Good news!!

So why do I feel so flat? So sad?

It's been a very tiring week. I took Monkeyman to the hospital for his blood test, just to hear that they need special tubes for it, which needed to be ordered first. So next day, we had to go all the way back. He was amazing, like always! No tears, no fears, no tantrums or backtracking. Just being brave. He climbed onto the bed, stuck out his arm and didn't even said "ouch". And it was quite a bit of blood.

Three weeks ago when the cardiologist told me that we needed to take Monkeyman for this bloodtest, she told me "if it's negative, we'll go forward with the muscle biopsy in any case". She actually repeated it twice, as if to make sure I know where we stood.

Guess what? The blood tests came back today, she phoned me with the results. It was negative!! I wanted to scream yay after our conversation ended!!! But I just felt flat. Flat, and sad, and frustrated, and so very, very, very angry.

Because I asked her, "so are we going to do the muscle biopsy next?" Guess what her reply was... "No, it's not indicated. Mitochondrial disease is not indicated."

Oh. OK.

So what now? Well, on Thursday, when I picked up the blood test form at her office and she asked me how it's going, I told her it's really not going well. That he is extremely tired and that I didn't realise that the vitathion had such a huge impact on him. So after saying today that we don't need to do the muscle biopsy, she told me that we should put him back on the vitathion, the Q10 and the carnitine. "Because if it helps him so much, why not?".

Uhm. OK. So if my son have a constant high fever, let's give him paracetamol "Because it helps him so much!".

What about looking for the CAUSE first, or at least while treating the symptoms???

Argh man, I'm so angry. So so angry. How can there be no one that follows through for us? Every bloody darn time we find a doctor that promises us the world, but when it comes to it, they just drop us. Why why why? This isn't the first time this doctor (a cardiologist) has let me down. It's also not the first time that she said that if xyz, then we do abc. And then when xyz happens, she backtracks and says "abc isn't indicated/necessary". Like when she said if his bloodtests showed low lymphocytes for a third time, we should go to his pead. And when it did, and I asked: "so should we go to the pead now", she replied angrily: "I AM a peadiatrician myself!".  And like when there was something up with my son's lungs. She noticed it on the x-rays, but instead of following through, she just kept on repeating the x-rays ("because it's cheap and non-invasive") THREE times! Every time getting the same result. It took a pulmonologist to immediately realise that he's inhaling his stomach acid, causing reactive airway disease in especially the right lung. Even the 2nd cardiologist we saw, looked for 2 seconds at the x-rays and claimed: "There's nothing wrong with his lungs!". The pulmonologist heard the cracles through her stetoscope, saw it on the x-ray and picked it up from the lung function test. The numbers were clear on that.

So what to do? This cardiologist has now at least 3x backtracked and not followed through on her own plan of action. My husband says we should phone her again on Monday, and tell her that we're not satisfied being left in the lurch. That it's clear there's something very wrong with our son, and that we know from reading up on it, that the blood test is NOT a particularly good indicator of mitochondrial involvement or not. That a positive can be taken as a positive sign that something is up (several causes for it though) and a negative is indicative of nothing. It does not exclude mitochondrial at all.

But I feel like we're done with this doctor. I'm done with someone that backtracks every time, and never follows through. I can't do this anymore. So I want to go to his peadiatrician, and beg her to please run with this. And not leave us hanging. To please please please help. Because our son is suffering and we're worried and stressed and feeling sooooo alone.

When I look at my son, I can just cry. The difference between what he was on the vitathion, and what we have now is so clear. So obvious. If there was ever even a thread of doubt left that there's really something wrong with him, it's gone. I know there's something wrong. And I want them to find it and fix it. He's suffering, and how is it okay to leave a 6-year old suffering??? How can this whole damn situation even happen??? How how how? You see your child is ill. You take him to the doctor. He gets diagnosed. He gets treated. That's how it works, not true??? How can they just leave him be like this? How can this cardiologist think it's ok to just treat the symptoms with a cocktail of vitamins, without continueing to look for the cause?

The past month, he has been constantly tired, he had fever 4 times, he threw up one day, he has tummy aches constantly (daily) that drives him to tears, he had chestpain so badly for about 3 days that he couldn't get up on the barstool one morning or done much more than just sit or lie down. His legs and feet sometimes pain so badly, that he's crippled for a few minutes. He's anxious, unhappy, and sad. He's in pain, he can't do what he wants to because he's too tired. When he (or me) pushes himself to do something, he turns pale. His eyelids constantly hangs at halfmass. He has circles under his eyes. Even other people has now noticed that it's going badly. And this all after being on holiday for almost 3 weeks!!

Argh!!! But no, let's just throw vitathion at him, "because it helps him so much"!!

Should we do it? Give him the vitathion to at least give him some relief? Because seeing him suffer like this, it's eating away at us. It kills us. But what if next year, the next doctor says "oh, he needs a muscle biopsy", and then he has to be off it for 3 months again to do it?! What then... do we put him through this torture AGAIN, all the while when he's starting grade 1? How can that be fair to a little boy?? He's already suffered 1 of the necessary 3 months without the meds. Shouldn't we stuck it out, just in case they still want to do the muscle biopsy?

Man, I can just cry and cry and cry. We started this road so long ago, our goal was to fix it before grade R. Then, we made it our goal to fix it before grade 1. That's next month!! I can't do this anymore. I really can't. I don't cry easily, but today, I just cried. I wanted to be happy because the blood test was negative. But instead, I just cried.

On a more positive note. The kids passed!!! Their hard work paid off. They did really well, and we're super proud of them. Monkeyman too. He did exceptionally well, he's such a bright little boy. So we're all moving over to the new school, and they're starting grade 8, 6 and 1 there mid-January. Now... we're going to relax, enjoy the holidays and try to get rid of all this stress we were all living under. Upwards and onwards!!