Danilo's Page

She' starting him on a blood pressure medication. Also, by the end of May, he will be taking 1/4 of the amount of ACTH that he was taking when he started. They are very impressed with his progress. Due to the anesthesia, we may have to postpone the CT scans on Thursday because he has a slight cold. We'll see how it goes.

April 21, 2004

Dear Health Net Appeals Officer:

I am writing to you to appeal for the payment of the attached bills. My son, Danilo, came down with a rare illness called Opsoclonus Myoclonus Syndrome (OMS) in August of 2002. He was 2 ½ when it all started. For one and a half years, he was unable to walk due to severe ataxia and due in part to the fact that he was badly misdiagnosed. When it all began, we were with Kaiser and unfortunately, the doctors at that time did not recognize his symptoms as OMS. I was told that his strange eye movements were “part of the ataxia.” I was also told that his condition was a temporary one that would resolve on its own. However, it did not.

When we switched over to Health Net in January of 2003, I immediately picked a pediatrician – any pediatrician. I just wanted to get my son referred to see a neurologist as soon as possible. He started seeing Dr. Nancy Niparko in late January of 2003 and she started working on his case. Many tests were done and, to make a long story short, he was misdiagnosed with retinitis pigmentosa and mitochondrial myopathy. Nearly a year passed during which my son could not walk. Imagine a child who was born perfectly normal, who could walk and then, all of a sudden, he can’t. He had no balance whatsoever and he was in constant danger of falling and hurting himself badly. With the help of my family and some research, around July of last year, I started to realize that Dr. Niparko was going in the wrong direction, although she wouldn’t admit it. We found out that there are two OMS specialists in the United States – Dr. Michael Pranzatelli in Springfield, Illinois and Dr. Wendy Mitchell here in Los Angeles. My sister wrote to Dr. Pranzatelli and I wrote to Dr. Mitchell. We got an appointment with Pranzatelli in January of this year.

Let me stress something here – MY SON COULD NOT WALK, his hands trembled, his speech was slurred. Given the various misdiagnoses, the difficulty of making appointments with specialists, and the severity of my son’s condition which had gone untreated for 16 months, it was imperative that he be correctly diagnosed and treated as soon as possible. Further delays in getting treatment could have caused Danilo permanent brain damage and further developmental delay.

I was desperate to see either Dr. Pranzatelli or Dr. Mitchell, We got the appointment with Dr. Pranzatelli first and made arrangements to travel to Illinois. Prior to this visit, Dr. Pranzatelli’s office provided me with information and published reports on Opsoclonus Myclonus—most notably information on other cases that, like my son’s, had been misdiagnosed. Dr. Niparko refused to consider OMS as a possibility in Danilo’s case. Two days before we were scheduled to go to Illinois, I went to her office and asked her to fax a letter to my insurance company to help me with the authorization, but she did not do me the favor. Dr. Pranzatelli wrote a letter in which he explains his unique procedures and how they are applicable to my son. I am attaching a copy to this letter.

Subsequently, we got an appointment with Dr. Mitchell in February. Normally, appointments with Dr. Mitchell are a 6-9 month wait, but she made an exception for us. Of course, I preferred to see a doctor in Los Angeles where we live. But Dr. Niparko had earlier indicated that she had trained under Dr. Mitchell and that Mitchell would not be open to the diagnosis of Opsoclonus Myclonus. Therefore, I was not completely confident that Mitchell would take the right approach. However, thankfully, at the very first meeting, Dr. Mitchell prescribed ACTH and my son started walking within days after inception!! If we had not gone on to see Dr. Mitchell, Danilo would have been treated in the same way by Dr. Pranzatelli.
Had I not done my own research, traveled to Illinois at personal time and expense, and finally pushed through an appointment with Dr. Mitchell, the cost of my son’s care—including expensive tests that were proposed and the treatment of possible injuries and ill health resulting from his condition—would ultimately have been much higher.

I implore you to pay these bills for my son. I do not think it is an outrageous request. I think it is outrageous that IF I had not taken matters into my own hands and taken my son to Illinois, HealthNet and many other organizations in time would have been paying many, many times more over the course of a lifetime than this small amount which I am asking you to pay for now.

In the two months that Danilo has been taking ACTH, he can walk, he can run, he is potty trained now, he can hold a cup to his mouth without spilling, he can ride a bike, he speaks more understandably and he continues to get better every single day. A year and a half of my son’s life was robbed by the health care system. In fact, I consider it malpractice for it has greatly affected his normal development. However, at this point, I am happy to see him recover, but it could have gone on much longer. And how much would that have cost?



Sincerely,



Gabrielle Mittelbach

Checking for neuroblastoma once again.

We saw the ophthalmologist yesterday. She said Danilo is a poster child for amblyopia. The vision in his lazy eye has really improved. The surgery will be cutting a muscle or two in the eye and reattaching them so that they are more taut (or something like that).

Still waiting for CT scans although the authorization went through.
Potty training is going quite well.
He's not as ravenous as he was a week ago, but he still craves meat all the time.