I broke both of my arms last Spring and was unable to do anything for myself, my family or my home for several weeks. I was a little out of it from the pain medicine, and completely forgot to pay Connor’s insurance policy. Connor was attending a school for kids on the Autism spectrum that cost over $4,000 a month. We only paid a portion of the monthly fee because his health insurance paid for the rest of it. Connor was on a Cobra policy, and was immediately dropped from the policy when they didn’t receive payment. I was devastated! I began crying out to the Lord for help, and praying for wisdom as to what to do with Connor.

It was during this time that we took him to see a Functional Neurologist in Dallas in July 2015. He diagnosed Connor with PANDAS, which, according to the PANDAS network:

“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.”

Connor was also diagnosed with Autoimmune Encephalitis. The Autoimmune Encephalitis Alliance defines it as  “a rare and serious condition in which the immune system attacks the brain, resulting in impaired brain function.”

The part brain of Connor’s brain that was affected is the part that controls his motor function. His gross motor, fine motor, speech and language were all affected. We also learned that Connor had about nine different eye conditions. He couldn’t focus, his eyes weren’t equally yoked, and he couldn’t visually track just to name a few problems.

The most heartbreaking part of all of this is that he had been living with all of this for 15 years! He did not get diagnosed until the age of 16. After years of going to doctor after doctor, Connor was misdiagnosed with PDD-NOS, an Autism spectrum disorder. We are so thankful for the brilliant doctor who finally correctly diagnosed Connor and we began treatment shortly there after.

Connor began weekly IVIG treatments. According to Medscape, “Immune globulin products from human plasma were first used in 1952 to treat immune deficiency. Intravenous immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors. Initially, immune globulin products were administered by intramuscular injection.”

IVIG is a miraculous drug! Connor received weekly home infusions and we started to notice a difference in Connor almost immediately. IVIG is a very expensive drug, to the tune of almost $6,000 a month and it is not covered by insurance. For Connor’s condition it is considered to be an experimental treatment.

After six months of treatment, Connor had his last treatment on Mother’s Day 2016. He has to be off the medicine for 8 weeks, before he can be re-tested to see if the antibody is still present in his brain. In the interim, Connor is in Speech Therapy, Occupational Therapy, Physical Therapy, Vision Therapy, swimming and golf lessons.

Connor is a completely different person then he was a year ago. We are so thankful for the accurate diagnosis and treatment that he has received. Please continue to pray for our sweet little man and that Connor’s brain would be completely healed. To God be the glory!

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us!” -Ephesians 3:20

Posted by Misty Phillip

By His Grace: Seek Jesus, Study the Word, Grow in Grace Bible Study Author, Christian Lifestyle Blogger, & Speaker www.MistyPhillip.com

18 Comments

  1. Wow! A wonderful testimony of the power and compassion of God. So glad that you finally found a doctor who properly diagnosed your son. God bless you and your family.

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    1. Thank you so much for your sweet comment! It has been a very long hard road, but God is so faithful to hear the prayers of his children!

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  2. Shauna Wallace 06/12/2016 at 10:08 am

    Thank you for the update! Just seeing his smile makes me smile. And the way he lights up a room with his enthusiasm! He is a truly amazing young man. I am praying, rejoicing and looking forward to the exceedingly, abundantly more than you could ever ask or imagine that the Lord has in store for Conner and your family!

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  3. Thank you, Shauna! So thankful for your friendship and your prayers!! You are a treasure!

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  4. Awesome testimony, Misty! Thank you for sharing! The Lord is so faithful! He began a good work in Connor and will surely bring that healing work to completion!

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    1. Thank you for that sweet word of encouragement Suzanne!!!

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  5. Laurie Stevens 06/12/2016 at 9:54 pm

    So happy to hear about the good work the Lord is doing in Connor and in the life of your whole family as you walk through this together. Praying for a good summer and good report when you have his check up! Love you friend!
    Laurie

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    1. Thank you, Laurie! Blessings to you and your family!

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  6. Laurie, Thanks for your encouraging words and prayers!!!

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  7. Wow what a long haul. Looking forward to the rest of the story and may you continue to rest in His abundance. Adorable young man!

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    1. Thank you!! James tells us to count it all joy, because these trials produce steadfastness and that is what perfects our faith. Blessings, Misty

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  8. That’s amazing! Praise God from whom all blessings flow! When you *finally* get that correct diagnosis, it’s like you are no longer fighting a hidden foe. To have the “name” and be able to target treatment is such a relief. Blessings to you & your family, and to Connor. I don’t know you, but I have an autoimmune disease (possibly two–in the process of diagnosis) and to have at least one named has made ALL the difference in how I’m approaching my treatment. I take meds but also do the Autoimmune Protocol or AIP diet to heal from the gut out. All the best to you, Jessica

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    1. Jessica, You are so right about knowing what to treat, and so much of our health comes from our gut. Blessings to you on your recovery journey! Misty

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  9. jessica cordova 10/11/2016 at 5:27 pm

    Hi Misty!
    Just discovered your blog so am a few months behind, but I wanted to tell you that i’m so happy connor is getting the treatment he needs. He has been a blessing to many and holds a special place in my heart even after all these years! Your words encouraged me as i go through my own journey of raising my youngest little girl who was diagnosed with CP almost 2 years ago. Best wishes!~

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    1. Hi Jessica,So great to hear from you and thank you for your sweet words of encouragement! Your daughter is so blessed to have you as a mom!! Congratulations on your success with Autism House! I know that you are blessing many families with your care. Much Love, Misty

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  10. […] with Autoimmune Encephalitis has been a whirlwind!  This is an update to Connor’s Smile and Prayer Update for Connor. In spite of the severe difficulties and hardship Connor faces, he is filled with love and joy, and […]

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  11. […] 1. Prayer Update for Connor – The most heartbreaking part of all of this is that he had been living with all of this for 15 years! He did not get diagnosed until the age of 16. After years of going to doctor after doctor, Connor was misdiagnosed with PDD-NOS, an Autism spectrum disorder. We are so thankful for the brilliant doctor who finally correctly diagnosed Connor and we began treatment shortly there after. […]

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    Reply

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