My Heart Hurts Today

Ah...I think blogging has helped me in dealing with Joaquin and his epilepsy. We've been dealing with so much lately...

We had an EEG in May and the results were so positive. There was no epileptic activity on the reading. NONE!

His neuro explained that his medicine is keeping his seizure at bay. Now we just need to continue to monitor his growth to adjust his meds accordingly.

She explained that along with no activity, that he is on a very low theraputic level of meds. Even better news.

Since we have weened him off of Klonopin and put him on Frisium, his appetite came back and he put on 3 lbs in a month. We had a rough weekend of breakthrough seizures. Not bad, we adjusted his meds and were good.

We then decided to try to ween him from his Frisium and after one day with just 5mg less, my little terror was becoming my sweet boy. This medicine has really brought out the nastiness from within.  After only 4 days off of a single dose, we had a big drop attack...my little man hit his head really hard.  I thought I might have to take him to the ER to make sure he didn't have a concussion.  So drop attack = back on full dose of Frisium.

We went 7 days seizure free and he had a really quick one early in the morning of June 21st.  Not even 5 seconds.  All was good, his doctor had adjusted his meds again to get him to where he's supposed to be, and then today...after 10 days seizure free...

We had a seizure...I was getting lunch ready for my DH and our youngest came out of their playroom and grabbed our friend, who was the closest to him.  He dragged him into the room and pointed at Keen'R.  And of course, he was in his post ictal state....

After everything calmed down, I couldn't stop thinking about how proud I was of my youngest, to have been smart enough at 21 months go alert someone about his big brother.  Keen'R bounced back within minutes from having the episode and was just fine.

We are getting better day by day with becoming seizure free...but
My Heart Hurts Today