Ravi's Story - By Rose Lulla (aka Ravi's mom) rosieposieL@juno.com
Ravi was diagnosed diabetic on his 7th birthday, August 12, 1994. He had all the classic signs, drinking gallons, frequent urination, very tired, irritable, moody, weight loss and all the rest. His siblings begged me to "do" something with him! I wasn't sure at that point but that they wanted me to give Ravi away or something. They really couldn't stand to be around him. Poor little Ravi, it wasn't his fault! It is easy to say now that we should have seen "it" before we did. Hindsight is always 20/20 isn't it? Ravi never did get really sick, so I guess we got him to the doctor early.
Putting Ravi on a set schedule was rough on him and on the rest of us. We are not a family that likes to do anything by the clock. I think that was the hardest thing at first. The food plan was a "piece of cake" so to speak! The injections were not fun, but manageable. We did everything we were told to do, including keeping Ravi on that awful strict schedule.
After going to two endos who kept telling us they had never seen a child like Ravi, we found Ravi's current endo. He is an adult endo but takes the kids that come to the practice. He knew what we had been through and knew what to do. If he didn't know answers he would ask other endos. Sometimes he couldn't even get answers. It turns out that Ravi is insulin resistant along with being insulin sensitive. He is very sensitive to changes in doses, but does not use insulin in an effective manner. It was taking 4 hours for the Regular to peak and that was with Ravi waiting an hour for breakfast! As soon as Humalog came out we put Ravi on that. It only takes 3 hours to peak! We found that out by doing bgs every hour after a meal, a total of 11 tests a day.
After two years, Ravi gained lots of weight, about 40 pounds. Not a good thing! His insulin needs were up to more than one unit per pound of body weight. He was up to a total of more than 140 units a day, weighing just under 120 pounds. He was nine years old by then. Ravi's endo knew we needed to do something. At that point the endo added a shot of Humalog at lunch and cut back on the morning NPH. Ravi's insulin need dropped to under 120 units a day, four shots a day. At that time we also took a class on the pump. That was when I knew that this was the only way we were ever going to help Ravi. Ravi was all for the pump even then. The endo asked us to wait six months and see where we were at that point.
At the end of the six month wait we were approaching Ravi's 3rd diagnosis anniversary, Ravi's 10th birthday. We asked again about the pump and the endo told us to gather all the information we could from other parents and the pumpers themselves. That's when I first got on the world wide web! I e-mailed lots of parents of little pumpers. All were very honest with me and very encouraging. I printed off all the e-mail information I got. I talked to Ravi's dietician, herself a pumper for 9 years. I talked to different nurses and pump trainers who had worked with Ravi in diabetes class. I was prepared for a battle if it came to that the next time we saw the endo.
July of 1997 we went to the endo ready to fight for the pump. The endo walked into the room and asked Ravi what he wanted to do about the pump. Ravi told him that he wanted it and the endo said "Okay!". No fight, no nothing, just what we wanted to hear. I was amazed! The next day I found out that the nurses I had talked to and the dietician had "talked" to the endo and convinced him that we were serious and that Ravi was a great candidate for the pump. That's why we didn't have to "fight" for his approval! The endo wasn't ever against the pump for Ravi, just wanted to make sure we knew what we were getting into! Ravi's primary care is all for anything that will make Ravi's life better. The insurance company, an HMO, didn't even argue with us. They had all of Ravi's records and were no problem at all. They just wanted us to get the pump and supplies direct from the company and not through a local supplier. We are still working on getting that changed!
Ravi, his daddy and I went to the local diabetes center to have a "hands on" session with a pump trainer and the two brands of pumps. After an hour of letting Ravi "play" with the pumps, we decided that MiniMed was best for Ravi. Besides, it comes in "cool blue" what more could a little boy want?
From that day in July until October 23rd, we were on the phone all the time with the insurance company, MiniMed, the local diabetes center and the doctor's office. On October 23rd we met the doctor and the pump trainer to get the training started. By noon that day, Ravi had the pump "hooked up" and was ready to take on everything that he had to, to make sure the pump worked properly. We went to lunch with the pump trainer and she made sure Ravi remembered what she had just taught him about doing a bolus for a meal.
Ravi took to the pump like he had always had one. Nothing seemed to bother him as far as having to bolus for a meal or changing the clock at the end of daylight savings time. Even changing his sights and infusion sets don't seem to be a big deal for him. It is just part of who Ravi is! We have had a few alarms, but that doesn't even bother Ravi. We just figure out the problem, low battery, no insulin, or whatever and take care of it.
The best part of the pump is that we are getting better control. We are still working on basal and bolus rates, that takes time. Ravi is still insulin resistant, but is on less insulin, much less. Remember that 120 units of insulin a day? Now he is down to about 60 units of insulin a day. Ravi has even lost a little bit of weight which makes us all very happy. Oh yes, I almost forgot, remember what I said in the beginning about not being a family who likes schedules? The pump has given us back a freedom that was taken away back on August 12, 1994. Ravi likes to sleep in on the rare occasion that we have a morning free, especially during breaks from school. Ravi loves the fact that he does not have to eat all of the time. He likes to eat when he is hungry, not when the insulin is hungry. Ravi even gets to eat lunch now when the rest of his class eats lunch. For three years Ravi has had to eat early, before the scheduled time for his class, because the insulin would finally peak and Ravi would crash!
Ravi has been given back his childhood. These kids have to grow up much too fast because of the diabetes, why not let them be kids as long as we can? Why not do all we can to get the best control possible to delay the complications of this disease?
Some kids do not want the pump. That's fine if they want to manage their diabetes with multiple injections. But if your child shows an interest and wants to know more, even to the point of asking the doctor, I suggest that you support your child in every way possible. If anyone reading Ravi's story wants to talk to us, please e-mail us at rosieposieL@juno.com
Rose (aka Ravi's mom) :-)