We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Monday, April 13, 2009

The Search Continues

Just a quick post to say thank you to all the wonderful people in my life (both the real-life ones and the ones in bloggy-land)! We have felt the amazing outpouring of love, concern, advice, and support over the past week!

Well, this Easter Weekend has not made it easy to get answers. On Tuesday night all I knew was that I had to help my son and I had to help him immediately. I have since realised that it may take a little while to get the answers to my million questions!

For now, Malakai is still experiencing these 'seizures' ("...) all the time. It is quite uncomfortable for me to watch him, but it seems that despite these episodes he continues to smile, interact and eat well. So, that has kept me sane this weekend.

In the meantime, I have spoken to a second Paediatric Neurologist (thanks to a friend who I work with who's friend's sister-in-law is this very mentioned neuro - what a small world!) who was kind enough to give me advice over the phone. She agrees that a normal EEG cannot rule out seizure activity (in fact, she mentioned that sometimes 4/5 EEG's are needed before the seizure activity shows up). She also agrees that the dysfunctional thyroid could contribute to 'lowering the threshold' of seizure activity (i.e. Malakai may be more susceptible). And finally she agreed that calcium levels could aggravate seizures.

So, tomorrow I need to take Malakai for a blood test to see what his thyroid looks like and also his levels Calcium Phosphate and Magnesium (as per the second neuro's advice). I have also been taping Malakai's episodes all weekend and will be taking these tapes to his therapists (PT and OT) for their advice and opinions tomorrow. I believe that they know him (and his 'normal' movements) as well as I do and they will be able point me in the right direction.

I am actually quite a paranoid obsessive person (at the best of times) - my mind can really run the gamut of possibilities... and then do it all again in reverse! I have had moments this weekend where I have thought 'perhaps the doctors are right and this is just Malakai being extra excited...' and then I just have to look at Malakai during one these episodes and know that this is not ok. There is something the matter with him and I need to make this better.

What I am hoping and praying is that there is a relatively simple solution - for example little Stella who had episodes that looked very much like seizures but was a severe reaction to chronic reflux brought on by chronic constipation. Malakai has both constipation and reflux issues (in a big way!) - so it is is possible that it is not a neurological but biological (is that the right term?) issue. But Malakai's therapists should be able to clear this all up tomorrow.

Either way, I am preparing myself with as much knowledge as possible so that I can be equipped to ask the right questions - unlike Wednesday when I was forced (through ignorance) to believe what the doctors told me.

OK - once again... very tired! I can't wait to go to sleep! Tomorrow is the start of a new week and hopefully will bring us some much needed answers for my little man.

Again - thank you from the bottom of our hearts to everyone for your support!


Cathy said...

Hi Loren...I don't know why I didn't write a comment on your last post...maybe a hungry baby or something.

Although I don't have any advice other than what you are doing...trusting your mommy instinct...I wanted to let you know that we are praying for Malakai!

Heather said...
This comment has been removed by the author.
Heather said...

Ok ... would have helped if I read further down and saw you had an EEG ... sorry.But I still say ... move forward until you are absolutely satisfied with what you are hearing.Next time ...I'll finish my posts missed first and then comment on the most recent ... sounds like a plan!

Heather said...

Forgot to say thank you for your continued support and love our littlest love.I deleted my first comment because I hadn't realized you actually HAD an EEG done.Was it sleep deprived?They often recommend those because if you can get Kai to sleep,they can see sleep pattern EEG and when he wakes,sometimes that is a time when they "catch" some seizure activity.I would totally ask for a really detailed EEG.So sorry you are experiencing this.Unnerving to say the least.I unfortunately have tons of seizure experience with Miss Zoey,so feel free to email me if you feel compelled.I am far from an expert but Zoey has had more EEG'S than I can count.Take care.Take a breath and I will check in soon.

Beth said...

Oh my! What a time you're having. I'm so sorry that you've had to deal with inept doctors (there are lots out there), but I see that it's just fired you up to get real answers. May they come swiftly, and with easy solutions.

Lisa Reid said...

Shame my friend, I can imagine how worried you must be but just remember Kai is half yours and Darryls so he is a very strong willed little guy and he will be fine : ) Hope you get all the right answers soooooooon xxx