Once again, I know it has been quite some time since I wrote anything, but as most of you have read my previous entries regarding Jake, I am sure you will understand why. I'm just gonna make a broad statement to start this off: I do not wish to offend ANYONE with writing this blog. That said, I will delve into some touchy areas today and I want to get them out there because they have been weighing on me for some time.
But for the most part, this will be a happy post, hence the snazzy yellow background. As most of you also know, we have been on this journey with Jake since a young age. Yes, he's just 5 now and that's still young. But I'm talking like less than 3 young. Continuously we have been told ADHD, severe, combined type. For those who don't know how it works, there are different types of ADHD and different levels of severity. There are kids that can just learn coping techniques and control their hyperactivity that way. They can 'just run it off.' Jake is NOT one of those children, Oh how I wish he were. He has the severe form, and the combined type means that he is overly hyper, overly inattentive and Extremely impulsive. People can say what they want, but I fully believe this is a neurobiological disorder, IE it's in the brain. Then we have been told possible Oppositional Defiant Disorder. These are the kiddos that when told to sit down, will stand up, even though they would rather be sitting. You tell them to write their name on their paper and they tear it up. Yes, I can see some of that in Jake at times.
We have had him tested for autism. He shows autistic tendencies but lacks some important traits and therefore is not autistic. Do not misunderstand me. I am so glad he is not. I know several people dealing with this and they deserve awards. It is such a tricky, weird, confusing thing. But I just couldn't be comfortable with the diagnosis we were given. Something has always just been off. But we are on our second pediatrician, have been to the big university hospital, and still that's what they tell us. At some point you should just accept it and figure out how to move on and deal with it. But I just couldn't picture my life that way, let alone his. How could he possibly go through life constantly angry, violent, wired for sound. There were days that he was strictly in survival mode, not functional.
Here is the part that will probably get me in trouble, but I'm going to write it, because I know there are other people dealing with the same thing and feeling the same way. Jake regularly spends the night with family members, because he wants to, and frankly because it gives me a break. He will be hell on wheels for me ALL WEEK LONG. Violent, screaming, destructive, angry, constant meltdowns, etc. So even though I miss him like crazy, and always tell my husband that I miss them too much and I want them to come home, I let Jake and Charley go. Because I need it, Jake needs it, and Charley is old enough that you aren't sneaking out on him anymore. Not a problem, right? Theoretically it shouldn't be. But here are where my feelings and insecurities regarding Jake come into play. I either log onto Facebook while they are gone and see pictures of happy, smiling faces doing awesomely fun things, that I would never have the guts to take him to do, because he is horrible in public for me, or posts about how fantastic he has been. Then we pick him up, and it is all about how wonderful he was, no problems, etc. We take him home and he is 10 times worse for me for the next 2-3 days than he was before he left. So what am I doing wrong? Why does he hate me so much that he treats me so badly and can go with other people and act like a normal little guy? I get meltdowns in restaurants and they get good behavior. So I cry, I cry a lot, and often. My own shortcomings and insecurities coming to the forefront, I'm sure. But I just don't want to hear it. I don't want to hear how awesomely fantastic he has been just to come home and try to kill me for 3 days. It sucks. Ok, rant done.
We have tried several different medicines. They seem to work just long enough to give me hope. It is odd, they will work for a little bit, but then it's like his body gets used to it, and he is back to his normal, wild self. Sometimes it will work for a month, sometimes from the beginning it is like you have given him a Tic-Tac. The most recent medicine was a Tic-Tac one. But I gave it to him because they told me to. After I called the doctor and told her how he acted on this new medicine, and the fact that he had become much more violent, angry, especially toward Charley, she said, 'Maybe we should send him to a psychiatrist.' So that's what they did, but his appointment wasn't until late November. So we took that appointment and I made my own with a different one. Word to the wise, doctors will make an appointment for your child even when they don't normally deal with children that young and don't know what they are doing. So after I called back per the pediatrician's request and found out that doctor doesn't see 5 year olds and will not medicate them, I cancelled that appointment. The doctor called and got his original appointment changed to July 30th. So we were just holding on by the skin of our teeth, praying this doctor would be the one to 'fix it'.
July 30th, 2012: The day that changed it all.
Yes, I'm being dramatic, but that's how I feel. We went to see Dr. Raymund Tan in Springfield, Missouri. Our appointment was at 11 am and we did not leave his office until around 12:55. Jake wouldn't talk to him. He asked us tons of questions and observed Jake. He is the only doctor we have ever visited that would stop talking to point out something Jake was doing that was of concern to him. His diagnosis: SEVERE combined type ADHD, Oppositional Defiant Disorder and Mood Disorder. To which I say, "Are we talking like bipolar disorder? Because that is in my family." He replied that maybe that's what it is, but at 5 you can't get a good view on the symptoms to be that specific. But maybe someday it will be labeled Bipolar, or something specific. Treatment? We keep taking the Kapvay (Clonidine) for the hyperactivity. But why doesn't this help, I ask. Because Jake's case is so severe that treating one symptom won't work. We have to find the right combination. So we are adding Abilify which, to be technical, is an A-typical antipsychotic, for the mood disorder and Focalin XR for attention and concentration. I know it seems like a lot, but it makes sense that treating one part doesn't work. At this point I'm still on the fence about the mood disorder, surely adding another label won't make a difference.
Boy was I wrong! After being informed that we need prior authorization from the insurance and another trip back to Springfield for samples of the Abilify, we have 2/3 of the medicines. We are still waiting on the Focalin. But we start the Abilify, precisely at 4 pm with his second daily dose of the Kapvay. He is like a different child. He is still sleepy while his body is adjusting. But part of this I am attributing to the fact that his poor little body has been sleep deprived for so long that now that he is doing better, it can finally rest. But when he is awake he is calmer, his mood is 1000 times better. He isn't violent, isn't mad all the time, he will let you touch him. He let me hold him, and kiss him for the first time in probably over a year. He usually cringes or claims it hurts. He has told me he loves me more in 3 days that I have heard in probably a year. He can sit and play like a typical 5 year old little boy. He enjoys Bubble Safari apparently. He has thrown nothing for 3 days. I took him swimming without help from Allen. He swam until time to go, and then he let me get him dressed and we left, without incident. We went to dinner last night in a restaurant and Charley was the one that acted out, not Jake. He is a different child.
Here is where the guilt comes into play. All those times that I got angry and cross with him for acting out; he couldn't help it. His constant bad attitude; he couldn't help it. The outward presentation of this mood disorder couldn't possibly have been as bad as what he was dealing with inwardly. He didn't want to be 'bad'. He would cry and tell you he didn't want to be, but then he would go right back to it. You could put him in time out all day long, and he would go right back at it. We weren't treating everything. We had him on one thing and expected it to work, and in essence, it was like giving him a Tic-Tac. All this time I have been placing blind faith into doctors, who are themselves, just human. I knew something was off, but I just couldn't get anyone to back me up on that. Finally, we have someone to back us up! I sit here typing this, with a snuggle little sandy-blonde head on my shoulder and tears in my eyes. I feel so guilty that he has been struggling so much for so long and I'm his Mommy and I didn't fix it. It's my job and I feel like for years I have been failing him. No, I didn't give up on him, I wouldn't ever do that. He is mine, I made him, and I owe it to him to take care of him. But I just have this overwhelming sense of failure, and guilt, mixed with immense joy because we are on the right track. But then more guilt because I wonder non-stop if this is my fault. Did I do this to him? The doctor said almost certainly he will need medicine for the mood disorder for his entire lifetime. Is that my fault, my doing? I tried to take care of myself while I was pregnant with him, and I know I have taken care of him since the day he was born. But what happened, where was that glitch along the way? I was depressed when I was pregnant with him and had to take anti-depressants, then I got a blood clot and I had to take blood thinner shots for 3 months during pregnancy. Did the introduction of those drugs cause that little change in his brain? Because if so, then it is my fault. People tell me all the time that it isn't my fault, God wanted him this way. But why would God do this to a poor baby who never did anything wrong?
But at this point, I have a renewed sense of hope. Things are good with Jake and I have a vision of what he can be in life that is different than I had a month ago. When he went to Columbia in October, he was given an IQ test and scored a 102. Higher side of average. That was on no medication at all. Dr. Tan is going to retest him once we get him lined out with the medication. His theory is if it was that high when he couldn't concentrate to save his life, it will almost undoubtedly be considerably higher when he is at his best. He said, "He is a very bright boy, I want to see just how bright he is. Because I think his score will be much higher." So we wait, we keep praying for good days and prepare for the bad ones. Because I'm not stupid, I know they will come. I just hope they come and go again. Not stay this time. I don't want to lose him again. He is mine and I want to keep him.
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