Lili Pea

Recently, my nearly four year old niece, Lili, was diagnosed with Epilepsy.  After a few scary seizures, trips to doctors who said nothing was wrong with her, my sister Kate and her husband Matt were able to get in to see a great neurologist who confirmed what Matt and Kate suspected.

This was Kate's update for us:

Just wanted to update you all on the review we had today with Lili's Neurologist. Going from what we've told her and Lili's EEG, she seems to think Lili's epilepsy is Panayiotopoulous Syndrome.


http://www.epilepsy.org.uk/info/panayio.html
She will change her diagnosis if the MRI shows a structural lesion, but at the moment she is confident with her diagnosis. Because Lili's EEG showed extreme activity in the occipital and parietal lobes, her diagnosis is still of the Idiopathic Benign Genetic childhood epilepsy. Lili will be on Eplim (sodium valproate) till she is re-evaluated and /or outgrows epilepsy, which can happen around the age of 13. We also are in the Epilepsy research study, and Matt and I had to get blood drawn today to give our DNA for the study. Anyway, as the professor said, if her child was going to have epilepsy then she would choose this one for her child since they can outgrow it and the outcome is good, so that is great news. Thank you for all your prayers. Lili has lots to say about her "fessor"as she calls her. :)
 
 

Now, I love all of my nieces and nephews a lot, but when one is my godchild, they are just that much more special.  Almost 4 years ago, I got to be in Australia shortly after Lili was born and be there for her baptism.  So, little Lili Pea has a special place in Aunty Lou's heart, and I know that God will protect and lead her and her her parents through this.