So.......Lily and I have had one heck of a year between the two of us, medically speaking. I have said it before and I will say it again, I can not wait for this year to be over!!! However, we do have tons of things to be thankful for. Like no cancer - that's a biggie! Getting to see some of our China family this summer - amazing time! Mike starting his business - scary but good! Lily having 2 seizures - yes you read right - thank you God for the seizures!!!
Now before I explain why Lily's seizures are a good thing I would very forcefully like to drive home this core of my belief, not because I want to proselytize or evangelize, but because it is the only way I survived this summer. I clung to these words because they were the only hope I had.
Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
It doesn't say that God works some things for the good of those who love him, it says ALL. That means that absolutely everything that happens to me (or all things) God is working for the good. Even the things that I think are bad and horrible.
2 Samuel 22:31
As for God, his way perfect; the word of the Lord is flawless.
So here is how God worked Lily's seizures for good - this is long so get comfortable.
A few weeks back we conferred with Lily's pediatrician and we all agreed to seek a second opinion in the neurology department regarding Lily's seizures. The original neurologist, upon a 2nd abnormal EEG reading, simply said "Well her readings are abnormal, increase her meds, see you in 9 months." No explanation what so ever as to the what or why of her abnormal readings.
So we met the new doctor on Monday. Dr. Hsu happens to be the sweetest, most humble, and excellent doctor I have had the opportunity to deal with. He spent over an hour with us going over Lily's records and history and was very helpful and patient answering all of our questions. He had an immediate suspicion just from her initial EEG of what her condition is. We have another EEG scheduled for next week and hopefully we will be able to confirm his diagnosis. He believes she has a very rare type of epilepsy found in fewer that .5% of all epilepsy patients. It is called ESES or Electrical Status Epilepticus of Sleep - yeah, it's a mouthful.
This type of epilepsy does not present with visible seizures. It is an electrical malfunction only and does not include motor malfunction which is what you see with the twitching or flailing in a typical seizure. It is basically a hidden epilepsy that occurs as an electrical disruption during sleep. No outward signs what so ever. Instead of Lily's brain quieting down and going into a normal sleep pattern she instead experiences increased repetitious brain activity. From what I understand she never gets REM sleep. If left untreated this causes extreme developmental, cognitive, speech, and motor delays and eventually permanent impairment, all basically from severe sleep deprivation. This will also cause difficulty with growth.
If Lily hadn't had the two regular seizures this summer (which are entirely unrelated) we NEVER would have found this. We would have had no reason in the world to suspect something like this and no doctor would have recommended having and EEG without those 2 seizures. Thank you God for lighting our way!!
This type of epilepsy normally shows up in children between 3-5 years of age and presents itself as a sudden regression in abilities. The child will develop normally all along and suddenly they start losing speech, fine and gross motor skills, etc. Many of these kids are misdiagnosed as autistic or pervasive development delay (PDD or failure to thrive). Lily had them both as possible diagnosis. The epilepsy is not discovered in many of these children until too late when the damage has become mostly permanent. Once a diagnosis is made there is treatment but it seems to be a very difficult thing to get under control, no one drug or combination of drugs works all the time in every kid.
Dr. Hsu is very hopeful for Lily, however. We have no way of pinpointing when she began having these seizures, but we have seen nothing but forward progress from her in the two years she has been with us. Normally these kids go backwards pretty dramatically. Since she has been on the anti-seizure meds her progress has even accelerated if you can believe that!! She is starting to put on pounds, not just ounces, and her enthusiasm and drive are out of this world. Her motor skills are coming together all around and she is making more noise and meaningful vocalization every day. Dr. Hsu is hopeful that her current med is doing the trick and keeping these abnormal brain spikes at bay. The EEG next week will show how well it is working.
If we can maintain control over these episodes there is a very high likelihood that Lily will regain all of the ground she has lost and move on the catch her peers. This type of epilepsy normally disappears when a child reaches adolescents.
So now you know the scoop. We are thankful to God for everything he has done in our lives whether we have understood what he is doing or not. At times it is very difficult to hang on to any shred of faith but hang on we must. Then along come days like this when we want to sing from the mountain tops our praises to our faithful God.
2 Samuel 22:29
You are my lamp, O Lord; the Lord turns my darkness into light.
One more year....
7 years ago
