Cerebral Allergies and our continued journey

As you might know, we are on the Journey to find out what exactly Nora is allergic to. Due to the lack of proper research into these "Cerebral Allergies", it is hard to find medical back up for your problems.

The other day I met a lady with a beautiful baby boy. He wasn't crying at the time but had very red cheeks. I asked if he had allergies and we got to talking. I told her and her husband very quickly about Nora and I and what my mom had found out. It seemed like it really struck a chord with them. That a lot of the things they had been trying to cope with really were similar to what we have been going through.

Sometimes I google Cerebral Allergy, Cerebral Allergies etc just to see if there is any new articles or research out there. It seems like each time I do I get more and more results back. I am so thrilled! Maybe someday people won't feel so alone and helpless when their children seem to have a personality disconnect. Can you imagine anything more perplexing to have you child be their normal sweet playful self and then have them suddenly switch to this rage filled, crying, angry mess? Or how about the new mother with her first child who is doing everything to cope with a child that is happy 90% of the time with the normal crying and fussiness but everyonce and a while (or every day if they are unlucky and are very allergic like I was!) their baby just screams and cries and fights and _nothing_ helps?

So anyway, earlier this week I made some Jello and of course it had to be Strawberry (hello red food dye! Yikes!) And of course Nora had some. I know I know. I know about her red food dye allergy so WHY oh WHY did I let her have some? I wanted to see if she was still sensitive and luckily the quarter cup or so that I gave her didn't give her too bad of a reaction. Just a little flushed cheeks and a bit of a saucy attitude. So yup, still sensitive to Red Food Dye. So that means she can have SOME blues and some yellows and greens. But no reds or anything like purple that also have reds in it. Here's the thing- red food dye can be in things that aren't even red! Sometimes they add red food dye to blue (which should make it purple but it changes the hue of the blue if they don't put too much in).

When you have a child with Cerebral allergies you have one of two roads that or a combination of both. You can either make everything at home, or become the worlds most obsessive label reader. It might take you a while to find replacements for all the foods you normally eat, but there is something out there to replace just about every food. Or you can combine them both, but you buy a preprepared anything- check the ingredients.

I have been reading about kids that are being diagnosed as having autism because their reactions to normal stimulus fall in the abnormal range. I mean it's not usually normal for a happy child to scream in rage at someone for saying goodnight to them, right? But I was reading about some mothers who start systematically removing certain foods from their child's diet and some of the symptoms (in some cases all the symptoms) go away.

Of course I realize that things like ADD, ADHD, and Autism are very real and that for kids that have these disorders- a dietary change might not be the magic wand that makes it better, however I wonder how many kids are misdiagnosed because the help and resources just aren't out there for those of us with cerebral allergies?

Good Job, Schools!

The public school system is finally starting to get up to speed on allergies. Especially food allergies. I was speaking with a local school teacher the other day. She was telling me how she motivates her students by providing nutritious snacks once they have earned it through good behavior. Her current snack was sliced apples and caramel dip. I told her how I would have been allergic to everything but the apples when I was a student. She admitted that to give food in the class room she does have to check to see if any of her students have food allergies and to make alternate arrangements if a student is allergic. They also have a "Peanut" table in the cafeteria that students allergic to peanuts have to sit at to avoid an accidental allergic reaction to occur. Some schools in the district are completely peanut free.

I feel very lucky that my allergic reaction was emotional and behavioral. I can't imagine the level of fear that must occur when your breathing becomes difficult or stops because of an allergic reaction. So I am thrilled to hear that the public schools are becoming better about acknowledging the very real danger that simple foods can pose.

Update on Nora:

She is doing fantastic. Her last few skin reactions have been minor and quickly healed. She hasn't had any food reactions for a while now, but we have also been controlling the food in the house pretty strictly. When we need to buy Benedryl or Tylenol we always buy the dye free. We don't buy juices with dye in them and even our cereal is dye free. We need to try oranges again soon since that seemed to be a trigger.

Injuring with Kindness?

Are we injuring our kids with kindness? Are kids being misdiagnosed and loaded with meds to correct issues that are caused by failures in their diets?

When did we become a society that can't say "No"?

No isn't easy. I hate to say no to my daughter. I hate seeing the disappointment in her face. I hate seeing hurt and confusion when it seems like something that other kids are doing- like eating candy canes at the holiday season.

But when did we as a society start saying "No" to things like making a dinner or even pouring a bowl of cereal in the morning? When did we start saying "Yes" to convenience food at every meal?

I recently started part time work at a local grocery store. It is a very busy store and I see hundreds of people each day that I work. One thing that has struck me is how much convenience food is loaded into the carts. I have been working at this job for a month and a half now and I have yet to memorize all the four digit codes for fruits and vegetables. I was expecting to have them memorized in the first week because I was figuring on them coming through my lane much more often. I have been appalled at how much "fake food" is in each cart and how little "real food" is purchased.

I maybe seeming to jump off course here for a second, but have you noticed the rising numbers of children diagnosed with attention deficiet disorder? Hyperactivity? Obesity? Are we seeing a trend of unhealthy children?

I am sure that had my mother not been so determined to find out what was going on with me when my allergies started to surface, that I would have been one of the number of children diagnosed with some sort of personality disorder. Would I have been labeled as ADHD or maybe bi-polar because of the swing from rage to normal rational child? Or perhaps anti-social disorder?

Now, please don't get me wrong. I am not saying that these disorders don't actually exist. And I understand that better medical reporting is bound to cause an upswing in numbers of diagnosis reported each year. However I think the astronomical growth of these types of disorders MUST have something to do with our diet, our environment, our society.

Our society went from wholesome homecooked meals and homestyle cooked meals when dining out to fast food, convienence food laden with dyes, chemicals, and preservatives. Our eating habits have evolved faster than our bodies have learned to cope with new chemicals, fat combinations (Hydrogenation anyone?), and dyes. No wonder our bodies and minds are all messed up.

Current research has shown that a whole foods diet (aka no convienence foods) shows a drastic improvement of attention span with children diagnosed with ADHD.
http://findarticles.com/p/articles/mi_m0ISW/is_243/ai_109946530/

Just some "food" for thought. Are we killing with kindness when we don't say "NO" to the fast food, the convienence food, the food filled with dyes and processed sugars? Are we injuring with kindness when we don't look beyond what the easy diagnosis is? Is it really ADHD, Bi-polar or is it something else like cerebral allergies? Has your doctor ever heard of cerebral allergies? If not do you want a second opinion?

Making Progress

Nora hasn't had an allergic reaction for quite some time now. We keep the household diet pretty clean from pre-made and processed foods. Her one real treat is popcorn chicken from Wal-mart, and luckily they don't cause any sort of reaction.

Nora is lucky to be experiencing a more normal childhood now. It's stressful to always have your emotions swinging out of control and it can damage the bond between child and parent. Constantly being told "No" is frustrating and hurtful to a child when they don't understand why they can't enjoy the same treats as other children. As a parent it is heartbreaking to tell your child no, or grab things out of their hands that well meaning relatives give them. Especially at this young age when children can't cognitively understand "This will make you sick even though everyone else can eat it."

Our diet consists mostly of meat that we cook at home with basic spices, either pan cooked or baked. We do very little breading and haven't fryed anything in over two years. We often serve pasta or rice as a side, and we make lots of stir frys with frozen vegetables. We eat fresh fruit and sometimes add canned fruits that are in water or light syrup. We make our own Chili and occasionally will buy marinara sauce for spaghetti. Another pre-made thing we do buy is Cream of Mushroom soup- instant Stroganoff on busy days! Nora eats Honey Nut Cherrios which is something I couldn't have eaten as a child, and she doesn't react to milk.

However we keep her away from red food dyes, though I am suspecting it is maybe only one or two of the many reds that are out there (that is causing the problem). She has had some red today (red jello) and seems to be doing okay.

One thing we haven't tried for a long time is oranges. I am going to buy a few next pay day and we'll see how she does!

What does a Rage Reaction look like?

A Mild Reaction:


I got a picture of Nora right as she woke up and before the reaction really set in. If you look at her face, you can see how unhappy she is, how red her cheeks are and the white stress marks around her face.

And what she looks like when her cheeks are clear:

Here she was just starting to enter the preliminary rage reaction. She couldn't make up her mind as to what she wanted, but wanted something. She started digging at her skin, so I helped her put some ointment on, which normally she likes but during a rage reaction NOTHING is going to be right. She catapulted into full on hysteria. Trying some passive restriction, holding her comfortably in my arms belly to belly but with my arms placed so she couldn't scratch an gouge was a little helpful. This also had the benefit that I came through this episode without a black eye, bloody nose, bite marks, or scratch marks as has been common in the past. Unfortunatly this did not calm her down much.

After about 30 minutes she had calmed down considerably to the point where I could capture this video clip. Please remember this is after at least 30 minutes of passive restraint when she was getting a hold of herself. Our longest stint has been close to 4 hours.

Notice her attempts to "hide" both behind her arm and behind the bed. I can remember an almost anamalistic feeling of the need to flee during my allergy attacks. I always wanted to get away, especially to a place where I could get my back to the corner and preferably under something as well. Something about the enclosed space helps to allow that non rational part of your brain to cope with the adrenaline pumping through your veins.

It took another 15 minutes after this clip was taken to get her calmed down. Now she is back to her sweet and loving normal disposition.

I know critics will say that she is just a spirited individual with poor discipline who is throwing a "terrible two" tantrum. I do no believe this is the case in the slightest. When she throws a tantrum it is easy to send her to time out, distract her or even ignore her and she will calm down in less than 5 minutes at the worst. With these rage episodes, ignoring her only increases the rage and she is often destructive to possessions as well as to us and herself!

A Call for Stories

Do you have a story of a friend or family member that has suffered from a rage reaction from food allergies? Please feel free to email me with the story and the outcome- has the reactions got any better? Is the person on medication that is helping today?

I think by getting our stories out there we will help those who feel imprisioned by their reactions and perhaps who have not felt the support from their medical community.

Found a Resource

I just sent an email to the Billings Clinic Research department. I hope they will consider running a research trial into the rage reaction caused by food allergies.

I am constantly doing research into this particular reaction as there seems to be a lot of metephoric rolling of eyes in the mainstream medical community when this reaction is mentioned. I found this website: http://www.drrapp.com/ and while I am still reading it- she seems like a wonderful resource!

Please don't feel alone if you or a family member is experiencing an atypical allergic reaction! There are more people experiencing these types of reactions than your would assume!

Great Article from Allergicchild.com

Here is a great article from www.allergicchild.com
http://www.allergicchild.com/food_dye_allergies.htm


Food Dye Intolerance & Allergy
FOOD DYE ALLERGY
Reactions to food dyes are not IgE (true allergic type) reactions, so they are sometimes classified as food intolerances rather than food allergies. There are IgG tests that can determine sensitivity to food dyes, however most Board certified allergists don't find these evaluations helpful. Our own experience is that the IgG testing was valuable, and helped us to steer clear of any product with certain food dyes that caused reactions in our daughter.
In 1960 Congress passed the Color Additive Amendment. This was a federal law that required all the dyes and colorants in food, drugs, or cosmetics be tested for safety before being used in any item sold. All the colorants then in use were tested. Of the nearly 200 substances used back then, very few survived the testing process. Today there are less than 35 dyes approved by the FDA for use in foods, drugs, and cosmetics.
Color Additives Permitted For Direct Addition To Human Food In The United States
Certifiable Colors
Colors Exempt from Certification
FD&C Blue No.1 (Dye and Lake), FD&C Blue No.2 (Dye and Lake), FD&C Green No.3 (Dye and Lake), FD&C Red No.3 (Dye), FD&C Red No.40 (Dye and Lake), FD&C Yellow No.5 (Dye and Lake), FD&C Yellow No.6 (Dye and Lake), Orange B*, Citrus Red No.2*
Annatto extract, B-Apo-8'-carotenal*, Beta-carotene, Beet powder, Canthaxanthin, Caramel color, Carrot oil, Cochineal extract (carmine); Cottonseed flour, toasted partially defatted, cooked; Ferrous gluconate *, Fruit juice, Grape color extract*, Grape skin extract* (enocianina), Paprika, Paprika oleoresin, Riboflavin, Saffron, Titanium dioxide*, Turmeric, Turmeric oleoresin, Vegetable juice
*These food color additives are restricted to specific uses.
**Source: Food & Drug Administration
Certifiable color additives are available for use in food as either "dyes" or "lakes." Dyes dissolve in water and are manufactured as powders, granules, liquids or other special purpose forms. They can be used in beverages, dry mixes, baked goods, confections, dairy products, pet foods and a variety of other products.
Lakes are the water insoluble form of the dye. Lakes are more stable than dyes and are ideal for coloring products containing fats and oils or items lacking sufficient moisture to dissolve dyes. Typical uses include coated tablets, cake and donut mixes, hard candies and chewing gums.
Food dyes are in so many children's foods today that it is difficult to pinpoint this substance. My son ate foods containing food dyes as a toddler because many of the foods were nut free, and therefore a wonderful treat for him!
We began to notice a link, however, between his eczema flaring and his ingestion of food dyes. He seems to get eczema from all food dyes. However, some children may only react to one, for example Red #40. There are children who will have anaphylactic reactions to food dyes, so the allergy is potentially serious. Children may even be prescribed epinephrine for this!
It is difficult to determine which food dye is causing your child trouble because there are no specific allergy tests for food dyes. However, I would encourage an IgG testing if you believe your child is reacting to food dyes. Our allergist has told us that aspirin and yellow #5 (tartrazine) allergies seem to cross react.
Candy such as gummy bears, Skittles, Popsicles, ice creams and lollipops all have food dye. There is also food dye in many cheeses, crackers and breads. The key is to read the label! Some labels may just say artificial color and flavors, which is a catch all phrase.
We have yet to determine if yellow food dyes are more lethal to our son than red food dyes. Some families have gotten this specific, and know which dyes to stay away from.
We've also found problems with food dyes being in liquid antibiotics. Talk with you pharmacist and physician before prescribing antibiotics to see which one is best for your child. My son is able to swallow pills, and we therefore are able to circumvent the liquid antibiotic route. I have heard that Amoxicillin does come in a dye-free form; however it may be necessary to obtain this from a compounding pharmacy.
Also, both Benadryl® and Motrin® come in dye-free formulas, as do many other over-the-counter medications.
Many lotions and shampoos also have food dyes in them. This doesn't seem to bother my son. He seems to react only to foods that are ingested. Other children may also react to topical solutions, however.
Because red dye #2 is believed to be carcinogenic, it hasn't been used in foods for decades. However, many of the dyes not allowed in foods can be in cosmetics and drugs. Cochineal dye and its close relative, carmine, are now being reconsidered as safe food dyes. These food dyes have received much press given that they are derived from crushed beetle carcasses. They have been around for hundreds of years, yet are causing anaphylaxis in some people.
Annatto is a food coloring derived from the seed of the Bixa Orella tree. The coloring is a yellow/orange and it is used extensively in crackers, cookies and bakery goods. My son also experiences eczema after eating products with Annatto.
Yellow food dye #5 (tartrazine) has been implicated in allergic reactions also and triggering asthma episodes. There has been some research by the FDA to also link it to thyroid tumors. There are also Blue food dyes such as Brilliant Blue #2, which have been linked to allergic responses.
Anecdotal evidence from parents has linked food dyes to hyperactivity in children and ADD symptoms. Removing food dyes from the child's diet creates an entirely different kid – one that can focus and sit still.
We've learned that eating foods as close to the source of origination is best. Therefore, food dyes aren't a part of our son's diet. Meats, fruits and vegetables don't naturally contain food dyes!
Here is an article related to food dyes:
Description
URL
Popsicle-induced anaphylaxis due to carmine dye allergy
www.med.umich.edu/intmed/allergy/carmine.htm
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Site Last Modified 04/06/09

Denial

So to continue our story:



After our Christmas 2008 vacation at my parent's place, I think I was a bit in denial. I didn't want my daughter to have to go through what I had gone through as a kid. My allergies defined my childhood. A good portion of my childhood memories revolve around me having to avoid foods, or trying to sneak them past my mom because I wanted so badly to be like the other kids and eat all the wrong things.



So even though I had empirical evidence that Nora was starting to show signs of allergies, I hoped that it would be only something small. Something easy to avoid. January passed and Nora only had occasional outbreaks of the red cheeked rage reaction which was easily enough controlled with Dye-Free Benedryl.



Why oh Why does Benedryl only make Dye Free in Liquid? Nora LOVES those chewable tablets the the dye in them just makes the reaction worse until the Benedryl really kicks in.



Well, in early February Nora broke out in a rash that looked like Scarlet Fever. The doctor tested her and said that it was most likely just a fever rash and to let it run it's course. Her whole body was raw and red and she peeled for 2 weeks after the rash calmed down. Then the itching started. Within two weeks she had obvious areas of her body that were more itchy that the rest. The base of the neck, her forearms, her stomach and legs. We took her back to the doctor and were again told to let the virus run it's course. Another two weeks passed and she was now waking up in the middle of the night. The final straw was the night she woke up screaming in pain, trying to scratch the skin off her body. Nothing we could do made her feel any better. We rushed her to the ER where she got steroids and antihistamine administered.

The steroids really helped her skin and she was seeming to get better even after the steroids got better. When we visited my mom's house she broke out again and of course through all this time we were dealing with food allergies that were causing a rage reaction.

We changed laundry detergent, and tried eliminating triggers in her diet, but we haven't figured out what her triggers are except for food dyes and preservatives.

This past week we got an emergency appointment with an Allergist. He had a great bedside manner, and they tested her for allergies to Eggs, Milk, Wheat, Soy, and Corn. They also tested her for allergies to Cats, Dogs and one mold. Her skin was too raw for more testing. Luckily she tested negative for all those.

The Allergist asserted that dye allergies are extremely rare, but as my mom and I put it- Because they exist- someone has them. It is our unfortunate selves that we happen to be in that percentage that does have them.

We had to stand up to what we know to be true- that we have seen Nora go in less than 20 minutes from happy and cheerful with pale peaches and cream complexion to screaming-fit-throwing with fire engine red cheeks. He didn't say much about the rage reaction and how common that is, but he did mention that acting out might be because allergies were causing gastric distress. So my mom and I both had to describe in detail how my allergy attacks progressed and how they felt for me. He didn't say much after that.

So my advise is- if you or someone you love is suffering from an atypical reaction, be sure to let your allergist know. And if they have a hard time believing that you might be one of the small percentage out there- stand up for yourself!

Now our journey continues as we are going to be journaling Nora's food exposures and her reactions to try to narrow down exactly what is causing the red-cheeked-rage reaction.

The Start

Hi Folks,

My name is Alee and I have suffered from allergies since I was about 18 months old. While I am in no way an expert or a medical professional, my goal with this blog is to share my experiences as I remember them, and share with you my daughter's experience as she is following in my foot steps.

I would also like to introduce you to my mom, Sage, who will be writing when she has moments to spare to share her experiences in coping with an allergic child.

Most people, when asked to think of allergies think of things like hay fever, allergy to dogs or cats, or even food allergies. When asked what they would say an allergic reaction is they usually say itchy and watery eyes or problems breathing.

My sister has horrible environmental allergies and is very "classic" in her symptoms of itchy skin, watery eyes, and sneezing. Her allergies have progressed over the years to the point where she is unable to eat certain foods during allergy season because they introduce the allergens into her system.

I however had an atypical reaction to my food allergies. First of all, I was allergic to what felt like everything under the sun. I was allergic to dairy and dairy derivatives in all forms, citrus, berries, melons, barley, some wheat, tree nuts, peanuts, corn, the sun if I was out in it too long, food dyes and preservatives just to name a few. My reaction when I did eat any of these food categories as for my face to flush as if I had a high fever, white stress marks to form around my nose and mouth (Along the Smile lines), and for my impulse/anger control to vanish. My mom and I call it the rage reaction.

As a baby, during an allergic reaction I would lose all sense of danger or self preservation. I would violently throw myself backwards and writhe to get out of my parent's grasp. I remember lots of screaming and crying on my part in pure unadulterated rage.

As a young child I remember my sister who was baby sitting me at the time, wishing me a good night as I went to bed. I don't remember what I had eaten that was giving me the reaction, but I felt like she had been snide in saying a simple good night. I went into my room and punched the wall, and generally threw a tantrum of pure anger. I clearly remember how sharp my anger was and in my head there was no rationality left.

The level of my reaction would vary depending on what I ate (how sensitive I was to it), how much I ate, and how old I was. I was lucky. I got my allergies under control for the most part by the time I was about 13. It took until I was in my early 20's for them to be under really good control, but I still see my face flush at times and if I am tired I get overly sensitive and snappish even still.

Around the time I was in 5th or 6th grade I started to recognize that hot burning feeling inside my head (emotional not physical) that mean the rage of an allergic reaction was coming on. I started to learn to clamp down on my reactions- to really think about what I was saying before I said it- to monitor how I said things and my body language. It took a lot of practice and often times I would seclude myself in my room with a book to ride out the storm.

My daughter didn't show any signs of allergies until around 18 months. She had eaten candy canes before- mostly as a treat from the ladies at the bank. She had never had a reaction and stayed her joyful easy-going self. I had several friends remark on how easy of a child she was and no trouble when I had to have them watch her. She slept through the night within the first 2 weeks of being born and had great nap and sleep schedules well established.

In December of 2008, I started noticing her behavior shifting towards more aggression. She would pinch and bite at her cousins. My husband and I stayed consistent with our parenting ideals and tried to help her through this phase. Then one night, as my parents, Nora and I were going to drive around town to look at the Christmas lights we decided to give her a treat of a candy cane. Big Mistake. Huge. We were gone for less than 20 minutes and decided to stop at the video store on the way home.

In the lights of the store we could see her cheeks were fire engine red and she was throwing herself around on the floor screaming and crying for no apparent reason.

We quit giving her anything with red food dye in it, which is hard if you use any sort of processed foods at all.

By eliminating that trigger, she calmed back down after a dose of Benedryl, and the rest of the vacation was relatively peaceful with only normal episodes that one could expect of a 2 year old.

More later...please stay tuned! Feel free to leave comments! We would love to hear from others who are on the same journey as us!