Never Accept an Insurance Denial

I still recall how frustrated I was when our insurance company denied speech therapy for Teddy. At that time, he was 15-months old and completely non-verbal. He lacked the ability to attend to toys and honestly interact much with people including making eye contact and tracking motions. His speech scores were the lowest of all his test scores, with many of his skills in the 0-3 month range. That's tough for a parent to hear, although we obviously knew he wasn't going to score well.

Even tougher was hearing that the insurance company didn't feel it was necessary for him. At first, I was downright mad. Many an inappropriate word left my mouth, and it was very difficult not to write an appeal based on emotion. Instead, I did what research I could and wrote an appeal based on as many factual aspects as possible, which was a bit difficult without a true diagnosis for Teddy. This was the appeal: 

Dear Sir or Madam:

My son, Theodore Blondheim, is a 15-month-old boy who has been diagnosed with hypotonia by his pediatric neurologist. To remediate this condition, Theodore has been receiving occupational therapy and physical therapy and has met several of his therapeutic goals in these areas within the past two months. All concerned believe continued therapy is crucial to overcome this condition.

Humana denied a request to begin speech therapy for Theodore beginning September 11, 2014. The denial was issued because therapy was deemed a non-medically necessary service to address learning disabilities.

Theodore’s hypotonia affects the muscles throughout his body and is not restricted to his trunk. His hypotonia affects his oral motor musculature. A child with hypotonia, “lacks head and chest control and exhibits low tone in the face and mouth. Sucking, chewing and swallowing are difficult for these infants and toddlers. Drooling food and saliva from the mouth is common and may persist in the school age child,” according to “Early recognition and intervention is the key to recovery for Benign Congenital Hypotonia” by Shannon Munro Cohen, RNC, BSN and Teresa Whitt, Ph.D.

Theodore has demonstrated constant drooling, unassociated with periods of teething. With the assistance of his occupational therapy, Theodore has learned the motions of bringing a sippy cup to his mouth to drink. However, Theodore is unable to properly swallow liquids from sippy cups without soiling his shirt within a few sips as he lacks the muscle control to appropriately drink from a sippy cup. When Theodore wears a pocket bib, the entire pocket of the bib is filled with the liquid within 5 minutes of attempting to drink.

Hypotonia is not a developmental disorder or childhood delay. If left untreated, my son will not properly develop meaningful speech or coordinated motor abilities related consumption of food and beverages. Lack of meaningful speech and these motor abilities would result directly in a deterioration of my son’s health and safety, in that he will not be able to communicate medical needs and will be unable to function in daily life skills involving eating and drinking that are directly related to his health and wellbeing. 

Speech therapy is among the least expensive and least invasive form of treatment accepted by the medical community and is not implemented for the convenience of the child or therapist.

Since hypotonia is a medical condition and not a developmental delay or disorder, and since speech and therapy is medically necessary, we are asking for three months of speech therapy followed by a reevalution.

Thank you for your assistance. 

Within a month or so, the initial decision was reversed, and we were into speech therapy with an awesome pediatric speech therapist. Teddy has benefited so much from this therapy, and we were so happy to get it approved for him. (Unfortunately, at the time I'm writing this post, we're waiting yet again for re authorization of speech therapy.)

That wasn't the only appeal we had to write. He was denied for genetic testing to test a specific gene related to seizures. As much as the speech therapy denial upset me, I was livid with this one because he had two seizures within two days of receiving the denial. Once again, I tried to appeal with reason instead of emotion, and this was the appeal:

Dear Sir or Madam:

My son, Theodore Blondheim, is a 16-month-old boy who is currently diagnosed with febrile seizures by his pediatric neurologist. However, Theodore’s seizures do not follow the typical pattern of febrile seizures, which is why Theodore was referred for genetic testing and consultation. Theodore has had five separate seizure episodes, two of which involved multiple seizures, with the most recent episode occurring November 16, 2014. According to the National Institute of Neurological Disorders and Stroke, “The majority of children with febrile seizures have rectal temperatures greater than 102 degrees Fahrenheit.” In only one instance did Theodore’s temperature exceed 102 degrees Fahrenheit, and in two instances his temperature was below 100 degrees Fahrenheit.

Humana denied a request for SCN1A sequencing genetic testing November 14, 2014. The denial was issued because this testing was deemed a non-medically necessary service. The specific reason cited in the phone call I received November 14, 2014 was the results of this SCN1A sequencing genetic testing would not alter the treatment or care of Theodore’s condition. 

Theodore’s geneticist, Dr. Gunter Scharer, indicated the SCN1A sequencing genetic testing could alter the course of Theodore’s treatment, specifically providing a list of potential medications to avoid to prevent significant negative reactions. This is supported by the National Center for Biotechnology Information (NCBI), which states individuals with SCN1A-related seizure disorders should avoid “AEDs: carbamazepine, lamotrigine, and vigabatrin, which can induce or increase myoclonic seizures; phenytoin, which can induce choreoathetosis.”

Additionally, the NCBI states, “Use of the ketogenic diet to decrease seizure frequency has been beneficial in some affected individuals.” This means the results of this SCN1A sequencing genetic testing could, in fact, result in a course of treatment that is among the least expensive and least invasive accepted by the medical community.

It is apparent Theodore’s seizures are still a significant medical concern given that he unfortunately had another seizure two days after Humana issued the denial regarding this request. Since the results of the SCN1A sequencing genetic testing could significantly alter the course of Theodore’s medical care; AND alternative laboratory or clinical tests to definitively diagnosis the genetic disorder are unavailable; AND the SCN1A sequencing genetic testing is a clinically valid test, based on published peer-reviewed medical literature; AND Theodore has not previously received this genetic testing; AND the testing panel is for a specific gene deemed medically necessary to establish a diagnosis, we are asking for approval of this specific test.

Thank you for your assistance. 

Again, thankfully, we were successful with the appeal. Although we didn't learn a diagnosis from this particular genetic test, we were then able to move onto the next level of testing. That next level of genetic exome sequencing was the test that gave us a diagnosis after nearly 2 years of searching.

I wanted to share these appeal for two reasons: 

1. First and foremost, don't give up hope if you receive a denial for services. Don't let an insurance company decide what is best for your child or loved one. Get mad, but then do something about it. There are processes within every insurance company to appeal. And there are, at least in Wisconsin, processes to appeal the insurance company's decision if their internal process doesn't yield a favorable result.
2. By no means am I an expert after writing two appeals, but I'm more than happy to help others with this if they cannot find the support they need from their treatment team. I wanted to share the specific language I used to give others an idea of what worked for us and the general format we used. I would give credit to the original place online where I found an appeal to model ours after, but I don't recall what it is.

Happy 1st Birthday!

My husband and I place a high value on vacations. Our ideal vacations include hiking, camping and exploring our country's national parks. They don't fit the typical mold of a nice, relaxing vacation, particularly when you add a couple toddlers to the mix. I'll admit that adding children to the mix greatly shortens our hikes, diminishes the amount of sleep we get and results in a few more stressful moments. The way I look at it, though, is that we'd still lose sleep and have a few stressful moments if we were at home, so I'd much rather be exploring our country with them and sharing the new experiences with them.

What a gorgeous place to celebrate being 1!

That explains why the day before Teddy's first birthday we were driving to Crater Lake National Park in Oregon. It was a fairly long day of driving, and Teddy was beyond done with it. The problem was we still had a long hour left to get to our campground, which involved non-stop screaming regardless of our attempts to entertain him. By the time we got to the camp site, we were all a bit frazzled, except Teddy who was as happy as could be to be out the captivity of his carseat.

My husband and I went to bed stressed, not helped by the fact that Teddy was a bugger to get to sleep. Then he proceeded to spend much of the night awake and crying, keeping both of us awake. So when we awoke, far too early for our liking, on his birthday, we weren't exactly the most fond of him at that moment. To be honest, we were both wondering why things always had to be so hard with Teddy and why life couldn't be a bit easier. Don't get me wrong, we certainly expect some crying and stress when traveling more than 6,000 miles with a 1- and 3-year old, but we certainly felt the stress that day.

Oddly enough, after not sleeping all night, Teddy napped while we hiked.

Still, we only had so much time to explore that park, so that's what we did. We strapped both boys into our backpack carriers and headed down the only path to Crater Lake. It wasn't a secluded hike by any means, but we really enjoyed ourselves on the hike down knowing full well the hike back up was all uphill. When we got to the rocky lakeshore with the sun shining, our smiles became genuine and our laughter real as we splashed the boys with water and dunked their heads. We forgot about the lack of sleep and the struggles of the past day and simply enjoyed the moment. Although we couldn't take the boat tour to Wizard Island because our children were too young, that hike was absolutely what we needed.

When we got back to camp, Teddy surprised us while we were getting supper ready. We had left him in the tent to play (and keep him safely out of trouble). When we peered in to check on him, we discovered him sitting up. This was the first time ever that Teddy managed to get into a sitting position all by himself! What a milestone to hit on his first birthday.

Some gourmet spaghettios for birthday supper.

We rounded out the day with cake to celebrate his first birthday and went to bed exhausted but much happier than 24 hours earlier.

Cake face!

Happy New Year! (First Seizure Episodes)

This day will remain forever etched in our minds.

The holiday season had been filled with sickness for us: stomach flu for most of us and extended family, colds for most of us, 3 cases of pink eye and a strained back (due to vomiting with the stomach flu). We actually came home from celebrating with Dave's family a day early because we just wanted to recover for a day.

After eating lunch, I was holding Teddy while Dave and AJ finished eating. Teddy suddenly went limp and started shaking. I looked at Dave and we were confused as to what was happening. As it continued, we thought it was a seizure but had never experienced one. We called the nurse call line for our insurance to see what to do and were instructed to call 911.

We prepped AJ for the paramedics by telling him some special friends were coming to check on Teddy. When the paramedics arrived, they checked out Teddy, who was mostly back to normal. Since all his vitals were fine, they said we could transport him ourselves.

We headed to the ER with AJ in tow. Dave's folks headed down to pick up AJ, and my mom began the 2.25 hour drive to our place as well. While at the ER, Teddy was kind enough to have another seizure, so we weren't the only ones to witness it.

After scary hours, including debates of whether to send us via ambulance to Children's Hospital in Milwaukee, we were released with a diagnosis of febrile seizures as he had a fever of 100.8°F. The diagnosis didn't quite fit because they typically don't occur until a child is at least 6 months, but we left with the hope that this would be the only time it occurred and a referral to a pediatric neurologist.


And this is the start of us realizing how unique Teddy was ... although this was the tip of the iceberg.