When your doctors cannot agree

Over the course of our journey we have seen many… MANY different doctors approached from many different avenues from holistic medicine to conventional treatment methods and everything in between.

One would think that when it comes to diagnosing someone it would be text book simple right I mean there are manuals for these kind of things and everyone is trained in the same way although the course of medicine has of course developed and changed over the years as it stands there are general manuals and guidelines that are supposed to be used by all professionals at the given time of making a diagnosis.

However I have seen the course of a complex case and we have had more than our fair share of internal disagreements between us as parents and the professionals and we have even had professionals disagreeing among ourselves and a literal team of professionals meeting up together and not being able to help us or to come to an agreement of exactly what we are dealing with and where we need to go as far as treatments and therapies are concerned, which begs the question of when do you decide to go against the grain of what you are being told and go with your gut instinct or who do you trust and what do you accept if not even the paid professionals have an answer for you or what you are being told does not match up or help your case.

Over the years I have met many moms who have just stopped attending conventional therapies and treatments and who have chosen to go along with their own thing and quite honestly I cannot blame them; we have had so many people tell us so many different things and we have followed each of them believing that we of course are just general folk who know absolutely nothing about anything, other than what Dr google has to offer and who are we not to agree and go with the flow, there is also that bothersome nagging feeling that whispers in your ear- the what if, what if we choose not to follow and do as we have been told and then something happens or goes wrong or gets worse!?

From personal experience I can tell you that you are your child’s or loved ones biggest advocate and that whilst we may not be trained professionals there is so much knowledge to be gained just by traveling the journey and experiencing what your child or loved one experiences or feels! I find it to be a complete red flag and insult when a doctor or professional is dismissive of the feelings and thoughts of the family and those who are actually living with the person or child involved, no one no matter how much they have studied or how long they have been practicing can replace that.

This is one of the reasons why we wanted an admission for so long and so badly because quite frankly I was so tired of not getting anywhere and spinning the same stories to doctors and having them look at me like I was off my rocker because the child they sat with for an hour once or twice a month was not the child I was telling them about from a home and school perspective, for years we have been saying we are missing something, there must be something more, something isn’t right- and here we sit at the end of the day with an entire team of professionals not knowing what to do because one group of doctors says it is all to do with my sons autism and his OCD and the other doctor is saying it is not autism at all it is conduct disorder and psychopathy, here we are in the middle saying the reason you cannot agree because it isn’t as simple as one or the other, he displays symptoms of both sides of the coin why is it so hard to believe that it could be both or is both- well the answer is because they have never had to deal with this kind of case before and they cannot give us the answers or a direction to follow.

I had known for many years that my son is on the spectrum, reading up about it and watching friends raise their spectrum kids was a complete AHA moment for me, but by the time the doctors brought it up I had all but given up and dismissed my feelings thinking I was seeing things that simply weren’t there because I was told over and over again that it was nothing more than ADHD! It was the initial start of our journey all over again when I just knew in my heart that something was amiss and no one wanted to listen to me and everyone dismissed my concerns until we got to school going age and it couldn’t be denied any more.

The problem is that we now sit in a position where we are just so unsure about what to do and what advice to follow; in my heart and from my experience I agree wholeheartedly with the autism diagnosis, I understand the OCD diagnosis as I myself have OCD I understand the drive and that you just cannot help it, even the conduct disorder and psychopathy diagnosis is something I can understand even though there are so many things that go against that there are just as many things that confirm that diagnosis, I honestly believe that all of this coupled together means that my son is a rare and extremely complicated case that very few professionals have ever dealt with or know how to deal with, most professionals are used to dealing with 1 maybe 2 conditions or conditions that are typically co- morbid but when you are faced with a bunch of conditions that aren’t easily found together I think it is just something that is difficult to both accept and treat, often the usual therapeutic interventions for one ie autism are not what one would use to treat the other ie the psychopathy throw in the high IQ and my sons ability to manipulate a situation and sell ice to an eskimo and no one knows what to do, so who do we trust, what do we do and where do we go because we have been told by the one doctor that they will no longer treat my son if we choose to involve another doctor because they disagree with what that other doctor has to say but if we aren’t getting anywhere what are we supposed to do.

My son is 12 every professional has told us we have until the age of 15 to ‘ground’ his issues or he is basically a lost cause, do they even comprehend how it feels to hear that as a parent when you have done absolutely everything you can and are supposed to have done, every single professional has said they would stand beside us in a court room to argue that we have done everything we can but no one can give us an actual answer or direction or agree on the same thing; we are faced with putting our son into an extended behavioral program where we will have to send him away for 2 years or more, as a parent that is heart shattering, so much happens in 2 years how much are we as a family going to miss- even his 13^th birthday and  I am not even sure this is going to work but as we stand it is literally the only option available to us so what else can we do?