A few things have happened in the past few weeks, which has found me circling the dark downward spiral of Dr Google diagnoses. A place I thought I was beyond. No good can come of Dr Google- everyone knows that.

So firstly, we had a neurology appointment- which was good. Positive, easy, quick.

Dr: “Is Luca having seizures?”

Me: “erm, I have no idea… its very hard to work out absent seizures” (people go blank in the face- no shakes or anything else… so no idea if Luca is just spaced out or having a seizure!)

Dr: “ok, we’ll ween him off his anti-seizure medication”

Hooray! After 7 weeks, he should be medication free. Unless, I notice seizures- which I never have been able to except when they were non stop and life threatening!!

Secondly, we had our “Developmental Medicine” appointment, which really gave us no further insight. I asked what can we do to get an official diagnosis and the (really super lovely and friendly) Dr laughed and said- “we can’t magically pull something out.” From that appointment, she explained that if his hip doesn’t fix itself by January, then he may need surgery to correct them. They MAY fix themselves, with the extra movements (crawling and 1/2 standing poses) he’s been doing. He’s also been referred to dentistry for his constant teeth grinding.

Thirdly, I had the chance to visit a friend in NZ recently. She has twins that are 6 months older than Luca. I am past the stage of comparing what kids Luca’s age can do and what he can’t do. But, after having a weekend full of 3 year old cuddles, energy, attitude, tears, chats, I came home and literally forgot that my 2.5 year old son can’t/doesn’t hug or kiss me. Let alone, use that desperate tone to call for his mummy in a toddler crisis.

So, what can I do? Back to square one. I can’t do anything but Google Luca’s symptoms. “Non verbal”, “super slow motions”, “rare diseases”, “life expectancy mitochondrial disease”, “dystonia” etc etc…. none of these give me answers that I need… Nothing new. I can’t diagnose my son. I don’t know who can.

Dr Google can’t help me. I end up going to AMDF’s website, to find comfort in people’s stories. No two sufferers are the same. It’s not the answer, but it helps to suck it up and move forward. Ahhhh Limbo land.

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On a positive- my boy has started to go from knees to stand against couch position- as well as downward dog. (I must remember these positives sometimes!!)

Next month I’m doing The Bloody Long Walk, if you can spare a buck to support AMDF, please go to https://blw-melbourne-2017.everydayhero.com/au/nadja .