That space in between

We've been home a week. Our whirlwind trip to The Mayo Clinic consisted of  9 medical appointments, blood work, a lumbar puncture, a sleep deprived EEG and a 24 hour EEG in a short period of 4 days.

We are incredibly thankful for so many people who were praying for us! Unfortunately, Luke experienced a relapse of a virus that he regularly comes down with while we were in Minnesota. This caused his behaviors to run even more intense. His anxiety and OCD symptoms were also more prevalent due to the stressful situation.

Right now we are in a holding pattern with things. On Thursday, Luke was prescribed a "bandaid" medicine in the interim to hopefully provide some relief in the severity of symptoms. Unfortunately, no relief yet.

We expect all of Luke's test results to be back by the end of this week. Once they are all in, we can schedule appointments in the next week or so (with Luke's pediatrician and neurologist) to go over individual results and proceed from there. That being said,  both of Luke's EEGs were essentially normal, which is a huge praise! From the labs that have already come back, Luke does have abnormalities with his immune system and metabolism that need to be addressed.

Luke's treatment plan will still include IVIG therapy. His first infusions are scheduled on 11/15 and 11/16. They will last 5-6 hours each day. I have created a social story to help prepare him and I am praying the process will go well. We covet your prayers.

We are humbled by those who have given to Luke's GoFundMe to help with the high costs of  IVIG therapy and for our trip to The Mayo Clinic. Thank you for blessing our family by sharing, giving, and validating Luke's worth.

Medical bills will begin to roll in from Minnesota in the near future. If you would like to share, read more about Luke's story or to donate, please click here Luke's GoFundMe

-The Crawford Family

Ready...set...go....

Thankfulness and Important Prayer Requests

Our week at Mayo is almost upon us! Bags are packed and we are ready for the adventure that awaits us...

In all seriousness, the best way we can get through the challenges of this week is to laugh.

But first, we will be thankful.

A special thank you goes out to the following individuals and their families who recently donated to Luke's medical expenses and trip:

Radhika P, Debbie Dupre, Nichole Jeffrey, Miki Wilhelm, Ginnie Sedlak , Gen Reid, Linda Joye, Terese Eddy, 8 anonymous donations.

We are thankful for God's timing  and for Scott's coworkers that helped make this trip possible with despite his schedule.

We are ever so thankful for those who have been praying for our family during this difficult time.

Prayer requests:

* Safety, health, and protection during our travels and stay

*For "good' behavior by Luke out in public, at the airport, on the plane, at the medical clinic

* For a spirit of peace over Luke. (He has been very anxious lately and his obsessive-compulsive tendencies have been constant.)

*For calm, cool, and patient parents!

*For clear discernment and wisdom for the medical practitioners.

*For a clear plan of action.

*For us to be a testimony of God's goodness to everyone that we come in contact with.

*For others to seek Luke's worth and for those around us to be patient and joyful.

If you would like to read more about Luke's story or to donate, click here:Luke's GoFundMe

PANS/PANDAS Awareness Day-October 9th

On PANS/PANDAS Awareness Day, I thought I would throw out some numbers-Luke's numbers.
Since the onset of his symptoms in March 2018, Luke has seen the following doctors due to infections or symptoms of the disorder:
2 Pediatricians
3 Neurologists
1 Cardiologist
1 Urologist
1 Physician specializing in Autism
1 Psychiatrist
1 ENT Physician
1 Audiologist
1 Dermatologist
1 Allergy Specialist


That's 13 Different Doctors in 3 states in 18 months. His medical file his been reviewed by The University of Arizona and Duke University. Luke's pediatrician and I believe that both organizations dismissed Luke because of his unusual history and various, additional special needs.

During this time, Luke has suffered from numerous strep infections, ear infections, sinus infections, two confirmed cases of the flu, skin infections, and viral infections. He had one observed grand mal seizure in August 2019. His condition has waxed and waned, but he has continued to deteriorate more and more as time goes by.

Luke has had more than 120 lab tests run in the last eighteen months, primarily blood tests, but also flu and strep swabs, urine cultures, stool tests, plus an EEG and CT scan. Think on that for a moment. 

It first started out with the appearance of physical and vocal tics, as well as unexplained crying/kicking/screaming outbursts. However, during the last 18 months, Luke has experienced all of the symptoms (in some way or another) on this list, including: handwriting changes, sensitivity to light and sound, tics, anorexia, obsessions, hyperactivity, irritability, behavioral regression, urinary incontinence, aggression/rage, anxiety, and more.

This condition is believed to affect approximately 1 in 200 children. I continue to share our family's story because I believe that Awareness=Diagnosis=Treatment.
Our kids at least deserve this much.

We are thankful for the opportunity to be evaluated by The Mayo Clinic in the near future. And we are humbled by those who have continued to pray for our family and for those who have donated to Luke's medical care. It truly takes a village and this journey is not yet over.

If you would like to read more about Luke's journey or to donate, please click here: Luke's story