About Provocation/Neutralization Treatment

Here is a video that documents and shows some of the symptoms and details about Provocation/Neutralization treatment, the treatment we do for Kaylee to correct her "allergies" to chemicals, foods, molds, and other allergens. I cannot stress enough how much this has changed our lives. Kaylee is happier and feels better because of this treatment instantly .

Some of our Special Diet Staples

Since Kaylee is on such a limited diet and has so many food intolerances, and it's so difficult to find foods that she can have without symptoms, I thought I would share some of the products we would be hard to live without, for those who would like some pointers about which foods to feed their allergic child.

Corn Thins are like rice cakes only much thinner, which I think makes it tastier, and Kaylee loves them as a bread substitute for her "PB" and Jelly sandwiches. I think these taste a lot less "cardboard" like than regular rice cakes.

Believe it or not, regular store bought tater tots and fries have soy and lots of preservatives in them. Kaylee could not tolerate them, so I was ecstatic when I found these at Whole Foods Market. The kids love spelling out words with their Alphatots! :)

I once saw a You-Tube video presentation of an autism-mom doing GF/CF cooking and she ground up these Veggie-Chips and used them as a coating for fried chicken nuggets. I have been doing this ever since and it is a delicious gluten free coating! I use a food processor and pulverize a bunch of bags every once in a while and use them in place of bread crumbs in any recipe!

I love to use this when frying chicken nuggets or cooking anything or in place of shortening in any recipe (such as cookies or homemade frosting). It works just as well as Crisco but its much more healthy for you because it is trans fat free.

This is ghee from Purity Farms as a butter substitute. Its actually butter with all of the milk proteins extracted. I assure you its totally safe and good for people who cannot tolerate soy or milk, but dont want to use margarine which is full of trans fats. I actually get mine from Wal-Mart!

I love love love this product! This is our peanut butter substitute, and it tastes really good! A great thing for a picky 4 year old eater, its for those times you just want to make a sandwich and not cook something (which I feel like I do all of the time). Kaylee loves to dip apple slices in it. I also make really yummy Sunbutter cookies (just like peanut butter cookies! and they are GF/CF!) You can find this at Walmart too!

Another real blessing are these allergen-free chocolate chips by Enjoy Life. They are gluten free, dairy free, and soy free. You can't find chocolate chips anywhere without those ingredients. And who doesn't like chocolate? I make Kaylee chocolate chip GF muffins and the whole family loves them! Even though they are GF!

Here's to good eatin' even if you are on a restricted allergy diet!

Update Time!

I better get another post in for this month! Otherwise I will have only one for July!

I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.

We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)

If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!

Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.

What a far cry from a year ago.

I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.

I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.

And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.

Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!

Why we think this allergy treatment will help Kaylee

The immune system is an extremely underappreciated entity. We take this very complex system for granted everyday, until it fails us and doesn't perform the way we expect it to. Our immune systems are so powerful it can kill through a hyperresponse (anaphylaxis) or a hyporesponse (e.g. AIDS). There is a spectrum of reactions ranging in between these responses. Kaylee suffers from (and so do most, if not all ASD kids) both sides of reactions. She is hyporesponsive to viruses, bacteria, and yeasts and hyperresponsive to everything else. This is the earmark of immune system dysfunction.

When Kaylee was tested for what she would react to, we were surprised that she reacted to almost everything, some things more than others. This is significant because it gives us a clue into how her immune system is functioning (or better said dysfunctioning) at this time. Her mild reactions to everything shows us that her immune system is in overdrive. So when I say "allergies" for Kaylee's reaction, it's because I don't have a better term. Kaylee is reacting to everything but it isn't always an allergenic response: it's an inflammatory one.

These allergies aren't just a nuisance for Kaylee, they are causing her body to be in a chronic inflammatory state (and by the way...yeast loves inflammation). Now her immune system doesn't know what it's doing anymore, its just firing off everywhere at everything. This makes for a not-so-happy-Kaylee. I am guessing she's not feeling so well. She's extra sleepy, crabby, defiant, and more when like most kids are when they don't feel their best.

So why didn't I just use antihistamines for her allergies? I tried and they didn't work. The antihistamine drugs only took the edge off because they only eliminate one chemical pathway in this inflammatory process. In an immune system reaction there are so many pathways that are triggered by chemical messengers, such as histamines, prostaglandins, cytokines (there are lots and lots of these!), and many others. In other words, the reaction is still occuring, and the immune system is still "cued up". Neutralization treatment is the best one because it stops the whole reaction in it's tracks, therefore completely halting the inflammatory cycle.

What I love about this allergy testing is that there is no disputing that your child reacts to something; this cannot be said about blood tests. Sometimes our kids' bloodwork will not show any antibodies to an antigen, but they will still be reactive to it. P/N treatment not only accurately identifies a person's triggers, but it also gives you a way to reverse them immediately, without drugs. I think that is the best outcome I can imagine.

With all of this said, we are hoping to press the "reset button" on Kaylee's immune system by cooling it down to where it doesn't react to everything. Eventually, we hope that Kaylee will soon stop reacting on her own, without her bi-weekly injections.

*These are the treatment vials with the antigens we inject Kaylee with every four days*

What is this new allergy treatment? Part 1

I have been researching for many weeks now, trying to understand the ins and outs of this treatment Kaylee is receiving so that I can share with others what is really happening maybe a little bit about how it is working.

First, let me say what this is not: this is not what a typical allergist does. They will laugh you out of their office if you ask them about Provocation/Neutralization technique. In fact I called allergists in my HMO network and I was laughed at by one receptionist, but most didn't know what I was talking about. Only doctors from the American Academy of Environmental Medicine actually perform this testing. A most famous doctor that did this is Dr. Doris Rapp.

I wouldn't have imagined I would ever try this because it seemed too good to be true. But the director at the NNY clinic recommended it to me because she has done this with her daughter, and other ASD kids at their clinic who present with the more complicated allergy issues ( Kaylee falls into that most difficult to treat subset of children!)

This is what the testing is like:

First, the nurse injects a diluted substance of whatever antigen we are testing just under the skin (intradermally). This forms a flattened bump that is measured immediately.

In a non-reactive person, the bump either stays the same size or shrinks.
In a reactive person, like Kaylee, the bump swells within 10 minutes and becomes itchy and red. This means the immune system was triggered by the antigen that was injected. This makes the testing objective, because we can't rely on Kaylee being able to tell us how she feels. This is the Provocation stage.

Then, an even more diluted solution of the antigen is injected again intradermally, measured again. If this reacts, it is not the Neutralizing dose. If it doesn't react after 10 minutes, this is deemed the Neutralizing dose. It means that the body does not react to this concentraion of this substance/allergen. However, this won't neutralize the reaction yet because it has to be injected subcutaneously. Sounds like magic, doesn't it? I thought so too until I saw Kaylee get better with my own two eyes.

How exactly is this working? The lower dilution of the antigen activates T-Suppressor Cells in the immune system that, in essence, tell the rest of the immune system "It's alright, guys...this invader isn't worth going after." (a huge oversimplification.) Eventually, the immune system becomes desensitized and that specific antigen will no longer provoke a response. That is because T-Suppressor Cells tell the B-Cells in the immune system to stop making antibodies (which are the body's "invader recognition system")

Yes, this testing is time-consuming, tedious, and difficult to inject a 3 year old girl over and over and over again. She has been a real trooper, though. The doctor is over 70 miles away so we have had to make a few trips up there and break up our testing sessions. You can imagine the whole way up there Kaylee is in the backseat murmuring "No ouchie on my arm! No going to the doctor!"

We still aren't totally finished with all of her testing. So far we have tested a number of things like tree pollens, dust, dust mites, cockroach feces (it's in everything we eat apparently?), 18 different molds, glycerin, many foods, histamine, serotonin and next we will test more foods and grass pollens since those are starting to emerge now. In autumn we will address weeds when they come out.

Wow! Sorry if this is too long of a post. I feel like I have so much to say about this, I hope it is not confusing. I want to cover more about this in my upcoming posts. More to come!

Kaylee's Allergy Treatment Update

It's been over 2 weeks since Kaylee's first visit with another doctor, Dr. Oberg, and I wanted to wait to post about her progress since I wanted to be sure before I said this...

THIS TREATMENT IS WONDERFUL!!!

For the past few months Kaylee has been on a strict Elimination Diet (no wheat, no milk, no soy, no nuts, no eggs, no yeast, no chocolate, low sugar, only 3 fruits, no tomato, no dyes, no preservatives) and Benadryl everyday. She has had an air purifier in her room, carpet removed, and everything else a mom could do, and yet her allergy symptoms were not abating. Kaylee still had major meltdowns (Sometimes up to 20 a day. All I had to do was ask her a question) and these really dark "allergic shiners". Not any "typical" allergy symptoms like a runny nose or sneezing, though and that's what used to throw me off.

Nothing has worked for Kaylee until now. Her dark under eye circles are fading, and her meltdowns are almost non-existent, she pays attention much better, her stimming is decreasing again. I find myself constantly bracing myself for her outbursts and I am pleased to find they don't happen! She is about 50-75% better already, and the people in the office tell me she will be at least 90% better in the coming weeks as her immune system cools down. The transformation thus far is such a blessing.

There is so much I want to cover about this treatment, I don't know where to start so I am going to cover it in a number of posts about what this treatment is, why and how it works, and Kaylee's before and after.

More to come!

Update

Things have been like a roller coaster around here. Kaylee's behavior is up and down. We will have lots of bad days and a few good ones peppered in here and there, and I am pretty sure its due to her allergy/intolerance issues.

Recently, Kaylee had her Diflucan removed and she got better for a few days and then things got bad again. Then we remove something else and so it goes, its a cycle and just when I think it ends, something else comes up and her behavior gets bad again. Right now I have removed chicken from her diet and its working! But I am not holding my breath because another problem will probably arise. And so it goes with allergies...

Oh April 23 can't come fast enough! I shouldn't be placing all of my hope on one doctor (Dr. Oberg, who is a specialist in allergies and immunology), but the nurse at the NY clinic seems to know this is the key for Kaylee. However, I still place my trust in God, who is the God of knowledge. I know He knows exactly what Kaylee needs.

Right now Kaylee is still on Valtrex and Benadryl daily. She still has dark circles under her poor little eyes. She still has a very limited diet. She still breaks out into hives from certain foods. Here behavior is so difficult to deal with when we have a "bad day". She acts like a kid who is sick, over-emotional, angry, and tired all rolled up into one. Most of our days are "bad days". I would say we have a good day every ten days. This is very hard on me and the kids, too. I pray this ends soon!

On the bright side, Kaylee is really progressing cognitively and socially. She answers questions very well, can follow directions, and initiates play with other children. She especially likes older boys which I need to watch out for...

The GF/CF Diet...How and why we got started

After Kaylee was diagnosed with autism I got to researching. I read lots and lots of books and found a lot of information on the Internet (much of it conflicting...none scientifically proven, but that's a whole other post) and I don't remember where I heard of it, but I read one of the must reads for autism moms: Unraveling the Mystery of Autism by Karyn Seroussi. Before I read this book I never knew that autism was something kids could recover from. I thought kids were born autistic!

In this book, Karyn Seroussi talks about one of the first interventions she implemented for her son was the Gluten Free/Casein Free diet. This diet is one that excludes all wheat and dairy.

The standing theory is: when our children with autism eat these foods they can become chemicals like drugs that can fog up our children's minds and/or trigger their immune systems. This could be due to the 'leaky gut" syndrome, but nothing has really been proven as far as I know. But one thing is for sure, it has helped many children with autism either recover or at least improve their condition.

Now I was glad that there may be hope for my little girl when I read that, but I wept with an overwhelming fear and trepidation, "how am I going to do something like that????" I was expecting my third child at the time and I had a 2 year old and a 4 month old. Where would I find the time to cook all of this stuff? And what if she didn't eat it?

I believed that Kaylee was a definite candidate for this diet, pending her constant diarrhea, pale sickly look, and her underweight body seemed to be reason enough for me to take this step, scary as it was for me.

First, I took out the milk and replaced it with soy milk. She seemed OK with that.

The wheat? That was the hard part. If you want to go gluten free and you don't have much money (like us), you have to cook from scratch. That's what I did! I found some recipes online to replace what Kaylee's "usuals" were and I haunted the health food stores.

At first, Kaylee didn't like her new diet. I remember when I put the first GF/CF chicken nuggets in front of her. She wanted her Tyson chicken nuggets. She gave me a puzzled look at first and then proceeded to ignore them. I didn't fight her about it, I just let her from out of her chair and eventually she became hungry enough to eat them (this was at dinnertime) and she still eats them today.

After a little time on the GF/CF diet, I noticed that Kaylee's speech increased, and her poops were better, but still not normal. I was disappointed with her lack of growth. I heard of stories about people's kids speaking sentences after their child's gluten-and-milk-induced fog lifted, but such was not our case.

However, that is where I could lead into the next thing: the diet wasn't the whole problem for Kaylee. Later, after starting Kaylee on the NIDS Protocol for awhile I started to see that we were removing her triggers one by one: viruses, yeast, allergies. We are still working on the allergies now. It is important to know that even if your child doesn't totally show an improvement on GF/CF, you may be missing a part of the picture, but still on the right path! I believe that most if not all of our kids with autism have an issue with these foods until they become healthier.

I have been cooking GF/CF for Kaylee for over a year and a half now, and now I have a system that works for us. I will be sharing some of my tips in my next post.

Yet Another Mountain to Climb

I can't believe it! All of my kids are sleeping at once! That never happens...it's nice.

So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.

I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.

*Sigh*

The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.

*Sigh again*

Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.

But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.

About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.

Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)

When a Mom Can't Make It All Better

Tonight, I cried...

Most people would think is was about something silly. On the surface, it sounds so...

I cried because I couldn't give Kaylee ketchup with her dinner.

Kaylee cried, too. I know it wasn't about her not getting her way; she was wailing with grief and disappointment. All of the things she couldn't have were adding up on her. For months we have told her "You can't have this" and "you can't have that", slowly taking away all of the foods she loves.

So far we have cut out wheat, milk, egg, chocolate, soy, and most of the sugar. And now, her beloved ketchup.

As she cried I went to her on my knees and cried with her. Inside I understood and felt her pain with her. This poor girl. She is so strong. Who knows what she feels and what she is going through?

And there is nothing I could do to help her pain but hold her and apologize. When I went to her and said "Kaylee, I am so sorry." and held her, her tears soon subsided. But inside me I felt this horrible grief and it won't go away.

It is an agonizing thing me to feel, to watch and know my child suffers and not be able to do anything about it. For over 2 years I have watched Kaylee suffer though autism with sensory issues, anxiety, blood draws, yucky medicines 3 times a day, unable to eat what others eat, loneliness, being misunderstood.

All of these things for a little girl to handle. When I really think about it, I could despair.

So tonight, I laid in bed with her and I prayed over her and told her "Kaylee, I am so proud of you. You are so strong and sweet and I love you so much. God loves you, too and He is taking care of you and giving you what you need to get through this. Someday I know you are going to do great things for Him."

I don't know if she understood me, but I understood in my heart. She is in God's hands and He will care for her, He gave her a Mommy and Daddy who love her enough to do what is right even when it hurts, and will love her and help her through. We may not be able to fix everything, but we will be there.

That's right. He knows exactly what she needs.

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4

A cookin' fiend!

That's me lately...I have been burning things up in the kitchen. My wonderful husband was my hero and helped me late at night, too. (It's really hard to cook while holding an 11-month old.)

Last night we made Gluten free/Casein Free Meat Puffs. I didn't want to put a picture of them up here because they look gross! They taste awful too, but Kaylee loves them and we hide beef, carrots, sweet potatoes, and zucchini in them.

The night before that we made a bunch of GF/CF/Soy free/Egg free pancakes, too. Then I freeze them, because it is so convenient (and necessary!) to have stuff already made and ready to pop in the microwave.

The reason for all this cooking is that I am yet again cutting another ingredient from Kaylee's diet because I have to be totally sure there is not a food allergy going on and that ingredient is soy. And soy is in EVERYTHING! So basically I have to make everything she eats from scratch now. But that's ok. She's more than worth it!

Dr. Russell didn't tell me to do this, he told me he doesn't think her diet is the culprit here for her allergies and the return of her "bad poops". I think he's right but I need to be totally sure. I will be finding more out about that very soon, I believe.

So that is all for now...May God be with you!

Ahhh...the Adventures of Motherhood

Its been a while since I wrote on here. Things have been crazy, I mean, how does one person get sick twice in one week? When they have kids to propagate germs of course! That was me this week, sick as a dog with a stomach bug and then a bad cold right after.

Anyway, here is a quick update on how things have been. I found out this past week by accident that Kaylee + Zyrtec = Crazy, defiant Kaylee. I took her off of the Zyrtec and her behavior got much better.

But after I took her off of her allergy medicine, she started acting really weird, all hyper, she had hives on her face, and her behavior was still icky. For instance (for those who want to know) I could not ask Kaylee a question because she couldn't answer it without getting upset by saying "yes/no/yes/no". Kaylee also has mushy stools again, which is a clue that there is a food that she is eating and not tolerating. (Most moms of kids with autism end up with a "poop obsession", if you cannot already tell...)

Now that there are more food allergies we have found, it appears that it is an allergy to either chocolate or tomato or both. Poor kid. She has such a limited diet. If I have to cut out anything else I am in trouble. I don't know what she will eat besides plain chicken and boiled water!

I am trying to find things to make up for what she misses now. For instance I just spent a whopping $6 a bag for some stuff called "carob" chips and dairy-free white chocolate chips! I also found some "No-mato" catsup online for $6, too. It's made with carrots. (Yum, right?) We'll see what the verdict is on that soon...

Otherwise, when I cut these allergies out, Kaylee is an angel. I mean, no resisting about anything! She is a joy. In fact, thats what her name is: Kaylee Joy, because we knew that's what she would bring when she came into this world. Oh how I hope and pray things can stay this way! She is so much happier, and I think she feels better.



On a silly note, if you are wondering about what a taste of being a mom of 3 kids of three years and under is like, take a look at a sample of what I sweep off of my dining room floor!


*sigh* A woman's work is never done!

Another Piece of the Puzzle

I have been experiencing too many problems with Kaylee and I knew something has been wrong. She had recently begun taking Singulair for allergies and Lexapro to help restore blood flow in the brain. But Kaylee became hyperactive, excessively irritable (notice I said excessive, she usually has irritability anyways), and I couldn't reach anyone to find out what to do because of the holidays! First I stopped giving Kaylee the Lexapro, and the problems persisted so I discontinued the Singulair.

I just knew something still wasn't right but I couldn't put my finger on it, so to speak. Three days after we stopped the Singulair, Kaylee had hives.

Day after day this kept happening, each day getting worse, with Kaylee's hives getting bigger and her behavior getting worse. She started to get diarrhea and her nose kept on dripping and she was not sick. When I thought about it, I noticed a pattern emerging: it was happening after certain meals...Kaylee never displayed any with foods before, but now everytime she eats anything with strawberries she has an allergic response.

Now that Kaylee's immune system isn't needing to address her viral and yeast issues because of the medications she is on, her allergies are flaring up.

Right now I am scaring myself a bit, because I am wondering if Kaylee needs the Elimination Diet to identify any other possible triggers. Our number one priority in the NIDS Protocol is to cool down the immune system, and if the foods she is eating are causing an immune response, we have to find a way to decrease it. If her immune system continues to act up, and even more difficult, I believe that she may need the Rotation Diet to prevent any new allergies to food.

Maybe I will make a post explaining more about food allergies and more about the basics of immune system function soon. I need to brush up on some of it myself. I believe it is extremely important to understand the immune system if you have a child with autism because it is a key issue, if not one of the most imporant one.

If you want to do some research into food allergies yourself, check out the book Is This Your Child by Dr. Doris Rapp.

In the mean time, may God bless you richly with His wisdom! (James 1:5)
-Jennie