Diagnosis: Autism
It's been a while since our last update on Bellamy.
Bellamy has slowly progressed with the help of Nevada Early Intervention Services. She has started attempting words, and seems to understand much more than she did even several months ago. However, with her non-eating issues and sensory integration disorder needs, we thought it was time to do some private therapy on our own.
A friend gave us the name of a great occupational therapist, who has taken Bellamy under her wings. Tania who runs the Achievement Therapy Center has become an angel to us, as well as her assistants, Jodi and Julie. They are going to work on waking her nerves up, stimulating her vestibular sense, as well as her feeding skills. We are taking baby steps with this process, but we can see little changes with every session.
We also went to see a DAN! (Defeat Autism Now) doctor. DAN! doctors take a biomedical approach to autism. It is the belief the too many antibiotics can destroy the gut, then add vaccines on top of this issue, and you have severe problems. We share the belief with the DAN! approach that vaccine injury results in autism. As a baby she had far too many ear infections and antibiotics to keep track of. Then, right before Christmas in 2006, she had a shot while starting to get sick. We really debated taking her to the ER on Christmas day. The day after she was diagnosed with pneumonia. She never really was the same. She lost all her words, became less engaged and we truly feel that is when we lost her.
As part of the initial DAN! work up, we had several labs drawn, including a urinalysis for heavy metals. We recently received this back, and found that she is both moderately toxic with mercury as well as xenobiotic toxic (most likely from antibiotics). We are still feeling sick about this. We have a plan of attack with the DAN! approach. We started her on MB12 injections to try to stimulate some more language (she has been attempting many more words since we started). We are also treating her internally for yeast that was caused by antibiotics and has seeped through her gut into her blood. Once we can try to heal her gut, we will then try to pull some of the toxins out. A long process, but it must be done one step at a time. For those that believe that Thimerosal (aka mercury) was removed from all vaccinations, that is bad information. Starting in 1999/2000 it was starting to be removed, but it is still present in some vaccinations, including infant flu shots. If you want to watch a story that nearly mirrors ours, watch the story of the Hannah Poling. Ask your doctor if there is any thimerosal in the shots. If they don't know, wait until you can get a 100% sure answer. Demand proof. We are huge believers in changing the vaccination schedule. Do one shot at a time. There is no reason whatsoever that a child should be subjected to 5 or more vaccines at one time.
Just this last week, we finally got into the best doctors in Las Vegas for diagnosing kids. They have private practices, but the cost is upwards of $2000 per doctor. Fortunately they team up for a nonprofit organization called the Lili Claire Foundation, and do the clinics for free. The only problem is an extensive waiting list. After 9 months of waiting, we got in last Tuesday. The doctors spent about 3.5 hours interviewing us and observing her. We got the words that no parent should ever have to hear: Autism. In a way we are actually relieved, because we really have known this in our hearts for some time. There were no tears on Tuesday, just an energy that lit a fire under us that will propel us to do anything and everything possible to help her. We do not know yet exactly where she fits on the spectrum, this is something we will find this out during our feedback appointment within the upcoming weeks. We have hope that it will be on the milder end, as the doctors noted that she had some promising skills already going for her. They also noted that possibly with six months of ABA (applied behavioral analysis) therapy, that she will most likely be unrecognizable from where she is today. We are now starting the process of searching for hidden funding programs, and trying to qualify, as professional ABA therapy usually starts at about $60,000 per year. No, it's not covered by insurance. At least not in most states, including Nevada. Yet.
We are doing fine despite of it all as we knew an autism diagnosis was already a real possibility. It's stressful and our lives have changed in ways we could have never imagined, but we are coping. Her sisters are a wonderful support for her, and have more love and patience than we could have ever imagined. Every little new word out of Bellamy's mouth is like a party for all of us. We are working on balancing out time for each of them, finding that balance is tough, as Bellamy needs constant guidance. We are taking one day, one word, one little piece of progress at a time. Our hope is that within the next few years she is indistinguishable from her peers, and she will be lucky enough to lose her diagnosis (which many kids have with early intervention and good therapy).
hugh sigh... I'm not sure that I have the words to describe how I feel after reading this. Sad for Bell, amazed at the strength of you guys, anger at the doctors who are always pushing drugs on our kids, happy and excited that you are moving forward with a bit more clarity. As always, you guys are in my family's hearts and prayers. Thanks for the update.
Posted by bhlackey on May 09, 2008 at 09:44 AM PDT #
Wishing for the best for you guys! Sounds promising.
Posted by Skrocki on May 09, 2008 at 09:53 AM PDT #
My cousin has Autism. I know what you mean by every word is like a party... but can't begin to understand how this affects parents and siblings of an Autistic child. Bellamy is lucky to have parents like you and Mrs. ThinGuy, who see this diagnosis as the start of helping her, not as a defeat.
Posted by DiTucci on May 09, 2008 at 11:36 AM PDT #
My heart is heavy to hear the news about Bellamy. My wife and I share your opinions concerning the use Thimerosal, the vaccination schedule, and over use of aggressive antibiotics since we observed the effects they have had on our Son. A local Holisitic family practice that uses the DAN approach has made major changes in our lives and targeted many issues with our son including yeast overgrowth and low Zinc. Our prayers are with you and we will look for opportunities to support you. Bellamy is fortunate to have parents as aware, intelligent and loving as you guys seem to be from only knowing you as a colleague and through blogging.
Posted by jeffrey reilly on May 09, 2008 at 09:55 PM PDT #
I wish I new what to say....other than I'll be keeping you all in my thoughts and prayers. I fully believe that early intervention and all the things you are doing will bring massive changes and miracles. And, now that for you know for sure what the problem is you can do soemthing about it - very promising. Big hugs and positive thoughts from Colorado to Vegas....
Posted by Barb on May 10, 2008 at 06:03 PM PDT #
If you believe that her vaccine was the trigger, then you should look into filing with the Vaccine Injury Compensation Program. Especially if you are in a state that does not provide provide behavioral services. I am in the process of interviewing an autism family that received compensation in 2002, but never went public until after the Hannah Poling decision, and i have learned a great deal on the process. It is too late for my family to file for our son because of the three year statue of limitations, but you still have time.
If you have not already taken steps to file, get in touch with me and I will point you in the right direction.
Posted by Ginger Taylor on May 11, 2008 at 04:56 PM PDT #
ThinGuy I'm so sorry to hear the diagnosis but am totally inspired by the way you guys are handling this. I'm sure you're going to make a difference for Bellamy with the actions you're taking now, and I have no doubt that a few years from now she'll be indistinguishable from her peers. I'll be praying for you.
Posted by melanie gao on May 11, 2008 at 05:46 PM PDT #
Thanks for sharing this, we will be praying for you guys.. this was such an emotional reading for me, our Lucia is about to turn 2 and she's had her share of vaccines, we will be very diligent from now on, making sure we know what is going into her. Bellamy is adorable !!!, we will keep you guys in our hearts !!!
Posted by Jorge Angel on May 11, 2008 at 08:38 PM PDT #
you can also look at DRI locally for funding.
Posted by dean ross-smith on May 13, 2008 at 07:05 AM PDT #
My son (who just turned 12 years old last week) was autism-diganosed at 2 also. I'm a SunFed PS guy (who knows Matt Hatley. Hi Matt!) It will likely sound strange to parents of NT (neuro-typical) kids, but here goes: the most productive thing my wife did for him was to quit expecting a "cure" and to stop caring about his relative position on the spectrum. Let me explain before the flames start. We are doing similar things as you about mitigating the leaky-gut problems (he's on a gluten-free, casein-free diet and has been for 6 years. Very hard on his Mom making bread and desserts with no wheat and milk with no... well, milk, but the results are astonishing WRT stimming, etc.)
We make efforts to get him socialized as well as possible, but he, like me, doesn't want the same things other kids do. He's unique--his world can't be "cured" because it's a way of being. At this point I would think it equally ridiculous to try and cure the 1-inch-deep talkative nature of, say, Sun ISO Reps :) Don't get me wrong, I think autism onset can be prevented just not autism itself once it's diagnosed--just mitigated--further it may even be adaptive and advantageous for the species. My son, like me, enjoys dark places with little noise, the hum and glow of the computer, and talking honestly with the 4 people who understand him instead of shallowly with the hundreds who don't. We discovered 5 years ago that I'm also "on the spectrum" (but it's not at all obvious--hence the reason I made it to the age of 38 with no diagnosis.)
My rambling point (after living with my son's autism for 10 years plus the 2 non-autism years) is that there's hope because of his world not in spite of it--a world which BTW I have to join (not the other way around)--though that world bears no resemblance whatsoever to that of most people. He speaks very well to others now and is writing, just started learning math, etc. So, he's not on the NT-kid schedule, he's on his own schedule (with it's own hidden rewards that NT-only parents will never experience, I might mention.) There's value in the autism world for it's own sake--not that it's something anyone can see on Day 1 of the diagnosis :) I wouldn't choose it for my son if given the opportunity of a do-over, but mostly just because of other people's misunderstanding head-crap, not because he's unhappy.
Posted by Rob on May 27, 2008 at 06:28 PM PDT #
Hi Kids, After being in the hospital 5 times in the last 5 Months I finally found the e-mail that your Dad had forward to me. My heart is with all of you but your your Mom and Dad are so elated over Bellamey`s progress that I`m sure you can feel their emotions! I just want you to know that she is in my prayers daily. I love you all very much! Aunt Jane
Posted by Jane Roberts on May 31, 2008 at 08:17 PM PDT #
I came across your post, and my heart broke for you because I remember in December when we got the diagnosis for our little 2-year-old: autism. Your story is similar to ours. Like you, we propelled ourselves into everything we could for him--biomedical treatments (DAN! protocol), ABA therapy, etc. I truly believe that there is a lot of hope for these kids, and word of recovered children keeps me pointed due north whenever I start to waiver. We're seeing progress. One thing I realize is that when the adrenaline wears off that you have to prepare yourself for the marathon, and it will refine you and define you as a person in so many ways. Just know that there are others like you that are in this race with you. My husband and I are posting our journey on our blogs, and they may be of help to you for resources as you move through these early days: www.hopingnotcoping.wordpress.com and www.1in150.wordpress.com. Blessings.
Posted by Tahni Cullen on June 10, 2008 at 08:57 PM PDT #
jeffrey reilly, I agree with you
Posted by 94.41.65.92 on November 01, 2009 at 01:27 PM PST #