2 PANS kids fighting lyme and coinfections, our journey to healing

Developmental Trauma Disorder

I fought against people for so long,  endured weird looks and obligatory ‘urm yes it is possible’ comments from multiple professionals who I have encountered in the quest to help our son and not one of them has explored this seriously or really paid any attention to what I have asked about the relationship between his first 7.5 months and the problems that have been evident since he was about 12 months old.  I have asked,  “does his first few months have any relation to his night terror problems” “does he have a developmental delay because of his early experiences” “Is his hyperactivity anything to do with poor developmental care in his first months?” and so on and so forth.  I usually get a little discussion but mostly we move onto well maybe, but what do we treat his ADD/PDD/RAD with now!?  I get that, I really do, but shouldn’t we at least start at the beginning? It seemed possible to me that he was suffering trauma.  In my other posts I have mentioned that I believe he has a form of PTSD but no one has ever really agreed with me or pursued that treatment protocol specifically. So I have recently been reading about a new classification for the DSM-5, it hasn’t been entered yet it is just something they are considering entering on the next publication.  For us,  it fits!!!! “…  Dr. van der Kolk opined this lack of an adequate diagnostic code resulted in dangerous consequences for kids. He estimates that as many as 8 million children in the U.S.A. have been diagnosed with Bipolar Disorder and/or ADHD and prescribed large doses of medication. Yet, he’s observed the root of the problem for many of these kids lies in disrupted attachment, abuse, or neglect that is often left untreated. Similarly, as abused kids reach adulthood they are given diagnoses of recurrent depression, anxiety disorders, personality disorders, or somatization disorders because they don’t match the current criteria for PTSD. Not only do these patients have to live with the stigma of other diagnoses, but it also leaves the root cause of the problem untreated. … ” Personally,  I believe that this happens to both biological and adopted kids. Think about a traumatic delivery where either the baby or the mother has to fight to give birth or stay alive even, maybe even a traumatic in-utero experience such as  a car accident or a fall, a disrupted attachment with a significant caregiver,  an adoption, foster care, domestic violence etc.  there are a...

Ingenious Minds – Science Channel

The Science Channel has launched a new series that began last week, that offers a peak into the minds of various savants around the world. While I was watching it on my DVR last night I realized (again) how little we really understand the human brain and how amazingly plastic it is. The first savant, George Widener, explains both his aspergers and his savant mind, and explains how it is both a blessing and a curse to him. His artwork is phenomenal but at one time he was diagnosed with a “schizoid” personality disorder and became homeless.  George turned his life around, partly after meeting Kim Peak. An amazing story of resilience and perseverance on George’s part. My own thinking over the past 12 months has led me  to question how we actually ‘label’ these children. Yes he is a savant with some significant social issues but there is so much more to George Widener, things that could have been cultivated in him from an early age. His brain scan shows how his own brain circumvents the normal avenues for processing and makes it’s own connection previously unseen by neurologists. Who says our kids are not just evolving to new heights, utilizing hidden parts of their brains or processing faster as they are inundated with multi media 24/7? Do we really know enough to label these kids with “disorder or deficit”? Worse yet should we focus on these behaviors as deficits? Does it then become a self fulfilling prophecy? I think I am guilty of this labeling for sure. My son acts out and I find myself silently cursing his ADD/or PDD or RAD. Watching him as he rages on, or pounds his sister, or fails to complete his homework. Now, (and obviously not because of this one video or tv show) I am becoming more interested in his brilliance (he is not a savant I might add) and the times where he is engaged in an acitivity he enjoys. It is truly amazing to watch how focused he can become while he is building Lego towers and towns, or constructing Radiator Springs with his CARs characters. I have been very guilty of managing trouble or holding my breath waiting for negative behavior instead of trying to find other outlets for the energy as I see it begin to emerge. Of course it isn’t as simple as just not labeling. That would be very naive on my part because his behaviors certainly exist and completely  limit our family activities, but I have been making a more conscious effort to engage that creative ability in...

Dr. Oz, the Autism Support Network and Dr. Mercola.

I only posted this today (Mercola’s article) as yesterday I was reading that 1 in 110 children now are being diagnosed with autism! 1/110!!! When our son was diagnosed there was 1/150 – which I thought at the time was terrible enough. Now the numbers are staggering and continuing to climb yearly. I think almost all of us now know a family touched by a spectrum disorder. So I also ask the question “what’s going on here?”. I am not actually anti-vaccine, although I believe that the people who choose not to vaccinate do so after reading thousands of hours of information. I do think its a valid topic to include on this site, simply as people are still so confused in the vaccine debate. The whole Andrew Wakefield thing has been misquoted and misconstrued for so long now, I am not sure really if its possible to view the original results of his paper, which I truly believe we all should at least read so we know the argument for and against his work. I am not convinced it is quite as simple as the mainstream media would have us believe. With anything I like to explore the for and against, and then I believe I can find the truth somewhere in the middle! I do not believe anyone who makes the decision to not vaccinate, makes it lightly. There is always a fear involved both for and against the vaccination protocols. Personally, both my children were vaccinated on a slower scale, much like Dr. Sears and Dr. Oz chose for their children. My daughter shows no adverse effects (yet) from any of her vaccinations and we stopped all vaccinations at age 3 (although for us it was actually age 5 as we were on a very slow schedule). They each had the separated measles, mumps and rubella vaccinations over the course of 6 months. I don’t regret vaccinating them nor do I know what decision I would make if I had to do it over again. My decisions have already been made, so luckily for me I don’t have to have that internal angst over whether to do it or not. I do remember that when our son had his chickenpox vaccination he was totally silent for an entire week. I called his pediatrician and was told there could not be any possible correlation between his shot and his behavior. I remember panicking and worrying  if it was going to be a permanent thing. After working so hard to get him...

Just when you think you can’t do one more thing…

It turns out you can. I have two new therapies to try. One is NeuroReorg and the other is Theraplay. Neuroreorg was recommended by a parent in a class we are taking and Theraplay I found through an article in the Good Housekeeping Magazine that my friend passed along to me. I am excited about both, especially the Theraplay as the basis of the therapy is that we do it together and it is a FUN way of making those much needed connections. Many therapists work with the children alone, or you can undertake family counseling,  but often it’s the child who attends most of the sessions, or at least that’s been our experience so far. I am looking forward to working with my son in a positive and fun way for a change. We of course interact at home, like most families we play games, we read together, do outside activities, that sort of thing but I think for us there were some steps that got missed along the way – some steps we need to revisit together. So I am excited, I know this is a marathon not a sprint but the first step needs to be taken to get going on any journey. We start next Wednesday. Neuroreorg is a similar therapy to the kind we undertook in brain integration therapy x1 I think – our first appointment is in 2 weeks. This is supposed to also address areas of the brain that didn’t develop either on time or correctly. For more information use the links above. I look forward to learning both of these therapies as we will be doing most of the ‘work’ between the two of us at home. Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

© Loving the Spectrum