The Good, The Bad, and The Expensive

We were told, and continue to believe that we are very fortunate to have a diagnosis at such an early age for our son. However, as Dr. Russell said this morning while on the phone with him...yet again...it is unfortunate too. There aren't too many three year olds running around demanding 6 full meals a day with 5 8oz. glasses of milk, juice or water! It's such a tough age without any dietary restrictions.

So, the good is that we have a diagnosis and he seems to be improving in both his belly shape, and his bowel movements. The bad is that he is barely eating what he needs to maintain his weight, not gain. And, it's almost impossible to get him to eat what is needed nevermind what has been fotified without causing some sort of eating disorder that years of therapy will have to correct!

That leaves the expensive...enter the insurance company. You know the one that we already pay more than we should for, whose deductibles and copays went up as of January 1st, and their list of what they do and don't cover seems to be expanding every day. Especially the don't. For instance this Duocal that we have to fortify every beverage with for Ethan. We have been running cirlces with the pharmacy, doctors office and the insurance to try to get this product covered as it is very expensive. Well, the pharmacy won't order it until they know the insurance will cover it because it is too expensive and not prescribed often enough to warrant having it sit on their shelves. The doctors office was contacted and sent not only the pharmacy but also the insurance company a medical neccesity note stating the our child NEEDS to have this medicine to help provide nutrients he isn't getting. Upon calling the insurance company, they said they haven't received any such approval, and need to have the doctors office contact them so they can make sure my son falls into the criteria that warrants his need for this medicine. Since when did they get their medical license??

So, I called the doctors office this morning and spoke with Dr. Russell who said that it is noted in Ethan's chart that the insurance company WAS contacted and given necessary approval. According to the doc. NH insurance companies don't see the medical necessity in prescribing nutritional supplements for children. Massachusettes does. He says he's come up against this before and without saying it, sounds like we're in for a battle. According to the insurance company, because it is considered a medical supply not a prescription we will be subject to the $250 dedcutible followed by an 80/20 coverage up to $1000. So, just how much does this "medical supply" cost? No one knows!

Now, take into account that we will do what we have to in order to get our son the health care he needs, but he isn't even consuming what is necessary at this point anyway. It's been a whole different kind of battle here, one that the parents are losing. Oh the power of a 3 year old. The doc. says he will need to remain on the Duocal until he is consistently gaining weight. I'm thinking at least 12+ years, right?? :)