O please!

That's how I imagine people's reaction to this. The whole pleeaasse drawn out and said in a drawl. LOL.

It's no laughing matter though. But really, I'm sure people will start to think I'm making things up. Or that I look for the next drama around every corner. Or that I'm a total hypocondriac. Or worse even, someone with munchausen. Or munchausen by proxy. I'm sure some will think I'm at least adding a little bit on here or there. Or exagerbating it to make it sound worse. I definitely am melodramatic. I doubt that you can be a writer, and especially a blogger, if you don't have a tendancy to the melodramatics. But I also assure you (for what it's worth), that I'm extremely honest. It's actually one of my less endearing qualities, because I'm a bit TOO honest at times. Telling people what I really think, disagreeing with their parenting styles because I for example don't like to lie to my children. Not even about veggies being hidden in the mince. :-) Hahaha.

So ya, I don't know who will believe this. But it turns out that I'm the one with heart disease/defect (not sure what it's called). I mean, really???

I have no idea how much I've mentioned over the years, about this. So it may all be news, or maybe not. It probably started around early childhood, but my first solid memory of it, that I'm 100% sure of, is when I was 12. I decided to participate in the cross-country, and had to train really hard for it. I started off with 1 km a day. But when I increased it to 2km's, I literally crashed onto my bed when I got home. I couldn't stand, my whole body was quivering, and I just knew if I didn't lie down, something's going to happen. At that stage, I didn't recognise impending fainting. I just knew I was dizzy and the world was spinning and I felt awful. Lying on my bed, it felt like my heart was pounding against my chestbone.

After resting for a while, I was mostly fine. Until I again ran 2km's the next day. And the next time. And the next. So I gave up on my cross country dreams. I believe I told my mom, but she wasn't a very paranoid or anxious mom, so except if we would really complain, she didn't hurry off to the drs much with us kids. I'm sure if I sat her down and told her I believe there's something wrong, she would've. But, being a child, I probably mentioned it in passing, as an explanation of why I stopped my training. I remember that at some point, I asked my friends if their hearts also made little jumps and would beat so hard it feels like it's going to jump out of your chest. They all replied yes, sure - awful, ain't it? I realise now that they probably experienced it when frightened or such, and never had it to the extend I did. So, I wrote it all off as "normal". Even though it probably happened at least once every few months at that stage. And when I trained too hard.

When I was 16, I fainted in class. It was highly embarressing. Dad took me to the dr, and he said low blood pressure! We all accepted that answer, and all dizzyness from then on were wrote off as low blood pressure.

After that first time, I fainted frequently. But at some point, I started to clearly recognise the signs, and knew that as long as I lie down, I can stay conscious. So after that, I rarely lost my consciousness. I still did, probably once a year or so, but I prevented fainting about once a week, by sitting down or lying down if that doesn't work. It became a way of life. My normal.

I tried a number of tips and pills and cures and old wive's tales. Everyone assured me "this will work!", or "that will definitely work!". And no, it didn't. No pills, no bovril in warm water or potato skins helped. Loads of salt did help slightly, I have to admit. Slightly. I always found it curious why effortil or akrinor, the blood pressure pills prescribed in my country in those days, didn't help me like it did other people with low blood pressure.

At some point I had a heart scan and stress EKG. It was normal, so heart was ruled out. We were back to the low blood pressure diagnosis. Throughout the years and numerous pregnancies, things got worse. I started getting mild chest pain and more discomfort. It felt like something's crushing my lungs, at times. That I couldn't breath. When I was pregnant with my 4th, it turned much worse. I fainted in the pharmacy one day. The clinic sister took my blood pressure within a few minutes, and it was normal! She urged me to call my gynae, for the safety of my baby. She wasn't happy with it being written off as low blood pressure.

The gynae sent me for an EKG. It was normal. Again. So we decided I just need to ride it out. After Peanut's birth, it didn't improve. :-( I sometimes felt extremely lethargic, tired, drained. I had to regularly sit down on the bottom shelve of a shop, to prevent fainting. My poor husband has been so kind and patient and understanding. I'm amazed that it didn't irritate the living daylights out of him. I couldn't keep up any more. I couldn't take a brisk walk. I couldn't play running games with my children outside anymore. I couldn't walk around in the mall for more than 30 min before needing to rest. I couldn't stand in queues, or at home, for longer than 5 minutes, or I'd feel faint. I couldn't climb more than 1 staircase without getting so breathless that I couldn't talk. I couldn't climb the 5 steps up my son's bed without having to catch my breath before reading to my son. Sometimes I feel so weak and faint, that instead of the usual 5min, I have to lie down for 30 minutes.

I realised it was all abnormal and couldn't really just be blamed on being unfit or low blood pressure anymore. But at first I was busy adjusting to a newborn baby, having 4 children and finding our new routine. In April last year I went to the dr, and he had no advice but thought low blood pressure. After some tests, I was supposed to go back to him, but the whole pulmonary hypertension thing happened with Monkeyman. So I pushed it to the backburner and concentrated on my son. Around November, I went back. Blood tests were normal. So again I left it. Beginning of February, I decided to tackle it again and went back to the dr. He took my sats and heartbeat, and was a bit surprised when it was high. Resting beat of 106. So he decided to send me for a holter (24hr) EKG.

I got the results yesterday. I have supraventricular tachycardia. I wasn't able to catch all the medical terms, but I think it's not the dangerous type. The dr said it would explain all my symptoms. Apparently, the EKG showed an elevated heartbeat that was abnormal, as well as my heart skipping beats. He prescribed medication that's breastfeeding safe (yay!) and that will help for all the symptoms, by lowering my heart rate.

As I understand it (from googling for a few minutes), my heart fires off confusing electrical pulses. For unknown reasons. It causes the heart to race, and that causes all the other symptoms. Breathlessness, dizzyness, chestpain, lungs feeling like it's being squeezed, etc. I'm so relieved to have a diagnosis, but even more so to have hope for feeling better!!! After suffering with the symptoms for decades. Unbelievable.

So ya, that's why I said you're probably thinking I'm lying about some of these things currently happening to our family. Why would we spend a year trying to heal my son and rule out his heart, and just as we're accepting that his heart is in fact fine, I come up with a heart disease of my own. :-( Honestly, I wouldn't blame you or anyone for doubting this. But, that's my life at the moment. Certainly extremely crazy. And I guess one of the reasons why I now get SVT's (that's what they call the abnormal electrical impulses) frequently every day. Not every couple of months or weekly anymore. Stress definitely worsens this condition, and I've had more than my share of stress the past year (or 3!). I'm just grateful it's nothing too serious. And I have to admit, I can't help but wonder if this could be Monkeyman's problem, afterall? His one cardiologist once muttered about wanting to send him for a holter EKG at some point due to his heart palpitations. When/if we go to the follow up appointment in a few weeks' time, I'm going to ask about this.

In the meantime, he's not doing well. :-( He complains about being really tired in the mornings, though once said it feels like the vitathion we started him on, is helping. I'm not so sure. Either it's helping which allows him to push himself, causing him to be even more tired than usual in the afternoons. Or, it's not helping and he's getting more and more tired as the term progress. End of the week is worse than beginning of the week. Which makes sense. It's just so darn difficult in the afternoons. :-( He cries for no reason, at the drop of a hat, when he's so tired. Today, he lied down on the floor for about 2 hours after school. He doesn't fall asleep, he just seems so drained, physically.

Boeboe and Mr N has started revision for their exam. Groan! Ai, I'm not ready yet. Already can't wait for the holidays!! I'm trying to remember that this isn't an important or big exam, and that I shouldn't drive them too hard in the beginning. I just wish I knew how much is necessary for Boeboe to pass. I don't even care if she passes by scraping through. I just don't want to push her so very, very hard if it's not necessary (yet). Life is already so hard for her. :-(

At least the medication seems to hold steady!! She's definitely calmer and more contend on it. But not that total different person than what she was in the beginning on the risperlet. The zoloft seems to have helped her calm down. She still gets angry, but not as much. She still screams, but not as much.

So that's our news for mid February. The boys had their birthdays last week. I'll post about that, and some photo's, in a day or two.

Plan of action, at long last

We're now at the point where we should've been when Monkeyman was 3. When he was 2.5, his first line of blood tests came back normal. I almost want to add, unfortunately. Because if his white blood count was low then, maybe the pead would've followed up. But, it wasn't, and he was declared healthy and fine. And we were send on our happy ways.

So now, 3 years later, we're back at the same pead, after complaining about Monkeyman's tiredness at every visit, for every child that needed to see her. Obviously, it must've stuck with her. Because yesterday we took Monkeyman to see her, and before I could even tell her why we were there, she said "about his tiredness?". That was a very good start.

She looked at all his bloodtests of the past year (I requested the receptionist to get a hold of it for us before the visit, which she thankfully was able to). And she also read the cardiologist's report. In her opinion, we shouldn't worry about the heart at all. She felt that it's been ruled out as a cause, and we can relax about it.

Just amazing, to think that 3 weeks ago, we believed our son is in heart failure. Only to now been told that he's just fine, nothing wrong, no heartfailure, no disease, no disfunction, no defect, no enlargement. Still just mind boggling. The mind shifts required of us is staggering.

Anyway, back at the pead visit. She had a good look at the 4 blood tests he had, in June, September, November and January. So it gives a real good picture of what's up. Which I believe we have the first cardiologist to thank for. Even if things went pearshaped with her recently, she did provide us with that. An excellent starting point.

Accordingly to the pead, his blood tests aren't as bad as we were led to believe. His neutrofils wasn't excessively low. And it wasn't consistently low. She also said there's no anaemia issues, and no clear picture of cancer. The transferrine is normal and it doesn't worry her at all that it was low the first 3 times. The only 2 things that worried her, was that his IgE was a tad low, and his lymphocytes were consistently low with every white blood count done.

The pead was uncertain how significant this could be, given his tiredness but lack of any other symptoms or regular infections. So she phoned a pathologist doctor and they decided on a plan of action together. Firstly, they're going to test his other immunity markers, IgA, IgG and IgM. As well as antibodies to some of his baby vaccines. They're also doing a CAST allergy test for food, inhalants, preservatives and colourants. Lastly, they're testing some autoimmune markers.

Once they've received all of these back, and of course depending if they find something or not, they'll do metabolic testing. This will happen over the next month(s), since some of the tests takes a while. And we haven't been able to take him yet, since for some reason, they don't do the CAST test on Fridays. So early Monday morning, before school, I'm taking him in. For his nth blood tests, poor thing. Thank goodness he is SO brave and tough about this.

I've started to research a little about consistently low lymphocytes, and what hit me right between the eyes, was that one of the causes as listed on numerous medical sites, could be DiGeorge anomaly. DiGeorge is the name given to Velo Cardio Facial Syndrome, or 22q11.2 deletion, when the child has low immunity function. Most syndromes/diseases/chromosomal abnormalities, have a list of features, that's split into major and minor. Usually, you have to have x number of major and x number of minor features, to be classified as having that syndrome/disease/etc. With 22q11.2 deletion, there's something like 189 features, with most of them listed as minor. There's only a few handfuls of major feautures. Like heart defects, cleft palate, psychiatric behavioural problems, learning disabilities, etc. Including in these, are also "Immune deficiency" listed. So it's one of the major features of the disease. If you have it, they call it the DiGeorge anomaly, on some sites.

The strange thing is that children with DiGeorge, are usually frequently ill with infections when they're little. Monkeyman isn't and hasn't been frequently ill. Quite the opposite. Like my other children, he's actually very healthy. Much healthier than the average kid. We would never have known about this low lymphocytes, if it wasn't for his persistant tiredness. So could it be that any of my other children might also have this? Is it something we need to consider and test for? I'm not sure. I think this is putting the cart in front of the horses. But, it has been interesting to read that some children with 22q11.2 syndrome, have consistently low lymphocytes. Just like Monkeyman. It definitely needs some more looking into. But for now, let's just see what his blood tests reveal.

Just ridiculous!

Mr N's been bitten by a spider. Can you believe this? It's been almost a year since Boeboe was bitten for the first time. This time, this dr are sure it's a yellow sac spider. And it looks remarkably similar to Boeboe's of last year, so that confirms my suspicions that it was a yellow sac that bit Boeboe. A mom's instinct, hey?! Shame, Mr N was bitten during the night. He said he woke up around 4am on Saturday morning, from a severe itch on his knee. He scratched it raw and fell asleep again. Then kinda forgot about it, I think. On Sunday evening, more than 36 hours later, he showed it to us (thank goodness) to ask what it was? It looked like a mosquito bite that was scratched raw. It looked very similar to another (real) mosquito bite about 2cm's from it. He's a bit allergic, so all of them gets swollen. Only thing that bothered me a bit, was that it looked more like a fluid-filled blister than a swollen bite. So I asked my husband (who wakes the kids up and take them to school while I sleep in with the baby) to wake me up if he feels the bite looks any worse the next morning before school. Thank goodness he did, because it definitely looked worse. The blister burst open during the night and was oozing. There was a red ring around it, and looked very, very similar to Boeboe's bite. Expect much smaller and less "angry-looking". And he had no pain from it, unlike she did.

Fortunately, I already had an appointment for myself at our very trusted GP, so I took him with me, prepared to exchange my appointment for him. But the GP was kind enough to see both of us. So Mr N is on a/b's. As far as I can remember, the last time he had a/b's, was when he had scarlet fever, age 10 or 11.

The bitemark isn't as spectacular as Boeboe's. Her bite though, was much larger by the time we took her to the dr. I believe it was 2-3 days after being bitten already. So the damage/infection was much bigger already. Also, I killed a big, fat, huge yellow sac spider a few days after she must've been bitten. In my bath. It was the biggest yellow sac I've seen. Yesterday, a day after Mr N was bitten (and earlier the day, before he showed us the bite), I stooped down to throw a table clothe back on the little tablestand that Peanut has pulled off and left on the floor. When I threw it over the table, I noticed a spider running. On instinct, I killed it. Peanut was standing a metre away from me. Once it was dead, I had a look at what it was, and it was clearly a sac spider, with the black jaws. (*shudder*) But, it was a small one. Very young, not sure if it was even fully grown yet. Anyway, if that's the one that bit Mr N, it makes sense that his mark ends up much less awful than Boeboe's. If a smaller spider has less poison than a huge one.

So here's a few pics I took.

Day 3, just before I took him to the dr.

Day 4, after one day of oral and topical antibiotics.

Day 5, third day of taking antibiotics.

Day 6, today, looks so much better. It's almost healed! Amazing, compared to how long Boeboe's took. So that's been the start to our week.

Boeboe has started with the full dose of medication early this week. I have this sliver of hope that there's IS improvement in her behaviour. I just haven't spent enough time watching her, evaluating her, making mental notes. My focus wasn't on her AT ALL. I feel awful to say this, because I know how important it is. I know. And still, I dropped the ball. I just couldn't cope with this past few weeks. So I'm back on the ball, and from tomorrow I will take more notice, again. Now that Monkeyman's tiredness is back to normal (nothing better), since we've stopped the beta blocker. She told me last night:

"Mommy, while I was doing homework today, there came such a peaceful feeling over me. I felt like I AM going to pass this year."

Wow. How amazing is that? So maybe the full dossage is doing it's work!! I asked her some questions, and it seems like she feels calmer and like how the meds are making her feel, and she feels like it's working. So let's hold thumbs!! It does sadden me a bit though, to realise that she's already anxious about passing this year or not. It's only just started!

I had another wow moment. I'm a Christian. I believe in the Power of God. I also believe in the kindness and love that God has for us. Quite a while ago, weeks or months, I can't remember, I had a moment where I panicked a bit. Boeboe asked me something about "the day she learns to drive". And for a moment, I suddenly wondered if she's ever going to be able to drive. Driving is such a complex, multi-tasking effort, that needs instinct, logic and forethought. Things she struggles with so much. It scared me. Both the fact that she might be in an accident one day, but also if she's going to be able to drive at all. In our country, having a license and owning a car is almost mandatory. Our public transport is unreliable, very unsafe and not available everywhere. It makes life immensely difficult for a person who can't drive. After stressing about this for a while, I pushed it to the side and forgot about it. I never spoke to my friend about it.

A few days ago, I had lunch with her, and she told me that she had a dream the previous night about Boeboe. And she has no idea why, but what she took away from the dream, was that she needed to tell me "Boeboe will drive one day". She doesn't know why she had to tell me this, and it made no sense to her. She just felt the need.

Wow.

I thought that really amazing. Goosebumps amazing. And it comforted me! It's a relief, to believe that Boeboe will drive one day.

I'm currently connected to a holter EKG. The dr believes that I have arrhythmia (spelling??). Not sure from what. But hopefully the EKG will catch any episodes if I indeed does have it. I'll probably only get the results next week. I'm not too worried about it. Though, when I heard I need to do the 24hr EKG, I did panick for a moment. My mind jumped to worse case scenarios. What if I have a heart problem? What if they put me on heart medication and I can't stand the side effects like Monkeyman? What if I have to stop breastfeeding Peanut? What if I'm resistant to all meds like my mom was? What if I die like my mom? What happens to my 4 beautiful, dependant children?? Eish, nothing like a mini-panick attack to think the absolute worse, hey?! I calmed down after a day or so, and realise that whatever I have, I've had it for eons. Well, a looooong time. Some of the symptoms definitely comes from my childhood already. So it's not like I'm just going to peg over and die anytime soon, even if it might be my heart causing it. I think I've just had too many things happening recently. I can't keep a normal, balanced outlook currently. My timing to organise this, really sucks. But I got so out of breath from really minimal (and I do mean MINIMAL) effort like climbing a handful of steps, that I decided I need to get this sorted before it gets even worse. Even though it feels awfully wrong to put my son through multiple heartsonars and EKG's and hear medication and worry so much about him having heart issues, and just as things starts to look up with his heart, I go and complain about mine. And goes for tests and things. :-( Almost as if I'm looking for something to be wrong with someone's heart in my family. Just doesn't feel right. Sigh.