From the beginning. During pregnancy I ate a typical crappy diet. Vegetarian, but made up for the meat w/lots of dairy. Sugar and more sugar. Some good stuff, but mostly crap (although better than what most people in this country eat).
Before I missed my first period, I received a tetanus shot. At 28 weeks, I received Rhogam (Aidan is A-, totally useless) , shortly therafter, I received a flu shot (as recommended by my midwives ).
We had a long labor (60 hrs) and as I was GBS + I received lots of antibiotics during. W/I 18 hrs after his birth he was whisked away to the NICU in NY state. He was poked and prodded by every instrument known to man (and woman). They thought there was something wrong w/his heart, and would not let me breastfeed. They gave him some magical stuff that was full of corn syrup. He was given LOTS of full spectrum antibiotics in case he had a bacterial infection, which it turned out, he didn't. (I was taking acidipholous at this time). He did not recieve Vit K injection as I had been taking Vit K drops myself and supplemented him shortly after birth. He had a simple PDA that resolved itself shortly after birth (about 3 days later).
At home, he is a happy baby, very easy going, very happy. Woke every 2 hrs to nurse, nursed every 2 hrs during the day. Everything was wonderful. I thought I was getting some thrush so we treated w/some Nyastin and it went away. In hindsight, it might have been just initial nursing uncomfortable nipple stuff. His poops were good, no diaper rash, nothing. A happy guy.
My new ped (my old ped fired me at 2 months as I was holding off vaccinations), talked me into HIB. I remember that day crystal clear. Shortly after the vaccine, he became different. Crying, screaming, needing to be held constantly. Not happy at all, only happy while outside in the sling walking. Would only nap for very short periods of time. Crying all the time as he was overtired (I also slept w/him for each nap and still do). A living hell.
He started waking up every 40 min at night and nursing nonstop for the last 2 hrs of sleep, switching boobs. I thought it was a need, and tried to fulfull it so it would go away. I gave up all dairy (hidden too), and I saw some improvement in attitude.
Aidan did not have anything in his mouth besides my breast until he was 8 months old (I wanted to prevent food allergies). He wanted nothing to do w/solids. I figured it was his way of keeping his body healthy. He started having a little taste of solids every day around 13 months. He now eats like most toddlers.
8 months later, I was fed up. My cycles were trying to return and I couldn't take it anymore. At 15 months we tried some gentle "cutting back" nightweaning. I just wanted to get back to every 2 hrs like he did as a newborn. No luck. Lots of screaming and crying. I gave up eggs, some definate improvement, but it didn't last.
I had the RAST allergy test done. Barely tested positive for carrots, corn and peanuts and not positive for dairy or eggs (but I found out that if they haven't had it in their system for a couple of months it will show up negative).
I eliminated those things from our systems as I'm **** breastfeeding (and he nurses constantly all day and all night still).
He is currently allergic (hives, runny nose, out-of-control behavior, bright red anus, crying during the night) to:
corn (in ALL varieties)
we are temporarily (hopefully) off of these items to see if there is a reaction when I introduce them:
all other tree nuts
wheat and gluten
and as of late he has had an allergic reaction to:
We now eat 99% of our food from scratch. We found a ketchup that is okay, a soy sauce that is corn and wheat free, veganaisse is good, and rice dream, but that is about it. I can't eat anything w/salt in it, unless it is sea salt, as salt has dextrose in it which is corn based. No citric acid, no lactic acid, no nothing. So I'm eating REALLY well. Lots of veggies (esp dark green leafy ones), lost of fruits and lots of whole grains (the ones that are left). I eat basically no crap, the only sugar I get is raw honey for my herbal teas, which I have to make myself b/c there is corn in the bags. We eat all the good stuff, lots of sea veggies, garlic, ginger, miso, tempeh, you name it--I've done my reading. Almost all organic (the wax on fruits and veggies also is corn based). We are vegan and even if we wanted to go back to meat, most animals are fed corn. Lots of corn allergenic people have difficulty w/ eating animals that ate corn too.
About 4 weeks ago, Aidan was started on a probiotic, Primal Defense. Corn -free. I was thinking he might have leaky gut (especially w/the new allergies), but we've seen no real improvement.
Guess what? Nothing has changed. The eczema goes away as long as Aidan hasn't eaten anything that he shouldn't have. His behavior is the same way. But he cannot go more than 2 hrs btw nursings at night. I know the breat milk is helping some pain in his tummy.
I just don't know where to go next w/this.
My hubby lost his job almost 2 months ago, 3 days before we were going to start NAET treatment. We will be starting this as soon as we can afford to, probably in January. This is my last hope.
Does anyone have any suggestions? Does anyone see anything that I am missing?
I don't feel like I can do this on my own anymore and am hoping someone can help me.
Thanks for reading if you got this far,
I am very sorry about your situation. We had an extremely difficult beginning too but we were able to get the key problem diagnosed in the early months. Frankly, I cannot imagine how we would be coping right now if we had not been able to take care of the problem.
I can't add anything to speak of to the substantive discussion, but I have gotten tests from both labs and thought I'd give you a little info on that. First, I think you need to find a doctor who works with those labs -- perhaps I'm wrong here -- but my understanding is that you can't order the tests yourself. But you might try.
Both Doctor's Data and Great Smokies do the hair analysis. The cost is basically the same, somewhere around $50. Turn-around time is something like 2 weeks. The information you get is basically the same. I used both because my results from the first were shocking and I needed more evidence.
I haven't done the gut test, but probably should have months ago. It is a poop test and costs about $250, so you may have need to prioritize these tests and these ladies might have some advice in that regard.
I am currently waiting results on an amino acids profle from yet another lab and am hoping desperately that it will shed some light on my personal situation.
I just had a thought -- you mention that your son is allergic to dairy. I wonder if he would tolerate homemade yogurt or kefir. I went on a very strict anti-candida diet and reintroduced commercial yogurt at one point and had a bad reaction. However, I took a chance and cultured my own and I am pleasantly surprised at how well I tolerate it. In fact, I have strong cravings some days and eat a bunch in a sitting. I don't crave anything else, so I have followed the cravings. But it's one thing to experiment on yourself and another with your child, so it's just a thought.
Oh, and I know how hard it is to cut out corn. It is in absolutely everything. There is no way to eat except from scratch. This was our first big diet change (about a year ago) and we really felt tormented by the whole process. Of course, a few months later we would cut out all grains, all dairy, and just about everything else.
Best of luck to you.
Amanda Rose, author, Rebuild From Depression: A Nutrient Guide. Don't miss this opportunity to build a business telling friends about probiotic foods and grass fed meats: Beyond Organic Review.
edited to add: that a natural healer is a great help in sourcing local quality products like raw goats milk, raw honey, and good supplements, and helping to teach about making raw yogerts, kefir, and other healthy foods.
I posted this expecting a quick hug, but am thanking my lucky stars for ALL of this information. I am an information junkie, and I am feeling totally and completely overwhelmed. This is good. Lots to look into, lots of stones left to turn...All great.
I have looked into ALL of amnesiac's links. The last one on the Omega 3s went over my head, like severly over my head but lots more stuck in.
So, tomorrow I am buying some EPO and tonight before I go to bed, I am going to soak some of those soft wheat berries I got at the co-op today. What is the dosage on EPO? I'm thinking I'll have to squeeze out the oil and add it to his smoothie, as he can't swallow yet. I wonder if I can find gelatin-free capsules....lots of work tomorrow. I've also been taking some magnesium per rrr's suggestion, but have seen no improvement, but will keep it up. I am going to be better about getting our flaxseed oil in everyday, and not look for a quick fix. It also seems that the sprouting will help w/a zinc deficiency if there is one? Am I totally off base on this one?
Okay, Hilary, I must get to your kefir link. I'd like to stay away from dairy as the thought of drinking cow breast milk really skeeves me out. Funny how it didn't bother me before I started lactating. :LOL
My "ped" is actually a nurse practitioner, who is basically okay w/us not vaccinating, which was very difficult to find up here. She is a bit of a dork, no doubt. But she does listen to me and is starting to trust my instincts as a mother. For example, when I went to her to ask about allergy testing due to his frequent nightwaking (every 40 min), she said it was a boob dependence, and all I needed to do was "wean by grandma". I told her that we were dealing w/a medical problem, and there is no way in hell would I not only take away his favorite source of nourishment and comfort, but his favorite person to boot. When his allergy tests came back positive, despite not believing in allergies, she realized that there might be more to my instinct than meets the eye. I don't think she likes me very much as a person, but she does do what I want w/i reason. I'll say it, I'm using her to get what I need for my son. It is working. I don't think she has any real medical knowledge that can benefit me, but she has the tools that I do not have. She is very useful. Is it just me or do I sound a little bit crazy?
AAAAAAAHHHHHHHHH. Okay thank you everyone, I have a lot of reading to get to. I can not tell you how appreciative I am of all the help I have been given. As I said in my 1st post, I thought I had reached a dead end, and I am thrilled to find other possible things to try out, and other avenues to look. And, it does help when someone has btdt, unfortunately for you guys.
Okay, must sleep.
Any thoughts on this? If I ingest a good amount of EPO will it come through in my breastmilk? I would also think that I would have to stop the EPO when I become pregnant, no?
I'm also thinking that if I'm starting the EPO (which is a Omega 6) that I really have to make sure I'm consistent w/my Flax Seed Oil to keep the nice balance btw the 2.
Don't want to hijack this thread..but I too understand its value. (you might find the link interesting)
Amanda Rose, author, Rebuild From Depression: A Nutrient Guide. Don't miss this opportunity to build a business telling friends about probiotic foods and grass fed meats: Beyond Organic Review.
Our babe's eczema and allergies took off after his 2-mos vaxes. It was terrible and it's taken a full year to get him healthy again. I don't want to add further limitations to your diet, but it sounds like there's a chance your son could be allergic to soy as well. He's obviously reacting to something else. Also, it's not true that there has to be recent exposure to an allergen to get a positive test result. (altho', in order to get an accurate scope for celiac, the patient must have been loaded with gluten) However, a RAST blood test or an SPT will only show an IgE reaction. And even then the tests are not always accurate. It's entirely possible that your son is having an IgG reaction, which is no less of an allergy than an IgE response, but it's often much harder to dx and many docs. are hard to convince that more testing may be needed. First and foremost, trust your son's reactions. A good allergist will tell you that the only true dx is the reaction anyway. A good ped. will have no problem with you delaying vaxes indefinitely--there was most certainly a reaction to that first one and no doc in his/her right mind would pressure you to continue. Our ped. just smiles at each appt and says, "And I guess we won't be doing the scheduled vaxes today, right?" She doesn't really expect an answer anymore. I'm glad you found someone who won't pressure you--I saw your post above about your father. I don't know anything about Vermont, but maybe your nurse prac. would be a good advocate and resource for you.
Hang in there! You've gotten a lot of good advice and info!
Things are getting worse for my little man, he is now having reactions to soy (SH*T :LOL ), possibly broccoli, and/or beets, and possibly tomatoes. As soon as we are in the clear, he reacts again.
$ has been super tight as hubby's business didn't open until right before Christmas. We are trying to get it all together $ wise.
We have been eating a lot of pumpkin seeds for the zinc, but I'm thinking of getting some zinc supplement just to cover my bases. I take magnesium already, and Aidan and I have flaxseed oil daily. I finally (today) received my liquid EPO and it tastes much better than the other stuff we got previously, so, amnesiac, I would definately say that it was rancid. So I want to give that some time to see how things go.
We tried the rejuvelac, but Aidan had an intense reaction, kinda comical at this point. I'm really afriad of dairy (raw yogurt, kefir) as I don't know if the cows were fed corn. Which has become the bane of my exsistence. Maybe I will look in to that water kefir stuff, I just remembered someone had mentioned it. We had been eating A LOT of miso and tempeh up until soy became an issue. I'm going to try to make my own sauerkraut as well.
In the meantime, I've wanted to go to our NP to get the tests that Hilary recommended, but I wanted to wait until flu season was over, or until we got and recovered from the flu. We are now over the flu and I want to make an appt.
On a side note (not sure if this is revelant), my sister had bad reactions to vaccines as a child--unable to walk, intense pain, high fever, etc. Of course her Dr. explained to my mom, that despite these reactions, she could die from the measels , so she was fully vaccinated. She now has Hashimoto's disease (a hypothyroid disease) and some markers for Lupus. She is wondering if Aidan has some kind of autoimmune thing going on too (doesn't know if it is hereditary or not).
Okay, so I'm going to the NP, and I'm bringing up
*Could this be leaky gut?
*Could this be a thyroid problem (just b/c of my sister's problem)
*Could this be an autoimmune d/o?
*Could this be heavy metal poisoning?
*Could this be an IGG allergic response, vs. an IGE allergic response as so tested w/the RAST? And does it matter if it is?
These are just my thoughts, and looking at your recommended tests Hilary, I'm not sure if those tests would cover these diseases or not. Am I making sense?
What I'm looking for is something like this, "I'd like to rule out xyz, so I'd like abc test" using all those great tests you recommended Hilary, for example, this paragraph:
I would look at all the immunoglobins. IgA, IgM, IgG (and the four subclasses), IgD, IgE. I would also do T & B cell levels. And Lymphoctye stimulation studies (Which looks at cell mediated immunity, and should give you antibody levels for various infections he may have had...) and mitogenic stimulation studies (which might be done on the same test...
So you might get results that look like this:
Lactate Amonia (venous)
You migh also have Amino acids Quantities,
Urine organic Acid: P. Hydroxy Phenyl acetic acid (being a compound that is often seen in children with overgrowth of bacteria in the small bowel)
And maybe cytogenetics of you want...
Other immunology might be:
T Helper CD4
IgG Sub comment (which might say "mildly reduced level of IgG3, normal levels of IfG 1 and 4, Midlely reduced levels of IgG2)
Also, You might have
IgG anti myelin
IgA anti myelin'
IgM anti myelin (though I'd only go for the anti myelin if there are autistic tendencies showing...
It's very difficult to know what you would need, and as someone else has said, you need to be talking to a doctor who actually listens to you, and understands the importance of all of these things ALONGSIDE the body mineral profile...
Okay, I hope this makes sense, thanks again!
Oh, does anyone think that I could get insurance to cover the hair analysis or even the very expensive gut analysis?
How are things going now?
I'm very interested since my DS has eczema too. His lymph nodes in the back of his neck are constantly enlarged. I'm dairy, egg, beef, citrus and nut free (ugh). Not sure how to test ourselves. Been thinking it is our cats and are heartbroken at the thought of giving them away.
Are you eating any soy? Have you tried to cut that out if you are? My dd is not only allergic to cow's milk she is also allergic to soy milk (and presumably all soy). They both give her eczema and a very upset stomach. My sister was allergic to both also as a baby but has outgrown both allergies as an adult..
And Amy, happy birthday Aiden, how are things going?
Nope no soy at all, LOL forgot to add that to the list. I should have done an elim. diet but a month of lamb, peaches and sweet potatoes sounded awful (I'm so starving bf'ing this 24lb'er!)
I generally try to stay away from SoyPI anyways. Maybe I have to give it more time to get dairy out of our systems. Been about 4 weeks now.
Jane, I am sorry you are in this boat too.
We went to the NP and she was....totally useless. She doesn't even believe it is allergies : She didn't think it was heavy metals, didn't want to consider leaky gut, and didn't want to look at his minerals. So, really just a waste of my time. She did recommend another NP who is also a homeopath and might be able to offer advice or help. So not a complete waste of time.
We just started NAET and I'm very hopeful. We are now able to eat almonds and kale So that is a whole new world for us. It so expensive, and that sucks, but, it seems to be helping, and I'll try anything at this point.
I'll keep you updated
Aside from that, I know there are homeopathic remedies based directlty on the vaccine that was a problem. I would look into that.
If you are in VT it would probably be worth a day trip to Boston to see a real homeopath. I would say homeopathy can work absolute wonders! We see a homeopathic doc who is also an md and I find that covers the bases well. Though we have never had (knock on wood) to use allopathic med with any of our 4 children, it is nice to know we have a doc who can treat us no matter what the problem. I would say you definitel need to see a homeopath who understands allergies. There is a possibility your child could also be having reactions to enviornmental allergens - latex,down, who knows? Some kids are extremely chemically sensitive.
My oldest son nursed every hour untill he was about 18 months, then lightened up a bit during the day, but still every hour at night. There are some things in your breastmilk that he may need (beside the obviou) I remember reading about some enzyme or chemical in breastilk that helps the liver function. Could be his body knows it needs that substance to detoxify. Have you looked into chelation or such? HAve you had the hair testing done? He may need a whole body cleanse and detoxify treatment.
aS FOR THE ECZEMA (oops) my youngest has been treated very successfully for that with the homeopathic remedy sulphur.
Overall it sounds to me as if your son has a hyperimmune response to almost everything. That does not really help you much I know, but if you are getting anything into him that is supposed to help the immune system (like echinachea, elderberry,goldenseal etc.) you may want to stop, it seems like his immune sytem is in overdrive. Has he had ear infections,resp. issues,dark circles under his eyes at all?
I wish I could help you more, it is so obvious how very much you want to help your son. When my son was little we went to Dr. Janet Levatin in Cambridge. I have read on the finding your tribe board some don't like her style, but I do remember that she had alot of patients with multiple chemical sensitivities and allergies, she is not an avid vaccinator and is also a homeopath. If you can , call her and maybe she will give you a talk on the phone before setting up an appointment If you can not aford it, we will set up a "send Amy's son to the doc fund" and we will all kick in $10 or something to help. I can tell by reading all the other posters that they feel the same way and would be happy to help you.
I never heard about heavy metals and eczema. I will go out and do a web search. I have some concern about my 21-month-old DS's exposure to lead (although all exposure for me/him was after his birth and he was born with the eczema).
Why on earch would a child come out of the womb with eczema anyway?!?
(We have done elimination diets (all at once: wheat, soy, dairy, egg, corn, nuts), increasing omega acids, increasing B vites -- no luck.)
DS also nurses all night long (and all day -- he hardly eats solids at all) -- I hadn't thought that the Mamamilk could be helping fight the eczema, although in hindsight that seems not unlikely.
More to think about...
(long-time lurker, recent blabbermouth poster)
My intuition says the eczema is some sort of yeast/candida issue with us since DS is unvaxed. He had a bright red facial rash after birth. It gradually got better. I had multiple rounds of antibiotics before getting pg due to incorrectly diagnosed UTI's. I actually have interstitial cystitis (which by the way, I think is also candida related since it is NO problem right now). I also had more antibiotics in an iv right after birth without my consent.
DS had very minor eczema up until 5-6 months old, finally full blown when cereal was started at 6 mos. I had some symptoms of thrush on my nipples, but it was pretty minor and it came and went a couple times very quickly. However, the thrush always coincided with a bad breakout in DS's skin.
We did use .05% hydrocortisone but I did not want to continue, the rash would come right back b/c it doesn't fix anything. Elidel was prescribed and DS got a stuffy nose and headache from it. Then I was horrified to do more research on it, it is not recommended for the under 2 set for a good reason:
So that's when I decided to see a naturopathic doctor. DS gets 1/2 tsp of cod liver oil and either 1/2 tsp. of flax or 500 mg. evening primose oil. (The epo is a recent addition, trying instead of flax.) Also 1000mg of quercetin divided into 2 doses -- it is a bioflavanoid that helps prevent histamine response. And 1/4 tsp. of Baby Jarro-dophilus 2x/day between meals or mixed into fruit. I'm taking Jarro-dophilus FOS and Culturelle probiotic.
I've also been on an Elimination Diet. Although I'm not seeing much correlation with what I eat anymore. I think the probiotics have been working their magic at improving digestion. There's more info in this thread:
We went to a homeopath back in April, and two weeks after he prescribed a remedy, we can eat everything except dairy!! We are staying away from peanuts--its just not worth it w/me being pregnant and all. The coolest thing, is that the homeopath is also a nurse practitioner, so he takes insurance. All I paid for was the remedy and our lunch at the local co-op down there. :LOL So, totally worth the $.
My homeopath thought that my anxiety (I have generalized anxiety d/o) was causing Aidan's allergies. Honestly, I thought he was full of sh*t. Well, after I took the remedy, in a couple of weeks my anxiety had decresed by a good 70% and, as I said, Aidan's allergies were almost all gone. Since then, my anxiety has gotten worse since being pregnant and watching a really scary and anxiety producing "Six Feet Under", so we are going back for a tune-up in 2 weeks. Aidan still has some eczema, but instead of being red and scaly, it is white and some of it is smooth. It is also only on his forearms, and not his face. Everyone thinks he got some kind of burn though :LOL
So that is our experience, and I totally recommend all of you in this boat to run to your local homeopath!!
Oh, edited to add, Aidan's nursing has been cut dramastically. A big part of it is the pregnancy, but he doesn't needit that much anymore, ykwim? Once we were in the clear w/the allergies, and his 2 yr molars were in, we nightweaned, very easily, and w/no trauma. Again, he didn't need it, like he did before.
I'm a huge fan of it. It's an allergy elimination treatment that is non-invasive and works.
WHen I was pg, I wasn't absorbing Iron, got myself checked (muscle testing, you hold up your arm and the practioner asks your body the question "are you allergic to blank?" while you are holding a vial of blank.)
It turned out I was allergic AND deficient in iron. No wonder I wasn't absorbing the stupid pills. The treatment was so simple. Hold the vial for 15 minutes. Deep massage with some pulser down your spine. Then you are not allowed to touch ANY foods/items with that ingredient for the next 25 hours. Then you should be cleared of the allergy. My iron level shot up after the treatment. I doubt this was a coincidence.
My newborn was having trouble breathing (she was very congested). My friend - a NAET practioner - tested her "are you allergic to dairy? No. Corn? no... " It was WHEAT!!! So I stopped eating wheat (which was hard!) for a few days and her breathing cleared up!!!! About a week later I was finally able to make the appt to clear the Wheat allergy. No problems now.
I can post a the whole saga if you are interested.
I'm just happy I never had to go through an elmination diet to A) figure out what my newborn was allergic to or B) avoid certain foods for months.
Amy, that SUCKS about your sister's reaction... I do think your family might have some issues with some (if not all) vaxxes and therefore, no more for you guys.
T Thank goodness, no vax reactions in my family (as far as I know) but my DS was vaxed up to 6 months. no plans on giving him any more and my DS has none and won't have any.
5.5 - girl
Originally Posted by Tanibani
Amy, did the Naet Treatment help at all ??? How did it go?
My practitioner (who was also a chiro), told me that Aidan was not allergic to eggs. Huh? So I tried eggs. Guess what happened? Full blown out eczema, screaming all night long, etc, etc, etc. She also told me he wasn't allergic to corn. I said, in fact he is. She said that he wasn't testing for it.
She was also against my breastfeeding, and kept telling me to wean. I kept explaining to her, that that was not an option in our family right now and that I wouldn't further discuss it. She finally went on to say that it made her uncomfortable, as I am a little over 5 feet tall, and weighed 100lbs, and here was this child, though small for his age, but we must look like an interesting pair. She had problems believing that the breastfeeding wasn't harming me in some way....
So, we are out $600, at least, and owe more to her.
Like I said though, I know others have had tremendous success w/it, and I'm sure my problem was my practitioner. I'm so glad it was so successful for you
My dd1 has autism and is under the care of a homeopath, and we have seen some positive changes in her since then. It is slower going, but then again, autism is deep and she is already 9yrs old.
Anyway, really just wanted to say I am so happy it worked! And what a bargain!! :LOL