Healing

It really has been entirely too long since I last posted about Baylor. The last blog post was not much of an update so this may very well go on for a while! For sake of understanding where we are this September, I will drag you back to where we left off the entry before last - right after giving Baylor antiviral therapy (Vitamin A) in January.

I am going to be very honest with you about her time deep in her PANS episode (beginning of December until mid-January). I handled that month and a half about as poorly as I could have. Despair and darkness completely overwhelmed me and I literally cried more in that time frame than I have total in my entire life. I lost my focus on God’s character and faithfulness and the fear was all consuming. God lovingly gave Stephen the words to explain to me what I was allowing to happen in my spiritual life and what I needed to do about it. Humbling to say the least. I promise this is important to her update just bear with me! So I took my doubt and my brokenness to our forgiving Father and the all-day crying and hopelessness vanished and He restored my soul. I cannot say I passed the test well at all but I learned a lot from it. I may have gotten a D- on that trial but what I learned will not be taken away from me and I will use it for the rest of my life.

Upon my return to entrusting Him fully with Baylor, He brought my attention to a passage in James. Verses 13-15 say, “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven.” James is one of my favorite books and I have read it quite a few times but never remembered this. Short term memory is what I am best at, sadly. My first thought after reading this was, “Where are we going to do this?” Stephen and I had not found another church close by we desired to be at and my heart kept tugging at me to mention to him that we should take her to the elders at Grace Chapel. We were not attending at the time but Stephen agreed that we should ask them.

Contacting a church we were not members of much less not attending to ask them if they would pray over our daughter seemed odd. We were involved with Grace until Baylor kept getting sick all of the time and we found it best to keep her out of the childcare. We had been out of the church building for 3 years. I was not sure what Grace would say to my request but as the saying goes, luck would have it (even though I don’t believe in luck I believe God orchestrates), the church was having a healing service the following Tuesday, February 18. The most amazing pastor, Ron, talked with me about our situation and I explained everything to him and he did not have any reluctance in including Baylor in this service.

This was about a month after we had given her Vitamin A, which drastically helped her but did not take away all her visual disturbances/seizures. It lessened it quite a bit but did not eradicate them. I scheduled a neurology appointment because of the seizures but could not get in to Vanderbilt Children’s until early September. Good thing they were not grand mal seizures, as that is an exceptionally long wait. Our doctor saw Baylor in January and believed as we did that those visual disturbances were seizures. Eyes rolling back, eye flutters, long blank stares, involuntary arm and leg movements while this was happening, the works. They never lasted long at all but disturbing to say the least. Back to the service.

We really did not know what to expect except we were following God’s direction and bring our daughter to Him. The pastor I spoke with prayed over Baylor and anointed her with oil. We left that evening and put our girls to bed. The next day when I went to get them up, which rarely happens as they need very little sleep to get their systems going at full tilt, Baylor had thrown up overnight. How strange, my little is really not a puker. She did not seem sick at all the next day. She ate just fine and went about her business. I remembered that I had read that vomiting can be a healing reaction. Could it be she has been healed of something? After a week or so I noticed that I had not noticed any seizures. She was not on any medications at the time as we were on a break for her liver health. I am thinking, “Did He do it? Did He take away her seizures?” Maybe it is too soon to tell. I may not be ready to let this cat out of the bag without tangible proof. I am already looked at like I am a few sheets in the wind crazy so maybe I should wait a bit.

I get that call to remind me of my upcoming appointment with Vanderbilt neurology and I am really thinking we should just skip it. I think she is healed so why bother. Then I thought about the proof for everybody else. The proof would be a clean EEG. Poor baby, we held that girl down and strapped all kinds of wires to her head and made her lie still for an hour. If you know anything about my kids you know they can barely hold still two minutes, much less an hour. She fought like Mike Tyson while hooking her up, but she did a great job of being calm and lying still once she was all hooked up and wrapped like a mummy. That was grace from above for sure.

The next morning I get two calls from Vanderbilt right in a row that I missed. I call them back and leave a message. Finally the phone tag stops and they tell me she has a very clear EEG! No signs of seizures. Here I have some tangible proof that my God, the One True God, heals. How amazing is that?! How beautiful to be shown such mercy and love!

What is also wonderful is this new journey we started in May. I mentioned before that we were considering homeopathy and God just made it clear to Stephen and I that we should go down that road. I had done a very small amount of research in the past on homeopathy and have read a few names from some other warrior parents over a year ago and the one God brought to my mind was Rudi. Without hardly any research but God’s peace we start Heilkunst with a guy with a big reputation out of Canada.

Then I started to look into what we were actually doing. Energetic medicine is the second leading form of medicine used worldwide. What a ride this has been! I am not going to give too many details about it but we are watching it work! 

She has been making some great gains and we are in awe of this new venture. Everything the office sends us we pray over before we give to her. We then sit back and watch her go through the remedies and have her healing reactions (negative physical reactions that are temporary, much like the time she vomited after her anointing except sometimes it is wild behavior or a rash, etc.) and watch her make gains. They suggested I get treated alongside her as this is an energetic form of medicine and we affect each other. We plan to add the rest of the King crew to this healing modality but for now I experience a good bit of what Baylor does.  Ainsley is even getting in on some of the reactions and she is not even being treated! Our experiences are not exact as we are very different people but for me it is really nice to experience some of what she has to go through.  That girl is a trooper.

Baylor is enjoying her dance class, open gymnastics play, afternoon school, most of her therapy sessions, church and outside play. She loves music, trains, dirt, numbers and playing on her iPad. She is an absolute joy and loves her family, especially her sister as she is the only name she will say after her I love you response. Please keep praying for her and us as we help her achieve the best she so deserves. He hears us and answers. We love you all! 

Blessings,

Team Baylor

For my fellow Warrior Parents

I wanted to address my fellow parents, grandparents, siblings, best friends, teachers or therapists who may be trying to help the quality of life of a precious person who is affected by autism. You all are amazing and your work for your loved ones is not in vain. Keep searching, keep trying, and never ever give up. They are worth more than anything else you could do with your time and energy.

Thinking back on the past few years of our journey I was trying to decide what the biggest intervention we have done thus far for Bay. The answer was crystal clear as we took a not-so-welcomed trip down memory lane recently.

We have changed the way we eat in this house more times than I would have liked. Both times we changed our eating habits it was worth the complete hassle of it all. The first time was when we knew Bay was sick but no official diagnosis and we had not seen a specialist. I had a book on special diets for kids with issues ranging from ADHD to allergies all the way to full blown autism. I remembered we had it (as our oldest had some sensory issues and the book caught my attention) and we decided why not? We were willing to try anything to help her. The book said give the gluten/dairy/soy free diet at minimum a few months.

Ick. A few weeks or maybe one whole month was not enough? How am I going to do this? It is expensive and everything has gluten in it! Lifestyle changes are hard. The new task is daunting. I now have to get rid of pretty much my entire pantry. I am hot or cold when it comes to major life changes. For me, I had to throw it all out at one time and start with the basics. There are many ways to ease into this diet but getting rid of it all at one time was the way for me. Not to mention you cannot just decrease the amount of gluten and dairy, you must get rid of all of it. Check your toothpaste, shampoo, everything. If it goes in or on your body it has to be gluten free or this trial will not work.

Within two weeks we noticed drastic improvement for our baby. She actually slept through a few evenings in a row. Before we were up at 1:00 a.m. until 6:00 a.m. Every. Single. Night. It was so completely horrible. She laughed and bounced around all night, no end in sight. My husband and I took turns but how can the other even sleep well worried about the party going on in the living room? Our girl started to join our world a little more, was less hyperactive, paid attention to a few toys, and we even heard her voice again after she lost it. This new diet? It's on.

We have been on this diet now for over two and a half years with no infractions of major proportion. Until a month and a half ago. There was an oversight in her new environment away from home. They gave her......Animal Crackers. An entire helping. Oh, man. We were so upset. The next day she was spinning in circles and staring at ceiling lights and fans, humming non-stop, refused to let me touch her, laughed when she was not humming, reverted back to her own world completely. We had just gone through a major setback a few months before. At least this one only lasted about a month. Even her teachers and therapists noticed a huge change in her. They all asked me before I even told them what happened. I heard from one therapist after she explained her session with Baylor was not so good (and I told her she had a food infraction), "She seemed more autistic today." Yep.

No one can say if this is going to be as drastic for your child as it has been for mine, but is it not worth trying to see if it helps? It is a non-invasive therapy you can try and there is so much information online you will not be lacking in recipes or support. There is a lot of information on the internet about the gluten/dairy/soy/casein free diet. One of my favorites is www.tacanow.org. It stands for Talk About Curing Autism. Fantastic site, I suggest you all go visit. I also recommend The Thinking Moms Revolution. Google them, too.

No one is saying it is easy. The searching for answers and options, deciding on those findings, fighting to get what you want, actually executing your life. It is an all consuming job. There is never enough time in a day much less the energy. And no one gets it. Nor should they. Some days, weeks or months you feel like you are barely keeping your nose above the waves long enough to take a single breath to keep going before you plunge right back under the water. But the sweet child in your life affected by this condition might really truly benefit from this. You would do anything to help them and this is something you can actually do. And as a side note, when you find the right gluten free products you like, you will find this is not so bad after all.

Much love my friends and keep fighting.

Team Baylor

Requests

I actually think this may be a fairly short post. Not a whole lot has changed as far as knowledge on what we know is going on with Baylor, but we do have confidence in the direction God is leading us right now. The only thing is we are in a waiting period. Aren't those fun?

Where the update comes in is that we have two specific prayer requests for her and I will give you the Cliff's notes of why and it will explain what we need.

We received her results from all her labs and her doctor says he has never seen anyone with numbers as high as hers in his 30 years in practice in the viral category. So, we give a prescription for over a year that has been shown to greatly help the viral load she has. This in turn helps rid her body of the viruses that are being linked to psychological problems. Sounds straight forward enough. Super high titers (markers) are not good and really do a number on organs. Especially the brain and spine. Specific prayer request number one is for this prescription to help her in tremendous ways. We are waiting in anticipation of great things. He promises to give to those who ask (Matthew 7:7-11). It is just on His time table. So here we go, or wait, or whatever. Always moving forward in this marathon. We go from super high numbers to some super low numbers. Nothing like extremes.

Her labs for her immune system function are extremely low. So low that our doctor believes she needs infusions called IVIG. Bay is missing an immune protein in her blood that helps her fight illness and disease. This protein is missing in people with autoimmune diseases, cancer, HIV, MS, etc. She obviously has some but not nearly what she should have. This is why she is sick all of the time and I am super psycho about germs. Well, part of the reason I am psycho on germs. I am sure this is what opened her up to the PANS. And how she came upon a horrible immune system in the first place? That is a whole different blog post I will get to when the time is right. Anyway, she would have this infusion once a month and it would take quite a few hours. That sounds like a piece of cake but we know she needs it. Teensy problem. Our insurance is likely to deny because this is a $5k-$10k an infusion bill. She needs a year or two. We have the labs but insurance hates to pay. Surprised? I did not think so. There is specific prayer request number two. For now, just prayers for approval if it is God's will. We know that if He wills for her to have this it will happen. He listens to our prayers, make no mistake about it. His will is always going to happen but His means of getting there can change. There are lots of Biblical examples and if you want them, shoot me an email. Once we get approval we will pray for how to hold that baby still with a needle in her arm for three hours. Medical weed, maybe?! Haha. No, seriously. I have no idea how that would work. That request is for later.

Well, she is a happy love who is singing more and engaging more in school and therapy. She hates a change in school schedule and will straight up scream and lay out in the hallway if it is not to her plan. I love a strong spirit! I hate she needs it to be so strict. We are about to start a new church (well, our old one we love so much) and pray she handles this change! We have a long way to go in her healing but our Healer, Jehova Rapha is good. He is always good. Thank you for following her journey. To Him be the glory.

Thank you for your prayers. He'll answer. Just watch.

Team Baylor

New Diagnosis

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