essential, IMO.<br><br>
Good luck mama. It is the hardest thing ever, I know.
 

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Discussion Starter #5
I really don't think I can do this.
 

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Of course you can. Just do your plan for a week. If it's not making a difference, switch out 1 food every 4 days. You can do it. Think about those sleep filled nights and that smiling baby (it's possible - keep telling yourself).<br>
Kathy
 

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You have to take an aspirin every day? If your DD is reacting to salicylates you will never be able to get to baseline taking an aspirin a day as it is pure salicylate--you'd be hard pressed to get that much salicylate from food, in fact I doubt you could. Is there anything else you could take instead of the aspirin? I don't think there's any point in trying to reduce dietary salicylates if you're taking aspirin because it won't have any effect.
 

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Discussion Starter #8
I had a TIA (small stroke) 12 days after the baby was born. I have been on an aspirin every day since then, except I went off for 17 days, against the wishes of my neurologist. On the 17th day I had another TIA while at work, and was taken to the hospital. They felt I was well covered by the aspirin. That was last week. Since then my left arm has been weak. I have an appt with my own neurologist on Wed.<br><br>
Yeah, I guess I could go off of the aspirin. Maybe I'll just have a full blown stroke, then my poor baby can actually get neocate, and get a healthy balanced diet instead of the watery, crappy, salicylic acid laden milk I'm able to give her now as I try to survive on 5 different foods.<br><br>
Or maybe I could just switch to an actual anti-coagulant medication, in which case I'd have to stop nursing immediately, including stop nursing my 26 month old son also. Again, the baby could get neocate, the boy would just lose his mind.<br><br>
Maybe then I could get up less than seven times per night.<br><br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP<br>
I GIVE UP
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">: I'm sorry, that's a really tough situation to be in. I wish I had better suggestions for you. I can only say that I don't think you should try to lower the salicylates in your diet because it won't make any difference. To put the amount of salicylate in aspirin in perspective, I've read that the average person can tolerate about 16 mgs of salicylate a day...so one aspirin contains roughly five times that much salicylate. My 2 year old is sensitive to salicylates and she tolerates maybe 1/4th of a mg (.25 mg) of salicylates a day. The highest salicylate foods, other than honey and herbs and spices which generally aren't used in huge quantity anyway, contain less than 4 mgs of salicylates per 100 gram (3.5 oz) serving. IMO there's a really good chance that a nursling would react to that level of salicylates in BM even if they weren't more sensitive to salicylates than average, simply because all salicylates have to be detoxed through the liver and everyone has a limited capacity to detox them.<br><br>
I guess if you really wanted to know if it were the salicylates, you could try Neocate for the baby for a couple of weeks to see if things improve, and if they do, you could do a salicylate trial for her while she's still being fed Neocate. That wouldn't make any easy decisions for you, but would at least give you an answer one way or another.<br><br>
I'm sure you've researched this already, but...I did just a quick bit of searching online and it looks like there might be a couple of blood thinners (warfarin, for one) which are considered safe during BF'ing. I didn't look much so of course there might be more current information or other concerns for you with these medications.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">:
 

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Oh Wugmama I am just aching for you. You sound like you're really between a rock and a hard place with the aspirin, not to mention still needing to get to baseline without that road block in the way. I don't recall if you are having the babe (and yourself?) take probiotics and digestive enzymes. I think it is possible that you can heal her gut without having to cut out a potentially life saving measure for yourself. I also think that doing anything that requires you to stop nursing has the potential to send you into quite a depression based on how you're feeling right now, and given what the responses of your babies would be. I think it would be wise to continue nursing unless it becomes a serious health necessity that you do take an anti-coagulant. I have no real practical advice I guess other than to wake up each morning and put one foot in front of the other and try to survive this whole ordeal one day at a time. At the very least (I know this isn't very comforting) you know that you are going to the ends of the Earth to try to make things right for your little one and - one day - things WILL be okay again. And...feel free to bitch and complain and "give up" as much as you want - you deserve to be pissed and sad and scared and anything else you are feeling. Big big hugs.
 

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Discussion Starter #11
Thanks mamas.<br><br>
Actually, no, I didn't research other blood thinners. I just assumed that aspirin was going to be the safest, and only one allowed during breast feeding.<br><br>
My chiro had me on fish oil, and when I was on that I got bruising up and down my legs, and she felt I could go off of the aspirin while on the fish oil. I was taking the fish oil during my TED, but then ran out around day 9 and couldn't get back into her office to get the "good" fish oil - Orthomega.<br><br>
Now I'm really afraid to be just on fish oil.<br><br>
And I'm afraid me having taken the aspirin has damaged the baby. She had a strong negative reaction to the aspirin during muscle testing. But then she tested ok to my milk on that particular day, so I was assuming the amount in my milk was so small. Not even sure how much stock to put into the muscle testing anyways.<br><br>
Sorry, I'm just so far removed from any normal state of mind.
 

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Definitely look into blood thinners, then...my very quick search turned up 3 that seemed to be safe for BF'ing.<br><br>
Hmmm...easy bruising is usually an indicator of vitamin K deficiency (which is essentially what you're trying to achieve anyway with a blood thinner) or a vitamin C deficiency. But (yet another) quick search online did come up with quite a few mentions of fish oil thinning the blood. With something as serious as a stroke, I'd highly recommend doing a lot of research on your own before you take anyone's recommendations for treatment. Some chiropractors do know quite a bit about nutrition, but, well...that's a big thing to take a chance with someone who may or may not actually know what they're talking about.<br><br>
What are your DD's symptoms? Most likely, if you are able to stop the aspirin her symptoms will go away in a few weeks. Assuming, of course, that she isn't sensitive to salicylates in general (in which case you might still need a low salicylate diet) and that she hasn't developed any other food intolerances. But I definitely think getting off the aspirin would be a huge step in the right direction of figuring out what's going on with her.
 

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Dear mama,<br><br>
You are so beautiful. I know everyone is trying to help with ideas and tips for research, but I am getting that you are maxed out, so I hope the support keeps coming too. I can't imagine how tough it is to be stuck between hurting yourself and hurting your baby, and it seems to me that's where you are. I was really glad to see in one of your posts you said stuff that made it clear you know everybody's suffering when you sacrifice yourself. You have done so much, researched so much, worked so hard...it's amazing what great mamas will do for their babies. I wish I could offer the "crystal ball" solution for what's going on, because at this point I feel you deserve the light at the end of the tunnel. I can tell you there's been plenty of days I knew I couldn't go on. I can also say there's been plenty of "day after that" days that I was proud that I had. Only you will know when you've reached the end of your rope (if you do), but if you do, don't you dare berate yourself. You are a warrior.<br><br>
Sending sincere support...<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">
 

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I just want you to know I support you whatever you do.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Like jplain said, if your baby's gut is leaky enough, it needs to be healed before you'll see results of your ED. I'm not sure what to do about the aspirin. Your ds may very well not have a sensitivity to salicylates; it's so hard to know. But, if you end up continuing with the aspirin, my advice would be to cut the big 8 allergens (and anything you know for sure he reacts to) and start rotating your diet. Just don't overload with any one food. Try a 3 or 4 day rotation (so one day would be for rice, one for quinoa, one for oats, etc.). And, very important, take a safe digestive enzyme (I like Enzymedica). It's very likely that your gut is leaky and it needs to be healed in conjunction with your baby's gut healing. Things like probiotics (Culturelle, reuteri, and bifidus, for sure), enzymes with every meal, glutamine for gut tissue healing, vitamin C with quercetin (corn and citrus free from Twinlabs; quercetin is a natural antihistamine) and fish oil can all work to heal your gut. You can give probiotics to your baby, too, to help him, along with bone broths for glutamine.
 

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What do you give your baby to heal their gut besides the probiotic?
 

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Depending on the age of your baby, I would probably just give probiotics until they were a year old, and work on getting my own gut healed (which directly relates to baby becasue of what gets into breastmilk). Of course, I would also keep nursing. If the baby was on some solids, I'd try natural means of getting in things like bone broths for glutamine. And I'd avoid any grain cereals for baby until then, and just stick with fruits, vegetables and proteins. Someone's ND here said they could give their child CLO at 6 mths, though, so??
 

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Discussion Starter #17
Thanks for all of the ideas and support, I appreciate it so much.<br><br>
I did go off of the aspirin for 17 days, until I had another TIA. I didn't seem to help much as the eczema never went away, even though I was on a TED.
 

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And you may never see a baseline. Aspirin likely contains some form of corn, which is a big no around here. Can you get compounded prescription aspirin (just the drug, or a similar compounded just drup blood thinner)? Please remember that doing TEDs while not under the direct and immediate care of a registered dietitian and a doctor is not only unhealthy it is extremely dangerours to both you and the baby and has led to some very, very dire outcomes.<br><br>
PLease remember that it is okay to treat your child's issues however you need to. It is not fair that some of us have very ill children, and it sucks, but I will never in a million years live on a TED again like I did with DD. It was very damaging to my body and to her, and I regret persisting as long as I did. If she had had mcuh fewer issues, it would be a different story. Sending you strength because these were the hardest months of my life. If you want to PM me, feel free. I know oh so well what its like.
 
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