Showing posts with label Intestinal Neuronal Dysplasia. Show all posts
Showing posts with label Intestinal Neuronal Dysplasia. Show all posts

Friday, August 21, 2009

Health Insurance Rant

Allow me to vent some frustration about health insurance. My very healthy son just got turned down for insurance. He has a very mild case of Intestinal Neuronal Dysplasia. For this the insurance underwriter has said he will never be insured –not only for the IND but for any medical care ever.

I could understand this if he had a severe case of cerebral palsy and his care would certainly cost many thousands a year. But this is a healthy toddler who hasn't had a single symptom or treatment for over a year. We stopped treatments when he was 2 months old. When he did need treatments they were only tap water enemas that cost essentially nothing. His physician says that he will likely live his entire life without a another problem. I am a doctor as well. I reviewed every study published on IND and I am certain my son has the mildest form of the condition.

An underwriter probably saw “Intestinal Neuronal Dysplasia” on the application. It is too rare to have good statistical predictions of its risks. He probably googled it and saw it is genetic and can cause problems in severe cases and denied my son flat out. Ignorance caused them to reject a very healthy child that will likely cost not a penny more than any other child. I offered to speak to the underwriter and explain his situation, but the phone operator told me underwriters don't talk consumers.

My son won't be able to purchase insurance his whole life for a diagnosis that hasn't given him trouble since he was two months old. I can never have a private practice, because I will always have to work for an employer that offers group coverage the rest of my career. If my young, healthy family with no active medical problems cannot get insurance, families with sick individuals shouldn't even try.

I care a lot about healthcare. I have worked hard for years to ensure the care I give is affordable for patients. I have given high-quality low-cost care to hundreds of people insured by this very insurance company. For them to reject my healthy son out of what appears to be ignorance feels like a slap in the face. No wonder so many Americans are eager to bring down the insurance industry!

Sunday, August 10, 2008

Update on Baby Boy's Health

Sorry it has been a while since we updated everyone on TMD's bowel condition. Actually we still don't know exactly what happened with his colon. It may be Intestinal Neuronal Dysplasia although we aren't sure, BUT the good news is that he doing so well that we have stopped treatments all together.

No need to keep working up a bowel abnormality in a baby who is growing well and seems so happy. Right now he is in the 90th Percentile on weight and length so for now we are just going to watch and wait. We always have a really good pediatric surgeon who knows him well, so if problems do come up we will be ready. Hopefully the whole thing was an anomaly that resolved on its own. We will let you know if more happens but hopefully the good news will be no news at all and we won't have to worry about TMD's bowels agian.

Wednesday, July 9, 2008

Update on the Biopsy

News on TMD's biopsy from last Thursday:

The biopsy showed nerve cells which means it is not Hirschsprung's Disease. At least at this point surgeon and pathologist are saying that it may be Intestinal Neuronal Dysplasia, which is similar to Hirschsprung's. This is an even more rare condition than Hirschsprung's so I didn't know much about it. The good news is that at least for now TMD won't need surgery. The bad news is that unlike Hirschprungs this can be treated but not cured. Apparently the seriousness of Intestinal Neuronal Dysplasia runs the spectrum from severe to mild.

We are going back to Augusta next week to see his doctors and discuss this so hopefully we will have more information then. The good news is the our little man continues to grow beautifully and seems happy and well (asside from the occassional fussiness that is common to all babies). He is 7 weeks old today and we are loving the little personality he is developing. Hopefully we'll have more pictures up soon.