I am going insane!!!!!!!!!!!!!

[hereformysunshine]

I have been though 8 months of hell, I am so confused, stressed out, and on the brink of losing my sanity (no joke) I am desperate for some help, clarity, and just someone to say they have been there or understand.

My 14 month old has SEVERE eczema. I breastfed exclusively until around 5 1/2 months and then started to supplement with fresh, organic, homemade food i.e avocado, peach purees, sweet potato.

She started to get a small sprinkling of red dots behind her right knee. Then a patch on her face. Then the patch on the face went away. THEN it came back. The more solid foods she ate the more eczema came. But I had too low of a milk supply and could not breast feed exclusively, and then after watching her eczema get so horrible I started to go crazy trying to watch her diet and my diet, that everyone had me stop breastfeeding.

We never gave her dairy, soy, wheat, eggs, ANYTHING when the eczema came.

We have been on a horrible hunt for what causes her eczema ever since. We have done Alcat, Sage, RAST, and a regular allergy blood test.( the latter shows no food allergies) We have kept detailed food logs and CANNOT find a pattern. After getting back the ALCAT and Sage test we AVOIDED ALL foods that were red, orange, or even yellow. But it never went away and it would get worse so we would circle a food we thought was giving her a reaction. It got to the point where we SUSPECTED like all her 'safe' foods. It's a joke. Now I'm thinking it may be a salicate allergy, but so many of the foods that are approved for that are on her do not eat list that I have NO IDEA what to feed her.

We are now starting chinese herbs, but I am so depressed. My daughter was a NIGHTMARE today. She was so needy and fussy! She just cried about everything, cried to be picked out, cried to be put down. She didn't even know what she wanted. I am at my wits end, please somebody help me….we have been to over 17 doctors, naturpaths, homeopaths, you name it. Please help me….also please point me in a good multi that is soy, corn, wheat, silicate free etc. Here is what came back on her SAGE and ALCAT tests

SAGE AVOID-
BKRS Yeast
Milk
peanut,
white & sweet potato
cashew
cranberry
pear
blueberry
lime
coffe
oat
safflower
apricot
celery
green pea
casein
peppermint
corn
olive
soybean
barley
cherry
peach
aspartame
hazelnut
plum

ALCAT AVOID-
Clam
Mint
Paypaya
Buckwheat
Oat
Thyme
Turkey

Mild-
Bass
tea
cherry
coconut
cranberry
cumin
duck
egg white
fructose
herring
hops
mango
millet
mustard
navy bean
pecan
pinto bean
psyllulim
sage
sesame
snapper
tapioca
turnip
walnut


So those tests say she is ok for wheat, but we gave her wheat and we thought she reacted badly, but it is so hard to tell. Plus everyone says wheat is bad for eczema. So since I heard these blood tests aren't 100% accurate I don't want to risk it, but we need starches to feed her. Half the time I have no idea what to give her, and her skin looks so bad, scaly, and painful. This whole thing is even harder since some reactions may not show for up to 3 THREE yes 3 days, so it could be the lentils from Tuesday making her look horrible on Friday…or it could be the apple she just had for breakfast…you don't know!! I am going crazy, my baby is miserable, is there any hope??

[ASusan]

I am so very, very sorry. You have been through SO much - and it seems like you're doing so many things right, that SOMEthing should work.

YOu may not like what I have to say...may even reject it. But, at this point, I would do steroids to get her to a point of comfort and a baseline for you to start from. We have done a couple of 3-day or 5-day courses of oral steroids for DS's breathing/asthma. I HATED the first time we had to do it. As a matter of fact, we DIDN'T do the first time - we still have the bottle in the medicine cabinet from when he was 10 mos old. But, when we have done those courses, his eczema has cleared up, we've had peaceful nights of sleep (no itching! no thrashing about the bed, no lurching and arching), and we've been able to better see afterward what foods he's reacted to because we're starting "from scratch", so to speak.

Honestly, my view is that Western meds are there to help when you can't get anything else to work, and it looks like you may be at that point. YOu can always back off when her skin looks better.

(We have also done injected steroids for his breathing...and he did suffer side effects of fat atrophy. Just putting that out there, because there are side effects and I've become all the more aware of them. Although fat atrophy is not a side effect of oral steroids, that I know of.)

Best wishes to you and your LO.

[kjbrown92]

That sounds like a long and frustrating trip. Has she been checked for environmental allergies like pets, mold, dust?

What are you putting on the eczema now? anything?

Do you or she take any supplements?

So you are no longer BFing at all now?

What IS she eating now?

It is confusing when symptoms are delayed but what you're looking for in the food journal is patterns. And it can be from 1-4 days after ingestion. So whenever there's a flare, you look at a commonality in those previous days.

I had the ALCAT test done for two of my kids, and there was one false negative on each (that had been previously found by me through elimination). I've never done the Sage labs (is that IgG?).

Keep giving us info and we may be able to help figure it out.

[mbbinsc]

I am so sorry that your DD is suffering so much. I see that this is your first post so I wanted to welcome you and hope that you are able to find help here as so many others have. My DDs allergies are different so I have not had this experience enough to add to the previous posts.

[kjbrown92]

What foods did Sage/Alcat say were "safe/green"?

[earthmama4]

Originally Posted by ASusan

I am so very, very sorry. You have been through SO much - and it seems like you're doing so many things right, that SOMEthing should work.

YOu may not like what I have to say...may even reject it. But, at this point, I would do steroids to get her to a point of comfort and a baseline for you to start from. We have done a couple of 3-day or 5-day courses of oral steroids for DS's breathing/asthma. I HATED the first time we had to do it. As a matter of fact, we DIDN'T do the first time - we still have the bottle in the medicine cabinet from when he was 10 mos old. But, when we have done those courses, his eczema has cleared up, we've had peaceful nights of sleep (no itching! no thrashing about the bed, no lurching and arching), and we've been able to better see afterward what foods he's reacted to because we're starting "from scratch", so to speak.

Honestly, my view is that Western meds are there to help when you can't get anything else to work, and it looks like you may be at that point. YOu can always back off when her skin looks better.

(We have also done injected steroids for his breathing...and he did suffer side effects of fat atrophy. Just putting that out there, because there are side effects and I've become all the more aware of them. Although fat atrophy is not a side effect of oral steroids, that I know of.)

Best wishes to you and your LO.

I agree. Much eczema is food related, but not all. Environmental triggers, dust, mold, animal dander can affect it. But not all eczema is even allergy related. Environmental irritatants, such as fragrances and dyes in soaps, lotions, laundry detergents, cold weather, and synthetic clothing are many of our triggers. DS1's eczema was really triggered by cold weather. Same diet, same foods, all year long, but come winters cold dry air his eczema flared like a monster. The first year, I didn't know it was a weather issue, until it started to clear in the spring/summer and was back in the winter. I think it took a couple years to make that connection, honestly!

Also eczema can get in a self-perpetuating cycle. Even if the trigger is removed, it might not be able to clear without outside help because the skin is in such an injured state. I agree with ASusan, I would use steroids to get it to clear so that you can start from scratch and find the triggers. But really look beyond foods to environment as well. Try running a humidifier if you live in a dry climate. We had good success with Cetaphil cream. I would bathe DS and let him soak, then pat him dry and I would make my own "light" steroid cream by putting a tablespoon or so of Cetaphil cream in my palm and a strip of 1% cortizone in my hand, mix it and rub him down with it (only on the affected areas - which for him was a great portion of his body). This really seemed to help. All cotton clothing was best for him. His eczema started in toddlerhood but got progressively better as he got older, and now as a teen, he doesn't have any. Hang in there.

[ps4624]

I just wanted to send you hugs

I lurk the allergy board because my DD had some issues (very minor in comparison to what you're dealing with) that my pediatrician dismissed. The lovely ladies on this board knew exactly what to do and were able to help me immensely. I am willing to bet they can help you, too.

Have faith, mama. You are doing everything you possibly can for your baby, and she's lucky to have you in her corner!

[Beth F]

I want you to know that you are not alone. My family is plagued with food sensitivities as extreme as your dd. We've done intra-dermal testing, food elimination, blood testing, and kinesiology. We've been told by health care professionals everything from it's leaky gut, it's heavy metals, it's your adrenals to 'I have no idea.' Sigh.

Living this way really is maddening and incredibly stressful but I have hope that some day we'll be able to eat a wider variety of foods again.

At this point, we are starch free, and our children continue to grow. They weren't doing so well before we went starch free. So, I rationalize that agriculture and with it grains and many starchy foods have only been part of human history for a short time. Therefore, it may not been necessary that grains and starches be a staple of my family's diet. DH isn't so sure about this. SCD and GAPS are two diets that are starch free. There are probably others.

In the mean time, I give our children and myself this probiotic. It's dairy, gluten, corn, FOS, inulin free.

Because they can't tolerate so many vitamins (including the natural ones), I give them this one. These are not tasty but our children relent. We give them magnesium and zinc from this company too.

We take this calcium. The silica it has in it is from horsetail. That may not work for your daughter.

This is the only multi that my gi system will tolerate. I wish that I knew about it when I was pregnant w/ our second.

This is the fish oil that we sorta tolerate. Our second child gets a rash from the kid's strawberry dha from the same company. They are process the fish oil so that heavy metals do not contaminate it.

Our children's rashes and sleep got much better once we figured out more of their sensitivities. You mentioned apple. Apple is a problem food for us.

I found that if we peeled and over-cooked certain veggies, we tolerated them a little better.

We also found that baths give dd rashes painful enough for her to stop voiding and stop drinking water so that she wouldn't void. This led to other problems. We tried several different fragrance free soaps including our own homemade soap to no avail. Now, we will only shower her and use soap in her hair and on her hands. The rest of her gets a gentle rinse.

Sometimes, I wonder if it is from our home that is old and has some mold (not black mold) issues. Then again, most homes have some mold somewhere.

Also, we use no fragrances or harsh cleaning chemicals.

As for Chinese herbs, you need to be sure that they are free of heavy metals.
This article discusses folk herbs. I'm sure that there are more discussions on the net.

I hope that you're able to find some resolve for your daughter.

[franklin907]

I don't really have any help to offer, only to say I know exactly how you feel. My three-year old son has severe eczema and it's a daily guessing game, sometimes it makes me cry and feel like I'm literally going insane. We've tried so many different things, cut out so many foods- literally being down to only a few to feed him, and we still can't figure it out. I actually just started a blog, it's called:

http://allergicadventures.blogspot.com

It has been therapeutic for me to write about our journey. We did put him on nystatin and diflucan last summer and he's still on them, treating him for yeast overgrowth. This is the first thing that has ever made a difference for us. We are also doing LDA (low dose allergy) therapy with him, he has gotten four shots now and unfortunately we haven't seen huge successes with it, but have talked to others who have, so we are still hopeful! It's a thread on here, but I don't have the link just now, I'll try to find it. We also use brainchild nutritionals for our supplements, high dose of probiotics daily, and 2,000 iu's of vitamin D. I only wish I could tell you what has worked for us, but unfortunately I don't know. I am just hopeful and we always tell ourselves one day it'll be a bad memory! Please send me a message or check out my blog, so you know you aren't alone because it does really suck! I don't really know a better way to describe it.

[hereformysunshine]

Thank-you all so much for your replies. It means SO much to me. I cried my eyes out earlier today and coming on here and seeing such support is so nice!!! Thank-you, thank-you, thank-you!!! You have no idea what ALL your comments mean to me, I need support and just someones to try to help me figure this out, but no one seems to care. Doctors tell me she'll grow out of it, meanwhile I watch my daughter in pain, slow to grow, etc. and just wait. I want to do whatever possible to help fix her, I have to. But doing it alone is so hard!


Susan thank-you for your reply. Yes I really do not want to do steroids, but I see what you are saying. That is our final resort, I'm so glad it worked for you baby!! I'm just worried it could do more damage, people talk alot about steroids and asthma? I don't know much about it though.

KJBrown she was breastfed exclusively for 6 months and then I added in a few homemade organic dishes, like avocado, sweet potato, peach etc. to supplement her since I had a hard time making enough milk and she was so active. She started with the light sprinkling of eczema behind her knee a couple weeks after starting solids. And then a few weeks later a patch came on her face, but after a few weeks it went away...only to come back with a vengence. She also got sick shortly after starting solids. She became fussy and we thought it was because she was teething, but her teeth didn't start to come in until 12 months! Her growth had started to slow around the 6 month mark and she is now in the bottom percent for height and weight. We have 2 houses at opposite ends of the country, one is drier one is more humid. Although in warmer weather is does tend to look its best, it doesn't make it that much better. All her clothing, mattress, sheets, etc are organic cotton. We recently got an organic cotton dust mite barrier cover, we've used a humidifier, etc.

I stopped breastfeeding at 1 year. I could no longer breast feed her exclusively (my milk got way too low from all the weird diets) and I was going crazy watching everything I was eating and she was eating that I had to stop. I regret it in hindsight, but I was a VERY moody, skinny, mommy.

We have had a hard time finding the right creams to put on her. We have tried it all and find shea butter to be the best for her. Her skin is so sensitive and reacts to almost everything!

Supplement wise she was on nothing when the eczema started. But I have some zinc, calcium, and magnesium mineral drops I started to give her. My husband was worried she wasn't getting her vitamins she needed so we started giving her twin labs infant vitamin, but have since stopped since we don't know if she is sensitive to any of the ingredients. We also tried a probiotic, but found out it had a base of apricot powder which she is sensitive to.

Seriously we have tried it all. The most frustrating thing if there have been days (VERY FEW mind you) where she has looked FABULOUS, and then it goes back to looking horrible. So we have done a no rice diet, no berries, diet, etc. etc. etc. No avocados, no sweet potatos, no EVERYTHING. I Hate food!!!!! And I'm so jealous of all of you who say "apples is a problem for us" or "we can't do corn" etc. How do you know? Ours is all a big guessing game. We think she can't do avocados, but we don't know for sure. It's almost like everytime we take out something we suspect, we could be putting in something else that is bad for her, so we never know what it is for sure. I am going crazy!!

We have a very detailed food log on excel with everything she eats, her moods for the day, how she slept, it is also colored at the bottom so you can get a visual. For example green means she looks great, yellow is mild, light red moderate and dark red bad. If anyone wants to see this just email me your email address and I will send it over to you. Also KJBrown I have her Sage and Alcat tests online if you would like to see them. I can forward those to you as well.

Now that we are trying the Salcyate Acid diet (today was our first day) here are foods thought to be safe for her, but it's a hard list to make a toddler happy. I am so hoping she has this sensitivity, I know that sounds weird to hope for, but at least I can have a list and follow it, and not have to do this guessing game anymore. It's gotten to the point where I have no clue what to feed her and I just want to give her to anyone and let them feed her, and maybe the could do a better job because I am failing. I am in charge of everything that goes into her mouth, and because of MY mistakes she looks horrible and is in pain. Everyday I have the chance to make it better, but I just can't seem to figure it out. I feel like the biggest loser and the most incompetent mother in the world.

Foods on this new salicyate diet
(Is garbonzo bean flour okay for the salciate diet?)
Lamb
beef
salmon
halibut
flounder
sardines
bananas
golden delicious
butter
iceberg lettuce
beans ???
cabbage
lentils
califlour
asparagus
millet
maple syrup
onions

Beth F thank-you for all your information. If you don't mind me asking, what do your children eat daily if you are starch free?

On another note this is the second time I've had to write this reply. I guess it took me too long to write and I got logged out, so when I logged back in they deleted my entire message. Talk about a bummer

[wrabbit]

Here's what eventually worked for us,

grapefruit seed extract to kill candida over growth
probiotics
no dairy
hypo allergenic laundry soap(not just a natural one)
cod liver oil
ground flax seeds( have to be freshly ground for each use)
weleda calendula cream slathered on a couple times a day
sunlight on skin

Also I think an important factor for me was changing my attitude about it. I always felt I had to explain to people what the rash was on my daughters face and that it somehow reflected that I was and inadequate parent. I just totally let go of that and realized that she was perfect as she was, her body and immune system were doing there best to protect her. I stopped trying to fix it and instead just accepted and loved her bumpy red patches. Basically I just stopped focusing on it as a problem and it started to slowly fade. I know this sounds kind of odd but it is what worked for me. This is an affirmation I would use when I found myself having obsessive thoughts about the eczema.

"harmony and peace, love and joy surround and indwell in us, we are safe and secure"

[DevaMajka]

For vitamins, Thorne clearly states what allergens each vitamin is free from. Sisu has a few that are supposed to be for very allergic people. I don't know about children's multi's, but I'd check out the Thorne site.

Is she on any type of formula? If you are worried about her nutrition, would the hypoallergenic stuff be an option, just to sort of supplement?

We suspect sals sensitivity in ds2. His rash started right after we started giving him solids too. After keeping a food diary, and trying some other foods, it seems that he reacts to even a tiny bit of sal containing foods.
Sals sensitivity is a really hard one to pinpoint, imo. Most of the ED's rely on foods high in sals. And it's not one you read about anywhere- I would never have suspected it if not for a mama here mentioning it.

How accurate are those tests supposed to be? How many of the foods did you already suspect she was sensitive to?

Have you seen the Failsafe diet? It might give you some ideas, though it excludes more than just sals. This is what we're currently doing (for me- his diet is still very limited), and we seem to be getting somewhere.

[dannic]

Hugs, mama! Welcome to the allergies forum! (Sorry you have to be here, but hey, there're a lot of great mamas to join you in your journey!)
I share your frustration, tho not at your level. I have one dd who's issues are very clear cut and precise (well, mostly, lol). My second dd is another story. She gets random rashes and a bum rash that almost never goes completely away. I'm finally cluing in to histamines and or sals. There a great thread on that around here somewhere...
Come introduce yourself on chat. Dannic

[JaneS]

Originally Posted by hereformysunshine

Foods on this new salicyate diet
(Is garbonzo bean flour okay for the salciate diet?)
Lamb
beef
salmon
halibut
flounder
sardines
bananas
golden delicious
butter
iceberg lettuce
beans ???
cabbage
lentils
califlour
asparagus
millet
maple syrup
onions

I can help you with this as my DS is *very* sensitive to salicylates and gets eczema from them. We use Spectrum Organic palm shortening for a skin cream.

Beans and lentils are fine. Just not fava beans. Garbanzo bean flour is okay but I would rather not do a lot of bean flours b/c they can be hard on an inflamed gut. We do arrowroot, tapioca, rice and sorghum.

Here is a salicylates chart:
http://salicylatesensitivity.com/food-guide

Use very little onions and well cooked, my DS can react to a lot of those. This will change as the gut heals. Cook cabbage til very soft.

Careful with bananas, make sure you trial them. I would start with pears as only fruit for a little while if she is still reacting to this list.

Halibut can be high in mercury, check your source.

It is really, really hard!!!! I know EXACTLY how you feel, believe me.

[Beth F]

Originally Posted by hereformysunshine

And I'm so jealous of all of you who say "apples is a problem for us" or "we can't do corn" etc. How do you know? Ours is all a big guessing game. We think she can't do avocados, but we don't know for sure. It's almost like everytime we take out something we suspect, we could be putting in something else that is bad for her, so we never know what it is for sure. I am going crazy!!
I am so hoping she has this sensitivity, I know that sounds weird to hope for, but at least I can have a list and follow it, and not have to do this guessing game anymore. It's gotten to the point where I have no clue what to feed her and I just want to give her to anyone and let them feed her, and maybe the could do a better job because I am failing. I am in charge of everything that goes into her mouth, and because of MY mistakes she looks horrible and is in pain. Everyday I have the chance to make it better, but I just can't seem to figure it out. I feel like the biggest loser and the most incompetent mother in the world.

Beth F thank-you for all your information. If you don't mind me asking, what do your children eat daily if you are starch free?

On another note this is the second time I've had to write this reply. I guess it took me too long to write and I got logged out, so when I logged back in they deleted my entire message. Talk about a bummer

I'm wondering how you and your dd are doing?

As for figuring out what agrees or doesn't, it has been years of 'peeling back the onion'....and there is always another layer and more to discover.

Also, I think that you are doing a wonderful job trying to figure out what your dd needs. It's just the beginnings of journey's seem more challenging when there is some much to learn.

Well, I eat green beans that have been frozen, cooked to death, and have small seeds. If they haven't been through all that, I get stomach pain. Asparagus has to be peeled and cooked to death. I can only eat chicken that's been frozen shortly after slaughter from local farms. Pork, beef, and bison seem to agree with me. We eat sardines and wild caught pink salmon (only once a month). I can have a little peeled and over cooked zucchini. I give in and eat pecans but should not. That's it.

Our children can eat what I eat. One child can eat blueberries (though I'm wondering), sea vegetables, beets, fennel, raw and cooked carrot, spinach, limas, peas, lentils, and navy beans.

Our other child eats eggs 2x/week but probably shouldn't, bananas, pineapple, beets, fennel, cooked carrots, cooked peppers, cooked eggplant, spinach, and the same legumes. I guess that the legumes have starch them but there is protein too. Both dabble in avocados.

In the login area, click on the 'Remember Me' button to avoid getting logged out....it's frustrating after you've worked so hard and long on a post.

[californiajenn]

Originally Posted by Beth F

Sometimes, I wonder if it is from our home that is old and has some mold (not black mold) issues. Then again, most homes have some mold somewhere.

Mold in my former old rental home was the downfall of my health! I would highly recommend getting your home checked out and treated if needed. I just finished reading The Mold Survival Guide by Jeffery May and I learned a lot about how to look for and treat mold, not that I need the info much, as I moved a few months ago.

GAPS has helped get my symptoms under control but it's only part of the healing solution.

[gigismom]

wow i have totally felt the same way... insane, overwhelmed, failing my ds. all i can say is you are in a good place to get support and info to lead you to different areas to explore. the mamas here have been such a help to me. we have recently also discovered a sals sensitivity and i agree that this one is particularily difficult to pin point. in our case, i think ds actually can tolerate quite a bit of sals but when the scale tips he reacts. so in his case, it was difficult to see a pattern because he did not react every time he ate a certain individual food. it is when the bucket got too full that he reacted severely. this is soooo hard to see unless you really write down everything for a long period of time. this is a journey (and you have clearly been on for a while). it can not be fixed quickly, unfortunately. hang in there and know that you are doing a great job of taking care of your child and finding the cause of her problems now while she is young. we are currently eating low sals, egg free, gluten free, dairy free, soy free, corn free, fish free, low grains overall.... it is very tough but welcome and hopefully the mamas here can help you

peace

jen