At long last, an answer.... we think.

I haven't updated on here for so long. I actually wrote a few posts, but didn't post it, because I was going through an emotional low. And I do tend to withdraw myself when that happens. I don't think I should apologise. You definately wouldn't want to read anything I wrote while in that mindset. :-) 

It's not going so well. Not well at all. But before we get to the title of this post..... firstly, Mr N. He has epilepsy. We've accepted that, long ago. While he was in the 3-year remission, we breathed deeply again and enjoyed the respite. Both of us, his parents, knew it very, very likely that we'll have to face renewed seizures at some point. But still, when it started again.... when I witnessed that first seizure again. I can't tell you how much the heart aches. I immediately knew it was back. And with epilepsy you never know how bad it will get. What the future will hold. People die from epilepsy-related causes every single day. Will my child be ok? Will he be a statistic? Will he have a future? Will it be a good future?

People don't understand that "just giving the meds" isn't as easy as it sounds. It really does feel like being between a rock and a hard place. Not giving it, allows rampant seizures to destroy his braincells and costs him academically in school. Giving the meds, allows chemicals to affect his body. Yay. Awesome. Not.

My friend got epilepsy medication once for migraines. She stopped it after a few weeks, because the moodswings turned her into "a raging lunatic". My sister took epilepsy medication because of a bad fall in which she injured her head badly. The medication took a big chunk of her cognitive functioning away, until the medication was stopped. My husband took epilepsy medication years ago for 6 months for migraines. He slept every minute he wasn't at work. Literally, every minute. That's not a life. None of these 3 people wanted to live like that forever. 

But it's expected of my child. My 15 year old, innocent, life-loving child. How can that be fair?? And now we're realising he's getting breakthrough seizures. In class. He's old enough to realise something happened, and to understand it was an absent (petit mal) seizure. He notices it daily. That means, his medication isn't strong enough. We have to up the dossage. Do you have any idea how that makes me feel? To just throw more pills at him? I can just cry.

On to his brother Monkeyman. I don't even know where to start. We believe we may have found the cause for his tiredness. After living with it for 8 years. Complaining to doctors about it for 8 years. Actively looking for a cause for 3 years. It is his heart all along. As my gut instinct has been screaming for years. The reason why we went to THREE cardiologists. Get this, THREE cardiologists. At least 7 heart sonars. Seven visits. Seven or more EKG's. Did they ever pick it up? NO!!

The GE did. When we went back to her for his checkup after his gastroscopy, she asked me to listen to his heartbeat. The blood pressure monitor couldn't pick up all the heartbeats. It beeped regularly, then skipped a beep, then beeped again for a few times, then a pause, then beep.... Clearly not normal. She asked us to go for an EKG, a sonar and possibly a holter, which is a 24-hour continuous EKG. Haven't I asked for a holter 2 years ago already?? (*insert angry face in here*)

I asked the first cardiologist during our last visit with her, after she cured Monkeyman's pulmonary hypertension at age 5 by sending him for an adenoidectomy at the ENT: "So why is he still getting palpitions, and being so very tired physically?" She shrugged. She SHRUGGED!! As a cardiologist, shouldn't you do EVERY possible test if a child presents with unexplained palpitations and extreme fatigue? How could she not even consider or thought about a holter? How could she send a patient with unexplained heart palpitations away? A CHILD? And she's a pediatric cardiologist???

I asked the second cardiologist to please do a holter EKG, because I was just diagnosed at that point with SVT's and thought that maybe Monkeyman inherited it from me. And that it could cause the palpitations at least, even if not the fatigue. You know what she said? No, it's not necessary, it's too traumatic for kids!!!

Too traumatic. So let's leave a small 6-year old to suffer DAILY, but save him the "traumatic" event of carrying a holter EKG for 24 hours. Blimey.

I asked the third cardiologist during our one and only visit with him, so why is our son still so tired and going pale physically? He said he doesn't know, but it's not the heart, and we HAVE to keep on searching for an answer.

Oh, right. Ok.

Grrr.

And again, grrr. THREE BLOODY CARDIOLOGISTS. At least R15 000. Seven visits. Three years.

Grrr.

So, when the GE doctor told us in July we need an EKG or possibly a holter EKG, we went to our trusted GP that does EKG's on the side and is very heart-knowledgeable. He's the one that got me the holter and diagnosis in the end after 30 years of experiencing SVT's. He listened to Monkeyman's heart and said at that moment, his heartbeat was regular and beating normally, so an EKG wouldn't pick up anything. He did hear a slight murmur via the stethoscope. So he referred us to the cardiologist, for a sonar and a holter (24h-EKG). The night before the appointment, I asked my husband if we're wasting another R4000 (almost about $300) because it's not as if he hasn't had multiple sonars and (short) EKG's. Thank goodness we didn't cancel but went through with the appointment.

Because the Holter picked it up. His heartbeat goes way too fast and way too slow. Continuously, throughout the day. And when he exersized (she asked us to climb the 4 flights of stairs on our way for her to take the holter off) his heartbeat jumped to over 200 beats immediately. Way too fast for a little boy just climbing stairs. And too soon. Not towards the end, but the moment he started climbing. No wonder the poor kid was deathly pale, breathing hard and claiming "I'm never doing that again! It made me feel ill," when I reached him at the top (he and Boeboe climbed it faster than me - with my anaemia acting up seriously, I have severe exercise intolerance at the moment, I just pass out).

I also asked him earlier the day to ran around the little grass clearing here at school, and he did half of it and told me he "can't go on". I thought him being really silly and lazy, but he was indeed pale so I dropped it. Now, looking at the holter report, it corresponds to when his heart beat at around 216 bpm. Way, way too fast for his age. His heart should beat at around 80-100, and during exercise to about 70-80% of his maximum. The maximum rate for his age is about 160-180. So his heart shouldn't beat higher than around 150. His goes not just over 100% of his maximum, but even more than that. How scary!! No wonder the poor thing has stopped ALL sports after school, and can't even run around at breaktime with his friends. We used to wonder if we're doing the right thing, allowing him to stop sports. If we shouldn't encourage/force him to be more active. If that won't make him stronger. It's good to now have the answers to these questions.

The worst is actually not even the fast rate, but the slow rate. It goes all the way down to in the 40's. It shouldn't be less than 60, and definately not at his age. Below 45 is dangerous and counts as bradycardia. He had more than 200 episodes of bradycardia in 24 hrs. And every bradycardia is followed by some more tachycardia. Nice. Oh man, the poor kid. it must feel soooo awful.

The cardiologist said she can't give him medication, like beta-blockers. Because even though it will slow the fast heartbeats, it will also slow down the slower heartbeats. Which would be dangerous and make him feel even more sick. From experience I know. My beta-blocker slows my heartbeat, and sometimes it goes below 40 beats. And man, does that make you feel awful! I get all shaky, spaced-out and on the verge of passing out (I know when it happens, so I lie down on a flat surface, like the floor). It's impossible (for me), to function when my heart beats at less than 40. So I can just imagine that for Monkeyman, it must feel like that at around 50 already. I feel so guilty for how we tried to push him (to make him stronger) over the years.

Basically, there's nothing the dr can or will do at this stage. Just check him in another year's time, because the condition is usually progressive, meaning it will get worse with time. Hopefully slowly, though. She called it Sick Sinus Syndrome (SSS for short). The brady tachy type. Also called Brady Tachy Syndrome. She also said the murmur the dr heard, is most likely the returgitation that's still happening from the pulmonary hypertension. It's no big deal. And like always, she said the left heart wall is too thin.

A month ago, Monkeyman's teacher called me in. She said Monkeyman is exceptionally tired in her class, and can't keep up with the workload. He looks physically ill, pale, he lies on his arms every moment he gets, he can't keep his head up by himself without supporting it with his arm, his work is going downhill, he isn't doing as well as she knows he can, etc.

He has already stopped almost all his afterschool activities. He loved the choir, but the hour-long standing made him too tired. Like I mentioned, he doesn't participate in any of the school sports anymore, things he loved, like cricket, athletics, skululu, etc. Only tennis once a week, for an hour. The one thing he hangs onto. The one thing he loves the most. But even that I see, isn't going to last. He's complaining more and more of how tired he is after tennis. I can just cry. And scream. And cry again. How fair is this? He's just 8!!! How can it be ok for a young boy to need to stop all afterschool activities and still not be able to cope with little more than a 5-hour school day? There must be something they can do for him? I read that children with SSS is very good (better than adults) at pacing themselves, and only doing what they can cope with. And this is exactly describing Monkeyman. But it's sad, to see how he has to limit himself to cope. And he's old enough to understand now that it is costing him. The cost being socialisation, time with friends and siblings, time doing something you used to enjoy, etc.

He also can't play with the boys in his class anymore. They're too active for him. He says he can't keep up. So he has turned to the girls and now plays with them. When they allow it. They usually love him, but girls being girls, they do sometimes shun him and wants to play by themselves. It hurts. Seeing my boy sit alone at breaktime, because he can't run around for 15 minutes with the other boys in his class. It really, really hurts.

So he has stopped playtime excersize. He has stopped almost all after school activities. We have scaled down our weekends to the bare minimum. We're giving him vitathion daily and now also Q10. What else can we do to help him cope in class? There's nothing more really to scale down on! If he can't cope with the workload now, in grade 2, how will he cope in grade 4 when it exponentially increases? And grade 7, when even fit and healthy children crash and burn? And what about highschool? What about holding down a job one day?

So yay, we may have a diagnosis. But we can't do anything about it.

A few week's ago, we had the saddest conversation one day after school. It went as follows:

"Mommy, I know why I'm always so tired!" His face was full of mischief.

"Why, my boy?"
"Because I'm allergic to the work!". He laughed at his own joke. We haven't discussed his illness with him yet, at that point. So I decided it's maybe a good moment to do just that.

"No, Monkeyman, we actually found the real cause of your tiredness."

So I explained about SSS and what it does to his heart and why it makes him feel tired.

"So when will they do it?"
"What, Monkeyman?"

"Fix it?"

That broke my heart. He immediately assumed it was fixable. I told him sorry no, the doctors cannot fix it. They don't know how. He was sad. Very, very sad, and said that he always believed that one day, someone will find out what's wrong and fix it for him. For about a week after this conversation, he regularly referred back to this, how sad it makes him that no one can help him.

Og man, that was a very, very, very sad week in my life. I couldn't fix the one thing he wanted me to fix. He lives with what he has. And there's nothing, absolutely nothing, I can do to help him. So unlike with Boeboe. When we got her diagnoses, there was hope. She could have an operation. We had hope. With Monkeyman, we have nothing. Nothing to give him. No hope at all. We just took the hope he had, away from him. That's all we did.

We went to see our trusted GP (with his extensive knowledge on heart disease) with all our questions. He explained to us that this isn't nice. It's bad. It's sad. And it will be life changing. Stupid things like no caffeine, letting Monkeyman rest whenever he needs to, etc. He drew us some pictures to explain where it goes wrong in Monkeyman's heart, and why the only thing that might help, is a pacemaker. He also explained that it's not a cure, but will only help with the symptoms. He said it's a last resort, you don't go and operate on a child's heart until absolutely necessary. (Fixing the one problem, leads to other problems. In this case, pacemakes actually damages the heart after some years.) So only when Monkeyman really cannot cope with daily life anymore, or when it has progressed to the point where his life is in danger, we need to insert the pacemaker. Until then, we (and he) just cope best we can. In the meantime, we keep an eye on his heartbeat and if it doesn't worsen in the next year, we go for our next checkup then.

It's a bit scary, to keep an eye on his heartbeat. It really jumps quite alot. Much more than I realised (I used to blame the heartbeat monitor I have, but has since read about how extremely accurate it actually is). Last week, Monkeyman had a light cold. His heartbeat dipped into the 30's. And was MUCH more erratic. Many more times slow. Basically continuously below the 50's. It was scary. He was really tired, and so pale that his lips were impossible to distinguish from the rest of his skin. It had absolutely no colour in it. It was exactly like his illnesses always go. He turns very pale, lies on the couch 24/7 and then bounces back without getting too ill. Clearly, his heart just can't cope with even a light illness. But his immune system is strong enough to fight it off rather quickly (he was ill for about 4 days). Once he was better, you could see how his heartbeat goes up/back to "normal", just as his paleness faded. Like I always knew, the paleness and the tiredness is directly linked. And now I have a third way of checking the level of his tiredness. His heartbeat. Like the GP said, getting to know his heartbeat, is giving me pointers. It's worrying though, to see your child's heartbeat falls so low. Or feeling how it "jumps" and flutters in his chest. It's very, very scary. A few times, I had to bid him goodnight, after measuring his heartbeat at something like 38. Knowing that there's a loooong night ahead. You can't help but wondering.... are you doing the right thing? When is low too low? When does he need more supervision? When does he need medical attention??

I'm still busy researching. But from what I read on the internet, this is an "old man's disease". Young people don't get it. It's very, very rare to be congenital. Usually, it happens when the sinus node (the heart's pacemaker) falters because of old age and degeneration. It's an unstoppable process once it started. In children, it's also progressive, and some kids die from this. The info is scary out there, and like always, limitted because it's so rare. Of course. Have we ever had a disease that's not rare?? Oh yeah, I guess Mr N's epilepsy falls into that category.

Monkeyman has another problem, which I don't know if it's related or not. He suffers from insomnia. It happens more and more, which is concerning me. Because it obviously adds to his tiredness the next day. Last week, he also had a few very strange episodes. I believe his heartbeat fell (the once it measured in the 30's) and it made him confuse. He was pale, but able to walk and talk. But non-sensical speech. Words and sentences, but no context. It was very, very strange and happened twice.

So apart from dealing with my sons' medical problems, how are we doing? Well, Boeboe is doing wonderfully!!! Her psychiatrist has been so pleased with her improvements in control, maturity and academically, that she has halved the psychosis medication. Unfortunately, it didn't last long. The self-pity, anger, outburtsts and miscommunications were just too much. She kept on loosing control, resulting in our anger, which made her felt unloved and hated by us. Oh how sad. So I made the decision (with the psychiatrist's permission of course) to put her back on the full dose. It's been 5 days, but it's clearly better. So I think we have a golden dossage with her and needs to stay on it.

Academically, she's really doing superbly. She passed ALL her subjects comfortably. Nothing under 60%, and even up to 90% for a few!! Amazing. We're so proud of her dedication and determination. It's awesome to see. Whatever her circumstances, she has the power to rise above it. I envy her.

Physically, it's also going well. The bladder must definately have healed somewhat. So everything is "under control". Look, it's never gone. Never far from her mind. And sometimes she deals with what she has to deal with. No getting away from it. But still, comparing to where we were age 7 before her untethering, it still amazes me. The amount of function she has, is such an unexpected gift, and one I still don't take for granted even 5 years later.

Our little Peanut. She's the sweetest thing ever. Loving school, loving her family. That's what her whole world revolves around. Her siblings and her friends. Such a social little creature. We've had a few hickups regarding regression in pottytraining. I can't tell you how the hand of fear clutched around my heart each and every time. I simply can't go through any of that again. I can't. I have limits, and that's one I know is clearly written in the sand. I can't step over it. I lost it. Totally. Boeboe told me this past weekend that she had so much sympathy for me when that happened (a month or 2 ago). I felt so guilty and ashamed. She should've had sympathy with her babysister. But I was so totally thrown by it all, that her sympathy shifted to me. After what I put her through, she should've really not be so understanding. So maybe, just maybe, I can start forgiving myself. Since she clearly had, as the psychologist assured me already. I just never could believe it. Sometimes, our guilt worsens what we feel guilty about!

In any case, the problems seems to be constipated-related in Peanut, so I'm trying various things to sort this. It most likely is because of milk and sugar. I'm pretty sure she's intollerrant to both, and of course she loves both!

So that's it. Our long-overdue update.