It is a new year that holds new things. People tend to focus on the future and make goals to strive for. Each year holds both the good and the bad. No one gets to be exempt. Just because something appears to be bad does not mean that good will not come from it. Those of us who are under The Authority have a beautiful promise I am sure I have mentioned in a past post. I will remind you. "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 (Romans 8:28)." That being said, this year has not started out the greatest for Baylor but I believe God will use our knowledge of her health to lead us in ways that will help her feel better and have a happier life. I need to back up to November and give you the back story to her new diagnosis.
Poor baby caught pneumonia over Thanksgiving and then then right before Christmas caught Roseola. Roseola is a high fever virus that runs a few days and then a lacy red rash appears over the body. Most people who do not have damaged immune systems (read gut/brain theory) can rid their body of such a virus in a matter of days. Baylor cannot do that. Everything seems to linger with her because her body is not strong enough to fight quickly. After this last virus (which happens to be in the Herpes family) Baylor had a new reaction.
She panicked in the car every time we came to a stop, screamed like someone was stabbing her when we would pull off the interstate or stop at a store to go in. Previously she loved car rides and begged me to go "bye-bye" and handed me my purse because she was bored at home. Shoes and socks had to "tok off" at all times (yes we have had record lows this year in temperatures in middle Tennessee) or meltdowns would follow. She would beg to be held and once you held her she would continue to beg to be held. She cried all the time. Her gaze would wonder all over like she was on drugs and would hum non stop and then shriek. Her constant state of being was misery. I absolutely lost my composure (and most likely what was left of my mind). Where did she go? What happened to her? Why was this happening to her? God, why? Has she not been through enough? Have we not been through enough?
Honestly, I do not know the answers to but the first set of questions. I do know that my God is good and He loves our family and He has good things for us. The other questions may never get answered on this side of eternity but that is okay. I trust in His plans and in His unchanging character so readily displayed for all who care to know. I love how He will give us wisdom and guidance if we request it. I had that feeling like her symptoms described PANS but I was really hopeful I was wrong.
Her new tics, new obsessions, irrational fears and visual disturbances that happened overnight describe PANS/PANDAS. Pediatric Autoimmune Neuropsychiatric Disorder and the latter adds Associated with Strep. We do not know which one she has yet but we are treating the PANS right now. We did a high dose Vitamin A protocol over a period of two days which is why I asked for prayer over Facebook.
As I was writing my plea for prayer, I was standing on an elliptical machine during a very busy hour at our gym. Nobody appreciates people standing on work out machines NOT working out. You get super judged for stuff like that and I just did not feel like looking like that person. So I threw together my post and went about my business. I did not mean to worry anybody, I am very sorry. If anything super dire comes up I will give some fast updates and not leave you hanging. This explanation would have taken about forever for a status so I kept it simple. A little too simple and serious. I appreciate all of you who prayed and sent messages, texts, phone calls, etc. Back to PANS.
This is an understudied disorder and there are quite a few protocols you can do. We have to wait about 3 more weeks before we can continue with our treatment to give her liver some rest. Guidance, we really need guidance. Homeopathy is another option as is some very invasive trials with treatments that go into her blood. Obviously we prefer the less invasive options but we want to be open to where God wants us to take her. The gracious gains from Vitamin A:
1. She is singing songs we have never heard her sing before.
2. She lost the super odd visual glances.
3. The humming and shrieking stopped.
4. Imaginative play has gone through the roof.
5. She is enjoying reading and identifying pictures along with answering "Where is _____" questions.
6. She is overall much happier.
7. Not obsessed with shoes and socks off at all times.
8. Her sessions with Speech and Occupational Therapy is at an all time high with joined attention.
9. She is engaging in side by side play with toys the other children are playing with as opposed to going off by herself.
10. She is enjoying big sister more.
11. Car rides are much much better, as well as store visits.
We will continue on the biomed path we are on until God opens the door for something else. Any and all continued prayer for Baylor and her healing and wisdom for us as we hold her and try to help her all while laying her at the feet of Jesus. We praise Him for all He has done and all He is going to do.
Thank you for reading, thank you for praying and thank you for your love.
I hope 2014 is filled with a remarkable journey you can grow and be joyful on.
Because He lives,
Team Baylor
