One final post about epilepsy. I contacted Jack’s parents yesterday to tell them Jack’s package was on it’s way (I sent Jack a marathon shirt, Do Epic Shit wristband, and my Chicago medal).
Happy belated Thanksgiving David and Janet,
Please don’t apologize for not getting in touch with us sooner, it is a two way street, we all have busy lives in this modern culture we live in, it is a brave new world. Tara and I very much look forward to show Jack the gifts you are sending him. That you are sending him your medal is so generous, Jack will surely wear it with pride. I have unspeakably good news to share with you… Jack has gotten into a spontaneous remission with his seizures. I have read about this possibility with children with Doose (MAE), and Tara and I have prayed for it. We don’t know if it is the two antiepileptic drugs he is on, or the ketogenic diet, or probably a combination of both that has finally and mercifully stamped out the assault on his brain. He has suffered countless seizures over the last 2 years. He recently had a clinic appointment with the ketogenic diet team and we shared the good news that he has gone past three months now with ZERO observed seizures. Previously Jack would average 5 or 6 days seizure free, on rare occasions he went as many as 12 days followed typically by 5 or 6 days of several seizures per day. I asked his neurologist if he believes it is the drugs or diet that has given him control, he said he believes it is the diet…but, he cannot say for sure. He knows that I despise that Jack has to take his drugs, and he knows I would prefer to treat his condition with the diet alone, but since we had so much difficulty getting Jack under control it is too risky to make any changes to his treatment, he said he would like to see Jack seizure free for at least a full year before making any changes. As much as I would like to be able to pull back on his drug dosage Tara and I are totally on board with continuing the current treatment. I also asked him how optimistic we should be that this remission may be permanent, he smiled and said “lets just say it is a really good sign”.
Since the seizures have stopped Jack is gradually showing improvement in his cognitive abilities, he has been hit hard and he is a bit behind his peers both physically and in what little academic testing goes on in junior kindergarten but of course this is to be expected with what he has gone through. He has 3 older girlfriends at school that literally dote on him (it is a split class and all three are senior kindergarten). That’s my boy! He is on the right track now and he can bounce back, I know he can, and he shows signs of it all the time.
David, what you have done with the Chicago marathon in support of Jack is something we will never forget. You will never know how deeply appreciative we are. Send our thanks to Janet for letting you carry on when she knew you were struggling to finish.
All the best,
Ps. The attached picture is of Jack on halloween… just because his special diet does not allow large amounts of sweets doesn’t mean he cannot participate, instead of treats he gets toys J