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.