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!