Glimmer of Hope - From an Unlikely Source:-)

Dear Patton Family:

Faith continues to do well. Once again, I am very happy and surprised at her almost normal development and tone despite the extensive damage seen on her neuroimaging. Her progress (read our God) is TRULY REMARKABLE!!

Based on her history, I would lean towards labeling her as having cerebral palsy (likely spastic quadriplegia based on the neuroimaging). HOWEVER (Read because of God) she shows no sign of evidence of increased tone on exam, and so, by definition, she does not have cerebral palsy. It may be that we see increased tone in the future, but I am not certain that this will be the case given the fact that she is currently 2.5 years of age and has NO SPASTICITY!!! As such, I would simply term her as having acquired brain injury.

With respect to her epilepsy management, we discussed some possible alternatives to the phenobarbital elixir. One possibility would be to change to the alcohol-free elixir. Another possibility is to change to tablet form and give her the crushed tablets. Yet another possibility would be to try a completely different anticonvulsant and wean the phenobarbital. The reason for the change seems to center around her sleep problems, her hyperactivity, and the exposure to alcohol (from the elixir). After some discussion, we finally decided that since the phenobarbital was effective for her seizures, we would not change to a different medication that may not be as effective. We did decide to change to the tablet form of the phenobarbital, and see if that made a difference with respect to her side-effects. I also suggested that the parents consider investigating the sleep strategies outlined by Ferber.

In terms of her behaviours, I explained that the dysinhibition and lack of empathy noticed could be due to the location of her injuries (involving the frontal lobes). I suggested that the parents should continue to discipline her as they would any of their other children.

PLAN:
1 Change phenobarbital from elixir to tablets.
2 Consider Trileptal if phenobarbital continues to cause intolerable side effects.
3 Parents to work on behavioural methods for sleep training.
4 Continue to follow behavioural issues. Consider COPE program in future if necessary.

CAN YOU HEAR MY EXCITEMENT!!!!!

This is such a real letter. It really shows the remarkableness (it is early) of our God in her recovery. It also validates a bit of what I have been seeing.

I know that she is a miracle and always will be. She has already defied all odds...but I want all my readers to remember (because I have things said to me often that are starting to chip away my nice exterior) that God was able to do His work THROUGH man...THROUGH a doctor - THROUGH!!! God used their hands, and their equipment to keep her alive and to make her able to come home. It was THROUGH Him...THROUGH!!!

We are hoping that we can deal with the behaviours, our worker saw it yesterday. We have and will continue to see amazing progress with. We also remember that no matter what the circumstance we PRAISE GOD!!! So, if we do find out later on that she may be diagnosed with CP...I will praise God in that circumstance...if we find out later on that there is no other diagnosis for her, I will praise God in that circumstance.

I am thankful for the little bit of lights that we see periodically...especially when I am feeling worn out. These things keep me going!!