It's now been almost 10 days since we took Monkeyman off all his meds, including the vitathion with the ATP that we have been giving him for about 8 months (I think). ATP is the energy your mitochondria manufactures. Which is one of the reasons why they believe he may have a mitochondrial disease. We usually only gave him half a sachet every week day, so that he could cope with his long school hours. Of course we knew it was working, or we wouldn't have given it to him for months and months. But we never realised how exceptionally good it was working. Until we had to take him off completely. :-(
The first few days, last weekend, were normal. Monday and Tuesday he still went to school, since his siblings were writing exams and had to be at school. I noticed that Monkeyman was more irritated, teary and less energetic. He had a few meltdowns in the shop, which was very unlike him. But overall, it was still "ok". On Wednesday he stayed home with his siblings, and we visited his old play school for an hour or so. When we got home, it was clear. He was soooo tired, that everything just got to him. He cried at the drop of a hat. I even asked him in exasperation - why are you crying about everything? He shrugged. He was pale, the little blue vein on his chin was dark, his heart beat so hard that it felt like it's jumping out of his chest, his face was withdrawn, his eyes half hooded, his shoulders hunched, and he lost his sparkle.
On Thursday we went to a family restaurant for breakfast with friends, and all 3 his siblings were with him. Something that he usually cherishes. Ag man, I can just cry. He played with them in the play area for about 20min of the 2+ hours we were there. Then he lied down. On the floor, on the cushions they have in the playroom, and in the end, on the couch of the table behind me. He was crying, because he was sooooo tired, but couldn't sleep because of the noise. So he just laid there for almost 2 hours. Barely moving, but awake. Completely miserable. (Yes, afterwards I realised that I should've cut the outing short, but I also have 3 other kids to consider. It's almost a tradition now, and one they're really looking forward to every term. Going to Spur after exams are done.)
Later that day, Monkeyman told me: "Mommy, do you know why I think I'm crying so much? It's because I'm just so tired all the time and wants to sleep, but I can't."
How can this be normal? How can this be fair? Have my boy worsened while the vitathion masked it? Or was it always like this and we never noticed it getting/being this bad? Did the full-time school this year caught up with him, as I was afraid it would? Last year, I kept him at home 2 days of the week, apart from the weekends, and on days he was tired or seemed to crash. The teacher also told me when he had a bad day, then I would keep him home the next day. This year, there was none of that. Just a tired little boy that had to keep going like the energiser bunny, day after day, month after month. Because it's formal schooling.
I'm angry. I'm so very very angry.
I so wanted him to prove to us that it's NOT mitochondrial. I wanted him to be FINE this December. While on holiday. I wanted him to defy the odds and the tests and the doctors and their predictions and assumtions and diagnoses. I wanted him to be OK.
He's not.
And that breaks my heart. I'm not sure if I can handle this. To see your little boy lie down on a couch in a restaurant which he LOVES, it does something to a mother's heart. And it worries me. So much. All these years, he only needed a short rest when he got tired. He would lie or sit down for 10 or 30 minutes, and be fine! He would go and play again. Not this time. :-( This time, he didn't get up again. He found no joy in the restaurant. No joy in being with his (laughing, playing) siblings. No joy in being out, being treated with good food and company. He was miserable. Miserable from tiredness. How awful, for a little 6-year old boy to feel like that. Especially when this was one of his most treasured outtings in the past.
If I ever doubted this whole process, I now know we're doing the right thing. I'm just not sure if I'm strong enough to face the answers we might get. Especially if he is now worse off than what he was 1 year ago. Does that mean it's gonna be true? He's going to have a mitochondrial disease that's progressive, uncurable, and usually ends in an early death? I can't face that. But seeing him like this.... I can't stop the process. He needs help. Help I can't give him.
Today, he has a fever. :-( Sick again. I wanted to send him to school tomorrow, since Boeboe has to go, and he misses his friends. He hasn't been to school since Tuesday. But now he's ill. Again. Ai man, how is this ok???
We had Boeboe's checkup with her urologist last week. He says she's going through a bad cycle. Not necessarily because the cord is retethered. Bladders aren't static, and goes through good and bad cycles all the time. She's in a particularly bad one. Her bladder wand is all thick again. :-( It breaks my heart, seeing her go through all of this again. Knowing that for a bladder wall to thicken, she must be going through horrendous and painful bladder contractions again. I can just scream. Scream at the powers that has done this to my baby. The powers that has allowed this. My husband told me, it feels like we've been cheated. Cheated out of a daughter who can just be a normal, happy, healthy child, and not having to deal with this. We just want her to be happy! To not having to worry about taking an extra set of clothes wherever she goes. About whether there's a bathroom closeby, or if someone's going to notice her trying to control the bladder contractions. Dehydrating herself in the hopes that she won't need a bathroom.
The dr has changed her medication, to something that will hopefully work better and longer, as well as give the bladder a better chance at healing again. After 3 months, we'll see how it goes. If necessary, we'll then book another botox session. Next week, we're having the appointment with the neurosurgeon to rule out a retethering. Accordingly to the urologist, the fact that only the bladder function has declined, is a positive sign that it might not be a retether. I'm going to hold onto that.
Another thing that feels like it just tipped my balancing act, was Friday night. We were having a good evening, with family and pizza, when Boeboe screamed in terror and pain. She pressed on the couch, and something stung her hand. Her body immediately reacted. Her palm turned dark red, blotches, swollen and really painful. There was a clear little bloodied hole in the middle of a perfectly round white circle. It looked exactly like the mark she got when a wasp stung her years ago. Except, this time, she was reacting really badly to it. I gave her a desselex (antihystamine), tried some ointments and treatments (like a cortisone cream), and kept a close eye on her. After 20 minutes, she had a red line rapidly moving upwards from her handpalm past her elbow onto the upper arm. So I took her to the all-night clinic close by, where the dr confirmed that she was having a severe allergic reaction to what he also believed, must've been a wasp. He couldn't be 100% certain, but that was his best and first guest. (We never caught or saw what it was, despite a fruitless search for it.) He gave her high doses of steroids, and it worked extremely fast. A few hours later the red line was gone, the swelling going down, the pain gone and the red colour fading a little. It's now 2 days later and it's still very noticeable, but contained to her handpalm. She's still on high doses of steroids, but we're weaning off it now. Ag man, just what I needed. To add wasps to her always changing list of allergies. :-( On the way back home in the car, she told me: "Mommy, Monkeyman is really fortunate. That he's not allergic to anything." She sounded so sad.
Let's try and end on a happier note. Mr N got an award for maths last week! I'm so proud of him. Afterwards, we all sat around the kitchen table, and ate ice creams. To celebrate. It was so good. One moment of bliss and beautiful memories with 4 laughing, happy little faces, in between the miserableness and stress around us.
Sunday, November 30, 2014
Sunday, November 23, 2014
Small Update and POA
Last week, the cardiologist phoned to hear how Monkeyman is doing on the new medications. I told her that the first 2 weeks we saw absolutely no improvement (which is perfectly normal, it apparently takes quite a while). The 3rd week he had a fantastic week. Definitely more energy in the afternoons. He played and yelled and ran around in the house like any normal 6-year old. I had to yell at him at times to stop being so boisterous! What a great feeling. :-) But, it's not that he has never had such weeks. Maybe, it was just a good week after some really bad ones. Who knows?! This 4th week he was less energetic. Much more lethargic. More pale again, cricles appearing again which were gone last week. But, it wasn't a bad week just yet. More just a normal, average week. Ontop of this, since yesterday he has symptoms of a cold. Which could be the reason for the bad week.
So what to say? Does the medication work? I don't know. Yet. So at that moment, the doctor asked what I wanted to do, because it's coming towards the end of the year and things are slowing down to a standstill in our country. You're lucky if you could get anything done in December here!! I had a very normal, though little strange for me, moment where I just couldn't go forth with it. I backtracked. At that moment, I just couldn't face putting Monkeyman through a biopsy, looking for a diagnosis I really, really, do NOT want for him. Who wants their child to have an incurable, progressive illness?? And really... do I think he has a mitochondrial disease? Really, really believe it? No. I'm far from convinced. So I said we needed more time. But after putting the phone down, I realised that waiting would mean that we would only start the process in January, which would mean we'll take him off all of his medications just as he starts grade 1. It seemed a bit stupid. It felt unfair towards Monkeyman. All because of my moment of fear and doubt.
So I phoned the doctor back the next day, and she said she spoke to the mitochondrial specialist about the order things need to happen in. First, there's a blood test they want to do. For this, he have to be off the medications for 2 weeks at least. So we've stopped the meds on Friday, and in little less than 3 weeks from now, we'll test. If it's negative, the cardiologist said we'll go forth with the muscle biopsy. Probably in January then, I guess. If it's positive... well, I didn't ask her that part. Oops. I guess I don't want to entertain that thought just yet.
While I'm updating.... It's going so well with the exams!! I don't have many marks of the kids just yet, but from what they said after each exam, I really believe their hard work (and mine!) has paid off this exam. I taught them a technique which seems to have helped memorising the massive amounts of work they have. Even after summarising, it's still pages and pages and pages of facts and information.
I'm so relieved that it's going so well. We're on the last few days and subjects. Just one more for Boeboe, and 2 more for Mr N. Then they're (hopefully!) done with school for the year!! Done with this school, and done with primary school for Mr N!! Can't believe my baby is now (almost) a highschool teenager. Where has time gone by?
So what to say? Does the medication work? I don't know. Yet. So at that moment, the doctor asked what I wanted to do, because it's coming towards the end of the year and things are slowing down to a standstill in our country. You're lucky if you could get anything done in December here!! I had a very normal, though little strange for me, moment where I just couldn't go forth with it. I backtracked. At that moment, I just couldn't face putting Monkeyman through a biopsy, looking for a diagnosis I really, really, do NOT want for him. Who wants their child to have an incurable, progressive illness?? And really... do I think he has a mitochondrial disease? Really, really believe it? No. I'm far from convinced. So I said we needed more time. But after putting the phone down, I realised that waiting would mean that we would only start the process in January, which would mean we'll take him off all of his medications just as he starts grade 1. It seemed a bit stupid. It felt unfair towards Monkeyman. All because of my moment of fear and doubt.
So I phoned the doctor back the next day, and she said she spoke to the mitochondrial specialist about the order things need to happen in. First, there's a blood test they want to do. For this, he have to be off the medications for 2 weeks at least. So we've stopped the meds on Friday, and in little less than 3 weeks from now, we'll test. If it's negative, the cardiologist said we'll go forth with the muscle biopsy. Probably in January then, I guess. If it's positive... well, I didn't ask her that part. Oops. I guess I don't want to entertain that thought just yet.
While I'm updating.... It's going so well with the exams!! I don't have many marks of the kids just yet, but from what they said after each exam, I really believe their hard work (and mine!) has paid off this exam. I taught them a technique which seems to have helped memorising the massive amounts of work they have. Even after summarising, it's still pages and pages and pages of facts and information.
I'm so relieved that it's going so well. We're on the last few days and subjects. Just one more for Boeboe, and 2 more for Mr N. Then they're (hopefully!) done with school for the year!! Done with this school, and done with primary school for Mr N!! Can't believe my baby is now (almost) a highschool teenager. Where has time gone by?
Monday, November 3, 2014
An update on Monkeyman
Ah, the joys of examtime. No time for myself (or this blog!). Yes, we started with revision for the last exam of the year (our schooling year is from January till November). Interestingly enough, I heard the past year about so many countries which either postpone exams until the child is 12 or even older, or who only have 1, or maybe 2 exams a year. We're "supposedly" only doing 2 exams a year, and the other 2 of our 4 terms we do what they call a "test series". But, the tests in the test series is schedule exactly like an exam, the work is about the same amount of work, the stress and pressure is the same, you still get a report card with the marks on it for passing or failing, so ya, what's the difference between a test series and an exam? Nothing! So, we write 4 exams a year, from the year a child turns 10. Every exam is about 2-3 weeks long, and most kids starts to study 1-2 weeks before. So, children studies for between 3-5 weeks, 4x a year, in our country. Pretty hectic!! Don't even ask me what I think the use of this is... I'm hoping for some differences or improvements next year in the private school. But we'll see.
This year, exams has been crazy in our house. I summarise both the 11-year old and the 13-year old's work for them. You can shake your head in appallment, disgust, dissaproval, surprise, or whatever emotion. It does not change the fact that it's the ONLY way my children can currently pass. So my choice is... summarise for them and see them study their butts off and pass? Or, see them study their butts off with their own summaries/no summaries, and see them fail. What would you have done? I'm a SAHM, I have the time, sort of, so I summarize. Because currently, that's what they need. It won't be the status quo for end of time. But for now, this is what we do, because this is what my children needs. But it takes ALOT of hours. Alot. Thus, this blog is last in line. I did, however, took a bit of time today for myself, and I know a number of you are curious how the cardiologist's visit went last week. So here's the update on that.
Overall, it's been a REALLY good visit. Walking out of there, I was sooooo happy that we took him back. Really happy. It didn't start out that way, but fortunately it ended good. You know what I find interesting/puzzling/frustrating? The assumption that almost all the doctors makes within the first 3 minutes of us being in their offices with Monkeyman. I always have to stop explaining why we're there, to let them finish with the proposed solution to their assumptions, and then I explain that no, in Monkeyman's case, this is not a new symptom (so it can't be cancer/depression/low iron/sleep apnea/too little sleep/bad diet/too many late nights/just a phase/psychological/personality/etc. etc. etc). It didn't begin when he started school 10 months ago, or because of summer allergies or because something huge changed in his life like the birth of a baby. We didn't just noticed it the past 6 months or 12 months or even 2 years. It's been there all of his life. From when he was a tiny baby of 4 or 5 months when I noticed it for the first time (and started asking doctors for help), until today, at 6-year old. All of his life. Fortunately, after I explain this (for the millionth time), the doctors usually stop and listen more attentively and redirect their thoughts.
I've wondered why is it so difficult to get that though? Why do I have to explain, and explain again and again to the same doctors that this is not new? I theorise it's because it's extremely rare to deal with a child that has been tired all of his life (adults complaining of tiredness for 6 years, yes, but children?). A physical, draining tiredness that you can see the effects of, on his face and in his body and attitude. Even if there was/would/have been a child that the doctor knows of (that could provide a frame of reference for him/her), the doctor would assume that after 6 years, we would have had the answers already. Or thrown our toys out of the cot or something, because we demand answers.What parents would let this be for 6 years?? So it's impossible for them to wrap their mind around seeing a healthy, normal child (without structural heart or other abnormalities) that presents with tiredness for 6 years as the oldest and mostly only symptom. So they skip over that bit of information the mom gives them, and assume the tiredness must be a new symptom. Until I correct them. And then you can see they hear me. Even though they can't, for themselves, always see it during that 30-minute appointment. Not even all my family can. Most people have to go on my and Monkeyman's dad's word that this is there. That it's real. Just like I can hide almost all my medical problems, Monkeyman can too. And does. And nobody would be none-the wiser, until I either point out the little details, or if they're really astute, they'd notice them and ask me about it. Like my sister, and her husband. They've noticed it over the years, and asked us about it. For example the circles under his eyes, and sometimes being or turning pale.
Sorry, now I'm rambling again. Let's continue with the appointment.
The cardiologist did a thorough exam again, including an EKG and heart sonar. She said his heart function looks good, but his heart wall is still too thin at 2 places. Apparently it's the posterior wall (I think she said this is the back wall?!). Absolutely no improvement in the past 6 months. This seems to mildly concern her, but she just mentioned that it was a typical mitochondrial sign, and that's what she still believes is at the root of Monkeyman's issues
So she prescribed the two medications that most mitochondrial patients have to take. Q10 and Caritinine (hoping I'm spelling this correctly). She wanted him to start taking this a year ago already, but he was only 5 and oppositional with us about taking his Reflux medication whole. I had to open the capsule and throw the contents in his mouth (Peanut also does this....soooooo cute!!). Until Monkeyman turned 6 early this year. Like a lightswitch flipped, he suddenly asked to swallow the capsule whole, and voila! No turning back.
(Just a quick side note. We went to a 3rd opinion cardiologist, who said he can't see the thin heartwall. He only did a 10-minute sonar, and our GP afterwards explained to me how the sonar have to take the still image of the beating heart at just the right moment. This is extremely tricky, and thus not an exact science. He said that he personally would go with the opinion of the doctor that has seen the child for 6 months, and done 4 sonars on, and who takes a bit longer to do the sonars and take the still images. He wasn't slamming either dr, just giving his opinion to a mom that was very conflicted about different medical opinions. So, we're treating Monkeyman as if he does have the thin heartwall, though always hoping that it will improve/dissapear one day, instead of turning into dilated cardiomyopathy.)
Anyway, so the cardiologist asked us to now try him on these mitochondrial medications, even though it's absolutely massive pills, and it's 4 pills 3x a day. She told us to give high dossages for one month, and then phone her. If it seems to have helped him, then it points to mitochondrial. With that information, she can then maybe start ordering some of the tests the mitochondrial specialist will need (kidney and liver tests, muscle biopsy, etc.) This will spare time. Though, to test mitochondrial disease, he will need to be off the meds for at least 2 months. So at the VERY least, we're looking at a 3+ months before we'll have any more information. Except if the meds does nothing for him. Then it means it could be something other than mitochondrial, and we need to widen our search. I'm not sure where we'll draw the line again though. But let's not worry about that yet.
So yes, this is where we stand. Three months of wait and see. Like always. Wait and see. At least, this time it feels to me like we have a plan of action. We're not just passively sitting and waiting to see a specialist that's so overbooked that not even a doctor can get us in to see her! We're trying something to see if it helps Monkeyman. I'm prepared to almost try anything at this point! To help my son. The week before we went to see the cardiologist, he had a huge crash again. It was a hard, hard week. Lots of crying (on his and my part!). Lots of sighing and lying down and moaning and groaning and just being miserable all around. I don't really know what brought it on. Maybe a virus. Because on the Friday before we saw the dr, he vomitted twice. During the night and early morning. No other symptoms, no fever. Just a long recovery again because of dehydration (also a very typical mitochondrial sign, apparently. The child struggles to get his energy back for longer than his peers after being dehydrated.) The difficult week went on for another, making it 2 in a row. On Saturday he was being particularly awful. I took him to a family restaurant with a friend who has a child of the same age. He was looking forward to it, but once there, everything was just too much for him. Urgh, such days are difficult!! He recovered by Sunday, and today he's MUCH better. Despite being in school this morning. Thank goodness!
Oh, and just quickly. I asked the dr about Monkeyman's toe- and fingernails. Fortunately, with the little nailbrush, I got it very clean. (I'll try to take some pics again at some point, but I don't want to put too much emphasys on this and make it a bigger deal to him than what it is.) Unfortunately, the dr admitted that she had absolutely no knowledge or experience on this. She has never seen anything like it and had no idea what it meant. She did say that no way could it be from the mumps, and besides, she noticed multiple lines as well, which negates it being from mumps (only). She also noticed that his pinky toenail is loose. I kinda ignored it, because I didn't want that to become the focal point of the visit, or the problem with his nails. She noticed it in any case, and found it remarkedly and interesting (probably because there's clearly no infection, fungus or other usual cause). But, apart from admitting that she didn't know why or what happened to his nails, and that she doesn't believe it to be from the mumps, she said nothing. So afterwards, I realised that I'm not sure if I should ask anyone else about this? I was concerned that it was his heart, and that's been ruled out. She also palpitated his liver and said to her it seems fine. So I'm happy that there's nothing too serious going on, causing the nails to look that way. I hate medical mysteries, and I'm going to think about this alot, but I don't believe it's necessary to take it futher?
Something else that I asked her about, again, because he complained alot from it on that day, that would also tie into this mitochondrial disease theory, is his legpains. Since he was a little boy of not even 2, he has been complaining about debilitating pain in his legs. Some days, it would be so bad for a few minutes, that he really couldn't walk without starting to cry. It usually passes relatively quickly, though a feeling of tiredness or pain always remains for hours afterwards. Some nights, it woke him up or kept him awake. But mostly, it happened during the day. Usually mornings and afternoons. He also complains about his legs being tired. Really tired. Not just that lazy tired of "aaawww Mom, do we really have to go to the shops"?? Not that tiredness. But something that makes him turn pale if I try to push him. And then all the typical tiredness signs will appear. The hooded eyes, the mouth pulled tightly, the pale skin, the shoulders hanging, the feet dragging. The sighing.
I complained about this leg pains to EVERY doctor we've ever seen. Whether it was for a cold, his heart or whatever. I mentioned it. Always. The drs would all seem mildly concerned, look at his legs, palpitate them, and then either stay quiet or mention "growing pains". Well, I'm at the point where I'm declaring loudly and with conviction. Bullsh*t. This IS NOT GROWING PAINS. I have 3 other children. And this is NOT growing pains. I'm relatively sure that our GP that said it's not leukemia, is right. Because like him, I believe that by this time, others signs would've shown up. In his bloodtests or whatever. He would've been dead by this time. Because it's been going on for at least 5-6 years. So if not growing pains, or leukemia, what is it?
I read that this is a VERY typical mitochondrial symptom. Muscle and leg pains. Some children's legs gets so painful, that they're unable to walk. Some just continue to always complain about legpains. Sounds familiar?
So yes, enough symptoms that I understand why he has now been put on the mitochondrial cocktail. Wish us luck? I have no idea what for, though. For improvement? No, my heart says no. Despite me wanting answers (and definitely improvements!!), I don't want that answer. So maybe, hold thumbs that unlike the vitathion (that we're also still continueing daily), this cocktail does NOT bring improvements. I'd rather start the search over!!
This year, exams has been crazy in our house. I summarise both the 11-year old and the 13-year old's work for them. You can shake your head in appallment, disgust, dissaproval, surprise, or whatever emotion. It does not change the fact that it's the ONLY way my children can currently pass. So my choice is... summarise for them and see them study their butts off and pass? Or, see them study their butts off with their own summaries/no summaries, and see them fail. What would you have done? I'm a SAHM, I have the time, sort of, so I summarize. Because currently, that's what they need. It won't be the status quo for end of time. But for now, this is what we do, because this is what my children needs. But it takes ALOT of hours. Alot. Thus, this blog is last in line. I did, however, took a bit of time today for myself, and I know a number of you are curious how the cardiologist's visit went last week. So here's the update on that.
Overall, it's been a REALLY good visit. Walking out of there, I was sooooo happy that we took him back. Really happy. It didn't start out that way, but fortunately it ended good. You know what I find interesting/puzzling/frustrating? The assumption that almost all the doctors makes within the first 3 minutes of us being in their offices with Monkeyman. I always have to stop explaining why we're there, to let them finish with the proposed solution to their assumptions, and then I explain that no, in Monkeyman's case, this is not a new symptom (so it can't be cancer/depression/low iron/sleep apnea/too little sleep/bad diet/too many late nights/just a phase/psychological/personality/etc. etc. etc). It didn't begin when he started school 10 months ago, or because of summer allergies or because something huge changed in his life like the birth of a baby. We didn't just noticed it the past 6 months or 12 months or even 2 years. It's been there all of his life. From when he was a tiny baby of 4 or 5 months when I noticed it for the first time (and started asking doctors for help), until today, at 6-year old. All of his life. Fortunately, after I explain this (for the millionth time), the doctors usually stop and listen more attentively and redirect their thoughts.
I've wondered why is it so difficult to get that though? Why do I have to explain, and explain again and again to the same doctors that this is not new? I theorise it's because it's extremely rare to deal with a child that has been tired all of his life (adults complaining of tiredness for 6 years, yes, but children?). A physical, draining tiredness that you can see the effects of, on his face and in his body and attitude. Even if there was/would/have been a child that the doctor knows of (that could provide a frame of reference for him/her), the doctor would assume that after 6 years, we would have had the answers already. Or thrown our toys out of the cot or something, because we demand answers.What parents would let this be for 6 years?? So it's impossible for them to wrap their mind around seeing a healthy, normal child (without structural heart or other abnormalities) that presents with tiredness for 6 years as the oldest and mostly only symptom. So they skip over that bit of information the mom gives them, and assume the tiredness must be a new symptom. Until I correct them. And then you can see they hear me. Even though they can't, for themselves, always see it during that 30-minute appointment. Not even all my family can. Most people have to go on my and Monkeyman's dad's word that this is there. That it's real. Just like I can hide almost all my medical problems, Monkeyman can too. And does. And nobody would be none-the wiser, until I either point out the little details, or if they're really astute, they'd notice them and ask me about it. Like my sister, and her husband. They've noticed it over the years, and asked us about it. For example the circles under his eyes, and sometimes being or turning pale.
Sorry, now I'm rambling again. Let's continue with the appointment.
The cardiologist did a thorough exam again, including an EKG and heart sonar. She said his heart function looks good, but his heart wall is still too thin at 2 places. Apparently it's the posterior wall (I think she said this is the back wall?!). Absolutely no improvement in the past 6 months. This seems to mildly concern her, but she just mentioned that it was a typical mitochondrial sign, and that's what she still believes is at the root of Monkeyman's issues
So she prescribed the two medications that most mitochondrial patients have to take. Q10 and Caritinine (hoping I'm spelling this correctly). She wanted him to start taking this a year ago already, but he was only 5 and oppositional with us about taking his Reflux medication whole. I had to open the capsule and throw the contents in his mouth (Peanut also does this....soooooo cute!!). Until Monkeyman turned 6 early this year. Like a lightswitch flipped, he suddenly asked to swallow the capsule whole, and voila! No turning back.
(Just a quick side note. We went to a 3rd opinion cardiologist, who said he can't see the thin heartwall. He only did a 10-minute sonar, and our GP afterwards explained to me how the sonar have to take the still image of the beating heart at just the right moment. This is extremely tricky, and thus not an exact science. He said that he personally would go with the opinion of the doctor that has seen the child for 6 months, and done 4 sonars on, and who takes a bit longer to do the sonars and take the still images. He wasn't slamming either dr, just giving his opinion to a mom that was very conflicted about different medical opinions. So, we're treating Monkeyman as if he does have the thin heartwall, though always hoping that it will improve/dissapear one day, instead of turning into dilated cardiomyopathy.)
Anyway, so the cardiologist asked us to now try him on these mitochondrial medications, even though it's absolutely massive pills, and it's 4 pills 3x a day. She told us to give high dossages for one month, and then phone her. If it seems to have helped him, then it points to mitochondrial. With that information, she can then maybe start ordering some of the tests the mitochondrial specialist will need (kidney and liver tests, muscle biopsy, etc.) This will spare time. Though, to test mitochondrial disease, he will need to be off the meds for at least 2 months. So at the VERY least, we're looking at a 3+ months before we'll have any more information. Except if the meds does nothing for him. Then it means it could be something other than mitochondrial, and we need to widen our search. I'm not sure where we'll draw the line again though. But let's not worry about that yet.
So yes, this is where we stand. Three months of wait and see. Like always. Wait and see. At least, this time it feels to me like we have a plan of action. We're not just passively sitting and waiting to see a specialist that's so overbooked that not even a doctor can get us in to see her! We're trying something to see if it helps Monkeyman. I'm prepared to almost try anything at this point! To help my son. The week before we went to see the cardiologist, he had a huge crash again. It was a hard, hard week. Lots of crying (on his and my part!). Lots of sighing and lying down and moaning and groaning and just being miserable all around. I don't really know what brought it on. Maybe a virus. Because on the Friday before we saw the dr, he vomitted twice. During the night and early morning. No other symptoms, no fever. Just a long recovery again because of dehydration (also a very typical mitochondrial sign, apparently. The child struggles to get his energy back for longer than his peers after being dehydrated.) The difficult week went on for another, making it 2 in a row. On Saturday he was being particularly awful. I took him to a family restaurant with a friend who has a child of the same age. He was looking forward to it, but once there, everything was just too much for him. Urgh, such days are difficult!! He recovered by Sunday, and today he's MUCH better. Despite being in school this morning. Thank goodness!
Oh, and just quickly. I asked the dr about Monkeyman's toe- and fingernails. Fortunately, with the little nailbrush, I got it very clean. (I'll try to take some pics again at some point, but I don't want to put too much emphasys on this and make it a bigger deal to him than what it is.) Unfortunately, the dr admitted that she had absolutely no knowledge or experience on this. She has never seen anything like it and had no idea what it meant. She did say that no way could it be from the mumps, and besides, she noticed multiple lines as well, which negates it being from mumps (only). She also noticed that his pinky toenail is loose. I kinda ignored it, because I didn't want that to become the focal point of the visit, or the problem with his nails. She noticed it in any case, and found it remarkedly and interesting (probably because there's clearly no infection, fungus or other usual cause). But, apart from admitting that she didn't know why or what happened to his nails, and that she doesn't believe it to be from the mumps, she said nothing. So afterwards, I realised that I'm not sure if I should ask anyone else about this? I was concerned that it was his heart, and that's been ruled out. She also palpitated his liver and said to her it seems fine. So I'm happy that there's nothing too serious going on, causing the nails to look that way. I hate medical mysteries, and I'm going to think about this alot, but I don't believe it's necessary to take it futher?
Something else that I asked her about, again, because he complained alot from it on that day, that would also tie into this mitochondrial disease theory, is his legpains. Since he was a little boy of not even 2, he has been complaining about debilitating pain in his legs. Some days, it would be so bad for a few minutes, that he really couldn't walk without starting to cry. It usually passes relatively quickly, though a feeling of tiredness or pain always remains for hours afterwards. Some nights, it woke him up or kept him awake. But mostly, it happened during the day. Usually mornings and afternoons. He also complains about his legs being tired. Really tired. Not just that lazy tired of "aaawww Mom, do we really have to go to the shops"?? Not that tiredness. But something that makes him turn pale if I try to push him. And then all the typical tiredness signs will appear. The hooded eyes, the mouth pulled tightly, the pale skin, the shoulders hanging, the feet dragging. The sighing.
I complained about this leg pains to EVERY doctor we've ever seen. Whether it was for a cold, his heart or whatever. I mentioned it. Always. The drs would all seem mildly concerned, look at his legs, palpitate them, and then either stay quiet or mention "growing pains". Well, I'm at the point where I'm declaring loudly and with conviction. Bullsh*t. This IS NOT GROWING PAINS. I have 3 other children. And this is NOT growing pains. I'm relatively sure that our GP that said it's not leukemia, is right. Because like him, I believe that by this time, others signs would've shown up. In his bloodtests or whatever. He would've been dead by this time. Because it's been going on for at least 5-6 years. So if not growing pains, or leukemia, what is it?
I read that this is a VERY typical mitochondrial symptom. Muscle and leg pains. Some children's legs gets so painful, that they're unable to walk. Some just continue to always complain about legpains. Sounds familiar?
So yes, enough symptoms that I understand why he has now been put on the mitochondrial cocktail. Wish us luck? I have no idea what for, though. For improvement? No, my heart says no. Despite me wanting answers (and definitely improvements!!), I don't want that answer. So maybe, hold thumbs that unlike the vitathion (that we're also still continueing daily), this cocktail does NOT bring improvements. I'd rather start the search over!!
Subscribe to:
Posts (Atom)