I haven't been able to speak to the pead, but she left a message saying that Monkeyman didn't develop anti-bodies against his baby vaccinations. She wants me to repeat them (all those injections!!), and then retest his anti-bodies after 3 weeks. All his other blood tests came back normal (yay!). So no hidden allergy, no autoimmune marker that's high (of those tested), and no other immunity problems that she's mentioned. I've only managed to get an appointment with the clinic nurse for 13th March. So we'd only know more in April. Argh. Everything takes just forever!
So what does low lymphocytes and lack of anti-bodies means? I don't know. Yet. The little I read, it seems that you need lymhocytes to make anti-bodies. So having a low lymphocytes count could probably have caused the lack of anti-bodies. Does this mean he was born with it? Low lymphocytes since birth? Why wasn't it picked up during his 2-year old bloods? Wasn't it low enough to cause concern? Probably since he was such a healthy child?
In any case, we don't know much more. He has a cold currently, so we kept him at home. The weather is awful, and we're a bit scared that with him not having much immunity, and having a cold, and it being rainy.... well, you get the picture. Next week we'll repeat his vaccinations and then we'll just take it from there. I made appointments for Peanut's measle vacc, as well as Boeboe's 6-year old vacc that I've never given her yet, at the same time. I know, I know, that's seriously lacking of me. But I don't want to get into the vaccination debate and my reasons at this moment. Maybe one day.
I'm tired. Really, really tired. Tired to my soul. Bone-tired. Tired of dealing with what I have to deal with. Tired of people expecting me to act "normal", but then at the same time tell me "I don't know how you do it". A very good friend of mine asked me a couple of weeks ago: "How did I live through those weeks we believed Monkeyman to be in heart failure?". That to me was showing real compassion. She cared. And she understood. She didn't tell me "I don't know how you did it". She asked me "how did I live through it". Day to day.
I answered her that I honestly do not know. I guess I went into robot mode. What I didn't tell her, was that I was crying every day. That sometimes, I couldn't stop crying by the time I had to fetch Monkeyman. So I would sit in my car, wiping my eyes, putting my sunglasses on and hoping no one would notice my red nose. I'd walk inside, look at the other moms and dads and grandparents coming and going, and I'd marvel at their happiness. At how they smile and laugh and chatted to each other. I tried to mimick them, but I felt very far removed from myself.
I know people don't really know what to say. I know people think that when you say "my child has abc", they feel the need to reply "oh, abc isn't so bad, don't worry, your child will be fine". I don't know why. I think it's because there's just a limited number of responses we have, because replying "oh, your poor thing, abc is awful, what wil become of your child?!" isn't really an option. So I get it. And in some instances, hearing that there's hope, is exactly what we need. I was in that position this week. Boeboe had her psychiatrist checkup. Like that very first visit, I didn't expect much of this one. So I was wholly unprepared of walking out there feeling like I do. In fact, I almost forgot about it!! Fortunately the receptionist sent an sms-reminder. It was just a checkup on the medication, as to how it's working. So I thought it would be a very quick and easy visit, since it's going really well with Boeboe. None of the anguish I went through before the previous appointment and me not knowing what's going to happen.
Well, the appointment went well and as expected. But during the visit, the psychiatrist asked Boeboe something. At that moment, I just hid my shock and tuck the information away to process it later on. So I haven't really spoken to the psychiatrist about it (since Boeboe was with me). But it was about some of Boeboe's psychotic episodes. What shocked me about it, was the type of episodes it was. And the fact that I didn't really know about it. Afterwards, at home, I asked Boeboe a bit more about it, and I realised that she DID tell me about it. And I remember being shocked at the time, but it was years ago and like her other episodes over the years, it was written off as childhood imagination. I didn't realise that she was still experiencing it. I didn't know that she told the psychiatrist about it.
Usually, I went in first, and then she would see Boeboe separately after talking to me. This time, since I thought it a quick visit, I told Boeboe to come with me so that we could go in together. Before this week, I thought the psychiatrists were a bit over-the-top worried. That yes, we have a long psychiatric road ahead of us. And yes, there's peculiarities about my daughter. And yes, I accepted after the shock worn off that my daughter has psychotic episodes that needs treatment. But still, I refused to believe it's as bad as the 2 psychiatrists' words and facial expressions and body language told me. I refused to believe that Boeboe has a severe case of psychiatric disease. I told myself that firstly, the professor's opinion was almost completely based on what the first psychiatrist told him. Secondly, the first psychiatrist based most of her opinion on what I told her. And of course, I could be wrong very easily, or I could put emphasys on something that wasn't as bad, or I could say "Boeboe saw the stick move" and it is up for interpretation. For some reason, I never thought much happening in their private sessions together. Because it was very short, like 10-20 minutes, maybe 30, at a time. And because Boeboe takes time to open up to someone. And since she's so shy, I for some reason, just assumed her not telling the psychiatrist anything "embarressing" just yet. Clearly, I was wrong. In some of the earlier visits, Boeboe opened up and told the psychiatrist about some of her psychotic episodes. Some of her very worst episodes. And the psychiatrist based her opinion on this.
Now I understand. I get it. Her worry about Boeboe. Her opinion that we have a very very long road ahead of us. Her opinion that there's a whole lot wrong with Boeboe. And that it's not straightforward depression or anxiety only. And I now also understand why the head of the psychiatric hospital was able to see us within days! And gave the distinct impression that WE were doing HIM a favour for seeing him and providing him with family dynamics, family history, bloods, etc. for his research. I now get it.
My child is really badly off.
I didn't know. :-( I didn't realise. I played ostrich. Yes, they threw the terms around. Yes, I spoke to family about this months ago. But somehow, I still didn't own it. I still didn't believe it. I didn't live it. I didn't accept it. I refused. She's just my baby. I needed to take this slowly. I wasn't ready. I didn't even researched any of it! Because I refused to believe it was really necessary.
I'm sorry I'm not completely open yet. I'm being pulled in 2 directions here. The one is that I want to be completely open and honest. One reason is, because it's good for me. Two is, because it's fair to my family, friends and everyone who cares about Boeboe and our family (even though most of you only know her virtually). Thirdly, because I feel this desperate need to debunk myths about psychiatric illnesses, and to help get rid of the stygma attached to it. Also, I feel the need to help set the record straight. What you see on tv, may be very, very far removed from reality about certain diseases.
But this isn't just my story. It's not just my baby's story. It's the story of a 10-year old little girl who is very, very private. Who easily feels ashamed. Who dislike being singled out. Who hate being "special". Who just wants to fit in, be normal, feel normal, and dissapear into the crowds. So is it fair of me to blurt out ALL of her issues, even the most private ones, on here? Yes, I don't name her. I don't identify her. So it's not as if someone googling her will ever stumble across this site. Still, I don't know how much is fair to disclose about her. I honestly don't know. At this point, I feel like being a pioneer and pave the way for other parents one day. Do my little bit in making it easier, by educating about this. Teaching about this. And if indeed Boeboe has a severe case, I'm going to need a place to off-load. And if it can help another parent who goes through the same, it would be just wonderful. I know how lonely the road to diagnosis is. I know how lonely it is when you have no one that understands perfectly. That knows what you go through. And I've googled MANY blogs. And I'm always so very, very grateful to those parents who have put their lives and stories out there. For people like me who needs to know we're not alone. To be able to inform myself of the possibilities, the cures, the treatments, the progression, etc. Blogs have been absolutely invaluable to me. And I'm hoping and believing that ours serves the same purpose. So to not talk about a very, very big part of Boeboe's complete diagnosis, would feel wrong.
But, it's my daughter, and I need time to think some more about this. I'm not going to be impulsive. So for now, I'm just calling it psychoses, and I'm not discussing all my fears just yet. I'll get back to this, though.
The kids have started exams. Urgh. They wrote Afrikaans, their first home language today. I hope it went well. I've started the little heart pills for my SVT's, and what I believe is PVC's. So far, it hasn't helped much apart from making my heart beat slower. Much slower. It's down to 50-60bpm. And when I have an "episode" (SVT, PVC, both, I don't know!) it measured as low as 36. Highest I've measured it is fortunately only 142, not too bad, I think. Mostly it seems to hover around either 50 or 70. I don't like how the pills make me feel. But it's only been 2 weeks, so I'll give it time.
No comments:
Post a Comment