I had anticipated a relaxed and enjoyable summer, but it has been anything but that. In fact, I’ve added a few more gray hairs to my growing collection. Our summer started off with a trip to my pediatrician’s office with my oldest daughter who had come down with Fifth’s disease, a nasty rash that she probably picked up on a recent trip to NYC. While there, I told my doctor that my daughter’s hair had been falling out (and I’m talking about a lot of hair!) for quite some time, and I didn’t know what was causing it. He then asked me whether she had been ill with high fever. Yes, in fact, she had been. She was sick with a relatively high fever (102 – 103 degree range) for seven days back in April. My pediatrician then insisted that I get her to a pediatric dermatologist as soon as possible since it was likely that all of her hair was going to fall out, and it was questionable as to whether it would grow back. He said she would need to have a hair follicle biopsy. I had never heard of such a thing, and I couldn’t believe it was as drastic as he was predicting. As soon as I got home, I started calling pediatric dermatologists. We finally got her into see one in St. Louis, and he took one look at her and told me that we had nothing to worry about. He said it was quite normal to experience hair loss anytime the body has been under stress, like fighting an illness or having an operation, for example. The hair loss could last up to six months, but he reassured me that she wasn’t going to go bald. What a relief.
Nearly two weeks later, I took my three-year-old in to see the doctor (not the same one that I had seen with my oldest) because I was concerned that she might have strep. Turns out she didn’t, but the doc told me that I needed to get her in to see an ear, nose and throat doctor. She was concerned that her tonsils were enlarged and asymmetrical. She said it could be nothing, or it could be something more serious. I couldn’t leave well enough alone, so when I got home I did some research on asymmetrical tonsils. Turns out asymmetrical tonsils can be a sign of lymphoma. I got her in to see the ENT doc who said she didn’t think they looked problematic at this point. I’ll have to have her checked again in several months.
Meanwhile, we’ve sold our house, and we have until August 1st to move out. That leaves me about a week to find a new one. Needless to say, we’ve got a lot on our plate right now, so I’m putting my blog on hold until we can get moved and re-settled. Please feel free to send me your thoughts and notes on topics that you’re interested in, and I’ll start writing again this fall.
In the meantime, have a safe and healthy summer.
Take Care –
June 27, 200
FAAN held one of its conferences in Chicago last weekend. I had never gone before, but I figured it would be a good opportunity for me to go and see what it was all about. I would say about 200 people attended, and what struck me the most was that there was very little racial diversity. Most attendees looked to be of European descent. I wondered at one point whether we were all somehow related to one another. Dr. Scott Sicherer from Mt. Sinai Medical Center in New York spoke about a number of different issues. I’ve included a summary below of some of the things I learned at the conference.
As we all know, the diagnosis of food allergies is not a simple task— Dr. Sicherer says the most helpful information they have on an allergic individual is his/her history. This history, combined with the results of both skin testing and blood testing, will help them determine a person’s likelihood of reaction. Just knowing this has prompted me to get the notebooks back out and continue to right things down.
Dr. Sicherer walked us through perhaps 10 to 12 different case studies of individuals who had food allergies and who were experiencing allergic reactions. It was up to the audience to decide how to treat them, either with anti-histamine, epi-pen or something else. I found this exercise to be most helpful because I now have more confidence in my ability to make the right choice after going through this exercise. He also included an example when a child was turning blue. Turns out the child was choking and not having an allergic reaction. As he said, it doesn’t always have to be an allergic reaction.
Lack of Vitamin D? — Dr. Sicherer showed us a map of the U.S. which highlighted those states with the most epi-pen prescriptions. Turns out the states with the highest number of prescriptions are in the northern parts of our country. It was striking to see the difference between the north and south sections of the country. Sicherer says they’re looking into the possibility of a vitamin D deficiency in allergic kids.
Cooking— Did you know that when you cooked a food, the food protein is found in the steam that comes off of it. Dr. Sicherer talked about an instance when they tested this, and the person who was sitting nearby started to react to the food after inhaling the steam.
And finally, the epi-pen party—Denise Bunning, who I interviewed a few weeks ago for this blog, gave us some ideas about how to live with food allergies. Her presentation was quite helpful, and I loved her epi-pen party idea. She suggested that we keep our expired epi-pens and use them on fruit. In the past, she has invited her son’s friends over to an epi-pen party where they would all take turns using an epi-pen on an orange or grapefruit. I did not know this, but the natural inclination is to pull the epi-pen out of the thigh as soon as it goes in instead of waiting the required ten seconds before pulling it out. I heard from several people that to practice with the real deal is much more effective than the epi trainers. It’s obviously a great way to train friends, relatives and teachers as well.
All in all, I found the conference to be quite helpful. I would highly recommend it. For those families who are concerned about the cost of the conference, there is scholarship money available to cover the cost.
That’s it for now. Have a great week.
Here’s to safe eating!
May 14, 2008
I recently attended the Organic Food Show in Chicago and was quite impressed by the number of organic food companies that were there. This show is for retailers only and not open to the general public. While we don’t carry food products on our website, I thought it would be a great opportunity to go and actually see what was available. Well, it took me nearly six hours just to get through it all. I also had the chance to speak directly to food manufacturers about using alternative (non-allergenic) ingredients in their products.
While sugar cane is the predominant sweetener used in most organic products, there seems to be more interest in using alternative sweeteners. That’s great news for those of us who need to avoid cane sugar. I found a number of companies that have started using agave sweetener, including one company, Organicville, that makes ketchup with the sweetener. It was excellent. You can find them at Organicville.
There were a number of organic baby food companies represented. After tasting three different brands, my clear favorite was Maddy’s Organic Meals. Maddy’s is a new company that uses only the freshest/ripest ingredients to make their baby purees. None of their produce is frozen before the pureeing process, and their food combinations were quite clever. You can find them at Maddy’s Organic Meals. As a parent of an allergic child, I look for products like these that are packed with flavor and only contain a few ingredients.
Below I’ve listed some of my additional finds that may be helpful.
From Nature With Love
If you have an allergic child who doesn’t tolerate lotions well, and you’re not quite certain what they’re reacting to, this is the place for you. At From Nature With Love, you can actually purchase the individual ingredients that are used to make personal care products. I was able to pick up a small container of shea butter to try out on my daughter. So far, it doesn’t seem to be causing any reactions. They do sell direct to the consumer.
This is a new Chicago-based company with a great cracker made from various grains. They’ve actually got three different types to choose from. While two out of three varieties come with nuts, they’ve got separate trays they can use to make nut-free ones. The crackers are organic, wheat-free, sugar-free, dairy free, and they taste good too.
If you’re looking for candy that doesn’t contain dyes or other allergens, this is the place for you. The folks at Pure Fun use both brown rice syrup and cane sugar to sweeten their organic candies which come in all sorts of great flavors. My daughters loved the samples that I brought home for them. Checkout their website when you’ve got a moment. It’s beautiful, and my daughters loved the sing-a-long songs in the activities section.
Black Wing Meats
If you’re on a rotational diet or looking for other types of organic game meat, you should try Black Wing meats. They carry organic ostrich, bison, buffalo, elk and quail meats to name a few. I tried the ostrich meat which was quite good. They sell direct to consumers, and their prices are slightly above wholesale. When I found them, I told them that I was on a rotational diet, and they knew immediately what I was talking about. It turns out they cater to those with special dietary needs. In addition, they carry a dog and cat non-allergy pet formula. The owner told me that once an allergic pet is on this formula for two weeks, the allergies disappear.
Buds For Baby
This is an Australian company with a nice line of skin care products for babies/kids. I was interested most in their sunscreen and first aid lotions. Both of these products contain few ingredients, all natural and all organic, of course. They’ve apparently seen good results when using their first aid lotion on kids with eczema. The only problem I’ve encountered is trying to order them. A company rep told me that the line was now available in California, but I wasn’t able to confirm this information on their website. I’ve sent off an email, we’ll see what their response is.
One last note, I couldn’t believe the number of flavored water and smoothie companies. If you’re thinking about starting your own flavored water or smoothie company, you may want to think twice. The market is saturated.
Here’s to good eating. Have a great week.
May 6, 2008
I had hoped to have this posting up much earlier, but I decided to add audio to my blog postings. Needless to say, I’ve had a bit of a learning curve trying to get it all figured out. My hope is that I’ll be able to do more phone interviews with those in the allergy field. While I may not use the entire interview, I will try to post the most relevant and interesting information.
In the meantime, it’s hard to believe that May is right around the corner, and while most of us are planning our summer vacations, there are those who are planning for school in the fall. Denise Bunning, the mother of two boys with severe food allergies and the founder of Illinois’ first allergy support group Mocha, is one of those who is making plans and preparations for next year. She offers this advice to parents who may have children entering school for the first time this fall.
(Click on the link for audio.)
Denise refers to a “504 Plan” which is a plan developed to meet the requirements of a federal law that prohibits discrimination against people with special needs. Usually the parents of the allergic child will meet with school administrators and teachers to come up with a plan that addresses the needs of the student.
In case you haven’t heard…..
WhiteWave Foods Company is voluntarily recalling some of its bottled, chocolate flavor Silk Soymilk because of undeclared milk protein. The recall includes only 11-ounce single serve plastic bottles. The individual bottles are printed with a “use by” date of May 7, 2008 and a UPC Code of 2529360028. For additional information, contact the company at 800-587-2259.
This next story is a parent’s worst nightmare. An eighth-grade boy in Kentucky is accused of putting peanut butter cookie crumbs in the lunchbox of a classmate with a severe peanut allergy. Fortunately, the allergic student didn’t eat the cookies. The boy will appear in juvenile court on felony charges of wanton endangerment.
This is such a disturbing story, but we clearly need to be doing more to teach our kids about tolerance!
One last note, please let me know if you have difficulty downloading the audio. Hope this latest addition is helpful.
April 25, 2008
My daughters and I were out running errands the other night when I decided to stop by McDonalds to pick up dinner for my 6-year-old. I was feeling brave about Elyse’s food allergies, so I decided to order some French fries for her. I figured I could give her a few to see how well she tolerated them. I knew they had some wheat in them, but I certainly didn’t think there would be dairy in them. When I asked the woman who was taking my order, she reassured me that they didn’t contain dairy. Needless to say, Elyse loved her fries. Who doesn’t, right? I didn’t give her many because I wanted to get home to double-check the ingredients on McDonald’s website. Well, it turns out that the French fries do contain both wheat and hydrolyzed milk. I was shocked. I was even more shocked when Elyse didn’t seem to have a reaction to them. Perhaps I had given her such a small amount of fries that the amount she consumed was miniscule. Her milk allergy is off the charts, so I can’t explain why we didn’t see any kind of reaction. We took a chance and got off lucky.
I’m now in the third week of my rotation diet. I wasn’t hungry at all the first week or so, but lately I seem to be hungry all the time. The diet is pretty boring, but I’ve not had a lot of time to experiment and be creative with the menu. I certainly feel better physically, and I’ve noticed a lessening of my allergy symptoms. I received my order from specialfoods.com last week which included milo muffins, cassava bagels and white sweet potato bread. Upon my initial taste test, I was not too impressed, but after I warmed them up, they tasted much better. My favorite so far is the white sweet potato bread. Three weeks down, another five weeks to go before I can try real food again.
“You need to be on a rotation diet.” It’s a phrase I’ve heard numerous times from various allergists and nutritionists. I’ve tried, rather unsuccessfully, to get my 3-year-old to go along with such a program, but I’ve not been able to convince her that she needs to eat a particular food because it’s day 3 of her rotation diet. At this stage of the game, she knows what she likes, and she’s leery of trying anything new.
I tend to be a creature of habit like her. I enjoy eating the same foods everyday and drinking my soy latte every morning. Even the experts, like Dr. Mike Roizen, well-known author and regular on Oprah, encourage people to eat the same breakfast and lunch everyday (as long as it’s healthy) and then vary the evening meals. This approach obviously doesn’t work for those with food allergies.
Well, my allergies kicked into high gear last week, thanks to a bit of additional stress. My eyes started to swell and my face turned a nice, bright red. It’s not the first time this has happened, but the third. The bizarre thing about these “flare-ups” is that it only happens on my face. Even the doctors can’t explain this one. In the past, I’ve had to be on steroids for several months during each episode. Every time I tried to go off the meds, my face would swell back up—a most frustrating situation. This time, I decided that steroids aren’t an option. I’ve opted to take the advice of the experts and go on the elimination/rotation diet—hard-core. For the next two months, this means no rice, soy, wheat, coffee or the additional 32 other foods that are on my list. Yes, I think my list of food intolerances is now equal to or even longer than my daughter’s.
Our doctor gave me a four day rotation diet which I could use as our guide. I must say there were a lot of foods on the list that I hadn’t even heard of. After much searching on the Internet, I found an online store, specialfoods.com, where I could order some of the more unusual tuber flours, like cassava and malanga flours, for example. They even have bagels and breads made from their specialty flours. I’m still waiting for them to arrive, so the verdict is still out on what they’ll actually taste like. I also liked the fact that they had a number of different lip balms and lotions that had minimal products in them. I ordered a couple to try on Elyse. I also found a great book, “The Ultimate Food Allergy Cookbook and Survival Guide”, by Nicolette M. Dumke. It’s got everything in it that one needs for a rotation diet. I like the fact that it has a food classification system in the back.
I’m now into day 4 of the diet, and I can say that it does seem to be working. My face looks normal but with a bit of redness, and my eyes are no longer swollen. The good news is that I’ve not had to go on steroids. I’ve tried getting Elyse to go on the diet again with me, but after tasting my buckwheat cereal, she wasn’t convinced. It’s quite time consuming and somewhat pricey, but if it means I’ll be able to eat normally again one day, it will be well worth it.
Meanwhile, the count is on…56 days until my next cup of coffee.
March 31, 2008
Happy Easter (if it’s a holiday you celebrate). If not, Happy Spring. I have to believe that Spring is just around the corner. It’s been a long, long winter. We had planned to be spending our break up in the Chicago area, but to no avail. After our round with the stomach flu last week, we all ended up coming down with colds and coughs this week. We just can’t seem to rid ourselves of viruses this season. Elyse—the allergic one—started complaining about ear pain this week, so I took her to see our naturopath. Fortunately, they weren’t infected. As I’ve mentioned previously, we use a botanical supplement (Elderberry Syrup) to keep her as healthy as possible since she’s allergic to nearly every antibiotic on the market. We also got the results back on her recent allergy tests. They were as expected. Her milk allergy is off the charts. Even the naturopath said that she rarely saw people with milk allergies quite so bad. It’s really hard to believe that something like milk could be so life-threatening for her. I almost think it’s worse than a nut allergy. I can’t expect schools, for example, to do away with dairy because of the danger. Home schooling is looking more and more likely.
In allergy news, here’s some interesting stuff I thought I would share with you.
CNN is looking for families who have children with autism. They’re inviting people to share their stories with them. Here’s what they’re looking for….
“Are you or is someone you love living with autism? We want to hear your story. How does this condition affect your life, as well your family’s? Share what life is like on a typical day. Turn on your camera and record video of yourself speaking about your experiences, and give us a glimpse of your daily routine. Have you found any unexpected silver linings? Send photos and videos that help tell the story of what it’s like to have autism”
To submit your story to CNN via video, audio or text format, you’ll need to copy and paste the following link: http://audience.ireport.com/services/cnn/register.doquick=true&pid=cnn.ireport&requestedpage=http%3A%2F%2Fbeta.ireport.com%2Fupload%2F2678.topic
I think the story is planned for early April.
Researchers at Mt. Sinai Medical Center are looking for participants for a new study on a special blend of Chinese herbs. Researchers are hoping to learn whether the herbs will prevent an anaphylactic reaction in people with allergies to nuts, tree nuts, fish or shellfish. For more information about the study, contact Sally Noone, at the Mount Sinai School of Medicine, at 212-241-0336.
As an aside, I’ve been taking Chinese herbs for my allergies for quite some time. There was a time when I couldn’t get off of steroids because I kept having allergy flare-ups. Once I started the Chinese herbs and acupuncture, I was able to get off the meds. I’m a believer, and I’m hoping we see something positive come out of this study.
All My Best—
March 21, 2008
Happy St. Pat’s Day. I had hoped to have my posting up on Friday, but we were hit with round two of the flu. Both my 6-year-old daughter and I ended up with a stomach bug this time. Needless to say, it was not pleasant. My 3-year-old, highly allergic child shows no signs of it (although I don’t want to jinx myself). Here again, I’ve got her on the Elderberry syrup and Phytoguard supplements. Can you imagine how much healthier children would be if they were given this stuff on a daily basis. The only problem with the Elderberry syrup is its taste. I’ve tried getting my oldest to take it, but she has refused. My pediatrician has suggested that I give her honey, chocolate sauce or “pea” butter to coat her tongue, and then she won’t taste it quite so much. I’m also wondering if it’s something that could be baked in muffins, for example. I’m not sure if the heat would destroy some of its immune-boosting properties. My naturopath was uncertain as well. If anyone one knows the answer to this, please let us know.
Here are some other noteworthy notes in the allergy world.
Medic Alert and the Food Allergy Initiative are currently offering free Medic Alert memberships to low-income families with food allergies. The memberships are being funded by grant money, so once the money is gone so are the free memberships.
You can find out more by visiting www.medicalert.org/FAI/FAI.aspx
Children’s Memorial Hospital in Chicago is inviting families affected by food allergies to fill out an online survey. The survey takes about 15 minutes to complete. They only need about 300 more people to fill out the survey until they’ve reached their goal of 3000 respondents. The information collected is expected to be released this spring.
Dr. Phil is planning to do a show on food allergies. Producers there are inviting people affected by food allergies to email them at the following link.
Within the past couple of weeks, we’ve made the decision to try to send my three-year-old daughter to the Montessori School here in Champaign-Urbana. I was hopeful that, with some cooperation from the school, she might be able to attend in the fall. We’ve had her there two times within the past few weeks, and each time she’s ended up having a reaction which required benadryl. My optimism is fading fast. If all else fails, I’ll keep her home and continue to home school her. Since I’ve got an older child who doesn’t have food issues and attends school, I really wanted to provide my youngest with the same experience. I would love to hear from anyone in a similar situation in which one child is home schooled and the other is not.
Speaking of schools, I did set up a Montessori classroom in the basement of our home last fall. We have a directress who comes here twice a week to work with her and another little boy who is being home schooled. I’ve had a number of friends ask me why I don’t open a school for children with severe allergies. In all honesty, I don’t think there would be much demand for it here. I think once we move back to the Chicago area (if our house ever sells), it might be an option. Please send your thoughts and feedback. Is an allergen free school a good idea? Especially for preschool – early elementary years?
I got an email last week from Jennifer who lives in northern Illinois. She had read my previous blog entries and had this comment to offer:
“I know the point of your blog is to help everyone by sharing the more natural remedies and info out there. But coming from someone who has been
organic, wheat free, white sugar free, and vegetarian and has avoided western medicine (whenever possible) for 20 years, I have learned, through this (her own personal experience with eczema & allergies), that sometimes natural is not the answer.”
I couldn’t agree more with Jennifer. There are times when western medicine is the only solution. Since my daughter is allergic to nearly every antibiotic on the market, we don’t have a lot of options when it comes to treating her. She’s now even allergic to the steroid cream that the doctors prescribed for her. From our experience, I can say we’ve seen more results working with our naturopath than with our more traditional doctors. I think we have to be open to whatever works for our child.
I think the solution lies in a blending of western and homeopathic medicines. A nutritionist at Children’s Memorial Hospital in Chicago told me not long ago that children in the ICU unit are now being given probiotics with their antibiotics. They’ve found that it cuts down on the meds side effects, such as diarrhea. I found it truly encouraging.
My hope is that we’ll see more of this down the road.
On a final note, I’ve come across a company that has outstanding allergy-free mixes. The company is called the Cravings Place, and it was started by chef Juli Walton who trained at the Culinary Institute of America in New York. Her mixes are gluten-free, wheat free, nut free, egg free, dairy free and bean free. We especially like her pancake & waffle mix, the chocolate chunk cookie mix and the ooey gooey chocolate chewy brownie mix. They’re truly to die for.
Until next week—
March 7, 2008
My name is Dodie and my 5 1/2 yr. old son has dealt with Severe Eczema and Allergies(Food and Environmental) since he was 3 weeks old. At age 3 He was also diagnosed with Asthma. He had his first round of allergy testing at 15 months because of the severity of his eczema. he was tested a second round at 18 months. It seemed that he was allergic to everything he looked at. ... My son has started taking probiotics to help his immune system and it has helped tremendously. So much that we only give him singular once a day and nothing else.
He is in Kindergarten and is now starting to get self conscious about having his hands bandaged all the time. He wears pants everyday most of the time in summer as well so no one sees his legs. Please let me know if
you have can help in any way. Whatever it is it must be fragrance free no nut oils of any kind or tree oils, no avocado, milk, soy, wheat or egg products. Those are the worse allergies that cause him anaphalactic reactions.
Thank you and hope to hear from you soon.
Thanks for writing. Your son sounds a lot like my daughter. We’ve
struggled with the skin issue for a long time, and my daughter now
reacts to both vaseline and steroid cream. When she was younger
though I used olive and avocado oils on her skin which helped.
Recently however she’s been drinking “Ultra-Care for Kids” by
Metagenics. It’s full of lots of good things, including the oils
that her body needs (it tastes good, and it’s rice based). I’ve
noticed that her skin is much softer now than ever, so we’re
essentially softening her skin from the inside out. Right now, I
don’t have anything that I can use on her skin because she’s reacting
to it all, including our latest attempt with straight aloe. I’ve
posed this question to my naturopath to see if she has any other
suggestions. Once I hear back from her, I’ll let you know. I’ve
always turned to the oils in my kitchen though to see if there was
anything that we could use. As I’m sure you do, I always start out
with a small amount on her arm or wrist to see whether she’s going to
react to it. If she doesn’t, I’ll usually try it.
I’m glad to hear that the probiotics are working. We had been using
chewable probiotics, but it wasn’t enough. My naturopath (ND)
recommended a probiotic powder which has a much higher concentration
of probiotics in it. I mix it in with her drinks. We’ve noticed
that it has helped a lot. I do wish more traditionally-trained
doctors were in tune with the role of the gut in all of this.
I just heard back from my naturopath, and she has suggested that I try Alba. According to her, it’s a very emollient body lotion that you can buy at Whole Foods.