NDI Is Normal In This Family
By Mary Evans Lee

James was born March 1990. He was adorable, but very fussy. He didn't like to drink his formula and I couldn't get him to nurse. One night while I was trying to get him to eat I watched him closely and thought he was acting as if the formula was too thick. Not knowing any better, I gave him a bottle of water. He loved it!

He would even drink his formula if it was half formula and half water. At about two weeks old, James came down with a terrible fever and couldn't keep anything down. I took him to the doctor and they put him in the hospital for a week. When they put an IV in him his fever would spike-when they took him off it would go down. Finally after a week they listed him as "failure to thrive" and sent him home.

James quickly lost weight, and dropped from the 80th to below the 30th percentile. He was a little guy but he was healthy happy and real smart. James would drink two water bottles for every formula bottle, but I figured that it was okay if I allowed him to drink the water, since then he would drink formula. Even though every doctor advised against doing this, something told me not to listen to them.

When James was 9 or 10 months old, he again suffered a terrible fever. I again took him to the doctor. This doctor was very concerned with James' weight. James had a terrible fever that day and almost passed out on the table in the examination room. Well the doctor said to run James down the block for testing at the ER and she stepped out of the room.

I went to get James' coat and heard the doctor on the phone to the ER: she suspected child neglect and asked them to detain us in the ER until the child welfare people could come. I was in shock. I dressed James in his jacket put him in the stroller and got ready to walk him the block over to the hospital. While we were walking, James downed a bottle of cold water, and the walk in the brisk autumn air brought his fever down. He was laughing and flirting with the nurses when I signed him into the ER. The ER doctor called child welfare and told them not to come-the baby was fine, the other doctor had been over reacting. The ER doctor did tell me to go home and clean my house really well, just in case child welfare decided to come for an unexpected visit. I did that and also went out and bought extra baby food so that the cupboards looked well stocked. They never showed up.

About a year later Michael was born. Within the week he had a raging fever. It was time for James to get his 18-month immunizations, so I took Mikey and James to the doctor (a new one since the other one had called child welfare). Poor James never got his shots that day. The nurse took one look at Mikey and whisked him away. The doctor on duty immediately drew blood took his temperature and blood pressure. This office was in a hospital, so they walked Mikey to the pediatric wing and admitted him. Poor Mikey was poked and prodded and hooked up to IVs and taken off IVs and everything from his head to his toes was tested, but they kept coming up with nothing.

Finally after about three days, one nurse was looking over Mikey's charts and noticed that when the IV was hooked up his fever would spike to 104 or 103; when he was taken off it would go down to 102 or 101. She also realized that in all the testing, the only thing that hadn't been looked at was his electrolytes. The doctor agreed that they should be checked. Mikey's electrolytes were three times higher then normal. The doctor called Children's Hospital of Philadelphia (CHOP) and spoke with the doctor on duty. Coincidentally, this doctor had just had a talk with the head of nephrology earlier that day about nephrogenic diabetes Insipidus (NDI). We admitted him to CHOP. Less then 24 hours later we knew what was wrong with Mikey: he had NDI.

I went to work the next day and tried to explain to my boss what was wrong with Mikey. I couldn't even say what was wrong with Mikey-I still didn't understand it well enough-but my boss could. It seems that NDI ran in her family, too.

Despite knowing that Mikey had NDI, we couldn't get him to regulate. Mikey was born in early November 1991, but by Christmas that year he had spent more of his life in the hospital then at home. The doctors allowed us to bring him home for Christmas, but he was back before New Years Eve.

In late January 1992, Mikey came home from the hospital again, but then James went in for testing. This time it took the doctors less then 12 hours to figure out that James had NDI too.

The boys take having NDI as an everyday thing. Although I try to play this condition down as far as the boys are concerned, but I always stress the seriousness of this condition. The boys are doing very well.

When Mikey was diagnosed, I had no idea what NDI was and I was very scared. Walking into work and finding someone that knew what it was such an amazing thing. I swore that no one should ever have to be that scared again.

Knowing someone who knew what NDI was such a relief. That is when I decided to do whatever I could for the NDI community, as well as the entire DI community. I started a support group that finally became known as The NDI Network. My dream for the NDI Network is when a doctor says: "Your child has nephrogenic diabetes insipidus. This is a genetic kidney disorder and yes it sounds very scary. Here is a paper for a group that helps families who have NDI in their lives. When you have had time to digest everything, please give this organization a call." A lot of times it helps to just know that you are not totally alone in this.

Being involved in patient support groups is very important, I believe. I am also a member at large of the DiF Board and when it was still active, a member of the Diabetes Insipidus and Related Disorders organization.