By ThinGuy on May 09, 2008
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).