Sunday, October 31, 2010

Our Health Pilgrimage to...Las Vegas??

Since our daughter was about 14 months old and had two ear infections in a row, we have been on an alternative healthcare path.  The pediatrician suggested tubes, because at this point the only tool they had, a scrip pad, wasn't helping.  She had two rounds of antibiotics, and the infections would likely continue to return, because the fluid wasn't draining from her ears...I asked why the fluid was there.  Her answer was, "We don't know."  I asked her who they refer to, who could possibly have a solution for the problem, instead of just the symptom (stagnant fluid that was accumulating behind her ear drum).  She said they sometimes referred to a chiropractor.

We knew Dr. Dave Jowdy from professional networking, and gave him a call.  During the first visit, he said that our daughter had a yeast problem, and suggested we put her on a low-glycemic diet, to help her body get back to balance.  We immediately took her off all high-glycemic foods (including dairy, non-whole grains, and all fruits other than berries).  The fluid in her ears went away, and she never again had an ear infection (she's 6 now).

We have determined since then that she has a pretty acute sensitivity to dairy.  Her symptoms are not as obvious as our little guy's.  When she was little it materialized in rough skin on her shins, cradle cap, and every time she had a cold, it escalated into significant sinus issues or lung congestion. 

Today if she has too much dairy, it looks different...coughing, deep circles under her eyes, and itching on her palms and feet.  The coughing is amazing now...if she has the slightest bit of dairy at a birthday party, that night when she goes to sleep she'll start with a hacking cough for one or two nights.    All from a little bit of ice cream or cheese.  Here I also need to share, because some people we've talked to recently didn't know this:  dairy includes milk, cheese, whey and casein.  It's also important to know that from everything we've read and chatted with others about...if you eliminate dairy, to help with respiratory symptoms for instance, it takes three and a half to four weeks to see significant improvement.  It takes a bit for your body to clean it out.

Allopathic-western medicine deals with most issues with their limited tools: drugs and scalpels.  They operate on flow charts, which include escalating to stronger drugs, ending in an operating room.  Western medicine is not skilled in resolving chronic conditions.  We see it every day in our work.  Traditional MDs throw shots and pills at our clients, until the clients realize that there's another way.

THIS is why we are in Las Vegas to see an MD Homeopath for our little guy's food allergies and sensitivities.  We don't believe in treating symptoms.  Symptoms are red flags to help us understand what is really going on.  His symptoms were eczema, GI distress, poor sleeping patterns, (all of which he's been doing MUCH better with, since eliminating distressing foods) but now anaphylaxis is added to the, we are very motivated to find out how to help his body reach more balance.  The food allergies are a symptom...what IS the root cause.  We plan to get some answers tomorrow.  When making the appointment, the clinic staff repeated to me, "We want for you to ask all the questions you have about how to support his little body.  We are going to find out what *his* little body needs, what may be compromising his system, and how to support *his* body.  We want for you to know exactly what *his* body needs to be healthy."  We've seen a lot of doctors now who talk like this...but not until we went off the beaten path of 'regular' medical practices.  If you aren't hearing doctors or medical professionals speak to you like this, there are other options.

Now, I challenge you to go through your health history, or that of your child...what symptoms have you been experiencing that are actually pointing to a deeper issue?

Monday, October 25, 2010

Traveling With Food Allergies

Have food...will travel.

We have been working with our tot's food allergies now for a year and 4 months.   Since his sensitivities and allergies are MANY (nuts, olive oil, dairy, soy, eggs, corn, gluten and more), we have found that traveling with food is the only way to let go of food anxiety on a trip.  Our daughter had some much less severe sensitivities, but we started traveling without being dependent on restaurants for over 4 years now.

Here are some of the lessons we've learned over the last several years of traveling with tots with food allergies.

It's really hard to trust restaurants.  If you are new to dealing with food allergies, you will want to consider facts like these:

National chain restaurants are generally a little safer, and more consistent, since they have guidelines and allergen-listed menus in some cases.  We have found Red Robin to be a good place to go with the kiddos (we eat out VERY rarely), because it's kid friendly they have an allergen-listed menu.  We have still brought food with us in a small cooler/insulated lunch sack for my little guy, since we are SO frightened of cross-contamination with the anaphylactic allergies he has.

I HATE to be so negative about something, or create fear, but we have had some ridiculous experiences with really ignorant wait staff.  In their defense, before we had to deal with the frightening reality of severe allergies, I wasn't aware of a lot of ingredients either.  Just know that most of the time, wait staff will NOT be trained in food ingredients.  Asking to speak with one of the cook-staff is completely reasonable.  If you are in a situation where you need to eat out, be as safe as possible.  There are post-it type pads available online, where you can have your allergies printed on the pad, and just hand it to your server, and they can come back with the kitchen's recommendation for your restrictions.

We always book accommodations with a kitchen.  OR, if there is not a kitchen available (and we are driving-plane trips get a little more complicated)...and this will sound wild to some people...we bring our camping cook stove with us, and find a park to picnic.

We pack a large cooler with prepared foods we cook the day before we leave, and always have some of our convenient packaged foods in our bags with us.  When traveling on a plane, we tell a flight attendant when we check in that we have a severe peanut allergy, and have lots of snacks on hand that are safe.  We never assume that 'they'll have something safe'.    BE PREPARED for at least an entire day of snacks and something substantial in an insulated lunch sack when you are traveling.  Always pack enough for unexpected delays.

These coolers were what we packed for a week long trip to Thermopolis, Wyoming and Yellowstone National Park.  Knowing that it would be tough to eat on the road, we opted for being over prepared.  This trip was before we knew our little guy had an anaphylactic reaction to nuts, so we actually ate out for two dinners while we were there (we haven't eaten out since his reaction, it is too scary right now)...but we really didn't have to eat out, we had plenty for the whole week, and just refilled our coolers with ice every couple of days.

Something to remember about eating out with food can NOT trust a salad/food bar.  Cross contamination is much too likely.  If you are sensitive or allergic, avoid them altogether.

Scope out the natural food grocery stores in the area you will be staying, BEFORE you leave.  If you are staying somewhere you book through a real estate agency, property manager or resort, you can always call them and ask for a recommendation.   If you print out directions from your accommodations to the health food store, and put it with your confirmation sheets, it will be easy to swing by on your way in, or for someone to head over there while the family is settling in.  If you wait until you get there, it may be harder to print out directions, or get everything coordinated.  For us, this is a necessary measure to reduce the stress of traveling with food allergies.

Travel is not only possible with food allergies, but enjoyable.  Planning ahead will reduce stress, and anxiety about food selections...and you'll probably end up with healthier choices than you would have at a restaurant anyway!

I'd love to hear your experience with traveling with food allergies, or suggestions for ease and fun!

Monday, October 18, 2010

Food Allergy Floundering

Seriously, this is such an's WAY more than that.  It's an all-consuming, anxiety ridden adventure, with surprises everywhere!

We had our first 'anaphylactic drill' this morning.  Our little guy drank some of his smoothie, had a bite of orange, we were getting hubby ready for work, and he came with me to wake up sissie.  That's when I yelled down to Gary to get the Benadryl.  Little Foot's chin was bright red with hives around his lip, and it appeared that his lip was starting to swell.  That's how his anaphylactic reaction last month, hubby gave him Benadryl and we went into full surveillance mode.  Every 30 seconds:  "Does it look worse?  Does he have any more hives?  Is the swelling going down?  Is that cough because of a reaction, or the cold the kids are getting over?  Does his lip look bigger to you?  While we were watching him, we all were getting into the car.  This is how this 'adventure' affects a parent.  We were going to begin the drive to the hospital...just to be closer, if it ended up progressing.  Sissie was in the car, ready for record time, I might add, and one of us was going to leave the hospital to drop her at school, which is between the hospital and our house.  Insanity.  I'm telling you that we are quickly losing our minds.  We have NO idea what caused him to react this morning.

For a year we have managed to reduce his exposure to food allergens, feed him a very healthy diet, and now it seems within the last month we are losing ground quickly.  We seem to be in a tough spot of losing more foods we can feed him safely.  SO, this morning I call National Jewish to get in with the world-renowned allergists, just to find out what his high level reactions could be, and move forward with some other (holistic, not necessarily western protocol) care.  The soonest they can get us in is 6 weeks from now.  Since we can't wait until then to figure out what we can feed him safely, we have to look into other testing options.  Besides the fact that they want to push us through their protocol and do the skin prick testing that first appointment.  From everything we've read, that is the least reliable and uncomfortable of all the tests.  AND we've read several accounts of children with anaphylactic allergies having a serious reaction and needing epinephrine during the test, so the families and doctors decided not to go that route again, but just test on blood vials.  Our western options are just not at all appealing.  I want to talk to other parents who have done both.  Used allopathic medicine for testing, and system support and care in a more holistic way.  I would really love to chat with others who have done something, anything that was helpful besides just avoiding the foods that were allergens.  We have a number of moms in our community now who, although their children haven't shown anaphylactic reactions, they have been reduced to a handful of foods their children can eat safely.  There is an answer for how to help their systems, and we are going to find it.

Saturday, October 16, 2010

Saturday Rant: The Case Against Pediatricians

Why do pediatricians (MOST OF THEM) not know anything about nutrition?!  Some of you may claim you looooove your pediatrician, but what do they *really* do to support you, in the 10 minutes you have them in the exam room?  My docs always had their hands on the doorknob, until we found our current family care doc (she's a DO, an extraordinary listener and holistically minded doctor), and our progressive health care practitioners and naturopathic docs.  If your pediatrician sends up red flags constantly about where your child is on a growth chart, but suggests feeding them processed crap for food, they are ignoring all other landmarks of health for your child.  In the last 6 months, so this is RECENTLY, we have had pediatricians suggest the following foods to people we know for gaining weight:  cold cuts, Pediasure, pizza crusts, pasta, hot dogs...WHAT?!  All of those have inflammatory components, excess sodium, sugar, nitrates...etc, etc.  Why not some good, healthy fats or oils, like in avocado or flax? 

Now, I KNOW that there are exceptions to the rule, but my bet is over 90% of pediatricians are completely ignorant to what to suggest to parents to feed their children for optimum health, or to a breastfeeding mother to support lactation and healthy growth in a child.  It is OUR job as parents to NOT ACCEPT mediocre care from mediocre care providers.  Until we put our money where our mouth is, and start demanding that our doctors get education in nutrition, they will continue to only be required to take one class-or LESS- of nutrition in their education.  I can stand in front of you right now and tell you that I know more about nutrition than most pediatricians out there.  WHY?  Because I've taken the initiative to read nutrition books, information on cellular nutrition and observe my family when eating certain foods.  Do not trust your doctor implicitly.  You have HIRED them to provide a service.  They may know more about the general pathology of disease in the body, but when it comes to ANY chronic issue, they are stumped with what to suggest other than what the prescription company (who brought the office lunch this week) has told them THEIR
drugs will do.  If you question what I'm saying, do your own research.  I DARE you to do your own research and find otherwise.

In relation to food allergies:
Pediatricians supposedly specialize in the HEALTH of our children.  They ignore cradle cap, dark circles under a child's eyes, dry patches and eczema on their skin,  and diagnose reflux, prescribe medications, instead of going into details about mom's nutrition, if they are breastfeeding...OR they suggest mom STOP breastfeeding if the child has reflux because they are not reacting well to mom's milk?  WHAT?!  That is malpractice as far as I'm concerned.  When our little guy had reflux, I recognized my nutrition may be the issue, after doing some research and consulting our naturopathic doctor.  We cut out dairy and soy, and his vomiting reduced by 90%...I'm not kidding.  It was profound.  If we had been advised to STOP breastfeeding, do you understand that the options for feeding him would have been extraordinarily expensive, and would have even been HARMFUL to his health?  The fact that I could eliminate the two primary ingredients of most formulas out of my diet, and continue to feed him healthfully should trigger some ideas for people.  Soy is second only to dairy as a primary allergen...what are the two ingredients in all major formulas?  You got it, soy and dairy.  How can pediatricians claim to be supporters of our families and their health when they know NOTHING about nutrition?  I can soften this by saying it's not their's not required in their education...but it's not changing and we have numerous health issue in our country that are CAUSED BY NUTRITION.  When our daughter, now 6, was 6 weeks old, I asked my pediatrician what I should be consuming to ensure she was getting what she needed, and support my health as well.  His answer, "Drink a lot of fluids."  I said, "Really, that's all?"  He said, "That's it."  I went home and did some research...his answer should have been, "Drink a lot of water, be sure you are getting high quality foods especially protien, eat organic if you can, and be sure you are getting some extra fish oils or other Omega 3s in your diet."  Ok...that's simplistic, but my answer is better than his (obviously not medical advice, since I'm not a trained to be a doctor, but I would recommend getting nutrition advice from someone trained in nutrition, not just someone who has gone through a program to become an MD).  The truth is that we need to start demanding better care for our families.  AND we MUST start making better choices in nutrition for our family's health, even if it is less convenient at times.  Personally, we have paid out of pocket for a large portion of our health care, and continue to do so, because our insurance covers disease managers, not health care providers. 

Friday, October 15, 2010

Answers...Looking for Answers

8 years ago I had a dear client whose son had anaphylactic reactions to several foods. Due to the high level of anxiety Mary had to endure being constantly vigilant to keep her son safe (and the fact that she had seen him nearly die a few times), she had developed an anxiety disorder. I remember thinking clearly, "I pray we never have to deal with that...but it's probably due to something which we don't plan on exposing to our future children." The 'something' in our minds that was responsible for severe food allergies were related to a child's immune system being bombarded at a young age, as in vaccinations. We have been VERY conscious about choices we made surrounding what our children were exposed to, and have done literally hundreds of hours of research on subjects like vaccinations, medicating fevers, circumcision, prenatal ultrasounds and labor drugs. We made our personal decisions for our children, to avoid vaccines. At this point, he's two and a half, I can say that it would have been likely that our little guy could have had a severe reaction to the vaccinations, since the fillers in the shots include things that his little body would have reacted to, the least of which would have been eggs (albumin is a common filler in vaccinations). The ONLY medication he has EVER had was one dose of Tylenol on the third day of a flu with a high fever. I took *nothing* while pregnant, avoided caffeine and never had a drop of alcohol. I really thought these practices would make it less likely we would end up living this kind of experience.

Just so you are clear on the extent of his sensitivities and allergies... He reacts with eczema flares, rashes, or hives to the following: dairy, soy, gluten, corn, eggs, flax, avocado, banana, olive oil, squash, apricot, pineapple and mango...and his anaphylactic allergies are to walnuts and peanuts. This does not include other foods that affect his GI system. He was 18 months old before we got a solid stool out of him, and that was after eliminating everything you see above. We became aware of the peanut allergy when he came in contact with some on his wrist, and it flared up to his chest. That time the benadryl worked. We decided not to risk another exposure, or getting caught without an epipen. At that point, we still had other nuts in our home, but didn't give him any. We visited our primary care doc for an epipen prescription, and thank God, last month when he had the walnut, we had it with us.

The research we have done on how to evaluate his system and proceed with testing has resulted in a less than clear outcome. There are very different approaches from a western (allopathic) medical perspective, and that of the holistic health care providers. If you think you won't ever try something...have a child with a chronic problem and a suggestion from someone who said it worked. We have seen many practitioners for our little guy, but haven't gone down the blood/prick tests of western medicine yet. Here's why...

Even a doctor at National Jewish in Denver, a world renowned allergy center, says that the only way to truly test a food is a food challenge test. This means a nurse sits with you for hours while they give you more and more of the food, check your eczema, etc, and log results. It's $200-$400 per FOOD. Blood tests and prick tests can have many false results- positive AND negative, which means you could potentially take food away that isn't actually a problem, or give them a food that wasn't ok. Unfortunately, with friends, we have seen both instances of this, and it's SO FRUSTRATING!

SO! We haven't been eager to subject our 2 year old to those tests, and then take a food away that could potentially be a false positive. Remember that we didn't know he would actually have an anaphylactic reaction until last month. AND we have hoped beyond hope that as he gets closer to 3 that he will grow out of some of the sensitivities, as we've been told may happen as well. The end result of all this is: we still don't get any definitive answers, even with the time and money investment in these kind of tests.

Through elimination of stressing foods, supplementation (probiotics, enzymes, oils and some other GI support supplements) and some food rotation, we were able to completely eliminate Max's GI sensitivities AND his eczema...for a while. But in the last month or so, it seems that there are some little rough/dry patches behind his knees (not scaly or red, but rough), which may indicate that there is another food that he has developed a sensitivity to. We had been told this sometimes happens. When a child's system is so compromised, they basically can begin to react to any food they eat regularly.

Our little guy already has a health team...naturopathic docs, chinese medicine practitioner, nutritionist, primary care doc and a chiropractor. We have been doing what we can to boost his system, reduce systemic inflammation and support his GI function. However, there has to be more we can do, because at this point we face the possibility of losing YET more foods, when we are already so limited in his ability to process...AND we now have the reality that he's had an anaphylactic reaction. THIS means that we have to at least get a baseline blood test for the highest markers, to know if there is anything else that may cause a life-threatening reaction.

THIS is why we went to a BioSet practitioner for him yesterday. She states with certainty that his system is overwhelmed because of his level of toxicity...I've heard this before, but have SUCH a hard time with this concept. His body has only been on this planet for a short time! Well, she explained that he has everything *I* have. Hmmmmm...well, it wasn't until 4 months into our search for an answer that we discovered that some of my symptoms could be related to an autoimmune issue. That's when we started to realize that his little body could have been bombarded the whole time I was pregnant and nursing...but I was attributing it more to an antibody issue, as opposed to a toxicity issue. This made me think a little more. My nutritionist told me a month ago that I likely had a heavy metal issue...if all of his cells were created in an environment with heavy metals, that could certainly have an effect on a developing system. I don't head is going to explode sooner or later. I don't know what to do.

I wish I could turn my brain off sometimes...this would be why I've been working at night so much's a great escape, so I can think about something other than the fear. The fear, the grief, the frustration.

I'm terribly afraid of something happening to our sweet little guy, that's the biggest piece. Smothering fear for a mother that something will happen to him, and I can't save him. It's beyond words. I remember waking up from a dream some time ago, where my daughter fell in a lake, and I couldn't get her...I'm realizing now that I have that feeling every day. It's all I can do to function some days.

Then comes the grief...the grief of life as we knew it...slipping with a food he's sensitive to at a pot luck or a restaurant meant a bad diaper or his eczema would flare a little. NOW the risk is the possiblity of a medical emergency. It's not worth it. I can bring his own food, which we've done for a year, but we would always give him *something* off our plates. We can't share with him anymore for his safety...and he's 2...he knows when he's being left out. It's not fair, and I hate the feeling of not including him, so we are choosing to eat out other times.

THEN comes the frustration...knowing that some of the foods we ate before had been manufactured in a facility that processes nuts makes me want to vomit. We were playing with fire, and didn't know it. Did you know that with each subsequent anaphylactic reaction, it can get worse? I've seen my son's face swell, turn tomato red and almost stop breathing...I had to shove a needle in his thigh while both of us cried, Gary driving like a maniac the two miles to the hospital, and my daughter had to witness it, too. I'll tell you one thing. I won't ever again shun a parent for overreacting...

I am now...that parent.

Wednesday, October 13, 2010

It's All Fun & Games 'Til Someone Gets Poked...with an Epipen.

We've known for a little over a year that our sweet Little Foot has food allergies (since he was about 10 months old) .  We've learned from our late night research binges in this time that food allergies in children (particularly under 3) exhibit in many different ways.  Most things in this list had been in front of our pediatrician, but they never said anything about them being linked to food allergies.  If you are pregnant, or have a tiny tot, look these over carefully, so you can identify them sooner than later:

deep circles under eyes
chronic dry skin
chronic diarrhea/foul diapers
frequent sleep interruptions
cradle cap
chronic gas
waxy ears
runny nose
chronic cough

Little Foot had reflux, cradle cap, dry skin, and was a terrible sleeper...and has the sweetest temperament any child could have.  Unfortunately a month ago, our worst fear was realized, he had an anaphylactic reaction to a tree nut.  I'll share the details of that horrible experience another time, but suffice it to say that we've been emotional wrecks since then.  Seeing your child in a life threatening situation nearly stop breathing does something to your head and emotions that I can't put into words.  The video below begins to explain it a little, though, if you want to peek into my chaotic brain. 

So, today, I shared with my husband that I need to process all of this information, the steps we've already taken, and what we have to do now to keep our son as safe as we can ...and no, although it would be helpful, right now I'm not interested in, here's my blog.

You can follow our ponderings on Facebook as well: