We had the strangest week. I spoke to the cardiologist over the phone, and that caused us to make the (very huge) decision to take Monkeyman to another, 3rd, opinion. It was really, really difficult to do. I have this innate trust in people, and I feel awful when I hurt someone's feelings. Especially someone who I really believe is trying to help my child. Dr-hopping makes me feel like such a paranoid, weirdo of a mom. The looks I get when the dr realises you're asking him or her to sell out one of their collegues.... it's SO difficult, I absolutely hate it.
But, my child's life is on the line. I couldn't just leave everything like it was. I lost a bit of my trust in the current cardiologist, because she worries sooooo much about Monkeyman's emotional well-being. She doesn't want to expose him to too many tests, but keeps on asking us to come back to her every 4-6 weeks. She thinks he has a mitochondrial disease, but doesn't want us to pursue this train of thought futher, until after June. (The specialist is fully booked until then, and to get in quicker with her, we need a referral letter which the cardiologist doesn't want to give.) She (the cardiologist) thinks there might be something up with the lungs, but doesn't want to expose him to too much radiation or unnecessary trauma to make sure everything is okay by performing a CT scan. She refuses to give his diagnosis a name, to label the things that's wrong with him, to tell us more of anything or explain things to us. She told us in Dec to take Monkeyman to a pead if his bloodtests are abnormal again this year. And when it was, she got upset with me when I asked if I should now take him to a pead. (?!)
It got too much for us, so we took the plunge and made an appointment with another pediatric cardiologist. Accordingly to him, Monkeyman is absolutely FINE. His heart, in any case. His heart is normal, nothing wrong! He does think there's something that causes the tiredness, but it's not the heart!!
So how can 2 specialists have such completely different opinions? Well, I don't know. It's actually extremely scary, but I try not to dwell on how that is possible. Yet. So, here's the 2 opinions:
Cardiologist nr 1 says that the left ventricle's wall is something like 5.2 or 5.3. She said 5.8 and upwards is normal. She checked this at least 2-3x that I know of, and remarked once that it was unchanged from one visit to the next.
Cardiologist nr 2 says that the left ventricle's wall is 6, and thus normal!! He checked this once, obviously.
This is huge. Because based on that left ventricle wall, dilated cardiomyopathy can develop, or not. It's a fear for his future, or not. This is really a big deal. How do we now know?? Is it thinned? Isn't it thinned?? Can he play impact or extreme sports or not? Can he play competitive sports? Can he do athletics one day? We should know this! But how?
Secondly, cardiologist nr 1 prescribed beta-blockers and said "this will help for the heart failure" (amongst other things). Now, I wonder if she meant to say it like that. Because he isn't in heart failure. Not at all, accordingly to cardiologist nr 2!!! He told us if it was him, he'd immediately stop giving the medication to his child, since it's unnecessary and I agree with him that you don't give these types of medications when it's not necessary. Also, during our phonecall, Cardiologist 1 said that there are 2 functions, and that the usual one (that indicates heart function) is 61% (which is normal)! It's another function that's 30%. She didn't want to name or explain this any futher. But it made me think, based on the next point here, that this means she didn't mean to say that Monkeyman is in heart failure. That it was a slip of the tongue or whatever, but that she most likely doesn't even realise she said that?
Thirdly, cardiologist nr 1 said the one heart function was 30% and that it should be around 40% and up. That 30% is too low. While cardiologist nr 2 said that that function is 34%, and that's normal. Even if it was 30%, he said it would've still been normal!!! How can 2 cardiologists differ on what percentage is normal or not? I don't know.
Fourthly, Cardiologist nr 1 said that there's something about his lungs bothering her. She took x-ray after x-ray, over a 5-month period. Everytime saying that if it still says "bronchial thickening" next time, she'll do a scan. Then, when it indeed does say that, she backtracks and says things like "we can't put a child through that kind of radiation if not absolutely sure" or "we must be conservative here, else he'll get psychological damage from all these tests", etc.
While cardiologist nr 2 had a good look at all his x-rays, and said there's absolutely nothing wrong with them!
So why would one cardiologist differ so much from another? And who to believe? We've spent around R10 000 on cardiologists in less than a year (that's about $900). This does not include all the blood tests, the x-rays, the medication, everything else. And not even close to what we've spent on Boeboe's tests and evaluations and visits!! Which has absolutely no end in sight. So to go for another cardiology visit... it just ain't feasible at this point.
So ya, where does that leave us? Well, firstly, I believe Monkeyman IS NOT IN HEART FAILURE!! Whoohoo!!!! That's the best best best news ever!
Unfortunately, I'm not as sure about the dilated cardiomyopathy heart wall thinning. Cardiologist nr 1 spent about 2hrs with us during the first visit, and there-after 1hr times 3. Which means a total of at least 5 hours. A big chunk of this was spent on an echo everytime. Cardiologist nr 2 was late after an emergency, and spent much, much less time with Monkeyman. Maybe, I guess, about 1hr, of which about half of it was on an echo. I haven't seen him go into the certain M2 view (I think it's called) that cardiologist 2 used to measure that heart thinning.
So I'm not sure. I trust this cardiologist 2. He seemed so self-confident. So sure. He was extremely nice. And seemed to be on a similar page to me. I would've been able to walk a road with this doctor. There was just something in him that made me believe him, and trust him.
Quite a dilemma. But, somehow, I'm STILL happy and relieved!! Monkeyman isn't in heart failure, and that's all that matters to me at THIS moment. Yes, tomorrow or next week I'll start to worry again if the heart wall is now really thin or not. And if a 30% function of that one measurement is now really normal or not? But for now, I'm just really, really, really happy that Monkeyman's heart looks actually good enough to either be completely normal, or to fool a very experienced cardiologist into believing it is. So obviously, nothing TOO major is wrong, at this moment at least.
Hope all of this babbling makes sense. Cardiologist nr 1 believes Monkeyman might have an underlying mitochondrial disease. But she wants us to wait 6 months before we investigate this further. Cardiologist nr 2 wants us to go to the pead soon, to rule out metabolic diseases, one of which is Barth Syndrome. He believes it will most likely be negative, but says it's important to rule this out as soon as possible. He believes there's something causing Monkeyman's tiredness and low bloodcount, and understand and agree that we must find the cause sooner rather than later, since it's influencing his ability to go to school. How much can a kid learn that's constantly tired?
This morning, we saw Boeboe's teacher and department head. They were so friendly and open and supportive. I was very relieved, and very grateful. It was a very good visit. I told them that Boeboe's currently under investigation for a chromosomal defect, and that delayed her speech and communication skills. They've put some things in place that will really make a difference to Boeboe and me. They also understood our homework problems, and are satisfied with the decisions me and Boeboe's psychologist made about that. The department head even suggested some more leniency, which I appreciated SO much. I felt like they got it! The one also knew alot about Boeboe's history, and said that Boeboe has overcome so much difficulty in her life, that she has used her as an example for the other kids. :-) This is soooo good to hear!!
She's also said some nice things about Mr N, who's in her class. It made my heart swell with pride and gratitude. We've raised awesome kids!!!
Thursday, January 30, 2014
Friday, January 24, 2014
My point of view has changed
I look at other parents at school, and I feel so distant. I see how they laugh, how excited they are about something, how they seem to have direction and purpose.
And I envy them.
I want to go back to who I was. Who I was 1 year ago. The person and mom I was. The optimistic, care-free, happy, easy-going person who didn't feel this constant sadness, anger, resentment and worry inside. Who choke up when Tears in Heaven comes up. Who can't listen to Butterfly Kisses or look at a normal 5-year old little boy running around like he has all the energy in the world.
I'm jealous. I'm insanely, unstoppable jealous. I resent every thing that has turned our lives upside down. I resent innocent bystanders that isn't involve in our story at all. I resent people laughing and going on with life like normal. I resent people. I resent them for not suffering like us. I resent them for their carefree lives. I resent them for their freedom from worries.
I know. Everyone hurts. Everyone worries. Everyone has things that makes them unhappy, sad, worried, resentful. But believe me, the type of worry takes on a WHOLE different meaning, when you have a child that's this ill. That has this sword hanging over him. You look at other, healthy children, and you get this overwhelming sadness. Wishing that for your child, your family. For you.
It's not that I expect the world to come to a standstill. It doesn't even for things much, much worse than what we're going through. I also don't expect people that has had a difficult day, a child with the flu, someone going through divorce or moving house, to not stress or think they have no right to worry or stress or having a difficult time. Everyone has the right. Everyone lives through difficult times. Everyone worries. Everyone has stress. Everyone has the right to cry and scream and be angry.
So allow me to now cry and scream and be angry. And feel like my life is falling apart. And that other people's lives look so much better, so much easier, than mine. I know, there's always someone worse off. Always someone that wish they were rather me instead. But for now, I just want to be angry that our lives isn't that easy anymore. Quite the opposite.
I'm so tired of constant worry. Of living under unbearable stress. Of tears that sits just underneath the surface. Of not being able to even talk normally to people. Of lying awake late at night when it's quiet. Wondering what the new day will bring.
I'm tired of people asking "How are you?" when they're not really ready for the answer. If I rant and rave, cry and scream, what will they say? What will they do? People tell me "I don't know how you do it." You know what? Me neither. So can I scream now? Can I cry? Will you think: "Oh, that's more like it! That's more normal!" and slap me on the back in joviality? Or would you be uncomfortable, not knowing what to say or do, thinking: "Gosh, she's loosing it!".
So if I don't cry and scream when you see me, it means I'm strong, able to handle all of it? But if I do cry and scream.... seems like I'm damned if I do, and damned if I don't.
So back to my point of view that has changed. I look at people, and I feel like I can't connect. What I thought about life, what I lived every day, it's gone. It's changed. I don't feel like that at the moment. I talk to people, and all I'm thinking is "You have no fucking clue". Sorry for swearing, but at this point, that's really how I feel. That's the extend of my frustration and anger. I can't relate to people anymore. I can't talk to them and listen to everyday worries. Everyday news. When all I want to do, is go home and crawl into bed. To stare unseeingly at the dark curtains, wondering what tomorrow will bring.
Enough moaning. An update: Monkeyman is okay. As okay as I guess a child with 30% heart function can be. He's tired. Like always. More than 2 months ago, but not much more than 2 weeks ago. He goes to school, still fulltime. But he asked me to come and fetch him earlier. I have no idea when I should listen to him, and comply. Of course, the teacher says don't worry, he's fine, don't molly-coddle him, keep him and his routine normal. But when as a mother, you hear that your FIVE year old is in heart failure. You have no idea. You don't know when to push him through normal childhood things like a full, tiring week, or when to listen to your instinct that just wants to wrap him up in cottonwool and preserve any little bit of function he has left. At all costs.
His blood tests improved!! Yay!! The transferrine isn't high anymore. The low white blood count is still low, though some of the figures have improved a bit. The dr said there's a number of things that can cause this. But for now, she thinks we should just leave it be and wait. Wait and see. Always, wait and see. I've decided stuff this wait and see. I'm taking him to my trusted GP on Monday. I want him to give me his opinion on how bad off Monkeyman is, and if this wait and see is okay. Because I'm not okay with that. I'm not the wait-and-see type of person.
He's okay so far on the medication. His heartrate drops to about 60 bpm (beats per minute) from a usual of around 80-90. So that's fabulous! Unfortunately, it doesn't stay that way for very long. And we're only giving the medication twice a day. But, we're still on half a dose. About a quarter of what he's allowed and been prescribed. So there's still room for improvement. Apart from his heart beating very deliberately and slowly after the meds, I haven't noticed any other changes, signs or side effects.
Boeboe's okay. Doing homework 2-3+ hours a day. Stressing big time. Anxiety through the roof. No relief on the new medication. No change on the higher dose. Still anger. Still screaming. Still not able to always communicating fully.
Peanut is doing really well. She speaks so well for her age. It's so cute. I'm enjoying her thoroughly. She's extremely attached to daddy. Cries if he leaves her alone for even a minute. So sweet.
Mr N is still like a fish in water, but seems to realise that grade 7 isn't and will not be easy. It's alot of pressure, and alot of work. He's handling it well though. So far.
Yes, life goes on as normal. I still do the washing. I still fetch the kids from school, smile at the other mommies and chat as if I'm happy as larry. I cover their schoolbooks with plastic. I attend parent evenings at school. We watch tv at night as a family. We sit outside drinking coffee while the kids play around us. We go to the shop and we have dinner with friends. I go out, I read, I research. Life goes on as normal. Except that every few seconds, my heart contracts in fear when I remember that my mom was dying, while my life went on as normal. That while her heart function declined and continued to decline despite medication, my life went on as normal. I shopped, I took care of my baby, I watched television, I read, I visited friends. While my mom was dying of heart failure. From 25%, it was about 3 months to the end. Is my life going on as normal now, while my son...?? I can't even type that out. So yes, every minute of every day, I think about the fact that my son's heart function is 30%. It just SEEMS as if my life is going on as normal...
And I envy them.
I want to go back to who I was. Who I was 1 year ago. The person and mom I was. The optimistic, care-free, happy, easy-going person who didn't feel this constant sadness, anger, resentment and worry inside. Who choke up when Tears in Heaven comes up. Who can't listen to Butterfly Kisses or look at a normal 5-year old little boy running around like he has all the energy in the world.
I'm jealous. I'm insanely, unstoppable jealous. I resent every thing that has turned our lives upside down. I resent innocent bystanders that isn't involve in our story at all. I resent people laughing and going on with life like normal. I resent people. I resent them for not suffering like us. I resent them for their carefree lives. I resent them for their freedom from worries.
I know. Everyone hurts. Everyone worries. Everyone has things that makes them unhappy, sad, worried, resentful. But believe me, the type of worry takes on a WHOLE different meaning, when you have a child that's this ill. That has this sword hanging over him. You look at other, healthy children, and you get this overwhelming sadness. Wishing that for your child, your family. For you.
It's not that I expect the world to come to a standstill. It doesn't even for things much, much worse than what we're going through. I also don't expect people that has had a difficult day, a child with the flu, someone going through divorce or moving house, to not stress or think they have no right to worry or stress or having a difficult time. Everyone has the right. Everyone lives through difficult times. Everyone worries. Everyone has stress. Everyone has the right to cry and scream and be angry.
So allow me to now cry and scream and be angry. And feel like my life is falling apart. And that other people's lives look so much better, so much easier, than mine. I know, there's always someone worse off. Always someone that wish they were rather me instead. But for now, I just want to be angry that our lives isn't that easy anymore. Quite the opposite.
I'm so tired of constant worry. Of living under unbearable stress. Of tears that sits just underneath the surface. Of not being able to even talk normally to people. Of lying awake late at night when it's quiet. Wondering what the new day will bring.
I'm tired of people asking "How are you?" when they're not really ready for the answer. If I rant and rave, cry and scream, what will they say? What will they do? People tell me "I don't know how you do it." You know what? Me neither. So can I scream now? Can I cry? Will you think: "Oh, that's more like it! That's more normal!" and slap me on the back in joviality? Or would you be uncomfortable, not knowing what to say or do, thinking: "Gosh, she's loosing it!".
So if I don't cry and scream when you see me, it means I'm strong, able to handle all of it? But if I do cry and scream.... seems like I'm damned if I do, and damned if I don't.
So back to my point of view that has changed. I look at people, and I feel like I can't connect. What I thought about life, what I lived every day, it's gone. It's changed. I don't feel like that at the moment. I talk to people, and all I'm thinking is "You have no fucking clue". Sorry for swearing, but at this point, that's really how I feel. That's the extend of my frustration and anger. I can't relate to people anymore. I can't talk to them and listen to everyday worries. Everyday news. When all I want to do, is go home and crawl into bed. To stare unseeingly at the dark curtains, wondering what tomorrow will bring.
Enough moaning. An update: Monkeyman is okay. As okay as I guess a child with 30% heart function can be. He's tired. Like always. More than 2 months ago, but not much more than 2 weeks ago. He goes to school, still fulltime. But he asked me to come and fetch him earlier. I have no idea when I should listen to him, and comply. Of course, the teacher says don't worry, he's fine, don't molly-coddle him, keep him and his routine normal. But when as a mother, you hear that your FIVE year old is in heart failure. You have no idea. You don't know when to push him through normal childhood things like a full, tiring week, or when to listen to your instinct that just wants to wrap him up in cottonwool and preserve any little bit of function he has left. At all costs.
His blood tests improved!! Yay!! The transferrine isn't high anymore. The low white blood count is still low, though some of the figures have improved a bit. The dr said there's a number of things that can cause this. But for now, she thinks we should just leave it be and wait. Wait and see. Always, wait and see. I've decided stuff this wait and see. I'm taking him to my trusted GP on Monday. I want him to give me his opinion on how bad off Monkeyman is, and if this wait and see is okay. Because I'm not okay with that. I'm not the wait-and-see type of person.
He's okay so far on the medication. His heartrate drops to about 60 bpm (beats per minute) from a usual of around 80-90. So that's fabulous! Unfortunately, it doesn't stay that way for very long. And we're only giving the medication twice a day. But, we're still on half a dose. About a quarter of what he's allowed and been prescribed. So there's still room for improvement. Apart from his heart beating very deliberately and slowly after the meds, I haven't noticed any other changes, signs or side effects.
Boeboe's okay. Doing homework 2-3+ hours a day. Stressing big time. Anxiety through the roof. No relief on the new medication. No change on the higher dose. Still anger. Still screaming. Still not able to always communicating fully.
Peanut is doing really well. She speaks so well for her age. It's so cute. I'm enjoying her thoroughly. She's extremely attached to daddy. Cries if he leaves her alone for even a minute. So sweet.
Mr N is still like a fish in water, but seems to realise that grade 7 isn't and will not be easy. It's alot of pressure, and alot of work. He's handling it well though. So far.
Yes, life goes on as normal. I still do the washing. I still fetch the kids from school, smile at the other mommies and chat as if I'm happy as larry. I cover their schoolbooks with plastic. I attend parent evenings at school. We watch tv at night as a family. We sit outside drinking coffee while the kids play around us. We go to the shop and we have dinner with friends. I go out, I read, I research. Life goes on as normal. Except that every few seconds, my heart contracts in fear when I remember that my mom was dying, while my life went on as normal. That while her heart function declined and continued to decline despite medication, my life went on as normal. I shopped, I took care of my baby, I watched television, I read, I visited friends. While my mom was dying of heart failure. From 25%, it was about 3 months to the end. Is my life going on as normal now, while my son...?? I can't even type that out. So yes, every minute of every day, I think about the fact that my son's heart function is 30%. It just SEEMS as if my life is going on as normal...
Wednesday, January 22, 2014
Such bad news
My worst fear was confirmed today. Monkeyman is in heart failure with a function of 30%. As far as I remember from what I read, it should be above 60%. He's been put on medication. We'll have to see how it goes.
I'm a bit numb, not yet in full panick mode. I think I hit that yesterday already. When I read the x-ray report and saw that his heart is enlarged. I just knew that it was bad news. Which is why I was so awfully upset and sad.
The cardiologist is still very loath to put him through unnecessary radiation. So again she decided against doing a CT/MRI scan of his lungs. Even though she still don't know if/what's wrong on his x-rays.
She repeated the bloodtests. Apparently, his white blood count in June last year was already low. So it's continuously low for 6 months. We'll see what today's shows. I'm not really optimistic. I didn't worry too much yet about this, because he's such a healthy child that doesn't get the flu or throat or ear infections. But, the cardiologist said that that's a really worrying thing. To have a low white blood count and not fall ill. Doesn't make sense to me, but she was really worried about that.
This morning, he complained bitterly about his legs and feet (shins/knees/ankles) aching again. I really don't think this is growing pains. :-(
I need answers. This dr is very conservative. Believes in the wait-and-see approach. I'm not sure if we have that time with Monkeyman? How aggresively should this be tackled?? We got a low dose of one medication.
I'm so scared. How on earth are we going to get through this?
I'm a bit numb, not yet in full panick mode. I think I hit that yesterday already. When I read the x-ray report and saw that his heart is enlarged. I just knew that it was bad news. Which is why I was so awfully upset and sad.
The cardiologist is still very loath to put him through unnecessary radiation. So again she decided against doing a CT/MRI scan of his lungs. Even though she still don't know if/what's wrong on his x-rays.
She repeated the bloodtests. Apparently, his white blood count in June last year was already low. So it's continuously low for 6 months. We'll see what today's shows. I'm not really optimistic. I didn't worry too much yet about this, because he's such a healthy child that doesn't get the flu or throat or ear infections. But, the cardiologist said that that's a really worrying thing. To have a low white blood count and not fall ill. Doesn't make sense to me, but she was really worried about that.
This morning, he complained bitterly about his legs and feet (shins/knees/ankles) aching again. I really don't think this is growing pains. :-(
I need answers. This dr is very conservative. Believes in the wait-and-see approach. I'm not sure if we have that time with Monkeyman? How aggresively should this be tackled?? We got a low dose of one medication.
I'm so scared. How on earth are we going to get through this?
Monday, January 20, 2014
My heart's just breaking
I'm not so strong. I'm not strong enough for this. I can handle all the kicks life's dishing at us, up to a point. I'm soon reaching that point. Having one child goes through this is bad enough. But two. It's impossible not to just break down and throw in the towel. If only I could just "resign" and say I have had enough! What choice do I really have? How do you go on when you sometimes feel you can't?
Monkeyman had his x-ray repeated this morning. And again, it says there is unchanged peribronchial wall thickening. It's essentially similar to the ones in September and October (and of when he was age 1 - my husband found it after I searched for it for months).
This morning's report also states that he now again has "sign of cardiomegaly". Which means his heart is enlarged again.
I.CAN'T.ANYMORE.
We're seeing the cardiologist tomorrow. Hopefully, his heart isn't more enlarged from what it was last year. Hopefully, it's just because it's a different radiologist that has looked at it this time. Hopefully, there's nothing MORE to worry about. Like congestive heart failure. Oh God. I can't anymore.
I so wished his x-ray would be cleared. The cardiologist said if it's clear, we won't need a CT or MRI scan. So will we need it now? I need answers. I NEED answers!
He's so very tired at times. He wakes up tired. He goes to bed tired. He complains many times during the day. But, he was able to go to school last week and was "fine" accordingly to the teacher. I know he's pushing himself. Is this ok to do?? Why don't they tell us what we can/must/musn't/cannot do or allow!!!
Boeboe's OK. No change on the higher dossage of risperlet. I'm so sad about that. She's angry, she screams constantly. She's feeling sorry for herself. She's not doing well at school. She's struggling with communication. I don't know what to do.
I'm just done. Sorry for the extremely negative and self-pitying post. I'll update tomorrow after the cardiologist visit (it's only after school). I'm sure I'll feel better tomorrow. Not-sleeping enough + teething baby + 2 kids with issues + bad news = one very negative mommy.
Monkeyman had his x-ray repeated this morning. And again, it says there is unchanged peribronchial wall thickening. It's essentially similar to the ones in September and October (and of when he was age 1 - my husband found it after I searched for it for months).
This morning's report also states that he now again has "sign of cardiomegaly". Which means his heart is enlarged again.
I.CAN'T.ANYMORE.
We're seeing the cardiologist tomorrow. Hopefully, his heart isn't more enlarged from what it was last year. Hopefully, it's just because it's a different radiologist that has looked at it this time. Hopefully, there's nothing MORE to worry about. Like congestive heart failure. Oh God. I can't anymore.
I so wished his x-ray would be cleared. The cardiologist said if it's clear, we won't need a CT or MRI scan. So will we need it now? I need answers. I NEED answers!
He's so very tired at times. He wakes up tired. He goes to bed tired. He complains many times during the day. But, he was able to go to school last week and was "fine" accordingly to the teacher. I know he's pushing himself. Is this ok to do?? Why don't they tell us what we can/must/musn't/cannot do or allow!!!
Boeboe's OK. No change on the higher dossage of risperlet. I'm so sad about that. She's angry, she screams constantly. She's feeling sorry for herself. She's not doing well at school. She's struggling with communication. I don't know what to do.
I'm just done. Sorry for the extremely negative and self-pitying post. I'll update tomorrow after the cardiologist visit (it's only after school). I'm sure I'll feel better tomorrow. Not-sleeping enough + teething baby + 2 kids with issues + bad news = one very negative mommy.
Monday, January 13, 2014
2014 - here we go!
I knew this year's going to be extremely difficult. I was prepared for it. Still not nice though. First my FIL spent a week in hospital (he's fine now). Today my stepmom was admitted. And it's not sounding good. Also, we had Boeboe's psychiatric visit, and it was both a good and a bad visit. Maybe, for the sake of those with kids like mine that lands up on this blog after a search, let me expand on this for a moment.
Boeboe's been put on Risperlet, the generic of Risperdal. Firstly, it was for anxiety, and secondly for psychosis. She went onto 0.25mg per day the first 2 weeks. Then on 0.5mg for another 6 weeks. The first 2 weeks went very well. She immediately, within 24hrs, noticed that it made her less angry. I was amazed.
Shortly after going on the double dose, she had the following changes:
It was extremely interesting, if I don't look at it from a mom's perspective. Seeing her change so quickly. And then saw her revert back right in front of our eyes. I loved having the quiet, serene little girl who didn't scream at me, who held a conversation with me, who didn't throw tantrums. But, it was so good to see my little girl happy, laughing, smiling again when the pills stopped working. Playing with her 5-year old brother like she used to, playing with her beloved dolls, eating breakfast again.
So we took her for her follow-up today. She's been prescribed an even higher dose of the Risperlet (0.75mg) and another anti-depressant (zoloft). The psychiatrist said that it sounds to her like we had a good month on the risperlet, and that it stopped working because the dossage isn't high enough for her. The anti-depressant I believe, is to take care of the anxiety that wasn't helped by the risperlet. I felt guilty for enjoying an angry-free Boeboe, when it surpressed all her emotions. But the psychiatrist told me that it was better for Boeboe as well, when she wasn't this angry person all the time. Boeboe vocalised it. At least twice. The third time I asked, was about 2 weeks ago, and she said the pills doesn't make her feel different anymore. Shortly thereafter I noticed her returning to what she was before them.
So we'll give it a go. It's not like she was sad, unhappy or such. It was just strange to suddenly have a mature Boeboe in the house. But, when she was gone, I missed her. But, it also was so good to see the old Boeboe back. Very confusing!! I'm just following the psychiatrist on this one, because as a mom, I wouldn't want to be forced to choose between an overly happy, childish, angry Boeboe, and a calm, quiet, serene, mature Boeboe.
Oh, and by the way, if you're confused about how a child could both be very happy and extremely angry - welcome to our world!! Hahahaha. :-)
The psychiatrist still feels strongly that it's VCFS causing everything. She mentioned something else today that Boeboe had/has, again pointing to VCFS. I feel like a pendulam, because just this past week, I stumbled on 16p11.2 duplication during my research. And it fits Boeboe like a glove. Honestly, everything I read, made me think "this is Boeboe". Except for seizures. She never had any seizures as far as I know. Oh well, we have no choice other than just wait and see. I just hope we get some answer eventually. Whether it be 22q or 16p, a deletion or a duplication, what difference does it really make? Well, to be honest, I'm hoping 16p rather. It just seemed a little milder, a little better prognosis. Maybe it'll be something totally different. Or, maybe, we'll never know.
Just a last note before I go to bed. Monkeyman is starting formal primary school on Wednesday. It worries me. The holiday made him tired. He's not used to having 3 siblings around him day after day, demanding him to play with them. I scheduled regular rests inbetween play, forcing them to sit or lie down without anyone of them noticing (playing a movie and ordering them to watch it "while baby is napping", else their noise wake her up). It helped. But still, he was deadtired by the evenings. So how's he going to handle going to school for 5 days a week, 5hrs a day? He's only used to 3x a week, 4hrs a day. His previous teacher said he would play along at school, then suddenly just withdrew, sitting alone somewhere. After 10 minutes, he'd jump up and join the group again. She allowed him to do that, because she knew him from birth, about his tiredness. So tomorrow I'm seeing his new teacher, to ask her to keep an eye on him, to allow him to pace himself, to reserve his energy. I hope she'll be accomodating and sympathetic. I believe she will. She knows me already, she was Mr N's teacher as well, 7 years ago. Gosh, we've come a long way. Seven years ago I scared the poor teacher by dropping an epileptic child onto her lap. Now, it's a heart-disease child. Thank God we can't see the future. It would've been too much for me.
Boeboe's been put on Risperlet, the generic of Risperdal. Firstly, it was for anxiety, and secondly for psychosis. She went onto 0.25mg per day the first 2 weeks. Then on 0.5mg for another 6 weeks. The first 2 weeks went very well. She immediately, within 24hrs, noticed that it made her less angry. I was amazed.
Shortly after going on the double dose, she had the following changes:
- She was much less angry - almost no temper tantrums. No screaming fits.
- She was more easily irritated, and less patient and less empathatic.
- She was more mature. Having conversations on a 10-year old's level. Playing like a 10-year old. Suddenly, she said she's too big/old for playing with her dolls anymore.
- She was level-headed, calm, serene. Not bubbly anymore.
- She was almost sad (she denied being sad). Very introspective. Smiling less. Laughing less.
- She had very little appetite.
- She got frightened very easily.
- She still had some general anxiety, especially the small things. Bigger things she handled better.
- She had worsened separation anxiety.
It was extremely interesting, if I don't look at it from a mom's perspective. Seeing her change so quickly. And then saw her revert back right in front of our eyes. I loved having the quiet, serene little girl who didn't scream at me, who held a conversation with me, who didn't throw tantrums. But, it was so good to see my little girl happy, laughing, smiling again when the pills stopped working. Playing with her 5-year old brother like she used to, playing with her beloved dolls, eating breakfast again.
So we took her for her follow-up today. She's been prescribed an even higher dose of the Risperlet (0.75mg) and another anti-depressant (zoloft). The psychiatrist said that it sounds to her like we had a good month on the risperlet, and that it stopped working because the dossage isn't high enough for her. The anti-depressant I believe, is to take care of the anxiety that wasn't helped by the risperlet. I felt guilty for enjoying an angry-free Boeboe, when it surpressed all her emotions. But the psychiatrist told me that it was better for Boeboe as well, when she wasn't this angry person all the time. Boeboe vocalised it. At least twice. The third time I asked, was about 2 weeks ago, and she said the pills doesn't make her feel different anymore. Shortly thereafter I noticed her returning to what she was before them.
So we'll give it a go. It's not like she was sad, unhappy or such. It was just strange to suddenly have a mature Boeboe in the house. But, when she was gone, I missed her. But, it also was so good to see the old Boeboe back. Very confusing!! I'm just following the psychiatrist on this one, because as a mom, I wouldn't want to be forced to choose between an overly happy, childish, angry Boeboe, and a calm, quiet, serene, mature Boeboe.
Oh, and by the way, if you're confused about how a child could both be very happy and extremely angry - welcome to our world!! Hahahaha. :-)
The psychiatrist still feels strongly that it's VCFS causing everything. She mentioned something else today that Boeboe had/has, again pointing to VCFS. I feel like a pendulam, because just this past week, I stumbled on 16p11.2 duplication during my research. And it fits Boeboe like a glove. Honestly, everything I read, made me think "this is Boeboe". Except for seizures. She never had any seizures as far as I know. Oh well, we have no choice other than just wait and see. I just hope we get some answer eventually. Whether it be 22q or 16p, a deletion or a duplication, what difference does it really make? Well, to be honest, I'm hoping 16p rather. It just seemed a little milder, a little better prognosis. Maybe it'll be something totally different. Or, maybe, we'll never know.
Just a last note before I go to bed. Monkeyman is starting formal primary school on Wednesday. It worries me. The holiday made him tired. He's not used to having 3 siblings around him day after day, demanding him to play with them. I scheduled regular rests inbetween play, forcing them to sit or lie down without anyone of them noticing (playing a movie and ordering them to watch it "while baby is napping", else their noise wake her up). It helped. But still, he was deadtired by the evenings. So how's he going to handle going to school for 5 days a week, 5hrs a day? He's only used to 3x a week, 4hrs a day. His previous teacher said he would play along at school, then suddenly just withdrew, sitting alone somewhere. After 10 minutes, he'd jump up and join the group again. She allowed him to do that, because she knew him from birth, about his tiredness. So tomorrow I'm seeing his new teacher, to ask her to keep an eye on him, to allow him to pace himself, to reserve his energy. I hope she'll be accomodating and sympathetic. I believe she will. She knows me already, she was Mr N's teacher as well, 7 years ago. Gosh, we've come a long way. Seven years ago I scared the poor teacher by dropping an epileptic child onto her lap. Now, it's a heart-disease child. Thank God we can't see the future. It would've been too much for me.
Wednesday, January 1, 2014
Goodbye 2013, Hello 2014
So long, 2013. Can you believe it? I swear time is speeding up as time goes by. I'm sad to see the kids grow up, but I'm NOT sad to see the end of 2013. It really turned out to be one of the most trying times in our lives. The pulmonary hypertension really hit me hard. I researched, as I do everything, and it scared the *&^ out of me. So when we got the cardiomyopathy diagnosis, I was numb already. I expected the worst, and I got the worst. Different "worsts", but still. Whatever the method, our child has heart disease. No getting around that fact anymore. It's been diagnosed. With absolutely no hope given for improvement. Just a flatout "No" to the question if there's any chance of healing. Our only hope lies in the fact that whatever the cause, it won't do any more damage, and that his heart would be able to cope with whatever life brings, without failing again like it did after the adenoidectomy, sleep apnea and pulmonary hypertension.. A slim hope. But, hope nonetheless. At least we still have that.
So I don't know if 2014 will be better or not. If we end the year with both Boeboe and Monkeyman given the all clear for any syndromes, chromosomal defects or mitochondrial diseases, I guess we'll be classifying it as a better year than 2013. But if there's more definite diagnoses, like the heart disease, the psychosis, etc. then I'm not sure if we're facing such a great year. But, let's not get worried about whatever hasn't happened. There's more than enough definites to worry about.
2013 wasn't just bad. So much good and happiness too. Monkeyman's social growth was really one of the highlights of my year. It just wasn't easy for him to let go and love other children, school, teachers, everything. But the progress he made in just the last year alone, is remarkable. I'm so happy for him. That he can now go to school, being confident and happy and secure. Knowing that whatever he feels, his parents are there for him, that he can go out into the world and know the people he loves and trust, will always have his back. It wasn't always easy, not with another baby on my hip, but I really tried to give him the security he clearly needed. I also tried to give him all the exoeriences we could cram into the year. Every event at school, every water-day, farm-day, theatre productions, parties, any and everything we could, I let him participate. Even if it meant tagging Peanut along and ending up with a grumpy baby who missed her morning nap. I'm happy that I could do that for Monkeyman though. Due to his social issues, he missed out on it the previous years. And this was his last year in pre-primary. The last time there would be so many events and opportunities. From next year, he's in "big school". Primary school. Only grade R, but still. Much more school-like. Exciting though!
Seeing Peanut grow from a tiny infant into a self-asserting toddler also made 2013 special. She's such a little character. I thoroughly enjoyed her the past year. Usually, I love the 6-12 month period. But with her, I really loved the 12-18 months. She got so much personality. She can be extremely sweet and loving. But she knows what she wants, when she wants it, and why and how she wants it. And she demands it. Though, when we disciplin her or deny her something (like more sweets than what's good for her!), she accepts it after being sad for a short while (literally, like within a few seconds). There really is none of those massive blowouts or crying and crying, like it was with Boeboe. Peanut can move on. Even when we don't understand what she wants immediately, she'll just continue to try and tell us in her way. Not like Boeboe, who got impatient and extremely angry and agitated. When Peanut asks something, and we say no, she realises that we DID understand what she wanted, the answer was just still no. With Boeboe, it was and still is a problem, to make her realise that we understood her, we just didn't agree with her. That it wasn't a communication problem, but a parenting decision.
With Peanut, it was also good to see how this little being that knew nothing except reacting to instincts a year ago, turned into a child that can hold a crayon, drink from a glass, walk on her own two feet, say difficult family members' names, push a toycar or throw a ball. Or care for a doll like it's her own baby, enjoy and return a hug, clap hands and feed herself. Isn't it amazing, what they learn between 6 months and 18 months? Her speech and understanding of speech keep amazing me. She can say so many words, that I've stopped counting. We've long gone since passed 50. She even put 2- and 3-word sentences together. And she can understand complicated sentences, answer questions and follow instructions. It really was a good year, experiencing all of that with our very last little baby.
It was also good to see the growth in Boeboe and Mr N. Getting bigger, taking on more things. Almost kinda "growing into their skin". And to have a whole year with Mr N not on any medication for epilepsy, not seeing any seizures, nothing. That was good as well.
So yes, it wasn't just a bad year. But, overall, I think we'll remember 2013 as the year Monkeyman got diagnosed with two different heart diseases. One he was able to heal from, one not. Let's hope that 2014 will bring answers, but not more problems, more heartache, more difficulties to handle for any of us, most of all, not for any of the kids. Just one easy-going year. For Monkeyman to settle and be happy in the new school. For Boeboe to gain confidence in her academic abilities, and to settle on the medications. For Mr N to enjoy his last leisurely primary school year. And for Peanut to enjoy her last baby days before she's a proper little girl.
Happy New Year!!
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