Monday, December 8, 2008

Update on Baby Neela - The Battle Continues

Neela just had her 2 year check up and has reached the weight of 23lbs. We are so excited this was her fist major weight gain in a while. Her last appt was in Sept and she was just shy of 21 lbs. her height was also checked and she is now 32 inches. I believe that is a 1inch gain but I am not sure if she was 31 or 30 last time =(.
The battle we face now is with the insurance company. It seems that the medication in which the Endo has prescribed is not approved for IGFD patients. The Endo has sent paper after paper to show that support from the FDA but alas they are still refusing to pay for her treatment. Normally we would just go ahead and foot the bill ourselves. Well that is not the case with this condition. Growth hormone medication and the like are very very expensive. As I was explained it could start as little as $30,000 a year and go up as she grows to well over $100,000!! Military pay is not going to cover that!! We will continue to battle until they realize how important this medication will be to not only her growth but to her overall health.

More news.... Tomorrow (Tues) my other daughter Dylan will be getting testing done to rule out diabetes. As of late she has been drinking more and more water and has been extremely thirsty. Having a family history of diabetes I knew the warning signs and so far she has all the symptoms besides losing weight. I have my fingers crossed that she is just growing and needs more fluids or anything for that matter. the fun part will be trying to get her to go in a little cup for testing. Did I mention that she is only 3yrs. Oh the fun!!
Thanks for reading. I will keep you posted!


Mannie Vincent said...

Glad to see Neela has gained the weight and height (: Good luck with Dylan's testing! I know all about expensive medication and insurance not covering it. I have a form of rhumetoid arthritis and my doctor wanted me to start taking a pain killer injection once a week. The injection is a biological response modifier, so it basically just lies to my body. It was/is a newer med and not covered by insurance. It would have cost me (had I decided to do it) at least $1320 a month OUT OF POCKET. Needless to say, I am not on this medication, nor any other medication. It's all so expensive, it's crazy. Good luck to you, Amanda! ♥Mannie

Mannie Vincent said...

Hey Amanda, go to my main blog... There is an award waiting for you (: