we love legos. You can never have too many lego sets

Patrick Ryan

First post: 1/3/2017 Latest post: 3/6/2017

I would have to say Patrick is a fairly typical 5 year old, (Just had his 5th B-day on the 30th!) he is a rumbling tumbling little tank of a guy that really enjoys life.  His favorite things to do are build Legos with his mom, wrestle with his dad, and play with cousins.   He is a great fisherman, already has a 4 lb bass under his belt, and loves to play outside.  He has always been a super happy and caring kid.  His mother always feels like he is growing up too quickly as his dad waits for him to be old enough for Father-Son fishing trips.  Life was pretty normal leading up to Thanksgiving 2016...


A few weeks before Thanksgiving Patrick had what I now realize was a very short seizure.  He showed no signs of illness and didn't have another one for two weeks.  During school Patrick had his next seizure that lasted 30 seconds or so.  His great Pre-K teachers were right on top of helping and quickly informed me of the issue.  After a call to our family doctor we nervously headed to the ER at Children's.  The ER doctors were great and assured us these are a fairly common occurrence in kids.  They ran tests and set us up for some further testing.  Naturally as parents our minds went to the worst possible scenario.  A few days passed and no seizures.  Around four days later Patrick had 3 seizures in one night.  We started working with our pediatrician as the seizures became more common.  After a 20 seizure day we started our first medication.  Doctors were fairly certain this would cut down and eventually stop his seizures.  We had a few good days until his seizures seemed to ramp up even more.  We ended up being admitted to Children's for our first stay.  We started medicines number two and three.  Once again we saw improvements and headed home after a short stay.  Meanwhile, his MRI results showed no issues, our minds were relieved for a few days at least.  Patrick also had an EEG done and it showed that he had epileptic like activity.  At least we knew what we were dealing with. 


Christmas Eve started great as Patrick got to open presents with his cousins and had a great visit from Santa.  Unfortunately,  his seizure activity ramped up enough to land us in the ER.  We got another loaded dose of meds and headed home.  Christmas was spent at our house and the smiles were ear to ear as he got all the presents he asked for.  That night and into the next morning his seizures ramped up once more.  We were back in the ER by noon of the 26th.  We were readmitted to the hospital. 


We have been at Children's since...we have tried 7 medications (I think...lost count) and we seem to always get the negative side effects and none of the positive.  It appears Patrick falls into a small group of people who do not react to these medications. Patrick has been a super trooper as he has endured medicine after medicine and test after test (even a spinal tap).  A new doctor brought new ideas as we are now looking at some possibilities of autoimmune issues.  So far we have seen some reaction to medication, but not enough.  Check for journal updates as we hope to find the cause quickly.


Thanks,


Pat and Nora

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