Blood Tests – Is this the end of the road to Diagnosis

Blood Tests – The Next Stage

Now they have ruled out our son meeting the Diagnostic criteria for Autism they want to determine if he has something else: Something that can be determined by simply doing a blood test. I say that like it is the easiest thing in the World. I feel so selfish for wanting it to come back negative, but before you defend me it is not for the right reasons. You see it is apparent that our son does have additional needs, it’s the determining what. So a test coming back negative is just another barrier to helping find out what it is, so that the best course of action is taken for him. No the problem with the test coming back positive is that then they will want me to give blood too.

blood tests special needs

Giving Blood facing my Phobia

I could have refused, but I am not going to be the one to stand in the way of my son getting every bit of help and support he can. However, I did nearly collapse in the hospital when it was suggested (they kindly went and got me water). In fact even writing this is making my arms itch and my body feel faint – like I shall collapse. If you have not gathered I have a needle phobia. This is how our son started life. I was meant to have bloods taken at 34 weeks – but the midwife wasn’t available. I ended up having them when I labour (at 35 weeks). Magic cream, gas and air, very loud iPod, and my husband stroking my head, I SCREAMED the whole time. Lying down at least meant I couldn’t faint. See I can do it, when I have to, if I have to.  And I do, have to.

Blood Tests what they mean for my little boy

CGH Array Analysis and Fragile X Testing the letter says. New terms, not both unfamiliar, I vaguely remember someone telling me he sounded like he could have Fragile X before. Do I dare look, search out the answers, or do I just wait?

His test is Thursday. Luckily my husband’s work have been amazing. And so has he. He has the day off to take him. My son, I’m sure, will be fine. Poor thing has had so many (not as many as a lot of children I am sure) blood tests and things. He is such a good boy. And then more waiting. Will I look in that time? And what if he is positive? What if I’m positive? What then?

No we shall wait, and just be positive, and not think about the blood tests, or the needles, and just stay focused on the happy little boy who is coming along so well.

2 thoughts on “Blood Tests – Is this the end of the road to Diagnosis

  1. Awww hun I can totally relate. Not about the needle phobia, about the whole process you, your partner and Son are going through. My advice to you, don’t read up about Fragile X. I did. I freaked out, got upset, paranoid, you name it. It consumed me through the whole waiting process. I was sure H had had it, it seemed to ‘fit’. I had almost convinced myself it was that. Then I blamed myself, as the genetic anomaly comes from the Mother to her Son only. Then as you know, the results came back and it wasn’t that at all, but something different. The test is to check all chromosomes for anomalies. But one of the more ‘common’ ones is Fragile X. Whereby there is extra material duplicated on the X Chromosome. The test looks for less common disorders too. There are so many rare chromosome disorders out there which cause sensory issues, development delays, speech and language delays etc etc. Again as you know H has a rare chromosome disorder. But of all the rare chromosome disorders his isn’t really that rare, well in comparison to the other ones, 3 in 10,000. I think Fragile X was 5 in 10,000 (but don’t quote me on that as that was last January I read all the info and so much has happened since then). However, if you are like me, I just like to know exactly what to expect in the worst case scenario, so I am prepared. I read too much, even now. Will I stop? No. Will I panic less, yes. What will be, will be and I am so lucky to have him in my life, and lucky that his condition isn’t degenerative. As long as H is happy, and I fight for all the correct support he needs, requires and deserves then I am ok with that. Good luck hunni. I will be thinking of you all. Here if you need to talk xxx

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