Friday, June 20, 2014

Another Syndrome

Speaking of recent trips to the farm and allergic reactions...
A few weeks ago, Ben came back from visiting the farm with "Bapa" with a big mosquito bite on his forehead.  I didn't think much of it until the next day when it was so swollen and looked like a huge goose egg.  I wish I had taken a picture.  After a couple of days it looked normal again.

After another Sunday evening with a visit to the farm, I noticed his right hand swelling up. 

I couldn't find the sight of the actual bite for a while but finally I noticed a tiny blister on his finger.
I looked up "reaction to mosquito bites" online and it seems that Ben has yet another Syndrome...Skeeter Syndrome.
Seriously, it's a real thing.  However, it sounds more ominous than it really is.  It's just a severe allergic reaction to mosquito bites.  Nothing really to do about it except try and avoid mosquitos :)

I was able to attend the Utah Epilepsy Conference a couple of weeks ago.  Andy was camping with Josh so my kind brother came with me for moral support.
Thanks Jo :)
I can't believe I didn't get more pictures than this, but this is Heather Jackson from Realm of Caring in Colorado.  This is the organization from which we will most likely be getting Ben's cannabis oil.
It was very informative and answered a lot of questions we have had.  She made sure we understood that this is not a miracle drug for everyone but that over 50% of the kids that tried it had a positive reaction and 25% of those kids were "super responders" in her words.
We'll probably be waiting until fall or winter of this year after we have completely come off of the ketogenic diet and we've had a chance to see how he reacts to that before starting something new.

Even though Ben no longer has formal naps during the day (something I tried to fight but just wasn't going to happen) he sure is falling asleep an awful lot.
...and having lots of seizures.  His new record is 17 tonic clonics in 4 hours before we finally stopped the cluster with his diastat.  He clusters like that approximately once a week.
He's also started having a blotchy reaction after his seizures...what's that all about?

On days like that it's hard to get food into him...especially when he falls asleep in his chair.

He's an angel little double syndrome boy :)


  1. Aimee, I'm such a hit and miss blogger right now! But I LOVED catching up with your wonderful family! Loved all the photos - your kids are just so cute!!!

    Blessings, prayers and hugs for all!

  2. Thanks for the update on Ben - I've been wondering about him and how he was doing. Too bad that skeeter problem wasn't the only issue he has! Poor little guy - sure hope you can find something that works for him. He is so adorable!

  3. He is such a sweet little guy. :)