It has been so busy and crazy and frustrating and...nice.
I'm sure if I was a really experienced writer and practiced blogger I could make about 20 thought provoking and inspiring and, maybe even, humorous entries. BUT. I'm not. So, here comes my quick update.
I changed my children's psychiatrist. Why? Because they didn't like him. No, not just because of that but it is a good reason. The main reason I chose to switch is due to their unwillingness to tell him what he needed to know in order to make appropriate assessments and recommendations for their medical care. Proper information in critical when making choices and decisions.
It seems like this would have been an easy thing to do, however; it was not. I had to spend forever on the phone with clinics and Triwest to figure out if I even COULD financially. Once I figured out a place I could go to with our insurance, I wasn't able to get both my children in to see the same doctor so I took two appointments with separate psychiatrists. T got Dr W and E got Dr A.
Dr A was an instant fit. We met with him E felt better about him than our old Dr S and we really liked that we could actually understand what he was saying--as opposed to the almost silent super mush mouth from Dr S.
Dr W, on the other hand had me spinning from the first 5 minutes of talking. He wanted to change T's diagnosis immediately. He wanted to change his medication. He was very rigid and myopic about what we've been treating him for. I decided we could go ahead and see if he was correct. We changed T's meds for all of three days. Everyone in our family and his girlfriend were completely unhappy with how it was affecting him. So I stopped that medicine and we went back to see Dr. W. He then decided his first impression wasn't correct but didn't want to put T back on Seroquel. We tried a combo of a Trazadone and Abilify. Within a few days T was completely unhappy and begging me to get him back on Seroquel.
One thing you may not be aware of is that Bipolar comes with episodes of hallucinations. T began to experience having them again after having been successfully medicated for a year and half. I tried to contact Dr W without success for a few days. It was so frustrating. When he called very upset while he was out with friends that he was seeing things again, and BEGGED be to please get him off this new regiment and back on the Seroquel. We made another appointment to see Dr W where he lays on me that Bipolar doesn't have hallucinations and gives me three options: T has some major terrible thing like a tumor in his brain, liver failing, or some other horrific thing that we must to tests to rule out; he's abusing illegal drugs; or he's flat out lying and making this up. WHAT?!!! I have read so many things in books and online; online websites about medical things and online personal experiences of Bipolar people, and there is definitely hallucinations associated with Bipolar Disorder. The other thing that Dr W laid on me is that no matter what, he will not renew a prescription for Seroquel XR for T because he's not 18 and it isn't FDA approved for anyone under 18. BUMMER.
We leave the doctor's office with T being put back on Seroquel XR until we have all the medical tests done at the hospital. I set up appointments for T to have an EEG; blood work to test his liver, drug and alcohol screening, CT scan, and a few other tests on his blood. I'm stressed and frustrated because I'm feeling like this doctor is totally dismissing my son and his experience and trying to make them something they aren't.
I went to work searching for information about Bipolar in teens. I found support for what I had already understood. I looked on http://www.aacap.org/, http://www.pendulum.org/faq.html, http://www.askabipolar.com/bipolar-experience-hallucinations/, etc... CLEARLY hallucinations are, indeed, not uncommon.
I also focused on the differences between Bipolar in adults versus adolescents. I'll just mention one here: cycling with adolescents and children can happen within a day, their cycling is much quicker or you could say their cycles are smaller than an adult who would normally have a mania period for longer periods of time. This is important to know for later.
I take T to the hospital to get his labs done and to get his CT scan. This shouldn't be long. WRONG! Dr W asked for an alcohol screening but the hospital didn't recognize the test called for and because I try to to as early as possible to avoid waiting for years we were at the hospital lab an hour before Dr W shows up to work at his office. We had to WAIT!!! Ugh! After waiting for a long time--felt like an eternity, we went down to radiology to get the CT scan done. Over an hour after registering at the lab we finally get word that the hospital knows what they need to do. The morning was stressful, maybe I'll post about that later.
A few days later I am tasked with keeping T awake for 24 hours and deny any medication for his EEG. Bleh.............................
I cannot tell you how much I never want to repeat that!
We go back to Dr W to find out the results of all this testing and find out T is looking just fine and that there is nothing wrong structurally in his brain, nothing wrong with his liver or thyroid, there's not any sign of drug or alcohol abuse. So now it's between Dr W being ridiculous or T being a storyteller of fiction.
Talking with Dr W I have to let everything out. Hold nothing back. In our conversation I let him know I'm frustrated and feel he's not helping us. I let him know I don't feel confident in his work because I'm not seeing any analysis to psychological test to support his dismissal of an established diagnosis. I told him I felt like he was pretty much disregarding every single thing we've been telling him. He asked me if he had agreed with me from the get go if I'd feel differently. My answer: I don't NEED him to be Bipolar, it's not my life's work or mission to have him be Bipolar. I have had three different established professionals tell me T is Bipolar, you're new and suddenly telling me he's not. I want to know that before we go dropping a diagnosis or changing it that there's been real and proper investigation.
I had to field some more questions about his behavior and he mentions mania being an experience a person has for at least 8 days at which point I have to interject that this is not true of adolescents. Once I started stating facts about adolescent Bipolar, and once I began using terms like: hypomania, euphoric mania, and dysphoric mania, there seems to be a total shift. Bigger the shift when I mentioned Dr K's name and his opinion that T is, indeed, living life with Bipolar. (Dr K is a very well established, highly regarded Psychiatrist who is married to a well know Pediatrician)
This has been yet another example of being your own advocate and, especially, your child's advocate. Every professional is a human being, fallible, tired, bored, energized, polarized regarding different things and everything we do, everything we think, everything we say, and everything we choose is filtered through that.
I left that appointment with a completely different rapport and opinion of Dr W. He gave T another anti psychotic medication to replace the Seroquel XR that is FDA approved for youth. The Risperidone has been the best change for us. It is working pretty well.
We had an appointment with Dr K after all of this nonsense, that happened within a small window of a few weeks, he was entirely unimpressed by Dr W for his comments about Bipolar and T not showing symptoms of being Bipolar. He went through the symptoms with me and reviewed assessments of T from previous visits with Dr K. It was completely reassuring and I felt entirely vindicated.
This is the activities regarding health I've been working with regarding T. Doesn't that seem exhausting? In another post I'll tell you about the trials on the trail with E that spanned this same time period, and A, and M, and what"s going on with Mark and I.
If you made it to the end of this, you need more to do! ha! Sorry it was so dry but it was a LOT.
Love to You and post to you later!
