It has been a long time since our last update. We've had a wild roller coaster of a ride the past weeks. There is a lot to report.
The end of February and beginning of March Cameron was fabulous. He took another leap forward. The most notable was his drawing. The fact that he was drawing at all was new. But he was also prompting the drawing.
Once, I arrived to school to pick him up and take him to a therapy appointment. His class was having free time and Cameron was at the easel drawing a picture of a race. It was complete with race cars, race track and a pit. I was so overjoyed that I allowed him to complete the drawing even if it meant we would be late for his therapy appointment.
A few days later he came home with a drawing of a person. I asked him who it was and he told me it was himself. I asked the teacher if this was a project or self prompted. Indeed it was self prompted.
Before Cameron was born I worked as a therapist. At one time I worked with small children in a psychiatric inpatient setting and I often did art therapy with them. Knowing Cameron's physical and medical history the self portrait that he completed was astounding to me. I would like to share this portrait with you and point to some of its features in relationship to my son.
First, the majority of the portrait is yellow. This could have a couple of meanings such as: Cameron has blond hair and is fair skinned, but it is also a color often associated with jaundice and liver overload.
The only other color in the picture is his blue eyes. They are drawn very small/narrow and carefully, yet they seem to sparkle in relationship to the rest of the portrait. This seems to represent the narrow field of vision we know he has. While vision becomes the dominant sense in humans, this is not yet true for Cameron. However, they are also bright and colorful compared to the rest of the picture and seem to be looking forward and full or hope and promise.
The other features of his face, his nose and mouth are large and jumbled together. This is one of the most amazing pieces of the portrait for me. Cameron has neuropathy. He is particularly affected by numbness in his face. We know he continues to not be able to feel his lips (the feeling in his tongue just returned in the recent weeks), and he has no sense of smell at all. Likewise, his feet and hands seem to be big clumsy and jello like, but also disfigured, uncomfortable and potentially painful. We know that these are areas he has particular difficulty with, both with neuropathy (mercury often sits in the tips of fingers and toes) but also because of parasites. Cameron chews on both his fingers and toes on days of high parasite activity.
The saddest part of the picture for me is Cameron's hair. He does have short blonde hair. The portrait seems to display his hair as standing on end, painful and fire-like. I can only imagine that his cranium is hurting him desperately. But it may also represent the anxiety he feels about his health.
Our Roller Coaster goes into a Full Tailspin
Cameron became ill more than 4 weeks ago. First with vomiting and diarrhea, then an ear infection, pink eye and bronchitis. It's been a very unusual illness for him. Apparently it is some sort of viral-bacterial combination strain. Most of the kids in school have had it. The NT kids seem to be getting through it fairly well. Many of ASD kids have been holding onto it longer. He seems to be getting better for two or three days and then awakes early vomiting and heads downhill again for several days. Each time we think he may have completely kicked it, the next day he hits bottom again. It's been very frustrating. In the meantime, he has also regressed. For several days he wasn't able to hold anything down. We were told to take him off of all of his supplements and not only did his health seem to get worse, but he seriously regressed. For one week straight he had to be held. He was on me (sitting or being carried) all day every day. He began stimming and scripting. I decided to put him back on his supplements and he began to get better; both health wise and ASD symptoms. However, he is still several steps behind where he was a month ago and he still has been unable to completely overcome this germ that has infiltrated his body. His immune system has just not been strong enough.
A Very Large Piece of the Puzzle has been Diagnosed
The Lyme Disease test results have come back for myself and the children. I'm still trying to nudge my husband into the lab to get his blood work completed. We ran both an IFA test and the Western Blot (IgG and IgM) through IGeneX lab (the gold standard for Lyme testing). All three of us came back positive for Lyme disease. It appears that I had been infected prior to becoming pregnant and then unknowingly passed it along to the children while pregnant.
It is very disappointing and upsetting to have to deal with another health issue. However, in some ways we've been dealing with Lyme for many years. We just didn't know that the symptoms each of us was dealing with were due to Lyme Disease.
For myself, symptoms have often been excused by autoimmune disorders. Megan's symptoms simply never had an explanation. After being told there was no medical explanation for her array of symptoms (anemia, fatigue, anxiety, swollen glands, growth issues, joint pain and more) we began homeopathy last fall with a significant amount of improvement. Now we understand that the homeopathic remedies she's been taking are also recommended treatments for Lyme.
In Cam's case, Lyme Disease led the groundwork for everything else that followed. Being born with Lyme disease meant that his immune system was already seriously compromised making it extremely difficult for him to be able to process the viruses and metals/toxins in his vaccines. Many Lyme Disease patients also have heavy metal poisoning due to their suppressed immune system and the acidic environment that is created internally which allow both metals and Lyme to thrive. With Lyme disease, high testosterone levels and weak genes, our baby boy never stood a chance against the viruses, heavy metals and toxins that were injected into him as an infant.
So we are set off on another piece of our journey. Thankfully we have discovered this piece of the puzzle. Without finding it, Cameron would probably never had been able to completely recover as we would have continued to battle a disease we didn't know existed within him. Lyme would have continued to fight our efforts to pull out metals, improve his immune function and heal his brain and nervous system.
I'm certain fighting Lyme will be an uphill battle. Especially since I will need to fight my own Lyme as well as both children's at the same time. However, I'm also feeling very hopeful because knowing this disease lies within my children and myself also means that we can fight it and that we know exactly what we are fighting.
Our DAN doctor wants us to see a Lyme specialist who will then work in coordination with her on Cameron's autism treatments. We have scheduled an appointment for next month with someone she recommended in Missouri who can see the whole family.
We are also headed to the Lyme Induced Autism Foundation's Conference in June. We've decided to skip the other spring/summer Autism Conferences this year in order to afford to attend the LIAF conference and immerse ourselves in the issues surrounding Lyme the way we had when we first set out against Autism and Mercury. I look forward to bring that information back to you as I become familiar with it.
April is Autism Awareness Month
The Oprah was a very good start to Autism Awareness Month. The Autism community has been asking the Oprah Show to do a show on Autism for many years and she has always declined. Finally, last week she aired her first show on Autism.
We've been told that the Oprah Show producers warned the parents on the guest panel that if they mentioned vaccines they would be taken off the show and anything they said would be edited out. However, Oprah herself asked the pediatrician on the guest panel about the vaccine-autism connection. The doctor denied any connection and the show went to commercial shortly afterward. When they returned Oprah invited Katie Wright-Hildebrand (mother of a child with ASD and daughter to the founders of Autism Speaks) to address what the doctor stated about vaccines. She informed the audience that the doctor was wrong and that studies have proven a connection. Katie also went on to explain the particulars about the role that vaccines play in autism and specifically in her own son's case; but all of that was later edited out of the show prior to airing.
I pray that Oprah will be encouraged to do more shows focusing on this national epidemic. I also pray that more shows and other media will be willing to begin airing the full story about Autism and not allow themselves to be bullied into helping the government and the pharmaceutical and insurance companies hide the truth about the causes to autism, the treatments available, the lack of educational support and the lack of insurance reimbursement for treatment. I encourage you all to let the media know that you know the truth and want it to be reported!
Apollo and the HBOT
I keep forgetting to share this story with you.
When Cameron and I dive in the HBOT, Apollo insists on sitting right outside of the HBOT. When others are in he sits up there near the HBOT , but when Cam and I are in he often lies right up against the unit and seems to guard us.
There was one day that he did not stay up there with us. I thought it was very odd and that perhaps he'd just gotten used to the HBOT and wasn't afraid of it anymore. However, when the hour was up and I went to depressurize us I realized there was another reason Apollo didn't stay for our dive. I had forgotten to pressurize us! We spent the hour at sea level and Apollo was the only one who noticed!
A couple of months ago Cameron and I were in the middle of a dive when I began feeling strange. My chest was hurting and my heart was beating irregularly. I dismissed it as an anxiety attack even though it felt much different than any anxiety attack I had previously had. When it began, Apollo stood up and began barking. Apollo never barks! My husband ran upstairs to check on us. He looked in the HBOT and asked if we were okay. Because I wasn't feeling well enough to discuss my situation through the chamber and its two very loud generators, I waved him away and nodded. So my dear husband headed back downstairs.
Apollo didn't appreciate that much and began barking again as if to say, "Hey you idiot I called you, but you came all the way up here and didn't do anything!" So Scott checked all the valves and looked in at us again and then told Apollo to stop barking. When our dive was over I reported to Scott, "Apollo is not an idiot, I was having an anxiety attack and wasn't in a place to talk about it."
Poor dog! But we all felt very proud of him. We're even more confident now that if something were wrong with Cam (seizure or something) Apollo would be able to notify us even if Cameron couldn't. We also now know not to ever ignore Apollo even when everyone says that they are fine. Apollo knows better.
Here's a picture of Apollo guarding the HBOT with Grandpa inside. The big wood thing in the corner is the FIR Sauna.
My HBOT reactions
So now it seems that my difficult HBOT reactions all have a sound reason. Each time Cameron and I begin a series of dives, I become unbelievably ill. The reason for this and my strange anxiety attack feeling all appear to point to Lyme die off. HBOT is one treatment for Lyme.
I've only been as sick as this one other time. Several years ago I was given massive doses of antibiotics for an infected wound on my leg I became equally sick. Those massive doses of antibiotics were also another common Lyme treatment.
I haven't done either treatment long enough to recover from Lyme, but long enough to have die off reactions. It surely doesn't make me look forward to the next several years of battling my own Lyme and watching and helping my children battle through theirs. I am certainly looking forward to getting to the other end of recovery for this family!
This site was last updated 01/09/09