I can't figure out what dd is reacting to :( - Page 2

[mamafish9]

That looks like big improvement in just a few days, yay!

[bigknitwit]

Here's today's picture http://www.flickr.com/photos/55107573@N08/5110561931/- better still (I think), but I'm concerned she's got a couple little staph infections in there. Any ideas how to treat them (without oral antibiotics)? I think she reacts to bactroban (see picture here after I applied it to her face before nap: http://www.flickr.com/photos/5510757...7625108188623/)

Also, here is a picture of her face taken a couple months ago after she ate a pudding I made her with coconut milk, cinnamon, maple syrup and egg yolk. She had been off eggs for 10 days, so I attributed the redness around her mouth to an egg allergy. Now, I'm thinking it's a sals thing. The redness showed up within 10-20 minutes of her eating the pudding (she loved it and picked up the bowl to drink it). Everywhere the pudding touched went red, including her chin, neck and chest. http://www.flickr.com/photos/5510757...7625108188623/

also, here is a picture of her back 12 hours after removing a (latex free) adhesive that had been there for 48 hours. When I initially took the tape off the skin was not nearly like the picture. http://www.flickr.com/photos/5510757...7625108188623/

I added palm shortening today and I'm feeling pretty confident about a sals sensitivity...

[mamafish9]

Definitely could have been a sals reaction to the pudding. Latex, sorry, that I know nothing about!

[bigknitwit]

Just to update, here she is today (day 9). You can click on the photostream to see where we've come from. We've added in palm shortening on day 6 and salmon on day 8. I'm wondering if her healing is starting to stagnate though... I am still waiting for our supplements to arrive to begin giving them to her (and me). What food should I add next? Do I need to wait a full 4 days in between additions? I didn't last time, because I was pretty confident the palm would be fine.

http://www.flickr.com/photos/5510757...7625252892864/

Oh, and I've literally eaten half the container of palm shortening (spectrum organic) wince we introduced it on day 6. I put it in my bornw rice/pear cereal, as well as on rice cakes. I really hope it's a perfectly healthy fat! It's not the red (less refined) palm oil (although I've ordered this).

[mamafish9]

Add food, I know elimination diets suck . I added a bunch of low sals foods all at once, but that's not the most recommended way to proceed ! Stick to things you expect to be safe for a while, so you can expand your diet a little.

Have you got all your meds compounded yet? It could be that she is still having small reactions to some of the dyes/ingredients in those.

[bigknitwit]

We trialed onions and garlic 2 nights ago and it didn't go very well. Her mouth is back to being a little more red than usual again (I need to take her picture to document after nap). Unfortunately we also trialed mango the day before that (she loves it frozen), so I'm not 1000% confident it's the onions/garlic. We had them sauteed (palm shortening) in turkey bone broth (24 hours, so lots of amines, however she'd eaten rice cooked in broth earlier without incident). Is it the sulphur content in the onions/garlic that's doing it?

Finally got our supplements. I am giving her one drop/day of the molybdenum, plus epson salt baths in the evenings. I am taking a b-complex (thorne), magnesium (citrate), P5P (thorne). I also added back in my iodoral.

Finding zoloft without dyes is proving to be challenging. I can get it compounded but it's very very expensive. I am seeing my doctor on Monday, and I'm pondering a drug change (to Tofranil), as this will also be compliant with the Low Dose Allergen Immunotherapy that we're going to try with him. I'm sure I have plenty of issues making me need the zoloft, but I can't seem to get to the root of them to successfully manage my symptoms (insomnia).

[bigknitwit]

I need a better eating plan. I don't think I can keep up this restricted diet much longer. My parents have (gently) suggested weaning DD, so at least I can get some proper nutrition. However, I think it's going to make things worse for her. I don't know what to add back in to our diets that she won't react to. We are eating turkey, rice, pears, peas, asparagus, palm shortening, and salmon. Quite frankly right now I'm about ready to add most of everything she'as not outright allergic to, and just manage her reactions.

[mamafish9]

What I did at that point was block add in a bunch of low sals foods (that weren't in the top9 allergen/intolerance foods, so lots of veggies, some other meats, beans, grains - it broadened my diet to tolerable fairly quickly). I also challenged eggs right after that (you could give them directly to your DD and see if she reacts). They're an awesome one to add back in for nutrition if you can.

Then you can move more slowly on adding moderate sals foods as you get your and her supps intake up.

[bigknitwit]

Ugh - it's not going well here. She seems to be getting worse, instead of better. Is she now starting to be allergic to one of the foods she eats? We're back to eating only pears, rice, turkey, asparagus, peas, maple syrup, and palm shortening. We've been eating only these foods for the past 5 days. When I tried a block add-in of foods (salmon, mango, onions, garlic), she ended up with a reaction on her face. Is this even an allergy/intolerance? The rest of the skin on her body is superb...

Here she is today:
http://www.flickr.com/photos/5510757...n/photostream/
Yesterday:
http://www.flickr.com/photos/5510757...n/photostream/
3 days ago:
http://www.flickr.com/photos/5510757...n/photostream/

[ASusan]

I hate to tell you this, but it looks pretty darn allergic to me. Or intolerant, or reactive or whatever you want to call it. I would definitely think it was something she was eating. I would remove those foods that you just added, and wait 4 days, then, assuming her skin heals and approaches baseline again - put in another group of low-sals foods. (if low sals is the tiger you think you're chasing - my guess is that it's a combo of sals and something(s) else).

I also agree with you that she's probably getting something out of breastfeeding, perhaps because this is the belief I had (and still have) about my own BF son. I had a really rough time giving up wheat, egg, and peanut (had already given up dairy by that point). I didn't even do an elimination diet, but the baby weight and any associated fat (and probably lean tissue, too), just melted away very quickly. And my hair fell out in gobs.

I so feel for your and your little one, but I do think you are doing more good by allowing her to nurse at this point.

(My aunt had this type of mouth-skin reaction to problematic foods when she was young. My grandmother always knew when she had something at school that she wasn't supposed to because of the tell-tale redness around her mouth. She, too, had a highly restricted diet for a long time - lamb, goat milk, rye crisps - and my grandmother trialed foods one at a time, adding one each week and making observations. However, my grandmother was not nursing her(hence the goat milk from early infancy), so that factor wasn't there to (a) complicate things and/or (b) give nutritional assistance.)

[mamafish9]

Could be she is reacting to high sulfur foods as well (onion, garlic - also broccoli, egg). The same supps help there as with sals, particularly molybdenum, so perhaps increase that? In our experience, addressing nutrient deficiencies was the fastest way to increase tolerance.

[bigknitwit]

Dd was just about at baseline, so we trialed some eggs yesterday successfully - baked into a pancake-like thing (egg/rice flour/maple syrup/salt). I was pleased. Then we gave her some more today - same pancake. Unfortunately this afternoon she also found a tomato (left on the counter in the basement to ripen) and bit into it. She didn't eat much of it, but she was definitely exposed.

Now this evening she's all red around her mouth again And I'm stuck in the unfortunate place of having two potential culprits - eggs or tomato (she tested negative to both on skin prick and intradermal testing). I've been on this elimination diet for almost 3 weeks now. This is my second unsuccessful attempt to add a food back in (last time I tried onions/garlic and it failed miserably). What do I do? Keep going with this extremely limited diet? consider weaning her onto some kind of elemental formula? Stop this extremely restricted diet (for me) and keep nursing her? She'll be 2 in December...

alternatively, if it was a sulphur issue, does that work on a tolerance level as well? She ate lots of asparagus for dinner this evening and yesterday evening, as well as 1/3ish of an egg both days...

[mamafish9]

Yes, sulfur is a bucket reaction as well.

Can you try some other meat sources, and grains, to expand your diet that way first, then circle back around to the veggies?

[lyterae]

Just wanted to send some hugs your way, it seemed(still seems!) like the closer we get to baseline, the more things we find are affecting her. We are not 100% there, at this point in time 75% is so much better than we were that we're just going with it...

[JaneS]

Tanya might now about the sulfur issue from Cutler's book.... ?

[bigknitwit]

I know I keep adding and adding to my own thread - I am at my wits end and quite frankly don't where else to seek advice. I appreciate every input I get helping me out with DD!

I was sick in bed with a fever yesterday morning and dh was taking care of the kids. For some reason he thought apple juice and bananas were okay to give her, and she had 1/2 a cup of juice, and a banana. Nothing seemed to come from it.

Then we decided that maybe we should change our focus of helping dd. Instead of trying to remove every_single trigger food, we should try and load her up with nutrient dense foods as much as possible. Sooo, I made dinner:

pastured chicken
brown rice cooked in turkey stock
roasted broccoli and carrots

She ate everything except the carrots.

She has been itchy for a long time on the tops of her thighs (several weeks) even though the skin looked clear. Well, this morning I took a look at the skin and noticed it's all raised and red. There are also raised red bumps on her tummy (she's been itchy there chronically as well but no bumps). Her diaper area is all red and enflamed (this is not usual). I'm actually thinking this looks like hives (never seen them before)

I need advice. Should I be bringing her in to the doctor this morning (don't know what they'll tell me - we allready have an epi pen)? Should I bring her to a pediatric dermatologist? We've allready been to the regular dermatologist who told me to put cortisone around her mouth to control the reacton and see an allergist. We went to the allergist and uncovered various foods, but they did not correct the problem. Now what? Any advice, any at all, is really, really appreciated!

[mamafish9]

Broccoli is high sulfur, and the apple juice is high sals - and those clear through the same pathway. So this could still be her sals reaction. She may also be short in nutrients if you didn't pass as many in your milk because of the fever you were fighting.

Is she getting her own mag & mo?

[bigknitwit]

She's been having epsom salt baths every night for Mg. I had been giving her the Mo, but then I started getting nervous that she may be reacting to the preservative in the nutricology solution, so I backed off for a few days. That said, I did give her the drops yesterday. I bought a new Mo in capsule, and I'm planning to crush it and mix with maple syrup (great delivery method for her probiotics as well), and get it into her that way. I'll add some extra Mg to that mix as well.

That said, after typing out my last entry, I brought her up to the tub and put her in with the epsom salts. When she got out I put cream on her (emu oil + lanolin seems to really work well), and the whole thing calmed down and almost disappeared by mid-morning! I started to doubt what I had seen earlier (should have taken a picture). All that was left seemed to be the scratch marks - no more red, no more hive-like raises. She wasn't even scratching anymore, and I didn't have a onesey on her (which usually slows down her scratching a ton).

I ate some chicken livers this morning, and I will continue to eat the livers a lot for the next week or so to restore some vitamin A into me (I haven't had a decent source of it in months). I'm wondering about starting vitamin A supplements (fish liver oil), but it makes me nervous that there are many different kinds of fish in the one capsule.