Devastated.....
Because Hannah is not 12 years old, VNS appeal is upheld. They did not even read all the documentation. I am sure of it. She is not 12 = not approved. Who cares that she is a little girl with seizures that are completely out of control and this is our last hope.
And I quote: "Documentation submitted with you request for appeal, other available supporting information and the original denial information were presented to a second physician reviewer. The second physician reviewer's comments were " Converage is requested for implantation of vagus nerve stimulator for the treatment of refractory complex partial seizures in a 9 y/o BOY. Although there is substantial clinical evidence supporting the use of VNS for refractory epilepsy in children the VNS is FDA approved for adolescents and adults only.....This is NOT a covered benefit for TRI CARE beneficiaries under the age of 12. This denial is therefore upheld."
Well, gosh, I guess we will just wait until she is 12....
(the reason it is labeled for 12 year olds and older is because that is the youngest that was in the study. VNS's are implanted in 2 year olds!)
Great, huh??? They don't even have her gender right. I am sure they didn't even read through ANY or ALL of the pages and pages of Hannah's history... They don't care.
(BTW, the first physcian reviewer also said she was a 9 year old boy. hmmmm???)
As my rant continues...May I please remind you, this is the US ARMY's insurance. Yes, that would be the same ARMY that took my husband away from his family for over a year now....To fight in a war that my husband and all of the soldier's in Iraq are committed to winning (that's another story, for another blog, I guess).
SO....what do we do now???? I am not really sure. This lovely 6 page denial letter says that we can now send a request to the Appeals and Hearings Division, within 60 days of course. Because they really hurry all of their responses to major medical issues.... I am going to look into other options on Monday. I may even talk to a lawyer friend of ours.....
I called TRI CARE yesterday (before I received this letter, but was obviously already decided and sent out). "Is there anyway we can expedite this appeal?? My daughter's situation is quickly becoming an emergency. She is having seizures every day, sometimes multiple times a day. We are using rescue medications EVERY day, sometimes multiple times a day...."
lady on the phone" Oh my, let me write all that down and quickly send that to the department that is reviewing her case." yeah, whatever. Your computer probably told you while I was on the phone with you it was not approved. AHHHH!!!! I am so frustrated. Hannah had 15 seizures in the last 7 days; some of which were whoppers, lasting for hours. We have no ides why the increase.... Maybe Monday's EEG will shed some light. I sure hope so.
Meanwhile.... I have to put on my brave face, take my family to the airport in the morning, and watch my husband load a plane to go to the other side of the world. again.
Saturday, September 26, 2009
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Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
1 comment:
Marcia, I know tomorrow is going to be very difficult for all of you, please know that I'm am thinking of you. You have a very full plate right now, please let me know what I can do to help.
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