Monday, February 04, 2013

Troubled Waters

Soren has had a really rough start of the year.  For some inexplicable reason his seizures have increased greatly.  We'd gotten him down to 3 per month.  But in January he had 16 and so far in February he's already had 10!

When I saw that things were increasing, we went to see his neurologist in January.  We did a little adjustment of his meds in the hope that it would control things better.  But instead, the nature of his seizures seem to be changing.  Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes.  For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:

Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure.  They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).

During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face.  Breathing typically returns during the clonic (jerking) phase, but it may be irregular.  The clonic phase usually lasts less than a minute.

As you can tell from the description, they are rather horrible.  But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds.  These are less scary to watch and are over in a flash.  With Tonic-Clonics, Soren passes out for a long time afterwards.  With the Clonics, he's bouncing back quicker and seems less out of sorts.

I only recently did the last adjustment on his meds, so I am trying to be patient.  But this is difficult when it's my child that is suffering through the process.

We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.



Pencils said...

I already commented a bit in twitter, but I wanted to say it here too, I wish Soren the best, and hope that the change in the pattern could indicate positive progress. Into something more treatable or more tolerable at least.

Your strength is most commendable, I feel ever so lucky that my own nature is not tested with such hardship, because I am not sure I could make it. I have all the respect for you and empathy for Soren. Compared to me (and most people) you are a giant, and I most definitely look up to you.

It is hard to really express anything really graceful about the hardship others experience, so pardon my clumsy attempt.


Arianna said...

Keeping good thoughts for your boy and wishing you continued strength

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Brookey Mama said...

I am always here if you need a friend. Praying they get his medications adjusted, and relief for Soren. You are an amazing mommy!

Unknown said...


You already know this, but it's still true...

You have a LOT of fans. If there's anything that any of us can do, please let us know.

You are a giant among humanity, both for your sense of humor and for your deep strength.

Jeannie Sherwood said...

Hi Amy,
My son has gained quite a bit of seizure relief through an "oxygen enrichment program". It has worked better than any of the many medications we have tried. Feel free to email me if I can help you with more info. Keep on keeping on.

Wendy Burkhard said...

Have you ever thought about Rolfing? It's worked wonders on my daughter Harmony.

Wendy Burkhard said...

Let me know if you like to hear our story.

Wendy Burkhard said...

Have you ever thought about Rolfing? It's worked wonders on my daughter Harmony.

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