2019- Year in Review

Every year in late December, I prayerfully consider my one word for the upcoming year. My word for 2019 was Healing. It was something that was elusive, but I was determined to cling to. We came out of 2018 broken and beat down. In 2018, Scott had two surgeries and was out of work for 15 weeks between the two. Luke developed an onset of PANDAS in March 2018 that began a downward spiral of his health and subsequently...our lives and sanity suffered tremendously.                                                                                                                                                                                                                                          2019 was one the hardest year of our lives in so many ways. In January, my dad, Luke and I flew to Ohio for appts with a medical specialist there. We were determined to get Luke the help he needed, but it wasn't a good fit.

Luke continued to worsen and we trudged on with his local pediatrician and neurologist in SC trying to find successful treatment.

In April, I was blessed to go on a Rodan and Fields award trip to Cabo, Mexico with my friend Danielle. It was a fantastic time of respite and fun for me that I will never forget!

Summer came and went. Luke and I stayed home while the rest of the family spent a week at the beach. He was sick often, as well as violent towards others and destructive with property. Between Luke's new skin infections and suffering from a grand mal seizure, he was seen 3 times at the Pediatric Emergency Department. We were at our lowest point. IVIG had been denied by our insurance. Clinics in Arizona and at Duke declined seeing Luke. Life looked bleak. We were emotionally, physically, and financially defeated.

 Then September came and the sun began to come out. Life was still super challenging but the IVIG was approved on appeal. Our insurance company coordinated a visit to The Mayo Clinic in Rochester, Minnesota in October. Rachael, our oldest daughter, coordinated a GoFundMe to help with Luke's medical expenses. We were blessed to receive enough to cover our out of pocket for 3 months of IVIG therapy and 3 airplane tickets to Minnesota!

 Although the trip was very stressful and not what we expected, important medical tests were done. Luke had two EEGs and a lumbar puncture, which ruled out Autoimmune Encephalitis. For that, we are grateful .

The week before Luke's first round of  IVIG infusions was filled with prayer and anticipation. November 15th and 16th were finally here! God blessed us with an incredible male nurse to work with Luke. We are so thankful God orchestrated for Kyle to be with us monthly for these infusions.

 Remember my word for 2019? Healing began after Luke's first IVIG infusion. We saw a remarkable improvement that first month. Violence and aggression were gone. Our happy Luke was back! He felt better and it showed-both at school and at home.

The kids and I were able to travel and spend a few days with family at Thanksgiving. A month earlier, I never would have believed this was possible.

 December came and we were able to decorate for Christmas and put the furniture back in Luke's room without fear of him damaging things. We went on a few outings, baked cookies, and other Christmas traditions.

 


We are able to breathe again. Luke will have at least 6 series of monthly IVIG infusions. His next dates are January 10th and 11th.

2019 has been one of the most challenging and turbulent years. Yet through it all God has been faithful and joy has been there too! We may be bruised from the battle, but we are still standing. And we are seeing Healing. For the village that has stood with us, in prayer and through financial gifts, we are humbled and ask God to bless each of you for taking part in our miracle. May God be glorified in the midst of our messy lives!

-Jo Anna

You can read more about Luke's story here Luke's GoFundMe

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

Would you commit to pray for Luke for 7 days?

Luke’s IVIG infusions are scheduled for this coming Friday and Saturday.

Would you commit to pray for Luke for 7 days?

Sun 11/10: For PEACE in our home

Mon 11/11: For Luke’s anxiety and fear to be minimal during the infusions

Tues 11/12: For Luke to be compliant and do what is asked of him during infusions and for him to not rip IV out.

Wed 11/13: For Luke to show no aggression or violence

Thur 11/14: For an important IEP meeting for Luke at school and telephone appointment with Luke’s neurologist.

Friday 11/15: For the 2 nurses who will be here administrating the medication.

Sat 11/16: For minimal side effects and for the infusions to be successful in treating Luke’s condition.

To read more about Luke's story or to share or 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

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

Observations and lessons learned while traveling with a child with special needs

We had a quick trip to Cleveland-less than 48 hours round trip! We like our new provider, he is brilliant. Our appointment lasted about 4 hours. We have a plan in place. We have a myriad of lab tests ordered that once the results are back, will further help to guide us. Here are some nuggets I have gleaned from our trip:

1. Prayer works. I don’t mean like a genie who grants me a wish. God hears our prayers and the prayers of others on behalf of us. Our first travel day-Monday-went smoothly and I give that credit to God for answering prayer. It’s okay to ask for intercession from others! Thankful for my community of prayer warriors.

2. Special needs families live in a totally different way than “typical” families. The planning is intense. We are always hypervigilant and on high alert, attending to our child’s needs and proactively trying to intervene before things go awry. Structure and planning help things to go more smoothly.

3. There are still genuinely nice people in the world. A kind and compassionate mom we didn’t know showed me kindness on two returning flights. Luke was really struggling and I was receiving the brunt of it. To actually be SEEN and not judged was a gift. We need more people like her in the world.

4. Roll with the punches and keep your sense of humor. Be as flexible as possible. Our challenges to get through security in Cleveland was truly comical. First time I’ve ever been patted down by a female officer! Evidently, my insulin pump and Luke’s cochlear implants were a concern. Just remember that these hiccups will make for a great story one day!

5. Don’t be afraid to request help. Two of the best decisions were to ask my dad to come with us and to request wheelchair assistance from the airlines. An extra set of hands is invaluable. Having an escort and wheelchair to help us navigate a large airport and get Luke from Point A to Point B was such a lifesaver, especially when our gate was changed last minute.

6. It’s okay to grieve, but then appreciate what you have. I often miss our old life. The easy, “perfect” life. The life where we didn’t have to plan everything, the life with no meltdowns, the life without communication frustrations, the life before specialists and therapies, the life where money was abundant and life was fun. These thoughts often crop up when traveling for a medical appointment. I compare the life I am living to the life I used to live. But wake up Buttercup! Don’t miss the beauty and purpose of your current life. Others are watching. Your child needs you. Rise up. (Preaching to myself here.)

7. Brave is what you do and brave is who you are. Never forget this. There are so many unknowns and so many questions to answer. If your child isn’t getting the medical care they need or deserve, you need to look elsewhere. Yes, it’s scary. Yes, it’s expensive. But getting on that plane to see a new provider may be the very thing your child needs to begin his journey to healing.

8. Practice Gratitude. We can find many things (big and small) to be thankful for every single day. Diligently look for them. The trampoline in the doctor’s waiting area was definitely one of them!

9. Seek the advice of others. I suggest seeking advice from others who have been there done that (BTDT). The special needs moms you trust and align with in vision. The ones that are have been on the journey longer. The ones who have traveled with their special kiddos. These moms have great insight and are usually willing to share their wisdom.

10. Give yourself grace. You are doing the best you can and you are doing better than you think! You feel as though you have the weight of the world on your shoulders. But dear, it’s not for you to bare alone. Remember to practice small ways of self-care, even when traveling.

-Jo Anna