Thursday, August 1, 2013

Finding answers for Justin…

I received an overwhelming amount of love and support from my last post about Justin and the struggles we have had for the past 5 months.  So many readers emailed me and gave suggestions and I can’t tell you how humbled and thankful I am to know that there are so many compassionate people in the world!  To know that others care and are praying for our family means the world to me and it has fueled me to keep up our battle in fighting these aggressive symptoms of Autism. 
As I was following leads to doctors and clinics and pursuing tests, it seemed as though nothing was “feeling” right.  I didn’t know what to do.  I just kept praying and following leads but I wasn’t feeling any clear inspiration one direction or the other.

Here’s the big question that I want to take a minute to clarify, because it is a great question that many of my friends asked me when they heard that Justin was struggling so much.  “Aren’t there doctors who treat Autism, like specialists??”  And here is my answer for you—“No, there is not a specific field of specialty in the MD world for treating Autism.”  There is a field that specializes in diagnosing Autism, Developmental and Behavioral Pediatrics, but they don’t treat Autism.  And just in case you think that must be because I live somewhere rural enough that there aren't enough qualified specialists….I called one of the top ranking children’s hospitals in the country and tried to set up an appointment for Justin, at their Autism Center, and she told me they didn’t have a child Psychiatrist who specialized in Autism—so I left a message and they consulted with nurses and their group and called me back to tell me that they really only diagnose Autism and that wouldn’t be much help to me for treatment…..AGREED!!  
This is so disturbing to me—not only because my son is falling apart, but because there are 1 in 50 kids being diagnosed with Autism and yet there isn’t a medical school in this country that is specializing in how to treat it!!  It would be like going to the doctor to be diagnosed for pneumonia, but then turned away and being told, “I hope you can figure out a good treatment option—there are many out there, so be careful in how you choose your treatment!!  Some work and some don’t!”  That is the reality of having a child with Autism.  And if I had time to be disturbed about this or change the world, I would….but I have to let all that go and just focus on finding solutions for Justin right now.
After many horrific days of not feeling direction, and still continuing to watch my child bite himself, and wrestle and bite me, I had an inspired thought to email a friend of mine who has a son with Autism and ask who her doctor was.  She replied the same night and explained that they went to a doctor over 1,000 miles away, but that they had felt very happy with their experience there and that they were experts in treating Autism.  It was the first time in months I actually felt inspired and told my husband we needed to get an appointment ASAP. We called the next day and were able to get an appointment two weeks later!! 
Not even the fear of being cooped up in the car with Justin screaming for a 17 hour drive could overshadow the inspiration I felt that we really needed to get to this specific clinic.  So my parents flew out to take care of my other three kids and off we went!
We sent a lot of our medical records to the doctor's office and had several intake phone calls before we arrived and they were very thorough in investigating what was going on with Justin.  Within the first 5-10 minutes of our visit, the doctor asked us if we had heard of PANDAS (Pediatric Autoimmune Illness Associated with Streptococci).  I hadn’t ever heard of it.  As he began to explain some of the symptoms(irritability or aggression, extreme OCD, urinary frequency, personality change, sensory sensitivities, tics or abnormal movements, inability to concentrate)  I knew we had finally found our answer.  I felt an enormous wave of spiritual confirmation, “this is what he has.”  I was kind of stunned as I sat there listening to him.  My mind was back-tracking to the past 4 months and all the struggles and resistance from professionals and even some family members we had to pursue a different course for Justin, but we kept moving forward and followed the inspiration we felt and we were completely led to our answer.  The doctor kept talking and we had a thorough appointment lasting about 1 hour and 45 minutes…but all I remember is the first 10 minutes, and the most amazing testimony of how much our Father in Heaven loved my sweet Justin, and how much he must have loved me too—to answer my pleas to find out why he was struggling so much!!
When I was younger, my Sunday School teacher had us memorize three scripture verses from Alma 37:35-37.  Alma was a prophet in the Book of Mormon and in teaching his sons he said:
35 O, remember, my son, and learn wisdom in thy youth; yea, learn in thy youth to keep the commandments of God.
36 Yea, and cry unto God for all thy support; yea, let all thy doings be unto the Lord, and whithersoever thou goest let it be in the Lord; yea, let all thy thoughts be directed unto the Lord; yea, let the affections of thy heart be placed upon the Lord forever.
37 Counsel with the Lord in all thy doings, and he will direct thee for good; yea, when thou liest down at night lie down unto the Lord, that he may watch over you in your sleep; and when thou risest in the morning let thy heart be full of thanks unto God; and if ye do these things, ye shall be lifted up at the last day.
The words, “Counsel with the Lord in all thy doings, and he will direct thee for good,” run through my head often and have pushed me to continue  keep praying these past five months.  They have truly been some of the most heart-breaking months of my life.  And at times when I thought I had nothing left, I had the most wonderful friends and a few family members who faithfully stuck by my side and carried me through.  I know that these verses of scriptures are true, and that even though my direction took some time to figure out—we still received direction.
The treatment for PANDAS is primarily a few months of antibiotics and we have already seen some improvement.  We are still fighting this stuff, but at least we finally know what we are fighting!!
Oh yeah, and the 17 hour car ride home….well, let’s just say it’s a good thing we were still on somewhat of a spiritual high from the appointment because it was R-O-U-G-H!!  I may have cried and told my husband to just let me walk the last 8 hours by myself…..and I meant it!!  But we made it home, because of this guy…(My talented friend, Sanae James took this beautiful photo!)
My sweet husband drove through the night—24 hours straight with Justin screaming for the first 10 hours of that, to get us home!!  He just keeps on going, which is why I love him so much.  And I’m grateful he ignored my falling apart and hysteria and just kept telling me “we’re going to make it!” 
Thank you again, to everyone who has prayed and sent us encouraging words—it has truly kept us going!! And we have literally felt the strength and power of prayer.

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  1. Thank you, Shannon! And God bless you. What course will the treatment fir PANDAS take?

  2. I didn't realize there aren't specialists for Autism! What a blessing you've had!! Hugs

  3. So terrible sorry to hear what you are going through but so pleased to hear that you have found the right doctor who can help...God Bless you and I will add your family in my prayers....

  4. Hello Shannon, I want to thank you for sharing everything you do with all of us first off. I have two autistic boys myself. One mild and one severe. My 16 yr old, Sam who is severe, is actually in a facility right now through the public school system because they couldn't provide him an education any longer because of his behaviors. Also, his behaviors at home had become increasingly worse as well. I too was wanting to ask what the course of treatment for PANDAS will be? You see, all the behavior problems started with Sam, the biting, hitting, crying, screaming, complete personality change etc... the only thing the doctors could come up with was puberty. We have tried atleast 30 different medications over the last 2 years to calm him down and alm aggression but all to no avail. However, noone has ever mentioned and I had never heard of PANDAS until I just read it here. I always told every new doctor we got sent to that I wished they could have met my child before he "changed". Sam was always a loving child with a ready smile. He was a lover not a fighter. Like you when I read about PANDAS I thout this is it. Also, it would be awesome to know of the doctors that know how to treat autistic kids. As I'm sure you already know, there is no distance too far to go for our children when there is a need. Thank you for all you do and God Bless.

    1. Sondra, Please email me at so I can respond to you with information:)



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