Medical Treatment Costs

We need your help with Tyson, our sweet and lovable Ty. Ty and his family have been battling for the last 8 months. Back in September Ty had an abrupt mental status change, one week he was walking the field as Freshman Homecoming King the next week he was a completely different person. His mental health was declining, our Ty developed symptoms of OCD, Anxiety, Depression, and Suicidal Ideation. As a family we were devastated and with Julia’s nurse background she sprung into action, he was admitted to a mental health facility and started on medication. For months Ty has been in different mental health facilities, multiple medications, outpatient therapy, IOP therapy, he has tried it all. With all these interventions however nothing became better, in fact everything has become worse.

Julia’s mother and nurses intuition decided it was time to look to medical interventions and reasons that this could be happening, it was such an abrupt change in mental health with no forewarning at all, it just didn’t make sense. Which brought them to a clinic in Creston, IA where through lab work and tests he was diagnosed with PANS i.e. Pediatric Acute Onset Neuropsychiatric Syndrome. In layman’s terms Ty has inflammation in his brain that is causing his symptoms, at some point in September he had a viral illness and instead of the virus going to his immune system, it went to his brain and is wreaking havoc.

The treatment for PANS is IVig, Intravenous Immunoglobulin Therapy, Ty needs monthly infusions. However due to the medical crisis in our country and insurance bureaucracy his treatment was denied, and each treatment cost $12,774.70 The wonderful doctors at the PANS clinic are working on appealing this decision however Ty rapidly declines every day. Tyson has regressed to the point where we cannot go to school, he has no interest anymore in his life with friends, or baseball. He now has periods of intense paranoia where he does not trust Julia and Bryan as his parents and tries to run away and has even knocked on strangers’ doors seeking help, one of his tics is punching himself in the face multiple times to the point where his entire side of his face bruised. He tried to overdose and spent time in the pediatric ICU, he has held a knife in his hand in confusion and did not realize he had it. It has got to the point where Julia and Bryan cannot leave him alone and now need babysitters for their 15 year old son.

Our family has tried to keep things private, but at this point we need help. We would like to raise money to help pay for Ty’s IVig treatment and care. We can no longer watch Tyson decline while waiting for insurance to make a decision. At some point if the treatment is approved any donation would go to help transporting Ty to his treatment, missed work for Julia and Bryan as they are now ensuring someone is with him at all times. And if you cannot afford to donate, we get it, times are tough right now, so we would love your prayers or words of encouragement.

We want our Ty that everyone knows and loves back.

Update3/29/23 Bad news today, our Dr had a peer to peer meeting with the Insurance Dr and the Insurance Dr. states they were denying the treatment because she does not understand what it is that Ty has. Also a call from the finance office and to pay cash for one treatment we need to bring $12,770.74 with us.

Update 3/30/23 When Bryan and I decided to share Ty’s story we wanted to be completely transparent with our supporters. Yesterday was a hard day. During one of Ty’s psychosis episodes when he was paranoid of us, I took him to the hospital to keep him safe from himself. At that moment his paranoia was completely towards my husband and Ty had bruising on his face from punching himself. Due to these two things I had to welcome DHS/CPS into my home yesterday evening, someone at the hospital called them. We had to show them our fridge that we had food, we had to prove to them we had beds for our children to sleep in, my other boys had to be interviewed which those of you that know us did not go well for our autistic son Carson. It was not only devastating but embarrassing and also showed us just how bad Ty needs IVIG treatment. If you can help please do.

On a happier note today Ty wanted to try school, fingers crossed he can make it all day.

Update3/31/23 Today was a rough day. Tried go to school, drove there not once but twice and he could not will himself to get out of the car. Then punched himself in the face twice. Was able to redirect him at home and watched a movie. Around 4/5 pm became really agitated over baseball pants not fitting right, had to give an anti-psychotic/sedative which normally puts him to sleep. Did not work this time so we are putting together a Lego set to keep our hands busy and our mind on a task. We were suppose to go to dinner and movie tonight, but B and the other boys went without us and that’s okay. Will try to do life again tomorrow.

⭐️Update ⭐️ 4/1/23 Good day

⭐️Update⭐️ 4/2/23 Good day.

Update 4/3/23. Could not go to school, severe depression where he can barely move, no light in his eyes.

Update 4/4/23 Only made it school till 11:45, came home obviously upset and flaring. Took most frustration out on Mom this time. Received 3rd insurance denial letter in the mail, Mom went to bed crying.

⭐️⭐️⭐️ Update 4/5/23⭐️⭐️⭐️ This morning we received a phone call at 7:30am that if we could make it to Creston by 9:30 they could squeeze Ty in for his 1st infusion. So we piled in the car and wrote our huge check and started. I can’t believe 3 of these glass bottles are worth that amount of money. We will return tomorrow for the second half of the infusion. Our fight is not over yet, Ty will need his next infusion in one month so hopefully insurance comes through

Update 4/6/23 Tyson’s body now always operates in Fight or Flight mode. Which causes his cortisol hormone to rise which causes weight gain, plus he is on steroids to help with the inflammation in his brain, which also causes weight gain. For the little bitch that was sitting behind me on the bleachers commenting on his appearance guess what he will heal and get better and your heart will always be ugly.

Update 4/14/23 After Ty’s first IVIG infusion last week we had 5 full days of our boy back, his smile returned and it felt glorious. Only to follow with 2 days of rages, paranoia, crying, hitting himself, suicidal thoughts and depression so strong he can’t move. But see this is why we need the IVIG infusion because after each one we should get increasing good days until we only have good days. However today we were crushed to find out his 2nd insurance appeal was denied, they stated we didn’t have enough proof of Ty’s illness. Next and final step will be an external review with the State of Iowa and the Insurance commissioner but at this point we probably won’t make it to Ty’s next infusion on May 3rd as we do not have another $12,771 to pay cash. Please continue to pray and if you can attend his benefit on May 27th, which will hopefully help us to his next infusion although it will be late.

Update 4/28 Devastating news today, the Iowa Insurance Commissioner upheld Blue Cross decision to deny Ty the treatment he needs. We have now exhausted all insurance appeals. I don’t know what is worse being denied initially or being denied after we seen results with the first infusion. Because man are we seeing results now, for the last two weeks we have had more good days than bad, he has made it to school, he is no longer hearing voices, he has not punched himself in the face in two weeks. We still have severe body dysmorphia, OCD and anxiety but we are seeing smiles. IVIG that you all helped us paid for, works!!! I don’t know where we go from here because we do not have another $13,000, we will have to cancel his infusion for next week. Without that infusion we are very worried/scared that Ty will be setback. We are applying for Medicaid and waivers but that could take months, years (our other son with autism was never approved until he turned 18). We won’t quit fighting but we feel very discouraged. We were told it all depends on whose desk the treatment request lands on, if they don’t understand PANS they can deny as they see fit. PANS is rare but it is real and deserves treatment to be paid for by insurance.

Update 5/3/23 We did not get the good news we were hoping for yesterday. Monday night I applied to a foundation to help pay for Ty’s IVIG infusions and we were hoping to be approved right away so we could go get his 2nd infusion that is due today. However we are not approved yet and we were unsuccessful raising enough money to pay cash again so he will not be getting his infusion this week. Without this infusion he will regress. We have already seen symptoms the last two days that he is ready for more IVIG this week. Monday we drove to school 2 times before we could get out of the car and then came home to change clothes due to his body dysmorphia. Yesterday his tics were back where he punches himself in the face multiple times and was feeling suicidal. At this point we wait until we find the funds or somehow obtain different insurance. (Which is not guaranteed)