It has been almost a year since we got Luca’s bloodwork done.
It was something that was organised through the Child Development Centre we attended. And I remember being told that they thought it was a good idea. I felt like someone had thrown a brick in my face.
You see, no one had ever mentioned anything to me. About anything. Here we were talking about Luca having autism at home, and discussing the probability at nursery, and there they were afraid to even mutter the term for fear of offending us or giving us false information. I naively thought Luca would be seen by various professionals, we’d get our autism diagnosis and that would be it. But then they drop bloodwork on my lap.
To me, bloodwork is done when they think there’s an issue but they need evidence. It isn’t exploratory. It isn’t a ‘just in case’. And when I asked the reasons why the bloods were being taken, I was given the ‘to rule out…’ reason. Ok, fine. What are we ruling out?
There it was. This was the first time I’d heard of Fragile X, but it wasn’t to be the last. It was casually dropped into conversations here and there, almost as though they were trying to get me used to it. And I had just wrapped my head around my child having autism, I couldn’t cope with having to learn and obsess about something else. So, I did what any parent would do. I got medical advice from a whole load of professionals immediately.
I consulted Google. Obviously.
And I could see the similarities. I could. But there were so many things that Luca did not fit. Mind you, I could say the same for autism, so it wasn’t much of a comfort. So we waited for the appointment to come through.
We got the date and we were to go the children’s ambulatory services one day before his 3rd birthday. Didn’t they know he was having a pool party?!
I am a calm person by nature. I’m not a ‘flapper’, I don’t panic, I’m methodical and I’m a planner. On the run up to the appointment, I was nervous as hell. How were they going to do this? I’m going to have to literally pin my baby down and hold his arm so they can get these bloods. I’ll be at this head, and Neil will have to hold his legs and it’ll be so traumatic that it will scar him forever. The nurses will try and distract him with toys, but they don’t know Luca so they don’t know that that won’t work, and they’ll try and talk to him and soothe him but they don’t know that he won’t understand a word they are saying.
In the end, it was…eventful. He actually fell asleep when we got there and I thought we’d have the easiest appointment ever! But when he got the numbing cream on, it caused a skin reaction, he scratched the cream and bandage off and woke up! Bugger.
However, we got enough on one arm, and were told that his veins looked good (he gets that from his Mama), it just meant that they had to work from that arm. There were no other choices.
When we went into the room, it was go! Up on the bed, tablet on, sit between my legs, dad in front to help distract (Luca actually played with Neil’s teeth the entire time), needle in, a bit of a squirm and cry, blood out and done! We were in that room for maybe 15 minutes total.
When we got back to the car, I could have cried. Cried for how good he was, how good they were, how efficient it was, how that was it over now. Wasn’t it?
Oh wait, the results. We were told it would take 8 weeks for everything to come back, so imagine my surprise when 4 weeks later, they came in the post. It was a thin envelope. I expected thicker, multiple pages. This was one page, I could tell.
The only result that was posted to us in this envelope was the result of the Fragile X screening.
And it was negative. I had the thought that they wanted me to know about that as soon as they did, so instead of waiting for the rest, they sent that first. I am grateful for that.
After those results were posted, I actually forgot that we were due more. It was a few weeks later before we got the rest. Everything came back clear except his iron levels. He had substantially low stores and could be in danger of developing anaemia.
Did they know my child? He has the most energy of anyone I know! Along with those results came a prescription to get iron supplements.
Now, I am not anti-medication or intervention or vaccination. I want to make that crystal clear. I will give my child the most protection I can medically. However, as an adult I have suffered from iron deficiency. I have taken countless supplements and the side effects were terrible. Painful. I am not going to give me non-verbal 3 year old this medication. So what are my other options?
Diet change. Again, do they know my child? He has one of the best diets of any toddler I know. He has green veggies, eats red meat, 5 fruit and veg a day, treats in moderation, fibre where we can get it in him, no added sugars or salt. What else could I possibly do?!
But we researched. And did you know that cow’s milk prevents iron being absorbed? We cut back on that. Did you know that vitamin C helps the body absorb iron? He gets orange juice every morning now. Did you know that raisins and fortified cereals are iron rich? Those form part of his breakfast alongside his OJ. Spinach was added to his pasta meals, we tried to incorporate tuna (still a work in progress!) and salmon (more successful) and added dried apricots to his snack jar.
And do you know what? I don’t know if it’s made a difference to his iron levels. We haven’t had them re-tested, and as far as I know, there aren’t any plans to do so. But I’m confident that I’ve done all I can without supplements. And so if we ever do get bloods taken again, and iron deficiency is still a problem for us, I’ll grit my teeth and offer them. I’ll watch and observe and try to pre-empt any nasty side effects, because I know I’ll have done all I can do.