Friday, February 14, 2014

The Email I Just Sent To Thomas' Therapist:

I need to get something clarified. Do you believe that Thomas should stop his medications either now or down the road? Because what I heard yesterday is that that is something you are advocating.

Let me clarify some things for you also. First, I wholeheartedly believe that it is Thomas' choice. He is an adult and it is his body and his choice what to do. However I also believe that he doesn't have the capacity to make an informed decision about this all on his own. You have said yourself on more than one occasion that he is "highly suggestable" which I thought you would take into account before revealing yesterday what you read about "a small community of people in England who believe that medications aren't the right choice for schizophrenia". You are Thomas' therapist and as far as I know, he trusts you and looks to you for your opinion so it stands to reason that if you suggest something like you did that he will put credence in that thought based on the fact that he trusts you.

What baffles me about that whole exchange yesterday is that if you believe medications aren't the right choice for Thomas--which goes against everything you have said in the past--then what are our options? If you believe that therapy alone would be what remains to help Thomas through his illness then I would argue that therapy hasn't always been successful especially when it comes to his well-entrenched delusions and the intense anxiety that he gets locked into from time to time. Both of those things we both have attempted to change using our unique skills and that has failed time and again. I think that was made quite clear even yesterday when we discussed Thomas' self-esteem and how it's virtually non-existent unless of course he is wrapped tightly in his delusion and using that as his source of self-esteem. It seems to me that if a person's only source of self-esteem comes from a well-entrenched delusion that that is the product of a very unhealthy person.

I willingly admit that his delusions are almost impossible to treat as I have heard this from multiple professionals from the less educated but very experienced psychiatric nurses all the way up to several highly educated doctors. I have almost made peace with the fact that that is who my son has become--the sum of his delusions--however while those may be difficult, if not impossible to treat, there are other symptoms (some of his hallucinations, his paranoia and his anxiety) that are products of those delusions that have responded to medications and that Thomas has repeatedly told me that he was thankful for the medications that helped him through those rough times.

You mentioned side-effects and that you "want Thomas to be happy" and while I want that same thing for him, I believe he will have to endure some side effects in order to reach a place of happiness. As for the side effects, I think they are a necessary evil that comes with treating schizophrenia but I also think that they are not a permanent nor untreatable condition. Let's take his tachycardia for example. I watch that every day, 3 times a day. I am very well aware that he is dealing with that. I am also keeping in close contact with Dr. N and informing him of Thomas' progress or lack thereof and we are doing everything we can to help lower that. The choice so far has been to slowly decrease the clozaril and so I consider all of this to be an attempt to alleviate a rather nasty side effect.

Thomas is not left to endure side effects alone and has myself and Dr. N. working to make a better quality of life for him where side effects are concerned. At the other end of that has been the addition of the Latuda. With my careful dispensing of that particular medication in an attempt to lessen side effects, he has appeared to tolerate that particular medication very well and has, in fact, seen pretty decent results from it. I have stood by day after day after day for weeks and weeks and watched my son disappear and it has only been with the addition of the Latuda that I have seen him come back to me in a big way. Not only does he have light in his eyes, not only does he smile, not only does he eat now, not only is he now less agitated but he is now also opening all of his curtains in his room (including the ones over the window that look directly into the neighbor's living room) and he keeps them open sometimes till well past nightfall. I do not believe for one second based on my vast experience with him and his illness that these changes came as the result of some spontaneous remission. I believe wholeheartedly that the changes I see came from the Latuda or the combination of Latuda and clozaril.

While it's true that not every course of anti-psychotic has brought about success, there have been some (like the Geodon) that I consider saving grace's that brought my son back to a relatively stable place. Back then and now he would say that that medication made a difference and I believe that as the meds he's on now continue to clear the cobwebs in his mind that he will say the same thing about what he is on now. With everything in life there is both good and bad. I do not believe we can have one without the other. What we can do in those instances is do everything in our power to find ways to cope with the bad and celebrate the good so that balance is found inside each trial.

I would like to ask something of you and it is a favor and would be considered a privilege on my part. In the future when you want to drop a bomb like yesterday's discussion about stopping meds, would it be possible to give me a heads-up beforehand? More than anything yesterday my concern about that discussion was putting Thomas through witnessing our debate, my anger and your insistence. He does not need conflict in his life, it serves zero purpose to subject him to that and yesterday's exchange amounted to a conflict that I believe should have been avoided. This is not to say that you can't express your opinion about an option for Thomas however if it's going to be something so polarizing that is going to elicit a lively debate then I believe it is a good idea for you and I to discuss it beforehand so that we can present a unified, balanced, conflict-free option for Thomas. It is my opinion that including me in these sorts of revelations like yesterday are crucial but I am of the mind that we need to make all things about Thomas and his treatment options a team effort presented to him in a safe, calm environment. No purpose will be served if drastic options like discontinuing meds are presented solely to Thomas without my knowledge or for me to do the same to you. I have made every effort to include you in decisions I have made about Thomas' well-being and often have done it through emails days before a session so that you could carefully consider a course of action. I have, from my side, made every attempt to make Thomas' treatment a team effort because I believe that this illness needs that kind of approach. Thomas can barely follow one line of thinking and process it as you well know and even experienced just yesterday therefore if myself, you and Dr. N. all came at him with differing points of view all that would do to Thomas is confuse him and complicate his treatment as he struggles to sort out all that he is hearing.

So, if you believe stopping medications now or at some point is an option for Thomas then I would appreciate some literature or web links to literature so that I can review them and be sure that I am not being completely close-minded. Since Thomas has gotten sick I have been nothing but flexible and diplomatic to any party that has had suggestions and I have afforded you that same respect. I am not an over-protective mom running chaotically and uneducated. I have heard and read the opinions from many many sources including research articles, schizophrenia foundations, books, newspaper articles and experienced opinions of other caregivers of people with schizophrenia as well as taking into consideration what Thomas' own doctors put forth. All I expect in return for my flexibility is a heads-up and some time to consider what will be presented to Thomas, if only to lower tensions in his presence.

Please give some consideration to what I have said here and please pass along any information you might have supporting you point of view yesterday about medications.

Thank you for hearing me out,
Melanie

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