Thursday, February 18, 2010

Respen-A information! Mark your calendars!

I just got this comment from Elaine De Lack:
Hello Terri, I just wanted to spread the word that we are now having webinars twice a month, the first and last Tuesday every month regarding Respen-A and other therapies and findings. The first Tuesday each month will be at 7:00 PM PST and the last Tuesday each month will be at 7:00 PM EST. Dr. Starr will be presenting at most of the webinars and will take your questions during the webinar. We also are encouraging parents who have experience with their child using Respen-A to participate and answer questions and give comments so that we can all learn possible ways to help the most.

If people are interested in attending the webinars, email a request for an invitation to Thanks.

Elaine DeLack

Dr. Wakefield RESIGNS from Thoughtful House

Here is their statement:
The needs of the children we serve must always come first. All of us at Thoughtful House are grateful to Dr. Wakefield for the valuable work he has done here. We fully support his decision to leave Thoughtful House in order to make sure that the controversy surrounding the recent findings of the General Medical Council does not interfere with the important work that our dedicated team of clinicians and researchers is doing on behalf of children with autism and their families. All of us at Thoughtful House continue to fight every day for the recovery of children with developmental disorders. We will continue to do our very best to accomplish our mission by combining the most up-to-date treatments and important clinical research that will help to shape the understanding of these conditions that are affecting an
ever-increasing number of children worldwide.

Dr. Wakefield is probably wanting to distance himself from Thoughtful House so that the negative fallout of this ridiculous nonsense does not impact them. He continues to make sacrifices to stand up for our children and what many of us know to be true. That some children were damaged by vaccines, many children do suffer from severe GI issues that is not just "because they have Autism" and that biomedical treatments can help many people feel better and exhibit less symptoms of Autism.

Natural allergy support

Well, it is that time of year again, at least in the desert southwest (where spring begins in Feb, lol), ALLERGY time! Most of the inhabitants of my home are sneezing and have runny noses, not related to illness. But, what we found out last year was the immune activation in the form of allergies can encourage illnesses to take hold, or even yeast flares. A couple of years ago, what started out as an allergy attack for me ended up as a full blown cold. And we noticed my son's yeast levels flare up when his allergies did too. Why? I think of this as the "mom's on the phone" syndrome. Think of your immune system as mom, the allergies are the phone call she has to take with the kids running amok. The kids represent other viruses, yeast, etc (sorry kids). When mom is distracted by the phone call, the inmates begin to run the asylum. Other issues can get out of hand when the immune system is faced with allergy symptoms. So, controlling allergies may do something other than just provide comfort and relief, it may help you not get sick!

Once I started working conferences for New Beginnings, I got to hear and try other supplements that I probably would not have otherwise. One such product is the A & I support formula which stands for Allergy and Inflammation. I think of this as a natural antihistamine. It has very soothing ingredients like quercitin and vitamin C that can help boost immune function and calm immune response to allergies. I was at a TACA conference when something in the air set my allergies off, itchy throat, nose running, etc. I had some of the chewable A & I out for sampling and I took 2. Within a matter of a few minutes, complete relief!!

So, as I hear my family begin to sneeze, as I see the trees and flowers begin to bloom again, this becomes more of a staple than normal. So if your allergies are driving you nuts, this may be a natural alternative to the prescription or over the counter remedies you may be taking!

Here's the info on A & I:
A & I Formula is a natural, non-drowsy formula designed to provide relief from allergy and cold symptoms and accompanying inflammation. The following primary components are the reason why A & I Formula can provide optimal support to inhibit the release of histamine and to provide overall support to the body’s mucosal membranes that can be affected by seasonal allergies, food allergies, and other environmental assaults on the immune system.

Quercetin - A powerful natural flavonoid with powerful antioxidant, antihistamine and anti-inflammatory properties.

Stinging Nettles Leaf - Stinging Nettles Leaf has been known for its analgesic, anti-inflammatory and overall healing qualities.

Bromelain - A strong pineapple enzyme, bromelain has proven mucolytic properties and it inhibits pro-inflammatory compounds, thus reducing pain and swelling.

N-Acetyl L-Cysteine (NAC) An amino acid that is a natural mucolytic, NAC reduces the viscosity of mucus.

Suggested Dosage: Loading dose: 2 capsules three times daily for 7-10 days. Acute dose: 2-3 capsules as needed. Maintenance dose: 1 or more capsules per day or as suggested by your health care practitioner.
A Statement from Dr. Andrew Wakefield
August 31, 2009
After watching NBC-TV’s Dateline special “A Dose of Controversy,” Dr. Andrew
Wakefield took issue with several critical points in the report. Although the program was the first of its kind to actively engage the mainstream on the question of vaccine safety, there were many failures in the information presented and important information was edited out. Below is a list of these items from Dr. Wakefield. Our goal is to make certain as many people as possible understand and receive the full story regarding MMR, vaccine safety, Dr. Wakefield, and Thoughtful House, and NBC failed to provide this to an audience of millions.

A. There has been extensive replication of the finding of bowel disease in children
with autism (ASD) from five different countries. These findings have been published in peer-reviewed journals or presented at scientific meetings. It is therefore incorrect and misleading of Matt Lauer to have stated that every aspect of my original hypothesis has been disproved. On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. This obvious inaccuracy requires clarification by NBC.

B. The shortcomings and the flaws of the studies quoted by Dr. Offit, claiming to disprove an association between vaccines and autism, were not discussed in the program. In my interview with Mr. Lauer I took as an example a paper from Dr. DeStefano from the CDC claiming to exonerate MMR that actually showed that a younger age of vaccination with MMR is associated with a greater risk of autism. This study confirms the association and has been falsely portrayed as vindicating the vaccine. This should have been included in order to provide balance to the program.

C. Reference was made to an autistic child in the vaccine court whose claim for MMR damage was overturned by the judge. No reference was made to the successful vaccine court case on behalf of the child Bailey Banks, coming just one week after the unsuccessful claim described by Mr. Lauer, in which the judge ruled that MMR vaccine can cause autism. Therefore, in the view of vaccine court, it is not a question of whether or not MMR can cause autism, but rather how many children are affected.

D. There was a complete absence of comment on the lack of any adequate safety studies of childhood vaccines and the vaccine schedule in particular. There was no mention of the admission by vaccine regulators that there is no data on the long-term safety of vaccines, the chronic disease burden caused by vaccines, and the likely potentially harmful interactions between various vaccines in the routine schedule.

E. Undue credibility was given to Brian Deer, a discredited freelance journalist, whose false reporting has caused so much misunderstanding and damage to children through the misrepresentation of the doctors and parents who were seeking answers to the vaccine-autism question. Deer has repeatedly misled the public and the medical profession and has been unable to respond to clear evidence of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.

F. It was not disclosed that I have repeatedly invited Dr. Offit to take part in public debate on the safety of MMR vaccine and the false and misleading claims that he has made in the media and his book. He has refused to accept this invitation and
has continued to hide from an open and honest debate.

G. NBC alluded briefly to the fact that Richard Horton, editor of The Lancet, was informed of my participation as a medical expert in the MMR litigation almost one year before publication of the Lancet paper in 1998. NBC failed to clarify that when Horton was challenged to respond to the fact that when he so enthusiastically denounced me and the paper in 2004 the Lancet staff was already fully aware of the facts and at that time did not consider them to be relevant. Horton refused to be interviewed by NBC and the interview segment shown was from 2004. This refusal is in sharp contrast to his willingness to denounce me in the media in 2004. NBC also failed to mention that in the light of these facts Horton has been reported to UK’s General Medical Council on an allegation of perjury.

H. It was unfortunate that NBC, having stated their determination to resist external pressure to distort the balance of the program, yielded to such pressure from the American Academy of Pediatrics, allowing them the final word in the program while denying representation from the National Autism Association who put forward to NBC a rational and well reasoned call for further science to resolve this very real issue.

I. Dr. Offit cited a large population study of autism and MMR from Denmark in support of his claim to ‘certainty that there is no link.’ This study was so flawed that it was rejected from consideration by the gold standard scientific review by the highly influential Cochrane Collaboration. Dr. Offitt, who is not an epidemiologist, was clearly at a loss to understand the study’s fatal flaws

Saturday, February 13, 2010

Please help me oppose Senator McCain's bill attacking our access to nutritional supplements

Please click HERE and share your opinion if you oppose the attack of our supplements in this country. They have been instrumental in healing my son and helping our whole family stay healthy. If you don't believe in supplements, I respect that, but please help us that do retain them. No one forces anyone to buy them, the deal is they are not regulated by (and no profit goes to) the FDA. We all, as consumers, need to be aware of the bad ones but there are many reputable brands out there. I for one want access to alternative health options, and for us that means supplements in addition to other things.

Friday, February 12, 2010

So, I can't believe 2 whole weeks has gone by since I was at the Hope In Action conference in San Francisco.

But that weekend was amazing. I always love hearing Dr. Woeller and Julie, I had not heard Stan Kurtz speak so that was great. But more than anything I was so happy to hear from other parents. We can get so much out of our meetings. I had someone comment on my last post about a crazy day I had. I don't want to mislead people into thinking I have got it all figured out, because I struggle just like everyone else. But, this is 3+ years into this biomed journey and life has gotten easier in many respects. I sometimes wonder if the world can see my "Autism scars" though. I look back on the last few years and feel a bit battle worn. The years of no sleep, constant tantruming, I can still hear his screaming in my head when I think about it. We couldn't go anywhere without a meltdown or a freak out, so I avoided MANY things. We lived and breathed his schedule because disruption was so bad and he was so explosive. I did my presentation last week at one of my son's therapy clinics and used before and after biomed pictures. The before picture brings me to tears. Such a vacant look, I was standing in front of him calling his name, nothing. There were times when I thought, very early on, that I was just not cut out to be a mom. And I felt so isolated. I didn't have the awesome group of moms back then, heck I didn't even really understand Autism or know that my son would be diagnosed with it. And every other mom I knew made it look so easy. Why wouldn't my child sleep? Why did my child cry inconsolably all the time? Why was this so HARD for me?

I looked into these moms' eyes at the conference and saw that many were where I was back then. For me, I have cried thousands of tears, tears of regret, guilt, anger, frustration, exhaustion, you name it. And then you start to go into type A fixit mode. And I haven't looked back since. I still grieve, I still do the "why me" sometimes but much less now. I actually think now "why not me?". These amazing people were placed into our lives for a reason, and I think we are the perfect people to help them through their own journey with Autism. There have been really dark periods in my life as I have tried to understand and navigate my emotions as they relate to Autism and what my son has to go through each day. I like to think we made it through the other side better equipped for what comes next, whatever that is. But I wonder if other parents can see it. But to look into another mom's eyes and say "I know how you feel" and mean it. To be able to tell all the seemingly crazy things (to people without a child with Autism anyways) you've had to do to help and protect your child. We had to build a dutch door to keep our son safe at night since he was up at all hours and we have a 2 story house. Even WITH a gate at the top of the stairs I worried about him falling down them or getting into something without us hearing. I developed the ability to wake up just minutes before he would (I know, crazy, right?). I would wake with a pounding heart, adrenaline racing. It took years for that to go away. The level of stress was out of control. Some of the ways to calm him, from the outside, could look like forms of torture or abuse - smooshing with pillows and "whacking" against soft couch cushions for that input his little body craved. Of course these were all suggested by professional occupational therapists and if you saw the huge grin on his face you'd know he loved it but at first glance, CPS could have been on my doorstep, lol. I had no clue what was going on with my son, with my self, with my family as a whole for a period of time. I told you, I don't have it figured out either. But, I have learned to adapt better. We've done a lot to help my son feel better and his behavior has changed. I always tell people I would rather spend the time to fix him special meals from scratch than deal with non stop tantruming, that is my choice. Seems like a no brainer for me. His screaming was almost too much to bear at times. It was hard. The hardest thing I have gone through to date. No one is equipped for this journey. But you strap in and try and keep moving forward. And with my son's recovery comes a little bit more of my old self back. Some of the stress goes away. We can function better as a family. And yet talking to another Autism mom still heals my soul just a bit. Another person who has "been there, done that". We don't have to share all of our stories to know that we understand each other and even though every child is so unique, these struggles are not. We all have those emotions that tear at us.

And then we hear our child speak. Or maybe they make and hold eye contact, or what about potty training, no matter the age. You cheer louder than anyone out there. You just know how hard they work to accomplish what comes so easily to their peers and even their siblings. It was hard seeing our friends' kids pass him right by, even though they are the same age. But wow what a rush when they master something. You become the proudest mama in the world (or dad!). And their smiles, laughter, hugs and kisses are so worth it. Now I hear "aww thanks mom, you're the best!" and it is the best thing I could hear. And it keeps me going each day, even when I am exhausted, stressed and worrying about how to pay for it all.

Autism does not come with a guidebook and we all do the best we can, each day. So, when you see another mom who looks like she's got it "all figured out", she probably doesn't. And if you are talking about me, now you know I certainly don't. But what can I do? Fall apart and be paralyzed by fear, doubt, naysayers? Absolutely not. That will not help my son at all. So, I slap a smile on and keep moving baby. But I think we need to be honest about these feelings, otherwise we do feel isolated and alone. We need to know there are others out there with the same fears, doubts, frustrations, anger, etc. I hated when new moms only talked about how rosey and wonderful life was! Can't we be honest for just a second? And that does not mean I want to dwell on the negative because I don't. But, I think people need to feel like they are not alone. I am here to help as many people along the way as I can. Anytime you need to talk, I am here. Contact me offline for a lunch date or whatever. We are all in this together, never forget that!

Thursday, February 11, 2010

A day in the life.....

So, I know I really try and focus on the positive of life and treating Autism in our family. But there are some days where I think I could easily OD on stress. Today was one of those days. Let's see, it is nearing Valentine's Day and so both kids needed Valentine's to send in. Both of my children signed ALL of their Valentine's this year. 1st off, I thought it was amazing for my daughter to be able to do that now. 2nd, my son has grown so much in his fine motor skills that he could this year too, HURRAY! So, after getting him to sign all 21 for classmates, teacher and speech therapist, I wrote each child's name on them for him, not remembering that the teacher said to leave them BLANK! I wanted to cry, I had ruined his Valentine's by not following directions and he worked so hard "doing his best work" and writing his name on each and every one of them. For many parents this would not be a big deal, just redo them. But my son's fine motor has always been so poor that this was NEVER an option, writing was a chore at best. And even though he has come so far with fine motor, we worked on these for days to get them all done. I wanted to cry, really. So, as we were walking out the door to run errands before school was when I realized this snafu. I tried to focus on getting out of the house and calming down, I would figure a way out of this.

We had to run errands and during those errands - in the aisles of Fresh and Easy, I got a call I was REALLY waiting for. You see, I am taking our secondary insurance to court to cover the co-pay on a very necessary medication. One that, I might add, a friend gets for HER son, same plan, same prescribing doctor, same pharmacy. What the hell?!?! It made me mad enough to appeal the denial, which they denied and now we have a hearing scheduled Tuesday. I rec'd a call yesterday from a rep at the agency that governs that service and we had played phone tag yesterday so I NEEDED to take this call, yes in the middle of Fresh and Easy, in my rushed shopping trip on our way to schools. What I was told was the ins. company was not prepared for the hearing and "just want this to go away" and could I send them a lab test showing a deficiency? So then I needed to get on the phone to my son's doctor to see if any such test exists. Then I called my friend, the other mom who gets this medication covered to see if SHE had been asked for any sort of test to gain coverage (all in between drop offs at schools). That shot my planned trip to the gym to hell. So, I get both kids off to school, then it is spending the next hour or so pulling out old tests, getting documentation faxed to me from my son's doctor, etc. I would really like to NOT have to go to this hearing. I already didn't plan on being Dr. Mom, literally, but to be lawyer too? My plate is full. So, I did find a test that shows deficiency so hopefully I will get the call saying Tuesday is not necessary, who knows. Otherwise I need to fax about 50 pages to the respondents and file a motion online with the Office of Administrative Hearings tomorrow. And I am in the kindergarten class all day tomorrow. Then, it was time to focus back on the Valentine's that I ruined again. I printed off a sheet of blue paper with "My friend" typed and cut them all out with decorative scissors and glued them over the names I had written. OK, crisis diverted. Finished those up, tied them on the hearts/pencils I had done the previous days. Guess what? My child-free time was up, Princess needed to be picked up from school. Then I wanted to experiment with the chocolates some more. I didn't like the strong taste of the coconut oil I used previously. So, I tried a different brand and WOW, they taste JUST like dark chocolate. I even made peanut butter (almond butter really) cups, almond joys and mounds for my family for Valentine's day (hey we ALL deserve a treat, even on a restricted diet!!). I made some for M's teacher who is also suffering from some allergy issues. I still need to wrap her Valentine's day gift.

Now on to bake the cupcakes I signed up for. Yes, I signed up for the cupcakes for tomorrow's Kindergarten party. Why? Isn't life crazy enough? Well, I get so tired of my son always being the odd man out. Yes, I can make a sub for everything but they many time look different. The kids in his class are so great with him and are not mean in any way. But sometimes I am so tired of my child being so "different" (and yes I do realize this is MY issue). So, since Betty Crocker has some rockin' gluten free mixes out now, I figured that would be an easy way for him to have the exact same thing everyone else does, so yes, add that to the priority list. He gets to have a cupcake that looks like everyone else's! I also had to wrap the present for the classmate's birthday party we are going to tomorrow after school. Hubby gets a reminder note to bring M's his special pizza for the party tomorrow (see, his special food again).

Today was crazy. But that is my life. I don't always handle the day so gracefully. Thankfully they are not always quite to dramatic or stressful. That's why this blog is called Life on the Roller Coaster. I often feel like I am on a roller coaster ride. Sometimes its not so fast or scary but then other days all I can do are hold on and make sure that seat belt is tightened. But you know what, My family is my world. And tomorrow when my son gets to eat the same cupcake as his friends, and gets to exchange his Valentine's (that HE signed) and gets to feel like every other kid there, it will be all worth it. So we continue to juggle, as I know many Autism moms and dads can relate to. Sometimes we go over and above to make sure our children don't feel left out or different. We have to do things many don't (like fight insurance companies), and we have to play Dr. mom or Dr. dad to a whole different level than most. But we do, and we keep going, exhausted and stressed yes, but you know what? My kids are happy, they know they are loved, and they see mom putting out the effort for their school, for them and it goes a long way for them.

And you know what made me laugh today? Hearing my son tell his sister "Can you go in and tell my mom that you hitted me?" Needless to say my daughter did NOT come in to tell her mother that she hit her brother. But, M's innocence and naivete is so wonderful at this age and part of me wants him to keep that forever. But not too long ago he would not have reacted to being hit, he would not have been able to communicate that he had been hit, nor would he have asked someone else to come and tell me about it. Now, the hitting part, that wasn't so funny, but that is a whole other story.

So there you have it. My day. I wish I could say the days are getting less crazy but they are not, they are just turning into a different kind of crazy. I wouldn't have it any other way but boy am I glad tomorrow is Friday!!

Wednesday, February 10, 2010

Sweets for your sweetie

Hello all! I have perfected my handcrafted chocolate recipe! This is a gluten, casein, soy AND sugar free chocolate. The sizes pictured are larger pieces of chocolate (think Reese's peanut butter tree sized) so about 2 - 3 inches across or so depending on the shape. They are made with coconut oil so refrigeration is suggested. I can do them with nuts (Almonds, pecans or walnuts). See pricing below:

1/2 dozen, 2 of each shape without nuts - $5.00
1/2 dozen, 2 of each shape with nuts - $6.00

I am working on smaller, bite sized versions today, I hope to get pricing figured out by then as well. I will have miniature Reese's peanut butter cup sized chocolates along with miniature, bite sized heart shaped ones.

Locals only this year until I can figure out shipping options. Perfect for people on restricted diets and even diabetics. Made with stevia!

Sunday, February 7, 2010

Temple Grandin on HBO

I have to say that I think HBO did a phenomenal job with the show on Temple Grandin. I was in tears not only from the perspective of a mother because they lightly touched on that relationship which I know is hugely important to her but also from Temple's point of view. My son also had very big sound sensitivities and the way they protray her focus being on all those sounds in her environment so accurately, it brought me to tears being able to see what my son went through for years. His sensory issues have, for the most part, gone away although he is very distracted by sounds at times. And what can I say about her squeeze machine? She is so amazing and so tenacious in finding the things that help her. It is what we also hope for our kiddos, that they can recognize what they need (deep pressure, quiet, etc) and request it or go to it. My son has been doing a great job with that lately. At his sister's birthday party he went to his room and got into his tent for a little alone time, telling my husband it was too crazy and he needed to chill for a while. Before that would have ended with hours of meltdown. And watching her in her squeeze machine really brought back the memories of "shmooshing" my son on the couch to provide that much needed proprioceptive input. When his sensory system was dysregulated we would lay him on the couch or a bed and shmoosh him with pillows, literally laying our body weight on him, which was disbursed by the pillow. He loved it, you could watch his sensory system calm down, it was amazing. We almost never have to smoosh anymore. We also did the Wilbarger Brushing protocol which was also helpful for sensory issues. But Temple was paving the way years ago, when this disorder was not so well known. She is just amazing, and to get a look at how she sees the world was awesome and humbling. I hope that my son will also be able to tell me how his brain works as he gets older. He is already beginning to. And I look to the future and wonder what occupation he will be tempted by that can utilize his special gifts. Will he be a musician or composer with his gift of musical inclination? Will he be a swimmer given his amazing lung capacity and ability to swim like a fish since he was 3? Or will he be a sound effects master, creating all the sounds of life around us that most of us shrug off and disregard and that he can reproduce because that is how he experiences our world best, through sound? The possibilities are endless. I loved the part where she was reciting a line from a movie over and over and over again. That is something very familiar. It was also so interesting to "see" what her brain was processing when she appeared distracted. It showed me more of how her brain was working and maybe that is how my son's works in a way as well. And no longer should we be saying "find an institution" just because a child has a diagnosis of Autism, like Temple's mother was told. Our world would be a lesser place without her and her gifts. And her presentation at the end of the movie where she is at an Autism conference with her mom and she speaks blew me away. Overall, as a mom of a child with Autism, I really appreciated the way they portrayed her, her journey and loved the emphasis on her relationship with the very special science teacher. I have always known that the right teacher makes ALL the difference for my son (and for any child really). I just hope that in the future there are more of those types of teachers, who can appreciate and validate their gifts and their talents, not ignore them because they don't learn like "everyone else". I really hope they distribute this movie beyond HBO, it was definitely a "must see"!

Wednesday, February 3, 2010

So I just had another great verbal exchange with my son. It went a little like this:

Me as my son went to use the computer "OK, so I just fixed that computer this morning so I want you guys to use that the right way, I don't want you to break it again"

M: who at this point is looking at me a little quizzically "you really fixed it?"

Me: "yes"

M: "Aw thanks mom, you're the best!"

That gets the day started in the right direction!

Intro to a biomedical treatment approach to Autism - 2/4

Just a reminder that I will be doing a presentation on an introduction to a biomedical treatment approach to Autism (and related disorders) from a mom's perspective. This will be a very basic overview of what a biomedical approach entails and some beginning steps to implementing one for your child. This will cover basic dietary interventions and why they are important, basic supplementation, and will include resources to help you begin on the journey to healing your child. This is a FREE presentation at:

Coester Cares Therapy Services
4001 E. Baseline Rd. Suite B1
Gilbert, AZ 85234
480) 539-5629
4:00 pm - 6:00 pm

Call to reserve your spot.