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 whole host of scenarios that one can come up with that might make a baby switch into fight or flight mode.  Can a babies senses really be put on a constant life-long high alert from any trauma early on that seems life threatening?  I am not sure but the more I read the more I think maybe it can.  I do know many adults who suffered significant trauma in their childhood and as adults STILL have issues related to personal relationships,  sleep,  anger and anxiety! I am not the only one who thinks this of course.  Heather T.  Forbes has rescued our house in her pioneering “Beyond Logic, consequences and control” approach to parenting dysregulated children,  and Dr. Bruce Perry,  who if you visit his page will give you an indepth free online course in child trauma and the brain’s reaction.

As strange as it sounds,  I am excited that this actually may become a diagnostic tool and the therapy will be tailored accordingly – behavioral rather than medicinal,  because often the medications just band-aid the problem they don’t resolve them in the long term.  I,  luckily am already on the path of working with PTSD because it made more sense to me,  hopefully we will continue to see the gains we have already begun to see.

2 Responses to “Developmental Trauma Disorder”

  1. LT says:

    I’m so happy for your family that you’ve made such progress! Something confuses me, though. In reading your blog, you mention Heather Forbes and Ronald Steven Federici. I have read that these authors practice holding therapy, which the APSAC calls abusive. Many practitioners have lost their licenses and some children have died in holding therapy. I was confused because it seems like there’s a disconnect between what you write in your blog and what these authors practice.

    • Admin says:

      I hear you and I do believe that holding therapy was a practice in a Colorado facility. I know Heather Forbes is based in Boulder but I know she was never part of that clinic. I also know that Dr. Federici is based in VA so I am sure he wasn’t either, but I am totally open to being wrong. I like to write from personal experience so that doesn’t help me here. I can only imagine and hope, that as with everything, therapy has moved beyond this practice. I absolutely agree that from what I have read, holding therapy is an awful practice and there were cases where it did cause harm. Again, from my personal experience, Heather Forbes is a connected parenting advocate and never advised or advocated for holding therapy in any conference, webinar I have attended nor in any book of hers that I have read.

      My understanding when we met Ronald Federici was he was a practitioner who specialized in adoptive families. We needed a psychological assessment and while we were looking for someone to administer that, we got referred to him. We spent 2 days with him and not one time did he mention holding therapy to us.

      I am truly sorry you are so confused. That must be an awful situation to be in. My personal experience and what you have experienced with these practitioners is so different. I suppose it must be difficult to read that our personal interactions were much more positive than it sounds like yours were. I hope you resolve that in a manner that helps you and that you write about your personal struggles with them on your blog. If you supply me the link I will be delighted to link to that blog so that people can see the two different personal experiences with the same providers.

      Thank you for taking the time to write, I hope you can move forward with a different therapist. I can highly recommend connected parenting to you. I know you don’t care for Heather Forbes, but perhaps Karen Purvis’s information or Danial Siegel or even Dr Ross Greene would be a good place for you to focus your reading. Actually, also maybe explore Bessel van Der Kolk’s books or even Bruce Perry. Both of those practitioners have what I consider to be exceptional books and are also huge advocates for connected parenting styles. I don’t believe any of those people will tell you to use holding therapy either. I hope this helps you.

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