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Jacob's Story: Diagnosis and Treatment in TRICARE

4-11_Sorell_Family_2.jpgIn honor of Month of the Military Child, learn how military families like the Sorells pursue care for their son, Jacob, who has a complex medical condition.

I will never forget the panic stricken moment in 2014 when my youngest child had spasms that presented as full-body ‘jack knife’ motions. We rushed to the closest military treatment facility just outside of Washington, DC. It was the week before the Army planned to draw up orders for my husband to deploy overseas. Up until that point, our children rarely if ever went to a doctor — like most families, our experience with military physicians and staff was limited to acute illnesses and typical well-child visits.

Although the on-base emergency room was not adequately staffed on a weekend to deal with his spasms, we were able to schedule an appointment the following Monday. Jacob went into continual seizures on the floor in the waiting room and was immediately admitted to the hospital while awaiting his first of many visits with the pediatric neurologist. Our neurologist sat down with my husband and me and delivered the news — it was a rare form of epilepsy. He went on to explain that it causes catastrophic brain damage.

While our neurologist gave us the choice between three medications, he told us that because we are insured through the military’s TRICARE Prime, we could choose the featured gold standard medication which retails at $6,000 per day. Jacob would need to be on a high dose of this medication to stop his spasms and prevent further brain damage. We were in shock, but so grateful that this option was available to us without co-pay. After about an hour, the prior authorization went through. On Day 15, the brain spasms stopped completely, but the aftermath of the brain damage is something that will affect us the rest of our lives.

Since our journey to the world of complex medical care began, we have sought sub-specialty care on a military base, but also second opinions at civilian care centers like John Hopkins Children’s Center, Children’s National Health System, and The National Institutes of Health (NIH). For physical and occupational therapy, speech, and vision services we have been tremendously blessed to work alongside Montgomery County Public Schools in our area.

4-11_Sorell_Family_1.jpgOur son does not have a conclusive underlying genetic condition that is usually present with infantile spasms. Since Walter Reed National Military Medical Center exhausted its testing and expertise, the staff has always been willing to write letters of recommendation to get another opinion. In November 2016, our son had a comprehensive work-up at the NIH’s Undiagnosed Disease Network. At this point, we have seen the best providers for his complex medical needs in the nation, and NIH will continually re-analyze Jacob’s genome blood samples searching for new genetic variations or errors.

The best news of all in our journey came from NIH at the end of the work-up, when they encouraged us to get a referral from TRICARE to Kennedy Krieger’s month-long program that included all day physical therapy, occupational therapy, and speech. For the first time ever, Jacob was able to use a gait trainer to help him learn to ‘walk’ with assistance.

I learned a few key steps to navigating TRICARE services that I’d like to share with other families like ours:

  • Request the same doctors to aid in continuity of care, frequent communication, and your ability to advocate for your child along the way. Parents become the experts on their child, and mature seasoned providers are humble enough to listen and allow you to have some control over an unpredictable journey. For the most part, we have had fantastic professional relationships with Jacob’s team.
  • Request a good nurse case manager who can reach out to your primary care doctor for referrals. They can make multiple appointments for you on the same day and recode insurance referrals to get your child the necessary medical equipment. They are a crucial team player between you and the large number of medical providers you may have. They are even the angels who wait on hold — sometimes for quite a long time — to make sure TRICARE fixes any referral issues. We work as a team and collaborate on how to best serve our little man.
  • Keep a copy of your medical records. Carry the most updated, complete history with a list of medications and providers names with you. I also recommend keeping a copy of your most recent Individualized Education Plan (IEP). Until recently, I had no idea how important IEPs are to determining if a location can or cannot support a medically complex child’s Medical needs are half of the picture, but the educational component is just as imperative to communicate and paint a clear picture of your family’s needs. Be pleasant in your interactions during IEP meetings, but never sign paperwork or agree to something unless you understand — never settle for less.

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