Monday, October 24, 2011

Guest Post & Interview: Regarding Caroline

Today I am very lucky to have Rebecca from Regarding Caroline with me!  She graciously agreed to do an interview and is also allowing me to share one of her posts. It is a must read!

CAM:  Rebecca, I wanted to sincerely thank you for taking the time to chat with me. I have to tell you that I found out about you and your site through some Facebook friends who were madly posting links to your site the day you posted, “That Would Never Be My Child…” They were right to be sharing your post! You really drew me in as you talked about how you were never going to have that child or that house. I understood it also as not wanting to be that mom. You captured my attention, for sure.

As I continued reading, I found myself nodding my head in agreement all the way through. You spoke about everything so completely and honestly, without judgment or negativity. That is why I felt compelled to contact you to get your permission to post the content on my own blog. My readers needed to see it. I am so grateful that you are giving me the chance to share your advice and a little bit about you and your daughter.

I’d like to start by asking about how things are going at your house right now. How is your family doing?

Rebecca:  Well, first of all thank you for your generous compliments!  Things at our house are going well.  Caroline is 5 and in mainstream Kindergarten with an aide.  She’s such a happy girl who truly loves life.   
There are two ways I look at our situation.  On beautiful days, when the sun is shining and everything is happy, I think about how lucky we are.  For a long time, I doubted that she would ever speak.  Like so many parents, I prayed, “Please, let her talk to me and I won’t ask for anything else.”  I’m grateful that my prayer was answered, but still, on those cloudy, dreary days when we’re stuck inside working on what feels like the same goals we’ve had forever, I’ve been known to forget that promise I made and start to feel sad about all the things she can’t do, such as have a conversation with a friend. We always want to get to that next step with our children, even if they’re typical, which is good, because it keeps us motivated, but also so important to remember from where we came and count our blessings for what we do have.
When she’s not “herself” it always means something is medically wrong.  Recently, she had a rapid onset of new OCD type behaviors and irritability.  With the help of a specialist, we learned that she’s dealing with PANDAS.  It’s been a whole new journey of discovery and healing.  PANDAS is an autoimmune disorder that affects a large percentage of children on the spectrum, but I’ve found that many people are still unaware of it.   After seeing how much Caroline improved with treatment for it, I’m going to have to get the word out!  For her, when we treated the inflammation caused by PANDAS, her eye contact and engagement profoundly improved and other typical ASD traits decreased.  It makes you wonder how many other children on the spectrum could also improve.  So overall, Caroline is doing well.  Thinking about how hard she works to attain what comes easy for most kids, makes us very proud parents.
CAM:  Just a quick note on this – PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. If you are interested in learning more about what happened with Caroline, please visit Rebecca’s post about PANDAS. I also wrote a post about these issues that includes a link to a scientific case study about PANDAS. OK, back to questions...
In Washington State there is insurance discrimination against the autism diagnosis code, which means insurance companies can get away with not paying anything. It’s commonplace and tragic for families like mine. Does insurance cover any of the treatments for your daughter? Do you have any tips on how to pay for treatments?
Rebecca:  We’re fortunate that we live in one of the states that have mandates for autism coverage.  Here in Illinois, insurance must pay for $36,000 of medically necessary autism related therapy each year.  The majority of Caroline’s speech, OT and PT are covered.  It’s important to have a prescription for the services and to use the right codes.  In the beginning we received many denials, but once we got those initial claims paid, we haven’t had problems.  The National Conference of State Legislatures website has a helpful page that outlines each State’s autism coverage requirements, in case anyone is unaware of what their State offers. (http://www.ncsl.org/?TabId=18246)
CAM:  Like many of us warrior parents, you probably have your PhD in vaccines from Google! Do you have any sort of estimate on how much research you have put into the topic of vaccines?
Rebecca:  That’s so true, and it’s too bad we can’t print out Google diplomas after we reach a certain number of hours logged on a topic!  The nice thing about the internet is that it allows us access to scientific journals, Pub Med and sites that allow for serious research into the topic.  The type of research even my former law school professors would approve.  Often times, us parents aren’t just reading the sites that report the stories, we’re reading the research itself.  Research that most pediatricians don’t even know exists, which as you know is the frustrating part!
How much time I’ve spent varies widely.  Right after her vaccines, when I first noticed changes in Caroline’s behavior, I researched them every night until I was exhausted.  I was actually looking for articles to prove that vaccines couldn’t have caused the changes, but I couldn’t find any.  All I found was more and more proof that they did.   I felt so sad and guilty that I had to let it go for a while and start focusing on recovering her.  I took all the time I was spending and put it into researching biomedical treatments.  Then, after she started recovering, and enough time had passed, I was able to look at it again.  Now, I keep up to date, reading new reports as they’re released, but still spend more time researching biomed and educating others.  
CAM:  Have you ever spoken with your daughter’s pediatrician about her vaccine injury? If so, what was the response?
Rebecca:  Our situation is unique because the pediatrician who gave Caroline her vaccines moved away just after her last set, at 12 months.  The pediatrician who took her place has never given Caroline a single vaccine.  She has two children herself who developed seizures after their MMR vaccines, so for her third child she delayed it.  Yes, you heard that right, DELAYED.  That’s how strongly Pharma has convinced these doctors and how little of their own research they do.  She admits she has not read any independent research.  I have given her some and I hope it gets through.  Who knows, maybe like so many doctors with vaccine injured children, someday she’ll become an alternative practitioner. 
The pediatrician who vaccinated Caroline after my continual questioning is now in Minnesota.  Just last week, I requested an email address to get in touch with her because I wanted to send her the blog.  I think she deserves to know.
CAM:  Another note – If your child has experienced a reaction to a vaccine, please contact your doctor and ask them to report it to the VAERS (Vaccine Adverse Event Reporting System) database. Vaccine injuries are notoriously underreported, so if you see any behavioral or physical changes following a vaccine, it is important to get those documented so that you retain your rights to access the vaccine court, should it be warranted. Now, here is the last question.
If you could boil down your experience into one nugget of wisdom, what would you like to share?
Rebecca:  Wow, that’s a tough one.  If I have to choose just one, I’d say “Stay the course.”  It seems that sometimes parents try biomedical treatments or the GFCF diet briefly and think, “Well, that didn’t work.”  Almost as if they don’t want it to, because, well, honestly, in the short term, it’s easier that way.  I know the feeling well!
The problem is that many of the things we’ve done with Caroline have resulted in only subtle changes, but over time and combined with others, they amount to a remarkable difference.  Miss a step or two, or three and she would not be where she’s at today.  An example is how many children need to also be soy free or even grain free for “the diet” to help.  If those things are not tried, an opportunity for healing and recovery might be missed. 
To be sure I don’t ‘abort mission’ too soon, I try to understand the science behind what we’re doing.  Knowing why something should work helps me to be more invested in it, increasing the chances I’ll stick it out and ultimately that Caroline will benefit.   
CAM:  That is excellent advice! I, too, have seen many families give up on new things too quickly. I think it's hard for parents to be patient because it seems like we are all in a rush to survive our current crisis, whatever that may be. We want to see positive changes yesterday! It can be very hard to have a little faith in something when the changes are slow and subtle. This is where good record-keeping or journaling can help you understand where your child was before, during and after a new treatment.
Before I launch into your post, I wanted to share my absolute favorite thing you said:
“That would never be my child,” was the rationale that resulted in my ignorance. An ignorance for which I paid an incredibly steep price. The life of my child was changed forever. Much of her childhood has been spent seeking recovery and the guilt I feel will never be lifted.
Rebecca, your words mean so much. I can only hope that more people will take those words to heart as they make choices for their children. Thank you for being here today.  
Rebecca:  Thank you for taking the time to ask such thoughtful questions and for sharing our story!
CAM:  Please visit Regarding Caroline to learn more about Caroline’s journey, get some great links, watch Caroline’s recovery video, and much more. You can also “Like” her page on Facebook.

That would never be my child...
Although Caroline is 5, it seems like only yesterday I had a life that was my own and was so blissfully unaware of the demands of motherhood, that when witnessing a screaming child in a restaurant I'd think, that would never be my child.

And when I was pregnant, visiting a friend's house where dolls and toys were strewn about every room, I insisted to myself, that would never be my house. In fact, I didn't want colorful, plastic anything. The thought of a high chair disrupting the clean lines of my stainless and glass dining table caused me tremendous anguish.

Needless to say, I've come a long way since then... and I have a house overrun with toys, games and stuffed animals to prove it.

So "Why is it," new moms often ask, "that they don't tell us what it's really like having kids before we have them?"

Honestly, I can't say no one did. People do, we just don't listen.

We're too busy living our fabulously free lifestyles to begin to contemplate what true sleep deprivation actually does to one's mind or to comprehend how it will feel to have the 60 minutes we spend getting ready dwindled down to 5 (if we're lucky).

We may hear the words our friend is saying - but subconsciously we think - that would never be my child. My child will sleep through the night and be easy, beautiful and perfect.
Optimists to a fault

Most of us possess an innate optimism that's fundamentally an admirable trait. But it's also the cause of a noticeable disconnect between people who have experience and people who could benefit by learning from it.

Instead of listening, we too often think that we're unique and the difficulties others encounter won't happen to us and certainly NEVER to our child. This disconnect seems to be profoundly present between parents who have vaccine injured children and those who don't.

The group who doesn't, understandably tend to think that vaccine injury is rare and accordingly not even on their radar. Besides, (subconsciously again) since our own children are exempt from the perils of the world, why worry about something that isn't going to happen?! That would never be my neurologically
harmed child.

Plus, there's the: "My pediatrician told me that giving 6 vaccines at once to my infant is safe, so it must be."

The truth is, many pediatricians have a demanding practice during the day and then go home, just as exhausted as the rest of us, to a family of their own. Vaccines are not at the forefront of their mind and what they tell you is merely what the Pharmaceutical Rep they had lunch with last week told them. That's it. There's no time for countless hours of independent research.

The Gurus


The people who make it a priority to find, read and piece together independent research are parents who observed changes in their own child following a vaccine.

We read everything we can get our hot little hands on - articles in scientific journals, lab reports and books written by doctors who specialize in the area. The more we learn, the more obvious it becomes that our 'anecdotal observations' are shared by thousands and firmly backed by scientific research.

Here's an example of something I read today: An Update on Viral Issue in Autism by Dr. Jeff Bradstreet. No offense to your pediatrician, but if he or she read it, I'd be (pleasantly) shocked.

The Great Divide


Armed with findings, such as the above link, we eagerly try to pass along the information to parents who haven't been affected by the issue. But honestly, it's largely ignored for two reasons:

First, if that would never be your child, I completely understand why it wouldn't be interesting to you.

Second, we're a society who gleams our knowledge from media snippets. We certainly don't have time to read research papers between our children's piano lessons and basketball practice.

It should be noted though, that media snippets can be very effective: consider the fate of BPA in plastic. The media told us it's dangerous and we avoid it like the plague. "BPA Free" labels abound, which is great... but in comparison to the toxins in vaccines (injected directly into our children) BPA is relatively tame.

Why doesn't the media report the risks of vaccines?


Sick children have made for many a heart-wrenching news story. The images of their innocent forlorn faces compel us to tune in to each night of a series to find out whether they'll recover.

Which makes it curious why we never hear: "Don't miss our story of little Nathan's triumphant recovery from vaccine injury, Tonight at 10:00."

The reason is simply that vaccine manufacturers have silenced the media. The media needs the pharmaceutical company's advertising dollars. Anyone who has a TV or reads a magazine, knows that without ads for prescription medicines, the media outlets may head into a tailspin.

Parents as reporters


My Facebook news feed abounds with vaccine injury stories all throughout any given day. Here are just a few examples from this week:

The problem is... how many of our friends with typical ice cream eating, soccer playing, sleep-over having children are reading these stories? And if they do read one or two of them, they (understandably) are lacking some background needed to connect the dots from A=>B=>C. C being various forms of vaccine injury.

Of course, it's much easier to fall back on old reliable... the pediatrician... who's merely regurgitating what he or she was told by the vaccine manufacturer.

In order to know enough to stand their ground in a discussion, our friends need:
CliffsNotes

There's nothing better than CliffsNotes to brief you on important points when you don't have time to read the whole (or even part of) a book. So here they are:

Chapter One
Three Ways in Six Steps that Vaccines can Harm Our Children.
Cliff's Tip: Although there are many, memorizing these should sufficiently fill your Blue Books.

Reaction to the Viruses
1.      The immune system and the brain are intimately connected.
2.      People with autoimmune issues make antibodies to things they shouldn't.
3.      The antibodies cause, among other things, inflammation.
4.      Viruses in vaccines can trigger an autoimmune reaction.
5.      The result is often inflammation in the brain.
6.      The brain inflammation causes neurological damage.

Accumulation of Metals in the Body
1.      Vaccines contain heavy metals (aluminum, mercury etc.).
2.      The body cannot easily release or flush heavy metals.
3.      Individuals with impaired detoxification systems can't release them at all.
4.      They accumulate in our tissues, immune system, brain and kidneys.
5.      Metals are known neurotoxins.
6.      All people are harmed by metals - the extent of damage is the only variable.

Creating Imbalance in the Immune System
1.      Proper immune function requires a balance of reactions.
2.      Th1 = acute reactions and Th2= allergic/autoimmune reactions.
3.      Vaccinations work my modifying the reactivity of the immune system.
4.      They decrease acute inflammatory reactions (Th1 side).
5.      They increase allergic and auto-immune reactions (Th2 side).
6.      Vaccines cause people to become more autoimmune and allergic.

Note: Yes, the last example is the cause of the first example... a vicious cycle. And yes, again, you should definitely take this list to your doctor's office and see what they have to say.

If you're interested in extra study on the above, you should read this: Paul Offit is Right! Autism is About the Synapse… and Dendritic Immunity (thank you Marcella-Piper Terry)

And for still more, consider this website: Healing-Arts, Autoimmunity, Vaccines And Autism
Dear readers, there is MUCH more! To read Chapters 2 through 4 and the parting notes from Rebecca's Cliff Notes, please click HERE.


4 comments:

Crystal said...

Can't wait to read more of this blog when my daughter naps. :)

Cari from Bubble Gum on my Shoe said...

CAM, great interview! Thanks for sharing Caroline with us!

Caroline, fabulous, so very informative and I was nodding my head just like CAM. With Autism so prevalent, why is America still stuck in the, "not going to worry about it because it won't happen to me". We, pharma, pediatricians are all well meaning but harming our children. And YES the recovery stories need to be out there, not just on blogs! Perhaps that's where we start, with the recovery to get people's attention. Oh grrr. Wonderful words, def will follow you on FB and Twitter:-)

Caffeinated Autism Mom said...

Thanks, Crystal! And, I am so in agreement with you, Cari!

Kara said...

Oh, Thank You!! Thank You!! Thank You!! From the bottom of my heart. And from the grassroots parents that has put relentless pressure on the medical community & researchers to get our kids some relief!! PLEASE get the word out about PANDAS or PANS as the nature of the disorder is evolving. I can not begin to describe the horror our family has been through for so many years as we searched & searched for answers for our now 12 yo son. We called our son "The Alphabet Kid" due to all the acronym dxs over the years. MANY PANDAS families (like ours) are finding a tick-borne infections problem in the family, as well. PLEASE check out pandasnetwork.org for the very latest in research & all things PANDAS. THANK YOU!! Kara

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