I am not a medical professional...

...but something is not ok here...

Let me start at the beginning...

At about 3 months old, Malakai was diagnosed with Hypothyroidism (originally I heard Hyperthyroidism, but have since learned that I misunderstood the doctor... great...). Side effects of this condition going untreated include mental retardation and stunted growth (I must be honest, I don’t know any other side effects because those two are enough thanks...). So, Malakai has been on medication since then and every three months I take him for another blood test to see how we’re doing. So far, the medication has kept his thyroid within a ‘normal’ range.

*Fast forward to yesterday

I got home from work and, as usual, I start Malakai’s routine with a bit of playtime, then dinner, then bath, then bottle and sleep time. But during yesterday’s playtime I noticed something odd. It made me go ‘hmmm’. Every now and again he would have a ‘glitch’ in his movement (for want of a better phrase). To describe this, it would be a mixture of a fright/reflex/spasm/seizure. His arms would move involuntarily, his gaze would go distant and his breath would quicken (like when you stick your toe in freezing water). But, this would happen so fast, literally half a second, that I would blink and wonder – ‘did I see something?’.
So I watched... and I watched... and I counted at least 30 of these ‘episodes’. But I only noticed them when I was stimulating and playing with Malakai on his back.

After an hour I decided to call the Pead-on-call at our local hospital and she called us to the hospital immediately. When we arrived and were booked in, the Pead eventually arrived (by this time Malakai was so tired!) and I tried to show her what I was seeing. Her response was ‘this looks normal’ and ‘he’s just excited’. But my husband saw what I saw and I told her that this had never happened before, this was new... I was worried. She brushed off my concerns and then agreed to organize an EEG when she realised he had (and I quote) ‘abnormal chromosomes’. Like an elastic snapping, I retorted ‘no... actually he has 46 perfectly normal chromosomes... and only one extra’.

I slept next to Malakai all night, in a very uncomfortable and squeaky chair – receiving comments from nurses about Malakai’s ‘convulsions’ (please note that they actually made the ‘’ with their fingers, as if I needed some extra sign language in order to understand their lack of belief in my convictions). ‘O.K.’ people!

In the morning we got test results from blood drawn from Malakai last night. His TSH levels had increased from 1 – 8 in two months (since his last test). In layman’s terms, TSH is produced by the thyroid. The higher the level of TSH, the lower the thyroid function. Normal functioning is between roughly 1 and 5. Kai’s has increased 8-fold in two months! When I asked the Pead why, I got a –mumbly-jumbly answer about ‘growing boy’... I’m just not buying it. When I asked if this thyroid dysfunction could cause the seizures I was told ‘no’.

Even though the Peadiatric Neurologist thought my description of Malakai’s movements sounded like a thing called Myoclonic Seizures, Malakai’s EEG came back normal. The Pead was only too happy to send me packing with a ‘told you so’ attitude masked in a ‘conversation’ with my son about how his mommy needs to take him home because there’s nothing wrong with him. Can anyone spell P.A.T.R.O.N.I.S.I.N.G.?

I felt really silly, questioned my instincts as a mother. Thank God Darryl also saw what I was seeing, otherwise I think I would have lost it!

So, after sleeping like the dead for 2 hours (did I mention the squeaky chair?) I got up and started my online search for answers.

Let’s remember first though that I was told
1. Malakai’s movements looked normal
2. A normal EEG means there is nothing wrong
3. His Thyroid is not linked to the seizures (imaginary or not)

After about 5 minutes online I found the following information:
1. Visuals on YouTube showed me other babies with Myoclonic Seizures make the same movements as Malakai did.
2. Both DS-Health Online and Epilepsy Ontario agree that in people with Down Syndrome, a normal EEG does NOT rule out Epilepsy.
3. Down Syndrome-Epilepsy Foundation has done studies that definitely link Thyroid Dysfunction and Myoclonic Seizures. In fact, Myoclonic Seizures are made worse by lack of calcium in your body and the Thyroid controls calcium-absorption... pretty darn linked if you ask me!

So, after playing 0-0-Mom, I have a better understanding of what could possibly be going on. The dramatic increase in Malakai’s TSH (and hence drop in thyroid function) may have lead to a decreased ability to retain calcium thereby opening the pathway to the development of myoclonic seizures. Add to this that babies with Down Syndrome have a 40% more chance of developing seizures, and the fact that I had epilepsy as a child, and hey presto! I am not losing it.

Tonight, the seizures continued – and this time they lasted a little longer (or were linked together?). There is something wrong with Malakai and I have two ‘medical professionals’ who have given me the incorrect information and questioned my instincts as a mother. That really makes my blood start to boil. Do they not realise (just by looking in my general direction) that they cannot fob me off with un-educated opinions? I will find out and I will call them on it!

OK people – I am tired. It has been a really really long day... I have had to sit around waiting for doctors to use little ‘’ when they speak to me, I have had to fight for my son and for what I know I saw, and I have had to do this all after a night in a squeaky chair...

I am on a mission here to help my son. This is not something I want to see escalate. Please send my little boy a silent prayer, a positive thought, light a candle, blow a kiss, send us some love – please.