After two years worth of failed medications, failed CBD oil, hospitalizations, IVIg infusion treatments, countless seizures, and still no answers to what suddenly starting causing Steele's intractable seizures, the family is beginning to feel that there may be no end in sight. Given Steele's presentation, there is still a continued strong medical opinion that there is an underlying cause, so there is still hope that an answer will be found. A trip in December 2018 to the Mayo Clinic supported that there could be an unidentifiable autoimmune component in play but the neuroimmunologist could not say for sure. A completed Whole Exome genetic panel in Nombember 2019 revealed no genetic cause for Steele’s seizures. The financial pressure is now beginning to be felt with snowballing medical expenses on top of "life" expenses. Please consider any amount to help alleviate the surmounting costs of Steele's battle. Your support will help to offset expenses of items such as: travel to various medical facilities, hotel accommodations when needed, meals while hospitalized, out-of-pocket medical expenses (medical copays, medications, holistic healing, treatments, and supplements, entering another year of medical deductible & out-of-pocket max), vehicle wear and tear from continuous back and forth travel to Seattle Childrens and reduced income.
October 18th, 2017 He was just a normal 7 year old boy, enjoying the glory of his first season as a football player. No illnesses, no head trauma...nothing...
...Then October 19th, 2017 Steele went to school just a normal healthy kiddo - and that morning, just like all mornings before going out the door to school, Mom said “I love you, have a great day! See you later!” Not for one single moment did it ever cross her mind that in a matter of hours, life would be changed forever.
At 2:45PM that afternoon the school called Keeley (mom) to inform her that Steele was having a grand mal (Tonic Clonic) seizure at school. An ambulance had been called, and she drove as quickly as she could to meet them at the school. After a CT was performed and shown to be "clear", the hospital discharged them saying it was a mild concussion, hoped the seizure was an isolated event; never to be seen or heard from again - Whew! What a sigh of relief…until 4 days later, while playing upstairs with his friend, it happened all over again. That evening was the one that sent the Wagners down a path of uncertainty and for the last year, every single day has been unpredictable; with some great days, there have also been many heartbreaking and soul crushing days from the agony of wanting to take this away from him each time he has a tonic-clonic seizure. Everyone feels so helpless.
Fast forward to TODAY.
In two years Steele has endured 1000’s of grand mal seizures, has been unsuccessful with CBD, failed 3 different rescue medications, failed multiple at-home daily medications, been hospitalized as in-patient and countless trips to the ED more times than one can count. He has been life-flighted five times, undergone 2 Head CT, 8 MRI’s, 14 EEGs, 3 Lumbar Punctures, 3 Paraneoplastics Panels, 1 Autoimmune Epilepsy Panel, 1 CT of Abdomen, Chest, and Pelvis, Ultrasound of his testes, various lab testing, and 7 6-hour IVIg infusions for suspected autoimmune encephalopathy with nasty side-effects …still with the only answers being - we know what this IS NOT. We know it’s SOMEthing. There is something there that is either unprecedented or so rare that doctors have not pinpointed it yet - five highly respected neurologist/epileptologists have affirmed they what they see in Steele is atypical of a textbook Epilepsy patient. Steele will go a small amount of time with being ok, and then suddenly have back-to-back-to-back clusters of Tonic Clonic seizures without returning to baseline, all while his medications are showing to be at therapeutic levels. This results in ED visits where they have to administer IV rescue medication, Fosphenytoin which has proven to be the only one that helps him. There is suspicion of Steele’s seizure disorder being autoimmune related, but with this type of autoimmunity being so NEWLY researched, there is still a lot that the specialists don’t know that they do not know yet. The Mayo Clinic is leading and developing the research forAutoimmune Epilepsy, and there is yet so much more to discover - after a visit to the Mayo Clinic couldn’t conclusively say that it was or was not autoimmune, we are exploring their established IVIg protocol to see how it goes. After trying modified keto for 15 months without seizure control we are left grasping for straws. Another avenue we are exploring is reducing Steele’s EMF exposures as this seems to be something that triggers his seizure activity. Putting safe measures for protection in place also comes at a costly expense, all of which are out of pocket.
The Wagners have been so blessed by #SteelesArmy of angels. They have experienced the Love of the Lord through so many caring and generous friends and strangers; sisters and brothers in Christ. There has been a Zumbathon, merchandise fundraisers, D’s Wicked Cider fundraisers, donations, meals, gifts, and more! It has been truly humbling to see how far the ripple of love for Steele and for their family travels. They have been so fortunate that, within the first several months of this “stormy season” of their lives, the burden of any financial cost of being hospitalized has been shouldered through the generosity of others, almost to the cent. Going forward, knowing that another approaching “Insurance year” brings a new deductible, new out-of-pocket with further testing and hospital visits, compounded on top of travel, and expenses associated - they are definitely feeling some financial pressure while trying to also stay on top of other life and household expenses. Without seeing an end in sight at this point, the continued generosity of your support will help to bring some relief to the ongoing medical expenses that they don't see an end to right now.
You can read updates from Steele's caring bridge site from his first long-stay hospitalization in March with updates to May 2018: HERE
you can also follow his @steelesarmy Facebook page for current updates
Steele's first Hospitalization in March 2018 left him unable to speak, unable to walk, and very poor memory recall.
Relearning how to walkEEG Time
Steele's second hospitalization in April - getting ready to go in for MRI #4
After being released from hospital in April 2018, following an experimental IVIg infusion, the night we arrived home after a 5-day inpatient hospital stay, Steele developed nausea and vomiting which brought on 19 more tonic clonic (grand mal) seizures - fortunately they stopped before the need to return to hospital.
June 25th ~ Back in the Hospital for Rescue IV meds
July 6th - Life Flight Network preparing to transport Steele from Richland to Portland....back to Doernbecher.
July 11th....One week later, life flight trip #2, back to Doernbecher...again.
IVIg infusion - this is a $7,500 bag of liquid GOLD, and last time bought Steele 35 days of seizure freedom.
A couple weeks after being discharged in July, Steele was able to attend his teams final baseball tournament where they presented him with a Custom Made wooden Devo Baseball Bat, carved with his name and signed by the entire team.
August 9th - Back to Doernbecher Children's hospital for the newly "routine monthly" IVIg infusions to treat suspected autoimmune epilepsy. July's infusion bought him 33 days with only 2 breakthrough seizures.
September's IVIg infusion
Sept 16 - back to Kadlec ED where we needed rescue IV Fosphytoin. Seizures seem to be coming back with a vengeance. Steele proceeded to have severe hallucination for 3 days after this trip. One September 22nd, he ended up back in the Kadlec ED again for increased, uncontrolled seizure frequency. The IVIg seems to have stopped working.
Monday October 1st - 5th, back in at Doernbecher Children's hospital for further testing..... Abnormal EEG, Awaiting results from Lumbar Puncture that is being sent off the Mayo Clinic. It will be about a month before the results are in.
Keep him in your prayers!
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