More Pieces for the Puzzle

Firstly – as you can see by the pictures I took today – Malakai is doing well! He is happy most of the time and just loves his musical ladybug! On the down side, he is suffering from some serious reflux, and I am not joking! He (and I) seem to be covered in vomit (there no nice word for this...) most of the time!

But to my post!!

I feel a bit like a detective these days... Googling, researching, asking questions, demanding answers...

I have made some interesting discoveries over the past two days and I finally think I have found a link/cause of Malakai’s seizures.

On Friday we went to see Malakai’s original Paediatrician. Thankfully she was understanding and concerned about the seizures I was describing. She did however mention the link of seizure-like behaviour and severe reflux. Because of Stella’s mom sharing her story with me, I was completely open to this possibility and Malakai does suffer from quite serious reflux. So, we decided together to see if we could tackle the reflux and if the seizures continued, we would go back to the Paediatric Neurologist.

I told the doctor that the medication (Clopamon) that Malakai was on was not helping anymore for the reflux and she prescribed something else for him.

Then, on Saturday I noticed a dramatic decrease in Malakai’s seizures (both in frequency and length) and I had to think – what had changed? His reflux was still as severe (perhaps even more so), so it couldn’t be that. It was then that I realised that the only change in the preceding 24 hours was stopping the Clopamon. I decided to Google Clopamon and discovered that its main active ingredient is Metoclopromide. On page 1 of my search I was directed to the FDA’s website and a warning about this drug issued in February of this year. This drug had been found to cause Tardive Dyskinesia when taken for too long (more than 12 weeks) or too high of a dose. Tardive Dyskinesia involves repetitive and involuntary movement of the body... *Light Bulb* This drug is also thought to be the number one cause of drug-induced movement disorders. *Ahaaa* Children (and infants) as well as the elderly as said to be particularly susceptible to the negative side effects of this drug.

I have tried to figure out what dosage levels should be given to infants (to see if Malakai was taking too much), but there is conflicting information on the internet from various medical websites – some say that this drug is not suitable for children or infants, others mention 0.1mg for every kilogram and others state not more than 0.5mg for every kilogram. So, this is a discussion I will need to have with the doctor.

Regardless, I can confirm that Malakai’s seizures have definitely improved over the last 48 hours.

I am hoping and praying that this is solution. I am hoping and praying that he will not suffer any more side effects of this drug in future (as Tardive Dyskinesia can be irreversible).

Please, to my US friends – if you are using a reflux medicine for your little one, check if is contains this Metoclopromide (Reglan is the US equivalent to Clopamon). It sounds like a nasty drug with side effects that may outweigh the control of the reflux. Just Google ‘Metoclopramide’ and you’ll see the see that the scary stuff is not just on one or two websites, but everywhere...

So – I will be going to back the Paediatrician tomorrow morning to discuss this with her. Hopefully we have a solution, and hopefully not too much damage has been done.