If you are curious and not much of a reader, I recommend watching this presentation by Dr. Michael Goldberg who discusses why the NIDS doctors treat autism like a disease. Very understandable yet very scientific!
Friday, May 29, 2009
Wednesday, May 20, 2009
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.
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*
Sunday, May 10, 2009
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 a
nd 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!
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 a
nd 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!
Tuesday, May 5, 2009
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!
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!
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