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.

Gastroscopy, biopsies and ph impedement

It's done. Thank goodness.

So Monkeyman went in on Thursday early morning, without complaint because he couldn't eat or drink or had to wake up early just to go and sit and wait and wait and wait at hospital. He is such a sweet, sweet boy. Having an aspergers child in the house, I can't help but appreciate his cooperation and non-defiant behaviour so very, very much. It makes his and our life soooo easy. I know, it's unfair that I compare him and his sister, but hey, they're siblings. It's impossible NOT to notice when one child screams her head off about everything, and another says "yes mom, of course mom" to every thing you demand of him. :-)

So Monkeyman got to the hospital and entertained himself on his tablet for hours and hours. And watched a bit of tv. We got to talk to all three the doctors before the op. The pediatric gastro-enterologist (GE) answered some of our questions, and really calmed my nerves. The ph-doctor came to discuss the procedure and what GERD is, etc. And was really surprised when she realised not only do we exactly know, and that our whole family has it, but that SHE was the one that did my, my eldest daughter and eldest son's ph-studies 10 years ago as well. :-)

Then came this really, really young looking anaesthesiologist. It scared my husband a bit, to trust our son who has had anaesthesia problems into the hands of someone looking like he hasn't even finished medical school, let alone specialised already! But somehow, I was ok with it. Thinking that maybe as a young dr, he would be up to date on all the newest things. And it turned out to be true!!

Before the operation, my husband went to a lot of trouble to contact the previous 3 anaesthesiologist that took care of Monkeyman (the GE doctor asked him to). My husband requested a list of all the medications they used, and we put all of it together on one page, which we presented this newest anaestheologist with. He listened carefully to the symptoms and progression that Monkeyman experienced every time he received anaesthesia. It was always the same. He would wake up confused (like any normal child), screaming, fighting, crying. Then, in time, he calmed down and sometimes would fall asleep. When he had the pulmonary hypertension, he slept for 3 hours after the anaesthesia!! Still, this is all normal.

Then, about 3-4 hours after the anaesthesia, everytime, the vomitting starts. Doesn't matter how strong the anti-nausea meds they give him during the anaesthesia. This continues for the rest of the day. Gagging and vomitting. Inbetween nausea. Then the physical tiredness. He can barely lift his head. Walking to the bathroom is too much to bear. He just lies down on the couch and doesn't move for hours and hours. About 6 hours after anaesthesia, the fevers starts. This continues for about 24 hours. Around this time, or a bit earlier, his nose starts to run, and it clogs up, with his eye(s) tearing. Exactly like a cold.

The worst isn't the symptoms, but the fact that you can SEE this is an ILL child. That something really is wrong. But when you try to tell someone, they all say "oh, but it's normal to not feel well after anaesthesia". Yeah. I know. But this was different. The first time, he was a small child of 2-3 years old, and we thought that he must've come down with a bug unrelated to the fact that he had anaesthesia. Just by chance having it at the same time as he wokes up from anaesthesia. The second time it was very fishy to see the exact same progression of symptoms. But again, I thought he must've came down with a bug at the same time as the procedure, or that maybe the pipe down his throat was to blame. He was 4. Then, age 6, he was really, really ill. We wrote it partly off due to the fact that he had pulmonary hypertension and an enlarged heart. But still, it really bothered us seeing him so very, very ill. So whenever someone just mentions a possible gastroscopy, we back-pedalled. We just didn't want to face the anaesthesia again. Our instinct was to protect our child, and putting him through anaesthesia went through everything we knew was good for him. Our instincts screamed.

But we knew at some stage it just simply HAD to be done, so when this dr said it's needed, we told her about our fears and experiences. So she asked us to get a list of all the medications used in his previous anaesthesia. I didn't even think it possible, but all 3 doctors came through for us. And when we presented the newest anaesthesiologist with the list, he said he believe that it's the gas that makes Monkeyman so ill. After the gastroscopy, the gastro-enterologist came to talk to us for quite a while. She's such a sweet, caring doctor. Anyway, she said that the anaesthesiologist believes that Monkeyman may have Malignant Hyperthermia. She said it 3 times! Accentuating it. Sounds like the anaestheliologist really wanted us to know that he thinks that's what it is.

Which makes sense to me, when I googled it. Malignant really does mean Malignant! It scares me big time, but at the same time I have this huge relief in me! One less puzzle to try and figure out!! A possible diagnoses. Basically, it means that a gene on one chromosome mutated, and makes the body unable to handle gas (inhalant) anaesthesia. The body basically kills itself within hours. Fortunately, Monkeyman haven't had a bad case of it (yet). Just the start of the symptoms, like the fever and exhaustion and nausea. He must just never, ever get gas again, then he'll be fine. Also, no cocaine, ecstasy or such. Which I don't really see as a concern at this point. ;-)

I know it'll be strange for people to understand the relief of knowing my child probably has malignant hyperthermia. But we had this sword hanging over our heads, fearing Monkeyman's next anaesthesia. It feels like we have removed that sword now. It's an enemy we could deal with, and we dealt with it. It makes me happy and relieved and grateful. Makes sense?

So, how was Monkeyman after the gastroscopy? Well, he was confused for about 30 minutes directly after the operation. He fought and tangled all the wires something terrible. Then he woke up properly, watched tv for an hour, ate, stood up and walked out of the hospital. :-) Such a trooper!!! No nausea until late the night. No vomitting. No fever. Unfortunately, still the runny nose, clogged sinusses and red and teary eye. So, so much better, but not all symptoms gone. No lying down all day, no abnormal tiredness, nothing. He ate and drank normally, unlike the previous times. Just a normally tired little boy who had 30 minutes of anaesthesia. Really just NORMAL. Of course, he only got IV anaesthesia, not gas. But he barely flinched when they put the IV in, so all-in-all, such an easy child. He asked for daddy to go in with him!!! I was really so happy about that. It's wonderful to see their bond. And I had more than my share of seeing my babies made to sleep. The only thing is now just this runny nose and teary eye and clogged sinusses. Why would anaesthesia do that to him? Is it still an allergy? Is it a reaction similar to the malignent hyperthermia? Is it because his immune system is lower than the average child?

The gastro-enterologist was very happy with everything during the operation. She found no structural abnormalities like constriction or growths or such. No clear signs of issues, except that the stomach was quite red. Abnormally, but non-specific red. She took biopsies of the throat, tummy and intestine. She also took a lot of bloods. She's gonna get a new baseline for him, since the last ones was over a year ago. And then when she was done, the ph doctor inserted the ph study while he was still under, so that he was saved that trauma at least (thank goodness for caring doctors).

He didn't like the little pipe at all. It bothered him quite a bit. As much as it did me. Shame man. But again, he was a trooper. I kept him at home, and after 24 hours we went to the ph doctor to take it out. She only gave us some prelimenary results, she'll send the full report to the GE dr.

The news wasn't good. :-(  Even despite being on high doses of meds 2x a day already, he STILL had a positive GERD test. He refluxed 40x during the day and 20x during the night. 7 of those events didn't just rise up into the throat, but the contends of the stomach (very little acid due to the medication) moved right into his mouth. Poor little boy. No wonder he complains about nausea, and aspirated his stomach contends when he was on less medication.

So ya, our hopes of lowering his medication dossage was dashed. She said we simply cannot do that to him. It will damage his lungs to the point where it can kill him. :-( She said after 10-20 years of aspiration, it looks like smokers lungs.

Now we wait for the GE's call next week, to tell us what the biopsies and bloods shows, and her opinion on the reflux report. Ah well. I'm so good with waiting these days. ;-) Boeboe's long road has taught me at least that, hahaha. No really, I'm ok with the waiting. I remember how I used to complain on this blog about the waiting. But I've come a long, long way. I have learned patience and perserverance. And I know nothing ever gets to the point of being "fixed". So no point in being impatient. It's not a destination, it's a road with rest-stops along the way. Maybe, come to think about it, that was the lesson I needed to learn? Maybe that answers the why? So many people have asked or mentioned this past few years how come one family could have so many little rare issues they deal with? Well, maybe that was so that I could reach this point of acceptance, and just founding the joy in the here and now. Enjoying every day we as a family have together.

It's back.

The epilepsy, that is. I suspected it, of course, which is why I stressed so much about the appointment. We always knew that it would probably return. That's the nature of the type of epilepsy Mr N has been diagnosed with. It has a very specific pattern to it. And hormones usually either triggers it or worsens it.

His EEG was clear though. Interesting. Not many doctors would want to medicate a child who has a clean EEG. And this doctor isn't one to see seizures where there is none (first-hand experience of friends of ours). So when he told us that he strongly urged us to medicate Mr N, we listened. He explained why. Bottomline is that he believes the EEG just missed any seizure activity during the 30 minutes snapshot that was taken, and that Mr N is indeed having at least absent seizures. Add to that the fact that he of course has a history of seizures and has been diagnosed with epilepsy and treated for it for many years until fairly recently, and the type of epilepsy he has been diagnosed with which is infamous for creating havoc during teenage years.

I also witnessed an absent seizure. A few months ago. It was in the car. Mr N was busy talking to me when he cut off mid-sentence. I were in standstill traffic, so I immediately glanced at him. He had a weird look on his face. Like he really was caught mid-sentence. His mouth still lifted as if he was forming a word. And he was staring straight ahead through the front windscreen, without blinking. I couldn't see his eyes, so I couldn't see if there was a tell-tale roll like he used to have when he was little. But I was pretty convinced it was a seizure. When he got out of it (a few seconds later), he seemed a bit confused, and as if he couldn't remember what he was saying or why he wanted to say it.

His one teacher also noticed what she thought must've been an absent seizure. He seemed confused and "out of it" to her. She was sure that "something" happened, and that that something was weird or abnormal. It was when she told me this (a few weeks after I witnessed the one seizure in the car) that I realised we'll need to make an appointment with a neurologist again.

But what sealed the deal for me to allow medication even with no seizure activity on the EEG, was when he asked the technician doing the EEG about what absent seizures was. And then admitted that he regularly has episodes where he suddenly wakes up from daydreaming and realises he can't remember what he was thinking about just 1 second ago. It's a blank. He thought it normal, though it has been bothering him. He said he tried to not daydream like that, but it didn't help. It only got worse with time.

Sounds convincing enough for me not to want to take chances with. Seizures can damage the brain. That's fact. I'm not playing with his brain like that. I'm a scientist. I believe in the good of medication, when given at the right time for the right reasons for the condition it is supposed to treat. It doesn't make it easy though. To come to grips with it all.

I described it to someone that it was like having this sword hanging over us for years, and now it has dropped. The shock and pain is hard to deal with. Not as hard like when he was diagnosed first at age 5. Or like when we had to wait for the brain scan to see if it was brain cancer. Still, it's hard. Very hard. He's our baby, even when he's already 15. The fear can be overwhelming. Will the meds control the seizures? Will the seizures worsen? Will he get hurt during a seizure? Will he be a victim of status or SUDEP? Will he go into true remission one day? Will he always have seizures? Will he be able to get a license and drive? Will he be ok if he lives alone one day? Will he be ok being an epileptic, now that he's a teenager and rebellious?

There's even short term worries. For example. I usually wake him up in the mornings, then leave him alone to get up and get dressed. His room is at the far side of the house. Most people with his type of epilepsy, gets the worst of their seizures when they wake up in the mornings. Would I hear him if that happens? Will he be ok? What if he gets one in the night? I won't know! Our room is too far from his. What if he gets one when he's not at home? What if he gets that first tonic-clonic? What if he gets that first one and I'm not there? What if he gets a seizure at school and the other kids notices? Not the absence ones. They're fine. Most kids won't even realize something happened. But what if he has an atonic seizure, like the ones he used to have age 5? Those would be so embarrassing!! What if his fall at school a few weeks ago wasn't "just a fall", but an atonic seizure????

Questions like those can drive a parent mad. :-(  However easy it sounds for other people.... Boy has seizures, boy takes meds, boy is fine.... it is NOT easy. Not at all. The pain, the fear, the worry, the meds. It's not easy agreeing to these kinds of meds. The first time was a very, very difficult time in our life. My little boy.... he changed. He changed so much. His behaviour changed. His moods. Parts of his personality. It wasn't easy AT ALL doing that to your child. And now, agreeing to take that risk again. The side effects could be lethal. He got a rash last time, which in some people could turn deadly. So yeah. It's not easy.

But seizures damages the brain.

How do you get away from that? Not even thinking about what could happen if he has a seizure when he isn't in a safe environment. Like in a swimmingpool. Or next to stairs. Or on a balcony. Or next to a road. So many dangerous possibilities. I just can't take that risk. Rather risking the meds again. It turned out well in the end, the first time. There's hope for a good turnout this time as well.

Monday is Monkeyman's visit. My stomach clenches in a huge tight knot every time I think about it, hoping for a better outcome for our youngest little boy. Better than how his older brother's appointment went. :-(  At least his weight seems to not only go down, but up and down. He still weighs less than what he did 2 months ago, and less than what he weighed a week ago. But more than what he weighed 2 weeks ago. So he picks up some weeks, other times he looses weight. It seems to me that those weeks I made more fatty foods, and also encouraged him to eat and eat and eat, he picked up. When I leave him be, let him eat until he is full, or don't if he isn't hungry, then he looses weight. :-(

Picture overload

As promised, here's some pics of our December holiday at the sea, and one or 2 of our holiday over Easter at the river where we camped. We drove down to the coast December and spent a whole month on Waenhuiskrans. It was one of the best holidays ever.

Boeboe and her little sister. Their bond is absolutely amazing to watch. Peanut looks at her as a second mother. Boeboe does everything she can for Peanut. From playing with her to teaching her life skills. Having Peanut really was, as the psychologist also pointed out, the best thing we ever did for Boeboe. 

Mr N absolutely adores to boogie. He spent hours in the water on his board.

Playing with a ball on the beach.

My 4 little fishermen. Isn't Waenhuiskrans the most beautiful place anywhere in the whole world?

Like her brother, she loves to boogie.

Loving the sand and building sandcastles.

Adoring the water.

The prettiest little sand nymph.

Such a happy child.

Playing with her daddy in the water.

Boeboe. A little mini-me with her dark hair and eyes.

My happy little boy. He absolutely loves the sea. 

Here you can see why we need to go see the dentist. I've been procrastinating. She asked us to come back in 6 months if that bottom baby tooth does not fall out (she had to pull the upper ones). It's been more than a year already. I feel bad for not going, but argh man, I'm sooooo tired and wasn't in the mood to see any specialists and hear how Monkeyman needs to have braces and see him in pain when they pull that little tooth. :-( 

A little devil smile from drinking red cooldrink, lol. Look at how healthy 

he looks here. Good skin colour, almost no circles under the eyes,

the little tell-tale blue vein in the corner of his mouth almost 

invisible, a shine to his eye. This is what resting does to him.

Playing nicely together in the sand.

She was scared of the water in the beginning, but soon
realised it's so much fun!

Running around.

Our beautiful Peanut.

Look at her curls! By this age, Boeboe has lost hers.

She's a very relaxed, easy-going, happy child.

Four monkeys on a wall. It reminds me so much of the pictures
my mom took of me and my 3 siblings on this wall when
we were kids. It makes me so sad, for times gone by.
And so happy for being able to have these four
special children.

Our tradition. The whole family's footprints in the sea sand.
It's amazing to see how over the years it grew from just me,
my husband and our first baby, to all of these.

Throwing pebbles into the sea at Pebble beach.

Look at those locks of hair! Gorgeous.

At the river where we camped during the March holidays.

First term done

It went well. The first term. For everyone. Like I said in the previous post. It's really going well with us. Everyone's healthy, Peanut didn't even need to stay at home once due to illness so far this year. It really helps so much to have such healthy children. It puzzles me though, how someone with compromised immunity like Monkeyman can be so healthy. His bloodtests shows that 2 types of his whitebloodcells are always low in count, and that it falls lower as time passes. Both his neutrophils and his lymphocytes. The one dr speculated that his own body is destroying his neutrophils. In any case, somehow the rest of his immune system is coping with the extra workload just fine, so far Thank goodness. Unfortunately, she thinks this will change when he enters his teenage years. We'll cross that bridge when we get to it.

So let's see. We'll start with Mr N. He is fine. Didn't do too well in some subjects last term, and will have to really put shoulder to the wheel this second term. I will help him, hopefully if I spend one term working WITH him, I can teach him how to tackle and execute it himself. He does fine in tests, it's his homework that's lacking. He still got mostly A's, so nothing too serious that worries me. Next week is his EEG and neurologist visit. To say I'm nervous is an understatement. I'm sure he's fine though. I think. I hope.

Boeboe is doing so well, that her psychiatrist said we can go 4 months now without visiting her! When it goes well, it's 3 months. When there's something happening, it's 2 months. So being given a "4-month pass" is soooooo nice, I can't tell you! Not just the whole skipping of the physichal visit, but the comfort of knowing that it's going so well with my daughter. Both her psychologist and psychiatrist declared her doing well. And I see it too! Oh, it's never smooth-sailing. We still deal with daily tantrums, aggressive outbursts, defiance, self-pity, etc. Its just that for Boeboe, everything is normal, and what we deal with now is less than 6 months ago, kwim?

Monkeyman. The only one it never goes as well with. So we took him to our trusted GP a few weeks back. He said that for the reflux, it's time to go to a pediatric gastro-enterologist. About the tiredness, he said (after asking a lot of questions), that he believes it's probably a metabolic disorder, and that it may be that his body fails to successfully convert carbohydrates into glycogen (energy). So he literally runs out of energy. He described how that would make a child feel and acts, and it was spot on with how Monkeyman acts and complains about. So maybe, who knows? We're thus trying to slowly replace a part of Monkeyman's carbohydrate intake with more protein and a little bit more fat. Hopefully, in theory, if the body gets more protein it will have more energy. If the body can still convert protein and fat into glycogen. The thing is, what I learned from research so far, is that almost 100% of the carbohydrates you eat, is converted into energy. Almost 50% of protein is converted to energy. And only 10% of fat. So if most of the diet consist out of carbohydrates, a normal body has more than enough energy. But if the body for some reason can't convert this into energy, it will only have the energy it was able to convert from protein and fat, which isn't alot if you don't eat a lot of it, since only half could be converted in any case. So hopefully if we provide it with less carbs and more protein, there will be more protein available to convert, and thus he'll have more energy.

So far, it's very difficult to tell. We have only started with this 2 weeks ago. And he's been.... difficult. It's not that he's defiant. Far from it! He's too rule-abiding to ever go against what his parents and a dr tells him. No. The problem is that he doesn't have an appetite. :-( Still not. It started about 2 months ago, long before we started the diet. And one of the reasons we went to see the dr. So far, he has lost more than a kilo and keeps on loosing. Very slowly. About 100-200g a week. Which isn't enough to make the GP worried yet, but it's driving me crazy!! Why would a child suddenly stop eating like he always has, and thus start to loose weight? What changed? And why? And it's not like he has a lot to loose! He weighed 18kg when he was almost 6. By age 7 he weighed 20kg. By age 8, he was 22.5kg. And that's when he started to loose. Shortly after he turned 8. He's now down to 21.4kg. I'll keep on checking it. In the meantime, we have made the appointment with the pediatric gastro-enterologist, and will see her later in April.

So yay, 2 specialist appointments in less than a week again for us this month. Whoopee. :-( Sorry, I can't muster the energy to try and look at this with a positive attitude anymore. I'm just so tired of doctors and worrying about one of the children. It was nice to have had little of it (apart from the psychiatrist and psychologist) for almost a year. Blegh. Anyway. Deep breath. It's necessary, both upcoming appointments.

So tomorrow the new term starts. I'm looking forward to going back to work! It's gonna be a busy one. The kids are all also looking forward to school. Of course not the work, but seeing their friends, teachers, etc. again.

Going very well

Nothing much to say, so I've been a bit quiet again. Boeboe is done with exams, and with extremely hard work and dedication she seems to be passing. So that's all good. The fact that it went with many a screaming session, we'll just forget. Like always. :-D

I'm not sure what I've reported on and what not, so I apologise if some things are repeated.

We've spoken to Boeboe at long last. I decided to put a positive spin on the way we told her about having autism. It may have worked too well, because what she took out of it, was that her brain was very special and unique and clever. :D  They psychologist had a few sessions directly after with her, and said it was the perfect way for Boeboe, and we should leave her with the impression SHE wanted to take out of it. So all was fine in the end. She wanted to tell her brothers, which we then did as well. Monkeyman wasn't bothered by the "big reveal" much. Mr N on the other hand, immediately understood some of the more serious implications, and I actually noticed tears in his eyes. I've since quietly pointed signs out to him, when she acted out an autistic trait like taking things too literal or struggling to comprehend something. And it has definately made him act more sympathetically towards her overall. Which is exactly what we hoped to achieve by telling the boys. So again, all's good.

I've also had a meeting with the teachers, and even asked some of her future highschool teachers (my collegues) to sit in, so that they can know what they deal with from the start of next year. The meeting went very, very well, was very positive, very well received, and has immediately lead to most teachers treating her with more sympathy, understanding and support. Again, exactly what we wanted and hoped for! Another reason for it to be going so well. :-)

Boeboe is finished for now at her psychologist. We've had a parent feedback session, and it was very helpful. She again went through all the criteria to be diagnosed with ASD and explained to us why Boeboe fits the criteria. She's certain that the psychiatrist's diagnosis is correct, and thrilled at Boeboe's progress throughout the years. She said it's astonishing when she looks at her notes from when Boeboe was 6, to what she has achieved now at age 12. She said that we've done very well with Boeboe, especially in the way we looked for help when and where it was needed. And that we've done more for Boeboe than what most parents do for their kids. That surprised me, and of course touched me. It made me happy with the decisions we've made, but also made me sad if that's not the care that most other kids get. :-( It should be a child's right, not true? In any case, I'm glad that Boeboe was doing so well, accordingly to the psychologist. She was stable on her meds, she wasn't depressed any more, she was happy, very well adapted in her (new) school, and was progressing in all areas. Still years behind her peers, but as long as she kept on improving at her own pace, we've accepted it. The psychologist said two things that stood out for her. One was, given what she started working with at age 6, she felt that it's amazing that Boeboe hasn't failed at least one year so far at school. She said given everything, Boeboe should've failed. So for us to have pulled her through, shows our dedication and that we took the right approaches when necessary. The second thing was that the move to the new school a year ago, was absolutely the right (and best) decision, again at the right time. I could've just cried when she said that. It is so very, very difficult to know if you've done right by your child. For someone to give you that confirmation from a professional point of view, was amazing to hear. So again, all is well!

It's going really well with me as well. I'm so very, very happy in my job. Still. I still love every moment of it. I'm still so grateful for this opportunity to have come along. This year, I'm only teaching high school classes. One maths and 2 computer science. It keeps me busy until around 12pm every day. Afternoons is mine to take care of the kids, drive them around, help them with studying, etc. And I don't nearly work as hard at night as I did last year. Now that I have most things set in place already. I even take most weekends "off", unlike last year. I truly feel like I've been working half days now. And Peanut is adoring school and her friends and teacher, which makes me of course really happy to go to work. It's awesome to only be about 10m's away from her though. She's still my baby. :-)

It's also going "ok" with Monkeyman. He's still awfully tired. And concerning to me, very pale. Even more than usual. A few days ago I also realised that he's getting a "gaunt" look to his body and the angles in his face. It's really worrying me. Thank goodness my friend gave me an electronic scale recently, so I'm going to keep a close eye on his weight for a while and see what's up. So far it looks like he is loosing weight. His apetite is really bad. Which, for him, is strange. I'm used to it for my eldest 2, but not him. He always ate well, since he was a tiny baby. But the past 3 months he has declined at least one meal a day. :-(

We did the enzyme bloodtest the one doctor still wanted us to do, and then put him back on the vitathion. Again, like always, I could notice a definite difference overall in his behaviour after being back on it for about 3 weeks. Wish a doctor could tell me WHY that is. Oh, the enzyme test was, as expected, negative. So it's not a hidden musculur dystrophy or such, thank goodness. We need to take him to a GP soon, because of his reflux. He's on extremely high doses, so high that the medical aid has to be phoned every month to explain why before they pay. Still, he gets break-through nausea spells. I'm guessing he'll need a gastroscopy soon. :-( The thought of putting him (and his struggling heart) through anaesthesia again is making ME nauseous! Last time, it took him exactly 4 weeks to recover from 30 minutes of anaesthesia.

Mr N is doing "ok" as well. Very happy at school, working hard like he should in high school, but also playing hard. He loves life at the moment, I can see that. My boy is happy. :-) The only worry with him is that his one teacher and I both noticed something once (and not again), that made us think it could've been an absence seizure. I'm pretty sure, because it looked EXACTLY like it used to, when he was diagnosed at age 5. So he's seeing a neurologist in April and they'll do an EEG.

The boys both had their birthdays! Monkeyman turned 8, and Mr N 15. Both had small parties at school, and their grandparents came to visit them. Mr N then had to leave on a school camp on his birthday, which turned out to be loads of fun and he had a great time. Even though he actually didn't want to go (it was mandatory for all kids).

So that's the news for February. Nothing much exciting happening, thank goodness. Same old same old. Hoping the rest of March would be the same! We're going camping during the upcoming school holidays. I'm really looking forward to just spending time with the kids playing board games all day, taking them swimming, reading, watching them try to catch fish, etc.

Signs and symptoms of her Aspergers

First, let me add a disclaimer. I know Asperger's has been dropped from the DSM, and that my daughter's diagnoses is in fact, ASD (autism spectrum disorder). I'm of the mindset that it should've stayed a separate diagnosis. To me, it feels like grouping my daughter with all other autistic kids, minimizes the suffering and pain and heartache of those that's lower down on the spectrum. You just simply can't compare a child still functioning in a mainstream school with one that's totally unable to function in any school setting. How fair is it to that child and parent? Won't this make people with no autism experience believe all kids are like asperger kids, because there's so much more of them than those lower on the spectrum? That wouldn't be fair! Anyway, I'm going off on a tangent. So my daughter has ASD, I get that. But for the time being, excuse me when I say she has Aspergers. It's just easier, iykwim?

We went to the psychologist last week, and she completely agrees and supports the diagnosis of the psychiatrist. She went through the diagnostic criteria with me, and explained in detail why my daughter specifically fits the bill. She didn't even just have the minimal 2 or more requirements for some areas, but ticked most of the boxes. So there's no doubt that she fits the criteria. I didn't find it shocking. Maybe a little sad, but it was a relief to have confirmation and more support. This therapyst has known my daughter for 6 years and saw her many, many sessions in those years. I trust her.

She told me that we definately need to tell Boeboe. Take our time, but tell her eventually. We haven't, yet. I don't know how!!! I honestly am at a loss for words when I look at Boeboe. How do I explain it in such a way, that she can take the good from it? And not feel like "see, I KNEW there was something wrong with me!!!". The psychologist says that at the moment, she feels like she's stupid or ignorant (or such), and that's why she sometimes makes the social mistakes that she does. If I tell her she has aspergers and explains it, it gives her another option to those she has. It's not because she's stupid, but because of the aspergers. It takes the guilt away. Explained like that, it makes sense to me. So I agree, I need to tell her. Still, I don't know how....

Secondly, we need to tell her brothers (after she was told). So that they can let up on their relentless anger and frustration due to her behaviour and the way she acts and talks. Thirdly, we need to tell her teachers, so that they can help and support her during class. Lastly, we should NOT tell classmates or their parents, because they WILL use this information to their own advantage and ostracize her even more.

How sad is that? But I guess true. Boeboe is already being bullied. By girls you would NEVER have thought would bully another child. Their parents will be horrified to learn the way their kids have been acting. So far, the school has dealt with it, so all that the parents know is that the girls has been fighting and every child has told their own version to their parents. It hasn't gone far enough for me to have them call in specific kids, but believe me, the principle has been furious with some of them. Which was enough, so far, to stop the behaviour every time. I'm pretty sure none of those kids will tell the full truth to their parents! For example, none would say: "Oh by the way, when Boeboe frustrated me by talking nonsense like she sometimes does, I told her to go away. And every time she tried to play with us during break time, I screamed at her to leave us alone! And then we ran away from her, hiding, and whenever she came near us, we would walk away from her, laughing."

I'm sure the parents would be horrified to learn that their little angels have behaved that way (not just based on my daughter's word. It was seen by other teachers, and admitted by some of the kids.). I do think the kids are basically good kids (which is why we never pushed for the school to take it futher), that are just confronted by a person they don't understand, and don't know to handle. I would've loved being the one to teach them. But it's not my place. And I need to protect my daughter. If the psychologist think they would use this knowledge to hurt my daughter even futher, and to completely ostracize her, then I'll refrain from telling them or their parents about her aspergers. If one day, she wants to divulge this info to close friends, she's more than welcome herself.

It made me wonder though. So many people think "Oh, I'm basically a good person, when I'm confronted with a sweet child with aspergers, I will treat her right". And then they look at tv shows like Big Bang Theory with Sheldon probably having aspergers, or Parenthood where Max was diagnosed with it, as well as his aunt's new husband (can't remember his name!). In any case, they look at these characters and think these kids/ppl and their quirks are sweet and endearing and funny and very human. But the reality of talking/living/coping with an asperger's child can be faaaar from that scenario. It's frustrating, it's hard, it's difficult, it's maddening. Very quickly, you forget how endearing it first seemed. Suddenly, this person's lack of insight is frustrating! Or his/her immaturity is so puzzling. Or his/her illogical behaviour or lack of common sense or silly way of speaking angers you because it just doesn't MAKE SENSE. Etc. Or they just doesn't behave like you expected them to. Or they got angry at something silly. Or angry at you because they misunderstood your joke. Or took something you said very literally. Then, suddenly, not everyone is so "basically good" anymore when confronted with the realities of aspergers. Suddenly, people gets angry and frustrated at that child or adult, and calls him/her weird. Suddenly, we forget that our kids watch how we behave towards or talk about the weird behaviour of people around us, and they copy us when confronted in the class by such a person. It's the way of the world. :-(

Anyway, here's a few of Boeboe's signs and symptoms (if long, leave it for another day. I should've split this post in 2).

Boeboe's very first sign that I noticed, was when she was about 2 months old. She had this way of gliding her eyes to one particular corner when you tried to entertain or engage her. As if she couldn't see, or was extremely disinterested in what she saw. I ignored it. Of course! She was only 2 months old. But it persisted. And where other babies at age 3 and 4 months become very interested in their environment, she didn't. My sister noticed it, and one day very gently asked me if I've noticed, and don't I think it very strange that she's almost still acting like a zombie at this age? If she didn't maybe indeed had braindamage from her traumatic birth. I replied yes I noticed and I do think it's strange, but that the clinic/pead just keep on saying "give her time, she's fine". And that I do see small improvements as time goes on, so maybe they're right and she just needed more time. So I held onto that belief. She smiled her very first smile at 10 weeks. And only once or twice a week after that. Way late. Everyone said, "ag you know, she was born early". When I replied, yes, she was born only three weeks early, they just shrugged. Boeboe laughed out loud once at age 4 months, then not again for many, many months. Five months was a definite turning point for her though. A leap in progress. She interacted with us and her environment! By age 8 months, she was like a 5-6 month old baby. I had to take her to the occupational therapyst to teach her how to sit independantly, but her developmental delays were written off because of "her difficult pregnancy, birth, slight prematurity and hospital stay as a newborn". I accepted it. What choice did I have? In those days, a concerned mom was hushed. Really. Just hushed.

When Boeboe didn't speak during her first year, it was written off as "something in our family, since her brother also had a slow start". She started saying single words, but only progressed to 2 words when she was already 2 years old, almost 3. She used an extremely limited vocab, and her pronounciation was so awful, that no one could understand her except me and her dad. Even he struggled at times. Everyone blamed the dummy (and thereby, of course me, her mother, that allowed her this!). I knew by this time there was much, much more to this than dummy-usuage! Which made me adamant that if she needed the dummy's security, I'm letting her be. Rather that than being a thumb-sucker as I have been for too many years as a child. Now, I'm really, really grateful that I allowed my anxious, autistic little girl the comfort she could derive from years of dummy-sucking.

Her language skills slowly improved, though with a number of hiccups. For example, she refused to talk AT ALL at school. She loved going to school to pick up or drop her brother off. So from age 3, I stayed a bit with her so that she could play there when I dropped Mr N off. She didn't socialise. She didn't play with the other kids. But she watched them, and she loved following her teacher. From around age 3.5, I was even able to leave her short stints at a time, hurrying to quickly do shopping or such. After age 4 at some point, she was able to say hello to her teacher. It was huge!! She spoke!! She also started to play WITH the other kids.

She only threw her famous tantrums when I was there, picking her up (every day!), or if I hung out at the school for a while. She never threw tantrums if I wasn't around. Which is one of the reasons I thought this isn't/can't be Aspergers. Because clearly she could control it, not true?! That's what I thought.

Her tantrums started when she wasn't even 10 months old. I told her no when she tried to take a toy off her brother. Man! You should've seen it. She threw her whole itsy bitsy baby-body backwards, hiting her head quite hard and started screaming with a very angry, red face. Oblivious to how her head must've ached. Her hands curled into little fists that she was banging on the ground next to her, and she kicked her legs viciously. It took me a moment to wake up from my stunned surprise, and pick her up to hug her and make sure her head is ok. This just infuriated her more, so she arched her back away from me and kept on screaming.

This was the first tantrum I saw. The first of way-too-many. From there on out, it happened daily. And I couldn't pick her up, she would just head-bang me and hurt herself even more. So I tried all the tips and tricks the books advised. Hugged her, spoke calmly, ignored her, walked away, etc. Nothing changed a tantrum, but walking away or ignoring her had the worst results. Ppl blamed me, they said it's because I always gave in that she learned to not stop until I give in. After many years, I once decided to time it, because of those ppl who didn't believe me that I HAVE tried ignoring her. After a 3-hour tantrum, I couldn't take it anymore. I interfered. How long should you ignore your screaming, self-hurting child to teach her not to expect help from mommy? Three hours was my limit. Do you know how it feels to listen to a 3-hour tantrum? Do you have any idea the exhaustion, the pain, the confusion, the hurt this causes a mother, and the child? I ached for what her throat must've felt like. It certainly sounded very hoarse and painful by the end of that 3-hours. :-( It didn't change her tantrums after that. She learned absolutely NOTHING from that 3 hours. I learned to follow my instincts. I had one older boy who threw tantrums for 6 months and that was it. After age three, he never, ever threw another tantrum. I knew what was normal, and what Boeboe gave us, wasn't.

One thing must be remembered. Almost all the traits of an asperger's child is normal, human-being traits. It's the intensity of this trait that presents strongly in aspergers, compared to other children. So reading the following list, you may find yourself saying "my child does that", either because you worry he/she has aspergers, or because you can't identify it with aspergers if your child clearly has it too, and he/she is "normal or neurotypical". It's all about the intensity. The level to which the child takes it. I have 4 children, and the other 3 also displays some of these signs. But none of it compares even close to how MUCH Boeboe displays it. In her case, it overwhelms. It washes over you like a storm on the sea. It's also normal for children to have some of these traits to an extended degree, and still not have aspergers. Aspergers also doesn't mean you have all these traits. But you will have a lot more than the average non-asperger person will have! So you have more of these signs, to an intenser degree. Does this make sense? So here's the list (my comments about Boeboe in italics):

Emotions and Sensitivities:    

1. An emotional incident can determine the mood for the day. (O gosh yes, don't upset her the morning and then try to take her to school! It has become much better with age. And the more you try to calm her down, the worse it will get. You simply COULD NOT reason with her. It is much, much better now, and especially after starting the medication.)
2. Becomes overwhelmed with too much verbal direction.  (One instruction. One explanation. One short sentence. Its better with age, still not on par with her peers though.)
3. Calmed by external stimulation (e.g., soothing sound, brushing, rotating object, constant pressure).  (Hugging her security object. Or sucking. As a baby and toddler, this was the dummy and her blanket.)
4. Desires comfort items (e.g., blankets, teddy, rock, string). (Had her comfort blanket taken EVERYWHERE until she was about age 6. We even bought a 2nd one (to hide, in case its needed), but she seized it and from then on had 2 security blankets taken everywhere, lol.)
5. Difficulty with loud or sudden sounds.  (yes)
6. Emotions can pass very suddenly or are drawn out for a long period of time.  (Drawn out way, way too long for what's considered normal. She'll still cry or moan the evening about the fact that I made her brush her teeth at breakfast!)
7. Inappropriate touching of self in public situations.  (I think just what's considered normal in Boeboe's case.)
8. Intolerance to certain food textures, colors or the way they are presented on the plate (e.g., one food can’t touch another).  (Yes! Couldn't even tolerate anything but completely smoothly mashed up food until after age 2. She improved beyond what her older brother has. He still has MAJOR issues with this.)
9. Laughs, cries or throws a tantrum for no apparent reason.  (Cries and tantrums for no reason, yes!)
10. May need to be left alone to release tension and frustration.     (Yes, we send her to her room numerous times a day, even now at age 12.)
11. Resists change in the environment (e.g., people, places, objects).  (Yes! She has to be warned and given ample time. Even at age 12.)
12. Sensitivity or lack of sensitivity to sounds, textures, tastes, smells or light.  (Yes! But normal in our family.)
13. Tends to either tune out or break down when being reprimanded.  (Tune out. She just doesn't listen. She keeps on screaming and screaming, drowning out everyone else.)
14. Unusually high or low pain tolerance.  (Very low, except that she WAS very brave and coped with immense pain in her life. But then she'll cry on and off for 5 hours because of a simple papercut or a bumped toe.)

School-Related Skills:   

1. Difficulty transitioning from one activity to another in school.    (yes, I believe so)
2. Difficulty with fine motor activities (e.g., coloring, printing, using scissors, gluing).  (yes, but it's mostly controlled now.)
3. Difficulty with reading comprehension (e.g., can quote an answer, but unable to predict, summarize or find symbolism).  (yes! A huge issue in her school work, especially in language subjects. I still do her summaries of her work for her. She doesn't understand symbolism at all. She struggles with comprehension, both verbally and what she reads.)
4. Excellent rote memory in some areas. (no)
5. Exceptionally high skills in some areas and very low in others.  (yes! Tested as such in her IQ tests. A particularly bad discrepancy between her verbal and non-verbal skills.)
6. Resistance or inability to follow directions.  (yes!!)
7. Short attention span for most lessons.  (not sure. Teachers doesn't complain, so I don't think so?)

Health and Movement:     

1. Allergies and food sensitivities.  (Yes! Nuts, oranges, honey, medications)
2. Apparent lack of concern for personal hygiene (e.g., hair, teeth, body odor). (yes! Even at age 12. Doesn't care for herself at all, drives me dilly when I have to ask her to comb her hair or wash her feet! I still have to remind her to brush teeth every time, "approve" (or not) what she's wearing when we go out and telling her to wash her face. She simply cannot eat ANYTHING without the tell-tale signs still being on her face afterwards. Even now at age 12!)
3. Appearance of hearing problems, but hearing has been checked and is fine.  (yes!)
4. Constipation.  (yes! But its also a physical problem from her tethered cord.)
5. Difficulty changing from one floor surface to another (e.g., carpet to wood, sidewalk to grass).  (As a baby yes, not anymore. It was quite funny how she would rock on her legs and one arm, while the other arm is lifted up and extended when she was a crawling baby. She was clearly unsure how to put that arm down when the floor texture has changed in front of her. LOL)
6. Difficulty moving through a space (e.g., bumps into objects or people).  (Yes! Irritates me to no end. I didn't realise this is an aspergers issue. :-(
7. Frequent gas, burping or throwing up. (No, but she does have GERD.)
8. Incontinence of bowel and/or bladder. (Yes! But in her case, due to a tethered cord.)
9. Irregular sleep patterns. (No, not since being on the medication to calm her anxieties.)
10. Odd or unnatural posture (e.g., rigid or floppy). (Yes! She got therapy to help with this.)
11. Seizure activity. (No)
12. Unusual gait. (Yes! But again, due to the tethered cord. And not too much of a problem these days anymore.)
13. Walks on toes. (No)
14. Walks without swinging arms freely. (No)

Social Skills:    

1. Aversion to answering questions about themselves. (Yes! She seems unable, rather than unwilling to answer.)
2. Difficulty maintaining friendships. (Groan. The bane of her life at the moment!)
3. Difficulty reading facial expressions and body language. (Yes! Psychiatrist and psychologist both noticed this. It's something we have to now work on asap.)
4. Difficulty understanding group interactions. (Yes!)
5. Difficulty understanding jokes, figures of speech or sarcasm. (Oh Yes! The psychologist especially looked out for this during her last visit there, and said Boeboe is extremely literal. She doesn't grasp figure of speech at all.)
6. Difficulty understanding the rules of conversation. (Yes! A big problem. She doesn't understand taking turns, timing, etc.)
7. Does not generally share observations or experiences with others. (No, she does. But limited, I think.)
8. Finds it easier to socialize with people that are older or younger, rather than peers of their own age. (Yes! Much, much younger. All her friends or ppl she wants to interact with outside of school are at least 3-4 years younger than she is.)
9. Gives spontaneous comments which seem to have no connection to the current conversation. (Oh Yes! Then we'll ask "huh?", and she'll have no clue why it makes no sense to us.)
10. Makes honest, but inappropriate observations. (Yes! Thank goodness she does seem to know or have learned that she must wait until me and her are alone. Not like she was little.)
11. Minimal acknowledgement of others. (Not a big deal with her, no. Big deal in myself though.)
12. Overly trusting or unable to read the motives behinds peoples’ actions. (Not sure about this one. She's very trusting, but I think it's just who she is? A more normal reaction rather than an intense one.)
13. Prefers to be alone, aloft or overly-friendly. (No.)
14. Resistance to being held or touched. (No. The opposite! Except during a tantrum.)
15. Responds to social interactions, but does not initiate them. (Better now, was a problem when she was small.)
16. Seems unable to understand another’s feelings. (Just sometimes. She can be very empathatic towards smaller children and animals.)
17. Talks excessively about one or two topics (e.g., dinosaurs, movies, etc.). (Talks excessively, yes! But the topics differs. It usually does reflect her emotional age though.)
18. Tends to get too close when speaking to someone (i.e., lack of personal space). (Oh yes!!! As someone who can't stand it, it has been really difficult for me to allow her into my space, and I still struggle as she still cannot respect those boundaries. I tried to teach her to give her peers space as well, as this has been a huge problem at school.)
19. Unaware of/disinterested in what is going on around them. (Yes when she was little. Now much better.)
20. Very little or no eye contact. (No, not a big problem with her. Surprisingly. She reminds me of myself. I hate eye contact, but has forced myself to stare, and it really is a stare, at people. She also seems to stare at people, so I guess she learned to copy me?)

Behaviors:    

1. Causes injury to self (e.g., biting, banging head).   (Used to, not as much anymore. But does get self-harming thoughts.)
2. Difficulty attending to some tasks. (Yes! Daily battle in our house.)
3. Difficulty sensing time (e.g., knowing how long 5 minutes is or 3 days or a month). (Not a big problem anymore.)
4. Difficulty transferring skills from one area to another. (No, I don't think so.)
5. Difficulty waiting for their turn (e.g., standing in line). (Used to be, not as much anymore. We played LOADS of boardgames to fix this.)
6. Extreme fear for no apparent reason. (Yes! Diagnosed with general and separation anxiety disorders. Lots of fears.)
7. Fascination with rotation. (Love it, but not particularly fascinated.)
8. Feels the need to fix or rearrange things. (Not as much as me! :-)
9. Fine motor skills are developmentally behind peers (e.g., hand writing, tying shoes, using scissors, etc.). (Oh Yes! Only learned to tie her shoes when she was 11, for example.)
10. Frustration is expressed in unusual ways. (Hmmm, no, except if tantrums count as unusual!)
11. Gross motor skills are developmentally behind peers (e.g., riding a bike, skating, running). (Yes! She'll never be really good at sports and such, but she's getting better all the time.)
12. Inability to perceive potentially dangerous situations. (Yes! Very much an issue for us. Especially when she was smaller. She would climb onto the couch's back, jump off, hurt herself, and then just climbed back onto it! We even took her to an occupational therapyst about this, because we were so worried.)
13. Many and varied collections. (Yes! Funniest things she collected, and she's a hoarder.)
14. Obsessions with objects, ideas or desires. (Yes!)
15. Perfectionism in certain areas. (Yes! But who isn't?)
16. Play is often repetitive. (Yes! Which is one of the reasons her older brother stopped playing with her.)
17. Quotes movies or video games. (No. But she'll regularly refer to her tv programs. Out of the blue, or in play or in a conversation.)
18. Ritualistic or compulsive behavior patterns (e.g., sniffing, licking, watching objects fall, flapping arms, spinning, rocking, humming, tapping, sucking, rubbing clothes). (She used to rub her blanket, but I haven't noticed anything recently?!)
19. Transitioning from one activity to another is difficult. (Yes! She hates being interrupted by something like lunch.)
20. Unexpected movements (e.g., running out into the street). (Yes! Regularly hurts her little sister this way, by accident. Because she just acted like jumping up for example and little sister was physically in her way.)
21. Unusual attachment to objects. (Yes, very attached. Unusual? I don't know.)
22. Verbal outbursts. (Oh Yes! To this day, age 12.)

Linguistic and Language Development:     

1. Abnormal use of pitch, intonation, rhythm or stress while speaking.  (Yes! All of these. She'll for example leaves most sentences hanging in the air. She doesn't close them off by using a lower pitch. Almost like she's asking questions.)
2. Difficulty understanding directional terms (e.g., front, back, before, after).   (Yes! She was helped with excersizes and therapy.)
3. Difficulty whispering. (Yes!)
4. Makes verbal sounds while listening (i.e., echolalia). (No.)
5. May have a very high vocabulary. (No. The opposite. Hers are years and years below the level of where she should've been.)
6. Often uses short, incomplete sentences. (Yes! Drives us dilly!! When she'll say something like: "Mommy, that little thing." And I'll ask, "what little thing?" or "what about the little thing", and she'll just repeat "that little thing". And you have no idea what little thing, what about it, what's important about it, what did she want to say, etc. And she'll cry because she TOLD me and how could I not understand her? Or like today, she asked if we were allowed to take that piece of paper. It took me 3 tries to get her to explain what piece of paper she was talking about.)
7. Pronouns are often inappropriately used. (Yes! Drives her dad mad! She keeps on saying "her" for "his", etc. And remember, she's 12!)
8. Repeats last words or phrases several times. (No, not really.)
9. Speech is abnormally loud or quiet. (Yes! I get sooooooo angry. She talks so softly, you can't hear her! Even when asking and asking and asking that she speaks up, she seems to try, but it comes out the same. So frustrating!!)
10. Speech started very early and then stopped for a period of time. (No.)
11. Uses a person’s name excessively when speaking to them. (No.)

So as you can see. More than enough signs and symptoms. Her relatively good eye contact and her love of physical touch and affection was the 2 things that always made me think she just has traits, not the disorder itself. Psychiatrist says that she just doesn't have all the signs, which is normal for all asperger kids. Her social issues are severe enough to earn her the diagnosis. :-(