One Month Progress Update

 If you had told me a month ago, that our family would be able to drive 8 hours on Wednesday, celebrate Thanksgiving with family on Thursday, and drive 8 hours home on Friday ---I wouldn't have believed you. On top of that, Luke participated in Christmas bingo with his siblings and cousins like a champ!

 But thanks to God, the prayers of others and the IVIG, we did it! Don't get me wrong--Life is still challenging. Luke still has autism. Transitions can still be hard. However, we are seeing incremental improvements which allow us to get out of the house more often so we can enjoy life and make memories.

 Luke's anxiety and aggression have almost disappeared entirely. His OCD tendencies aren't as extreme. We are able to redirect him easier. He is happier and more compliant. At school, Luke has been more attentive, has more expressive communication, and exhibits excellent behavior. He hasn't gotten sick and has stayed healthy.

  We feel like our family has a new lease on life. We just put Luke's dresser and drawers back in his room-they were removed months ago because he would pull them out and throw them during his fits of rage.

 We decorated the house over the weekend for Christmas- without fear of things being broken and destroyed. Prior to IVIG, we wouldn't have been able to do this.

  On Saturday, the kids and I were able to visit friends and do Christmas crafts with them. Luke was great for the first two hours before behavior challenges popped up, most likely due to too much sugar! But we are counting the blessings for understanding friends and for the time we shared.

  Right now, the plan is for Luke to have 6 months of IVIG therapy. Luke's second round of infusions is scheduled later this week (12/13 and 12/14). The same fantastic nurse will be here.
Would you please continue to pray for compliance, little to no fear/anxiety, minimal side effects and successful outcomes?

I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Psalm 27:13

The silent battle of special needs and medical care

Most people are aware of the constant battle for advocacy in the educational system when it comes to special needs. But there is another looming battle that special needs families face on a daily basis-medical care. Medical discrimination is real. It is something we personally deal with on a regular basis with Luke. I have many personal stories I could tell about Luke. But it is not just us. Hear me: Individuals with autism and/or other special needs are much more likely to experience medical discrimination.

I was reminded of this again this morning thanks to FB Memories. Two years ago,  we went to Duke to see pediatric ophthalmology for Luke's newly developed lazy eye. We waited 3 HOURS before we even got placed in an exam room. When the doctor finally did come in, she spent 5 MINUTES with us. I explained that the onset of his lazy eye had occurred a few months earlier and I would like to know how to treat it. Did he need to wear a patch? What would be the course of action? She said that nothing needed to be done. I told her that I would like it treated-Luke didn't look this way before.  I left furious. Although she apologized for the long wait, that doesn't make up for the 90 minute drive there, more than 3 hour wait, 5 minute visit with no resolution, and a 90 minute drive back home. If I had brought in a verbal, pretty little girl, do you think she would have come up with a treatment plan for her? I do. I believe that because my son had special needs and was non-verbal, he wasn't provided adequate medical care.

Or what about the time I took Luke to the Emergency Department because I was sure he had C. diff. Clostridioides difficile (also known as C. diff) is a bacterium that causes diarrhea and colitis (an inflammation of the colon). The resident told me it was just a virus and I was just an overly worried mother. It took me another week before he was diagnosed and received treatment because I had to go through the process of getting  a stool test ordered by the pediatrician and all the steps of having sample evaluated. Not only am I also a medical professional, but I am a mother who knows my son. Respect the input of caretakers.

Luke's medical symptoms often get dismissed as "it's just autism". This is just WRONG. Because he cannot verbalize or pinpoint what is wrong, most of the time he is not even given an adequate exam. Unfortunately, there is a  lack of the standard of care for individuals with autism. Did you know that individuals with autism spectrum disorders have a higher comorbidity burden than the general pediatric population, including higher rates of seizures, psychiatric illness, and gastrointestinal disorder? .And yet, these comorbidities are not often addressed. THIS NEEDS TO CHANGE.

Similar to the school system, when a child is medically complex and doesn't fit in one or two boxes, providers often do not know what to do with them. Parents are left exasperated. And the children's needs are not adequately cared for. Luke has been passed over by medical programs at several medical institutions in multiple states because of this very bias. Luke has multiple diagnoses: deafness, autism, Usher Syndrome, PANDAS, as well as mitochondrial, metabolic, and immune dysfunction. And he is nonverbal. He is not less of a human. He deserves appropriate medical care. And we are not alone. I could share additional personal stories as well as story after story of others who experience this bias.  THIS NEEDS TO CHANGE. 

The purpose of this post is to educate others- those who know nothing of the battle we fight, and those parents who are in the midst of this very battle themselves. Awareness is the first step to addressing a problem. We must all do our part to give these families a voice to receive appropriate medical care for their loved ones.

** I am thankful to share that Luke is currently under the primary care of a wonderful, attentive pediatrician and neurologist who are addressing his medical needs.**

Be BOLD,
Jo Anna

Brain Inflammation...A small snip-it into our lives

This morning was not a one-time only event. The severity and details vary but this is a taste of what we are dealing with and how unwell Luke is. We love Luke. This neuro-immune disorder is wrecking havoc on our son and on our family. Luke is a 9 year old boy who has taken naps 3 days in a row. His OCD is off the charts.

It took 45 minutes of concerted effort to get Luke out of his bed and downstairs this morning. Kicking, hitting, holding onto the mattress, and more. He then refused to go to the bathroom, but, after much coaxing, I managed to get clothes on him.  He refused to eat any breakfast, but with Scott’s help, Luke took his medicine/supplements and had a few sips of water.  Luke also emphatically refused to wear his cochlear implants -so I put them and his breakfast in his backpack. He scratched and hit and threw things this morning. 

Jansen took the bus to school so he didn’t have to deal with the drama or embarrassment. Scott and I got Luke into the van. He took off his shoes and threw them at me. He then covered his eyes during the ride to school and cried real tears. When we got close to the school he held my hand. As he got out of the van, he hit me. 30 seconds later as he was walking towards the school doors, he looked back and signed “I love you” to me. 

This. Is. Hard. 

We want our Luke back. 

Would you join us in prayer that the IV Infusion treatments will be successful?

-Jo Anna

Luke Crawford's GoFundMe Page

On the horizon

We are so appreciative of your prayers and support. The days have been long and hard as of late. Luke has had at least one really challenging meltdown daily-usually over an obsessive thought that he cannot recover from. He has also been napping several days a week. This tells us that he isn't well.

Luke's home IV infusions will begin soon. He will be receiving high dose Gamunex-C two days in a row every 4 weeks. These infusions will take around 6 hours each day. He is also scheduled to be admitted to the Epilepsy Monitoring Unit for several days later in October. We have consulted with Cochlear Americas and Luke is not able to have a brain MRI due to the magnets surgically attached to his skull bone. Even if they were to remove them, the shadowing would make the results useless. We are still trying to a lumbar puncture scheduled as both his neurologist and pediatrician want it done.

Since the Autoimmune Brain Disease Clinic at Duke denied Luke into their program, Banner Clinic in Arizona is reviewing his case for the second time. Our pediatrician was told that Banner preferred for Luke to be followed by a clinic closer to us geographically, but since that is no longer an option-they may take on Luke's case. That being said, it is possible that we may be traveling to Arizona in the future.

We are so thankful for the following individuals and their family who sacrificially donated towards Luke's medical treatment:
Daniel Blink , Elijah Caudill, Luke Kerry

Kevin McCarthy, Ben Uloko, Michaela Scott 

Amber Esch, Karsyn Bell, Alyssa Yanez 

Nathaniel Hargrove, Gracie Comer, Melvin Argueta  

Payten Gray, Zachary Covely, Dylan Parker

Dalton East, Brendan Popella, Dante Mckenzie 

Brent Rutledge, Gabriel Tedder, Sam Elter

A Dunbar, Valerie Wieners Massie, Tracy Stimpson

Kelly Bunch, Oscar Pecina, Jayne Warbinton 

Ada Goren, Corrie Weaver, Betsy McCarren

Lauren Blevins, Kristin Thomson, Valbona B 

Carley Jolley, Christina Knickle, Jim Ciesielski  

Wanda Curley, Laura Wayland, Michael Young,

Jenni Carowan, Robert Cline, 3 anonymous donations

If you would like to contribute, click on this link Luke's GoFundMe

-The Crawford Family