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.
Thursday, November 21, 2013
Wednesday, November 13, 2013
Why a diagnosis?
I've been thinking about this alot. Why do we need to diagnose Boeboe with anything? When she had progressing incontinence, I needed a diagnosis because it would lead to an operation and hopefully improvement before it became a permanent dissability. So I chased the diagnosis. I wanted it, I needed it, and it meant the world to me when I got it. We got her operation and we got the improvements and stabalising of her symptoms that we needed.
So why do we need another diagnosis? Would it really mean anything to us? To her? Would it help with anything? What difference would it make, in my or her world, whether she has a label or not?
A few days ago, my son wanted to know what is Down Syndrome (there's a child in their school with it). I tried to explain to him, and told him exactly what it is. Trisomy 21. Genes that's duplicated. Genes that causes some things to be just a little different in some children. And I told him we suspect that Boeboe's problem is based on similar problems with some of her genes.
And I realised. That's why I needed a diagnosis. Because of understanding. Because of ME understanding her better. Because of her siblings understanding her better. Her teachers. Her extended family. Her friends. Mr N has so many times looked at her in frustration, because she doesn't act her age, doesn't understand simple concepts sometimes even after it was explained to her, or doesn't speak in full sentences (this one has always baffled me). He needs to know that we should handle her issues with kindness, not frustration, because it isn't she. She doesn't chose to talk in half a sentence, expecting us to understand her. It's because she has limitations. The number of times I've gotten angry.... because she would say something like "Mommy, today in school jumped". That's it. Then I have to try and figure it out, drag any more words or explanations out of her, while dealing with her frustration because mommy doesn't understand and her inability to comprehend the fact that she hasn't used a complete, sensical sentence. It was always OUR fault, me, daddy, Mr N or whoever's fault for not understanding her. She never realised it's because she left out some words. For example, she might've wanted to say "Mommy, today in school Jan jumped on my toe." Or "Mommy, today in school we jumped rope and I loved it." So whatever you assume, could be totally off the mark and that frustrated her to no end. For the first sentence, I would react with sympathy, causing her to be totally confused if she meant the 2nd. Why would mommy be sad that I could jump rope? For the 2nd sentence, I would've acted happy and proud of her. Which would've frustrated and angered her for my apparent lack of sympathy that Jan jumped on her toe! And for some reason, you very, very rarely could get any MORE words out of her to complete the sentence. It's as if whatever block caused her to leave them out, stays in place doesn't matter how you prompt or guide her to an answer. And she would just not see what we see. She will not realise that she's left out words. It frustrated me and Mr N to no end. It usually happens in the car after school, which is why Mr N formed part of this. He always tried to help me make her see that her sentence is incomplete. So maybe, with a diagnosis, will come understanding. For me, Mr N, daddy and whoever has to deal with her. Understanding, and sympathy.
When we had no diagnosis before her tethered cord operation, I was impatient with her. I couldn't handle her or the symptoms. Once we had the diagnosis, I had all the patience and sympathy in the world. We tackled every day best we could, without forever waiting for that magical "improvement" to happen. For that magical light that'll switch on in her head/body to signal to her how to control functions that should be controlled. The frustrations of daily life was much, much better, because I didn't wait for it to get better any longer. Until, of course, after the operation.
Now, we're back in the same boat. Well, almost. We're looking for a comprehensive diagnosis that can explain Boeboe's learning dissabilities, her speech problems, her physical problems and her psychiatric problems. Something that can encompass all of that. Just like the tethered cord explained her feet and leg symptoms, her bladder symptoms, her colon problems and her incontinence problems. It explained everything that we wanted answers for at that stage.
So why else would I need a diagnosis?
To know if we should expect so much from her. It's back to that post I wrote, long long ago, about the ballet. (Here) If you KNOW what's wrong, do you expect as much of your child? Like you would've expected from a child who did NOT have the same problem? Before we knew Boeboe had a tethered cord, we expected her to suck it up and cope with the pain ballet brought her. If we had known she had a tethered cord, at the VERY least, I would've gone to the teacher and explain the situation to her. Because she was forcing Boeboe to do things even when it physically hurt her. Was this fair? Should you expect the same from a disabled child, than what you would from an abled child? No, I don't think so. It's not fair towards that child. Yes, of course you should still have high expectations, and of course you shouldn't molly-coddle your disabled child, and make her situation even worse by letting her know you have zero confidence in her abilities.
But how fair is it to expect the impossible from your child? And when she fails (you), she feels even worse? Shouldn't you lower your expectations to what's in her reach? Still expect her to do her best, to try out everything she wants to. But not expect the impossible from her? Certainly, you won't expect a child in a wheelchair to participate in the school's 60m running contest? Or expect a child on the autism spectrum to deliver a speech in front of the class?
If I know that Boeboe has a syndrome that's influencing her mental capabilities, I will stop expecting her to be a normal, average child in school. I will go to the teachers, and I will tell them to lower their expectations, to boost her more, to be proud of what they achieve with her. Just like I will be proud of all her achievements, and not feel like she's failing (even when she does compared to the other children). Because it won't be about passing and failing for me anymore. It will be about accomplishing. I'd be grateful for every bit of progress. I will still be driving her to do her best. I will still work my *ss off to provide her with every opportunity to do her best. I will still expect her to work every bit as hard as she does now. But then I'd sit back, and I'd marvel at what heights she achieve. While at the moment, once we've worked our butts off, I sit back, and I despair at how little difference it has made. Or how hard we had to work to achieve what comes seemingly natural to other kids (Mr N included). It's not easy, to feel like she's failing. When in fact, she might be accomplishing so so much. It's a mindset change, and it's unfair that I need a diagnosis to do the mindset change. But until you're in this situation, you won't realise how difficult it is, to lower your expectations of a child, when there's no diagnosis telling you if it's necessary or not. If I lower my expectations, when there's no reason, wouldn't that tell her she shouldn't achieve anything much, because mommy isn't expecting it? But if I don't lower my expectations when there's ample reason, won't she always feel like a failure, never ahieving what's expected?
Another very important reason why I would want a diagnosis, is also 2-fold. The genetics behind it. A diagnosis could influence the health of my other kids. Or rather, the treatment of the other kids. Like Monkeyman's heart problems. What if it has a genetic cause? Answers for Boeboe might help with answers for Monkeyman. I still have the "why" in the back of my mind. WHY would one average, normal family with no apparent issues have 4 seemingly normal, healthy kids, of which 3 of them then has been diagnosed at age 5 with a problem. Every time a different problem. But every time at age 5, and every time it was a big deal problem. Not something minor. Why why why? Could there be so much coincidence? I don't think so...
And similarly, what if Boeboe has a syndrome, that could be carried over to her children? What if a diagnosis can help her be proactive when she herself wants to become a mommy? This reason is one of the most important ones.
Do I believe there's a cause? Do I believe there's still an underlying, undiagnosed problem? A syndrome or something? Yes. I do. Without a doubt. If they can't find it, I'd still believe it's there. I'm convinced of it. I feel it. I instinctively know it. I've always known it. When she didn't do well during pregnancy. When she didn't grow as she was supposed to. Didn't move as she was supposed to. Didn't react like she was supposed to (like triggering labour when she was unable to get full nutrition from the placenta as the gynae said she would). When she was on the verge of going downhill fast after birth, and reacting like a 34-weeker baby, and not a 37-weeker. When she had sleep apnea as a tiny 2-month old baby. What "normal" baby stops breathing for no apparent reason night after night?? For months? When she didn't smile at us at the normal, expected time of 6 weeks. Not even at 8 weeks. Not even at 9 weeks. I knew it. Then.
When she never registered or reacted to her environment as a baby until 4 months. I knew it. My sister knew it. She voiced it. I shrugged her off. When Boeboe didn't sit at 7 months, I knew it. That was my limit. That's when I took her to the OT. Not for a diagnosis, but at least acknowledging we needed help. When she didn't talk at age 1 or even age 2. Or was unable to make people understand what she said at age 3-4. When she refused to speak at school. To her teachers, to her friends. I knew it then. The teacher knew it.
When she threw those horribly abnormal tantrums for hours and hours. When she would throw her body down on the floor, caught up in her violent anger and unable to feel the pain she inflicts on herself, on her brother, on her parents. When she didn't cry any tears. When her face was all screwed up from her pain, when she would rub her eyes furiously as if the buildup of the non-existing tears is too much, when she would look at me with her eyes shining from a wet film, but no tears would roll down her cheeks. I knew it. Then. When she had absolutely no embarressment because of her accidents. No clue that her friends might/will realise. When she chose to play on at home in wet pants, rather than loose even a minute of play to go and change. Even at an age appropriate for such things. I knew then.
When she would not learn from her own mistakes. When we asked the OT why she would jump off the couch, hurt herself, cry bitterly (without tears!), and then just climb right back up. Jumping off again, hurting herself, cry, and then, AGAIN just climb back up, jump off, hurt herself and cry. Until I step in and tell her off for doing something that causes her physical pain. I knew then.
When she would act abnormal to certain situations. When she acted illogical. When me and daddy looked at each other in exasperation, shaking our heads in our surprise, at each other. When we gave each other a knowing look, a knowing smile, because of Boeboe's idiosyncronies. We knew. We've always known. We always said "she's abnormal". It's a horrible, horrible thing to say of your child, and when people queried us, or berated us for being so mean about our own child, we'd say "but it's true. What else can you say about this?". Because her behaviour, he remarks, her attitude, her reactions, sometimes they were nothing other than "abnormal".
When we had her evaluted for a personality disorder, because she's such a Dr Jackal and Mr Hyde. She didn't have a personality disorder, then. But we knew she had something. We knew it all along, but we had no resources, no reserves and sometimes no stamina to face it. After the uphill battle we faced getting her tethered cord diagnosed, we couldn't face anything anymore. We were done. We just wanted to get on with life and ignore all of this. For once, we just wanted to feel that she's normal. That she just reacted strangely all of these years, due to the tethered cord and the way her bladder/feet made her feel/react. We just wanted to believe everything will turn out okay for her. That she'll be a teacher one day, marry a good man, live on a farm filled with animals, and have 2 little boys and 2 little twin-girls of her own. That's all she wants out of life. And we were determined to give her that.
So why do we need another diagnosis? Would it really mean anything to us? To her? Would it help with anything? What difference would it make, in my or her world, whether she has a label or not?
A few days ago, my son wanted to know what is Down Syndrome (there's a child in their school with it). I tried to explain to him, and told him exactly what it is. Trisomy 21. Genes that's duplicated. Genes that causes some things to be just a little different in some children. And I told him we suspect that Boeboe's problem is based on similar problems with some of her genes.
And I realised. That's why I needed a diagnosis. Because of understanding. Because of ME understanding her better. Because of her siblings understanding her better. Her teachers. Her extended family. Her friends. Mr N has so many times looked at her in frustration, because she doesn't act her age, doesn't understand simple concepts sometimes even after it was explained to her, or doesn't speak in full sentences (this one has always baffled me). He needs to know that we should handle her issues with kindness, not frustration, because it isn't she. She doesn't chose to talk in half a sentence, expecting us to understand her. It's because she has limitations. The number of times I've gotten angry.... because she would say something like "Mommy, today in school jumped". That's it. Then I have to try and figure it out, drag any more words or explanations out of her, while dealing with her frustration because mommy doesn't understand and her inability to comprehend the fact that she hasn't used a complete, sensical sentence. It was always OUR fault, me, daddy, Mr N or whoever's fault for not understanding her. She never realised it's because she left out some words. For example, she might've wanted to say "Mommy, today in school Jan jumped on my toe." Or "Mommy, today in school we jumped rope and I loved it." So whatever you assume, could be totally off the mark and that frustrated her to no end. For the first sentence, I would react with sympathy, causing her to be totally confused if she meant the 2nd. Why would mommy be sad that I could jump rope? For the 2nd sentence, I would've acted happy and proud of her. Which would've frustrated and angered her for my apparent lack of sympathy that Jan jumped on her toe! And for some reason, you very, very rarely could get any MORE words out of her to complete the sentence. It's as if whatever block caused her to leave them out, stays in place doesn't matter how you prompt or guide her to an answer. And she would just not see what we see. She will not realise that she's left out words. It frustrated me and Mr N to no end. It usually happens in the car after school, which is why Mr N formed part of this. He always tried to help me make her see that her sentence is incomplete. So maybe, with a diagnosis, will come understanding. For me, Mr N, daddy and whoever has to deal with her. Understanding, and sympathy.
When we had no diagnosis before her tethered cord operation, I was impatient with her. I couldn't handle her or the symptoms. Once we had the diagnosis, I had all the patience and sympathy in the world. We tackled every day best we could, without forever waiting for that magical "improvement" to happen. For that magical light that'll switch on in her head/body to signal to her how to control functions that should be controlled. The frustrations of daily life was much, much better, because I didn't wait for it to get better any longer. Until, of course, after the operation.
Now, we're back in the same boat. Well, almost. We're looking for a comprehensive diagnosis that can explain Boeboe's learning dissabilities, her speech problems, her physical problems and her psychiatric problems. Something that can encompass all of that. Just like the tethered cord explained her feet and leg symptoms, her bladder symptoms, her colon problems and her incontinence problems. It explained everything that we wanted answers for at that stage.
So why else would I need a diagnosis?
To know if we should expect so much from her. It's back to that post I wrote, long long ago, about the ballet. (Here) If you KNOW what's wrong, do you expect as much of your child? Like you would've expected from a child who did NOT have the same problem? Before we knew Boeboe had a tethered cord, we expected her to suck it up and cope with the pain ballet brought her. If we had known she had a tethered cord, at the VERY least, I would've gone to the teacher and explain the situation to her. Because she was forcing Boeboe to do things even when it physically hurt her. Was this fair? Should you expect the same from a disabled child, than what you would from an abled child? No, I don't think so. It's not fair towards that child. Yes, of course you should still have high expectations, and of course you shouldn't molly-coddle your disabled child, and make her situation even worse by letting her know you have zero confidence in her abilities.
But how fair is it to expect the impossible from your child? And when she fails (you), she feels even worse? Shouldn't you lower your expectations to what's in her reach? Still expect her to do her best, to try out everything she wants to. But not expect the impossible from her? Certainly, you won't expect a child in a wheelchair to participate in the school's 60m running contest? Or expect a child on the autism spectrum to deliver a speech in front of the class?
If I know that Boeboe has a syndrome that's influencing her mental capabilities, I will stop expecting her to be a normal, average child in school. I will go to the teachers, and I will tell them to lower their expectations, to boost her more, to be proud of what they achieve with her. Just like I will be proud of all her achievements, and not feel like she's failing (even when she does compared to the other children). Because it won't be about passing and failing for me anymore. It will be about accomplishing. I'd be grateful for every bit of progress. I will still be driving her to do her best. I will still work my *ss off to provide her with every opportunity to do her best. I will still expect her to work every bit as hard as she does now. But then I'd sit back, and I'd marvel at what heights she achieve. While at the moment, once we've worked our butts off, I sit back, and I despair at how little difference it has made. Or how hard we had to work to achieve what comes seemingly natural to other kids (Mr N included). It's not easy, to feel like she's failing. When in fact, she might be accomplishing so so much. It's a mindset change, and it's unfair that I need a diagnosis to do the mindset change. But until you're in this situation, you won't realise how difficult it is, to lower your expectations of a child, when there's no diagnosis telling you if it's necessary or not. If I lower my expectations, when there's no reason, wouldn't that tell her she shouldn't achieve anything much, because mommy isn't expecting it? But if I don't lower my expectations when there's ample reason, won't she always feel like a failure, never ahieving what's expected?
Another very important reason why I would want a diagnosis, is also 2-fold. The genetics behind it. A diagnosis could influence the health of my other kids. Or rather, the treatment of the other kids. Like Monkeyman's heart problems. What if it has a genetic cause? Answers for Boeboe might help with answers for Monkeyman. I still have the "why" in the back of my mind. WHY would one average, normal family with no apparent issues have 4 seemingly normal, healthy kids, of which 3 of them then has been diagnosed at age 5 with a problem. Every time a different problem. But every time at age 5, and every time it was a big deal problem. Not something minor. Why why why? Could there be so much coincidence? I don't think so...
And similarly, what if Boeboe has a syndrome, that could be carried over to her children? What if a diagnosis can help her be proactive when she herself wants to become a mommy? This reason is one of the most important ones.
Do I believe there's a cause? Do I believe there's still an underlying, undiagnosed problem? A syndrome or something? Yes. I do. Without a doubt. If they can't find it, I'd still believe it's there. I'm convinced of it. I feel it. I instinctively know it. I've always known it. When she didn't do well during pregnancy. When she didn't grow as she was supposed to. Didn't move as she was supposed to. Didn't react like she was supposed to (like triggering labour when she was unable to get full nutrition from the placenta as the gynae said she would). When she was on the verge of going downhill fast after birth, and reacting like a 34-weeker baby, and not a 37-weeker. When she had sleep apnea as a tiny 2-month old baby. What "normal" baby stops breathing for no apparent reason night after night?? For months? When she didn't smile at us at the normal, expected time of 6 weeks. Not even at 8 weeks. Not even at 9 weeks. I knew it. Then.
When she never registered or reacted to her environment as a baby until 4 months. I knew it. My sister knew it. She voiced it. I shrugged her off. When Boeboe didn't sit at 7 months, I knew it. That was my limit. That's when I took her to the OT. Not for a diagnosis, but at least acknowledging we needed help. When she didn't talk at age 1 or even age 2. Or was unable to make people understand what she said at age 3-4. When she refused to speak at school. To her teachers, to her friends. I knew it then. The teacher knew it.
When she threw those horribly abnormal tantrums for hours and hours. When she would throw her body down on the floor, caught up in her violent anger and unable to feel the pain she inflicts on herself, on her brother, on her parents. When she didn't cry any tears. When her face was all screwed up from her pain, when she would rub her eyes furiously as if the buildup of the non-existing tears is too much, when she would look at me with her eyes shining from a wet film, but no tears would roll down her cheeks. I knew it. Then. When she had absolutely no embarressment because of her accidents. No clue that her friends might/will realise. When she chose to play on at home in wet pants, rather than loose even a minute of play to go and change. Even at an age appropriate for such things. I knew then.
When she would not learn from her own mistakes. When we asked the OT why she would jump off the couch, hurt herself, cry bitterly (without tears!), and then just climb right back up. Jumping off again, hurting herself, cry, and then, AGAIN just climb back up, jump off, hurt herself and cry. Until I step in and tell her off for doing something that causes her physical pain. I knew then.
When she would act abnormal to certain situations. When she acted illogical. When me and daddy looked at each other in exasperation, shaking our heads in our surprise, at each other. When we gave each other a knowing look, a knowing smile, because of Boeboe's idiosyncronies. We knew. We've always known. We always said "she's abnormal". It's a horrible, horrible thing to say of your child, and when people queried us, or berated us for being so mean about our own child, we'd say "but it's true. What else can you say about this?". Because her behaviour, he remarks, her attitude, her reactions, sometimes they were nothing other than "abnormal".
When we had her evaluted for a personality disorder, because she's such a Dr Jackal and Mr Hyde. She didn't have a personality disorder, then. But we knew she had something. We knew it all along, but we had no resources, no reserves and sometimes no stamina to face it. After the uphill battle we faced getting her tethered cord diagnosed, we couldn't face anything anymore. We were done. We just wanted to get on with life and ignore all of this. For once, we just wanted to feel that she's normal. That she just reacted strangely all of these years, due to the tethered cord and the way her bladder/feet made her feel/react. We just wanted to believe everything will turn out okay for her. That she'll be a teacher one day, marry a good man, live on a farm filled with animals, and have 2 little boys and 2 little twin-girls of her own. That's all she wants out of life. And we were determined to give her that.
Sunday, November 3, 2013
Just waiting, like always
I'm not used to the waiting, but, I'm almost resigned to it. I'm too emotionally drained to fight against the waiting anymore. I haven't had the strength even to update on here. It's still very confusing. And sad.
A week ago, we saw the geneticist. She said the following things:
We've been studying for more than a week already. It's really, really hard work. I feel so sorry for my children. I'm a slave driver though. Especially because this is make or break for Boeboe. A couple of the specialists, well, actually all except the psychologist, told us to take Boeboe out of mainstream. But we've decided to give her and the school a chance. If she fails this exam, we'll make some decisions. If she passes, we're giving her another year in the school. So, this is make or break. My nerves are frayed already, and we're just busy with revision. I'm summarising all her work for her. It takes me about 5+ hours per subject, and she has 6! So you can imagine how shattered I am. I can't wait for the exams to be finished. At the same time, I'm terrified. How awful that I'm more worried about my 10-year old's school exam, than I was with my own B.Sc final exams. :-( So so wrong. But that's life.
So a quick update on Monkeyman. With him, we're ALSO just waiting. This one is harder on me. I accept that chromosomal studies and things like that takes time. But to sit and wait to see if your son's heart heals itself or not... for the 2nd time in one year? It's indescribably difficult. Our GP says that a function of 36% is really, really low. And that he doesn't know the reversibility of cardiomyopathy in children. Implying that it's not good news in adults. So I'm not sure what's the chances of Monkeyman recovering from this one. It scares me. Alot. I think that's why I focuses on Boeboe's issues. Because even though it's extremely difficult, at least it doesn't feel to me like my child's on death's doorstep, like I do with Monkeyman. Logically, realistically, I know he's not. His left heart isn't enlarged yet, and his right heart has shrunk back to normal size. So, I do believe he has time. If only the heart function wasn't this low, I could've worried less. Couple that knowledge with seeing him being tired on a daily basis. Hearing him being out of breath, sounding tired or complaining about being tired, as well as hearing other people like his teacher complains that on some days he's just not himself at school, or that he's extremely pale, etc. So I'm really worried. It's almost a month since we saw the cardiologist. She said we need to wait 2 months, and then bring him back. Except if his tiredness improves, then we should wait 3 months. Well, after the first month's gone, I'd say he's worse, not better. Not much worse, but definitely no improvement.
So, now we just wait. Wait for the exams to finish. Wait for Monkeyman's tiredness and heart to improve, or for the appointment on the 4th of December, whichever comes first. And waiting for the geneticist to decide what tests our daughter needs to determine what chromosomal problem she might have. Waiting for Boeboe to fail or pass grade 4. Waiting for the psychiatrist appointment to hear what everything means. Waiting for her to be put on some more medication. So like always, just waiting.
Blegh.
A week ago, we saw the geneticist. She said the following things:
- There is some underlying problem in Boeboe, causing all her issues - faulty genes, chromosomal defects, a known syndrome, etc.
- Nothing of Boeboe's symptoms or signs stands out clearly as to what the cause is, so we're going to have to search for it.
- Boeboe has some facial and other features pointing to a chromosomal disorder, but it's all non-specific. She has a unibrow, low hairline at the neck, small hands and thin, long fingers, hooded eyes, flat nasal bridge, flat forehead, head circumference on the 3rd percentile, etc. Some of these might just be genetics - meaning, she could've inherited it from me or her dad's side, like her small lower jaw.
- The geneticist doesn't believe it is velo-cardio-facial-syndrome, mostly because Boeboe's facial features aren't specific enough for that disorder. Personally, from what I've researched so far, 22q11 duplication struck a cord with me. VCFS is a deletion on chromosome 22, at the q11 area. The duplication seems to be very similar to VCFS, with overlapping features and signs, but it also seems just that tiny bit milder in some areas. For example, 80% of children with the deletion has a congenital heart defect, while only 20% of the children with the duplication has heart defects. Same goes for cleft palate, etc.
- The geneticist believes our best option would be to do some kind of micro array analysis. It gives an overview of all the chromosomes. Unfortunately, it only detects about 15% of the problems. Still, it's a good start. The one available in SA only detects about 7%, so she'd like to send Boeboe's blood to England to do this test. Otherwise, we can wait, because they're busy to implement the better one in SA, but it will only be available in about 8+ months time.
- She's going to talk to the professor in Weskoppies, and get back to us on a plan of action.
We've been studying for more than a week already. It's really, really hard work. I feel so sorry for my children. I'm a slave driver though. Especially because this is make or break for Boeboe. A couple of the specialists, well, actually all except the psychologist, told us to take Boeboe out of mainstream. But we've decided to give her and the school a chance. If she fails this exam, we'll make some decisions. If she passes, we're giving her another year in the school. So, this is make or break. My nerves are frayed already, and we're just busy with revision. I'm summarising all her work for her. It takes me about 5+ hours per subject, and she has 6! So you can imagine how shattered I am. I can't wait for the exams to be finished. At the same time, I'm terrified. How awful that I'm more worried about my 10-year old's school exam, than I was with my own B.Sc final exams. :-( So so wrong. But that's life.
So a quick update on Monkeyman. With him, we're ALSO just waiting. This one is harder on me. I accept that chromosomal studies and things like that takes time. But to sit and wait to see if your son's heart heals itself or not... for the 2nd time in one year? It's indescribably difficult. Our GP says that a function of 36% is really, really low. And that he doesn't know the reversibility of cardiomyopathy in children. Implying that it's not good news in adults. So I'm not sure what's the chances of Monkeyman recovering from this one. It scares me. Alot. I think that's why I focuses on Boeboe's issues. Because even though it's extremely difficult, at least it doesn't feel to me like my child's on death's doorstep, like I do with Monkeyman. Logically, realistically, I know he's not. His left heart isn't enlarged yet, and his right heart has shrunk back to normal size. So, I do believe he has time. If only the heart function wasn't this low, I could've worried less. Couple that knowledge with seeing him being tired on a daily basis. Hearing him being out of breath, sounding tired or complaining about being tired, as well as hearing other people like his teacher complains that on some days he's just not himself at school, or that he's extremely pale, etc. So I'm really worried. It's almost a month since we saw the cardiologist. She said we need to wait 2 months, and then bring him back. Except if his tiredness improves, then we should wait 3 months. Well, after the first month's gone, I'd say he's worse, not better. Not much worse, but definitely no improvement.
So, now we just wait. Wait for the exams to finish. Wait for Monkeyman's tiredness and heart to improve, or for the appointment on the 4th of December, whichever comes first. And waiting for the geneticist to decide what tests our daughter needs to determine what chromosomal problem she might have. Waiting for Boeboe to fail or pass grade 4. Waiting for the psychiatrist appointment to hear what everything means. Waiting for her to be put on some more medication. So like always, just waiting.
Blegh.
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