I've started and re-started this post so many times. I'm not sure what to say. I feel that Boeboe's story would not be complete by not discussing this. But growing up in the 70's/80's like I did, this wasn't the type of subject one discusses. There was a certain "shame" to it. Some things you just didn't tell people. Some things, you're suppose to be ashamed about. Am I? No. I'm just very sad and worried about the future.
Boeboe has psychosis.
I kinda expected the diagnosis. I hinted about it in my last post. Still, it hurts to get a definite diagnosis. To hear your 10-year old needs anti-psychotic medication... it just isn't easy.
We went to see her psychiatrist. The exams is done with and we needed to get a replacement for the anti-depressant medication for which she was allergic. We had to wait until exams were finished so that adjusting to the meds didn't interfere with Boeboe trying to pass grade 4. The psychologist asked me to tell the psychiatrist about some of the episodes that happened recently with Boeboe, which I discussed with her. The psychiatrist diagnosed it as psychosis (possibly linked to bi-polar), and said we need to give something for that, rather than just an anti-depressant. Boeboe has had psychotic episodes since forever. There's things we don't talk about, like I said in the beginning of this post. This was something that I rarely discussed with family or friends, and I've never talk about it this openly. We did tell numerous doctors and therapysts along the way, about all of this. We were told things like "ignore it, it's from the devil" (eish!), "don't worry, that's normal behaviour for a 3-year old", "don't worry, she's emotionally behind her peers, I'm sure it's still normal even though she's 6 already..." or "but remember, she's been through so much with the tethered cord and all the tests and embarressment and stress, surely it's just because of that?". Or my favourite "all kids have imaginations like that!".
Well, I certainly hope not! Grrr. You know what? I kinda feel angry. Angry at all the faceless, nameless (and more familiar) people who always told us that Boeboe's issues just aint as bad as we said it was. When I tried to explain that her tantrums are severe, people would answer "oh, but you must've seen MY son at age 2/3/4/whatever - he would also go on and on for hours". Or "oh gosh ya, I know what you mean, my daughter is exactly the same!". Or "don't worry, it'll pass, it's normal". Etc. etc. etc.
Well, my daughter IS NOT NORMAL. Her tantrums ARE NOT NORMAL. Her behaviour IS NOT NORMAL. Her cognitive thinking processes ARE NOT NORMAL. There's alot about my daughter that IS normal. But there's alot too, that was never, ever normal to begin with. I've accepted it over time. Living with it, it's impossible to not think "wow, that's abnormal". After a while, the excuses of "she's just 4" or "she's tired" or "she's spoilt" wears a bit thin. You can't listen to your child scream in anger for 3 hours NON-STOP on a regular basis, and still think "ah well, that's normal, she'll get over it".
I have 3 other kids. And by now, I realise that I should have tried harder to convince people (specialists) about the facts. But, when you have a little girl of 3, and a boy of 5, you think "okay, she's not the same as her brother, but that's pretty okay to be different, isn't it? I'm sure all the specialysts/other parents/therapyst/everyone is right, she's fine, we don't need to worry, she'll outgrow all of these things like any other child and turn out to be a happy, healthy and completely normal 10-year old".
Well, there goes that theory. :-( I should've realised that it really was as bad as we experienced it. It really was as bad as we feared. It really was as bad as we tried to tell people. Her tantrums, her behaviour, her lack of logical thinking, her paranoia, her anger, her frustration, her explosions, her lack of understanding, everything. With Peanut now in our lives, I think back about Boeboe's first year so much. And it's like the red flags are flapping in my face. Even the tantrums before age 1. I look at Peanut when she's frustrated and screaming because we took a (dangerous) object away from her. And I marvel at how little upset she looks, compared to how Boeboe looked. Obviously, Peanut is 1, she's NOT just a little upset. She's very upset! But it's like comparing a mouse with a lion. And the time. Oh man, Peanut would scream all of about 10 seconds. Maybe a minute. Not an hour! And when I speak loudly to her, she'll stop screaming to listen to my voice. Boeboe...well, trying to drown her voice out with reason, was just adding oil to an already big, roaring fire. The differences are just astounding in their depth.
The psychiatrist also told me that Boeboe has integration problems in her brain. We need to put a very strict routine in place, for EVERYTHING. Every day life (fortunately we mostly do have this, since I'm a routine-type of mommy/person). As well as things like homework, schoolwork, etc. She needs very precise instructions, on a level she can understand with the difficulties her brain experiences. We can't leave her to make her own deductions, to use logial thought processes. Because she won't.
It's very overwhelming, to at long last admit defeat. My daughter isn't normal. What I feared, what I expected, but desperately wanted to believe isn't true. I have to accept it now. If we do a chromosomal test or not. These are the facts that she has to live with. The facts that we have to accept. We have absolutely no idea what this will mean for her future. Will she stabalise? Will she get better? Will she turn worse? Will she be able to realise her dreams of becoming a wife, a parent, a teacher? Will she function on her own, drive a car, hold down a job, take care of a household? Will she end up in an institution? Will she live in a group home? Will she live with us? Will she be okay when we're not there anymore? Will she have her siblings' love and support? Will she stay the person she's now? The loving, sweet, empathatic, mother-hen? Will she loose those qualities? Will the anger, paranoia, frustration, and other negative emotions destroy all the good in her?
I don't know. Nobody knows. All that I know now, is what the psychiatrists can tell me. That we have a long, long road ahead of us. and I know it won't be easy. I'm grateful though, for one thing. That we're not alone anymore. That people will now understand. That specialists are now rallying around us, supporting us. And I'm grateful for medication. I hope and I pray that this will work for Boeboe. When I looked into her eyes, listened to her heart-broken voice, when she told me about a particular episode of psychosis that happened at school, I realised how hard this is for her. She told me that she doesn't want this. She doesn't want to be like this. That she doesn't want those thoughts. That she doesn't like it. It broke my heart and made me realise the horrors that she sometimes has to face. This is the reason why I opened up about it and told her psychologist, who told me what it was and asked me to discuss it with the psychiatrist prior to getting medication for the anxiety. It wasn't easy. It's much, much easier ignoring it, telling yourself it really isn't as bad. But for Boeboe's sake, after hearing the anguish it causes her, I had to. So I'm really hoping that this medication would make things better for her. Really, really hoping. Life is hard enough for her, to have to deal with things like that too. :-(
The psychiatrist also reiterated that she still believes it's Velo-cardio-facial syndrome (22q11.2 deletion syndrome). Because of the whole package. The whole psychiatric package that is Boeboe. Plus the other little things. She said that there's alot of their psychiatric patients that has little to no facial features of the syndrome. And Boeboe doesn't have no features, just very few. So despite the fact that the geneticist also told the professor that she doesn't believe it's vcfs, they (the 2 psychiatrists) still believes it is. The professor apparently still really want to test Boeboe for this. So we've agreed to take her for a bloodtest next week. The conviction with which the psychiatrist spoke, has given me lots to think about. After the geneticist visit, I kinda assumed she would know best and if she thinks it's something else, it must be something else. But the psychiatrist sounded really sure of it. She didn't try to convince me, far from it. She also didn't just bluntly disagreed with the genetist. She just stated her and the professor's feelings. I know that these things could go either way. You can be convinced about something, and bloodtests can be negative. Or other way round. Still, it's made me have another look at vcfs again. I wish I knew what the underlying cause was, as definite as with her tethered cord. Doesn't matter what the drs said, I just knew it was tethered cord. I tried to keep an open mind and try the different methods, medications and procedures. But I knew it. So I could fight for it with everything I had. This time, it feels like I'm stumbling in the dark. I know there's something causing all of it. But I don't know what it is. You could tell me it's a duplication of chromosome nr 28, and I'd believe you (except that, like you probably know as well, there's only 23 chromosomes, LOL). Anyway, this is a long road we'll just have to walk down patiently.
Back to more practical things. Like I said, exams is done with. How did it go? I think good. I have high hope that she'll pass. We worked immensely hard. Much harder than what should be necessary. I spent hours and hours and hours, summarising only the important bits for Boeboe. And I quizzed her relentlessly. She also feels positive, because getting the extra time in the examinations meant the world to her. She was almost always the last one seated (every one else that got extra time, still finished quicker than she did, which saddened and embarressed her). But like I told her, that's not what's important. It wasn't a race. As long as she did a thorough job, I was proud of her.
Since the afternoon before the last exam, she's been impossible. Oppositional, paranoid, frustrated, tired, angry, demanding, sad and very self-pitying. I know it's just a reaction to the immense stress she was under. I understand, and I have sympathy. But geez, it's difficult. Some days it feels like a cyclone has passed through the house and left the rest of us in its wake. So I've made an appointment with her psychologist. I'm sure it's going to help, like always.
She has also, very reluctantly, agreed to the bloodtest next week. When Monkeyman has to go for his repeat white blood cell count for the cardiologist. Hopefully, his bravery will help us, because it's going to be extremely difficult, getting her to cooperate. Today, at the opthalmologist, I had to restrain her, because she kept on swiping the doctor's hands away. I apologised to her afterwards, and explained that sometimes, we just have to grit our teeth. Even when someone is putting drops in our eyes that stings. Fortunately, her eyes looks good!! Somehow, it seems as if very, very slowly, her tearducts are starting to function tiny bits at a time. Enough for her corneas to function well with enough moisture. She's doing so good, that the dr said we don't need to come for regular checkups anymore, only when there's a concern. My own test was also good news! The glaucoma is still very stable, so no need for medication, and no need for yearly checkups anymore (only every 2nd year from now on). I'm really relieved and grateful, because the very last thing I needed now, would be a health worry of my own. Especially something as important as one's eyes.
On Monday I'm taking Peanut to the pead, because her hips/pelvis has started to click. :-( She had x-rays at age 9 months, which was perfectly normal. So I'm sure it's nothing. It just bothers me that it never clicked before, and suddenly, out of the blue, it started and since then it clicks more and more every day. For about 2 weeks now. So hold thumbs that it's just nothing.
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