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[IP] Re: insulin-pumpers-digest V2 #225

Good evening all!

I joined this e-mail a week go and my 6 year old son started on the pump this past Wednesday morning.

OVERALL:  It has been a challenging week but already I can say I have never been happier or more relieved since my son's diagnosis 14 months ago.  I never fully comprehended how much our lives had changed until the FIRST Day my son, Brendan started on the Pump.  We almost forget what it was like to allow our child to let us know WHEN he is hungry or WHEN he is full.  I was aprehensive that he might use the freedom the pump offered to rebel against those many months of force feeding. Not in the least!  To my surprise, my son's appetite has increased in very healthy proportions.  He now devours everything on his plate at meal times and enthusiastically requests nutricious snacks.

We are managing very well with small units of humalog.  While we are still encountering the odd high, Brendan is exceedingly responsive to humalog so a correction bolus usually returns him back to his target range very qucikly. Lows have virtually disappeared!! While energy has never been lacking in my son, he certainly suffered mood swings as a result of swinging high and low. What a gift we have given him:  The freedom to CHOOSE what to eat and when to eat, the benefit of more regulated blood sugar levels and the prospects for continued good health in teen and adult years.

PUMP & SUPPLIES:  Brendan is using the Minimed Pump along with the silhoutte infusion set and the Randall II transparent dressing.  Our six year old is able to deliver his own bolus without hesitation on the Minimed. The infusion set certainly demands good insertion technique but once in place, it stays and is exceptionally comfortable. Brendan claims not even to notice it.  The Randall dressing was a good choice in relation to a small body. Unlike many of the other tapes, it is narrow and does not cover as much surface area.   The emla cream which we use to prep the infusion set can tend to cause a rash if we leave it on for longer than 45 minutes but works VERY well and Brendan never blinks an eyelash when the infusion set is inserted.  We are still experimenting with tape removal agents but have been pleased with most we've tried.

While it might appear that we are an extatic "happy pumper family", I want to share some trials so that.... prospective pumpers and their families might continue to learn as much as they can before they enter the next phase of "transition to pump therapy" and advocates of of pump therapy can reflect on work to be done with Pump companies, Insurance compainies and Health Care teams to ensure that the Insulin Pump is viewed as a viable and attainable option for those who wish to use it in managing Diabetes.

INSURANCE COVERAGE:   It should be no surprise to most of your subscribers that our Canadian insurance company, "Blue Cross" does not cover the pump except in rare circumstances where it has been added to a posh group employee health plan.  Like many companies, Blue Cross considers the Pump to be a piece of equipment so will not finance it but will cover the cost of supplies.  While I have not given up the fight with the insurance company, I was not prepared to flog it until we got the pump. Now that we have the pump and KNOW its value, I am prepared to continue a slow steady battle to do my part to convey a message to the Insurance Industry that the pump should not be segregated to an equipment category while cartridges and infusion sets find a home within the Diabetic supply group.

PREPARATION:  I am so thankful for the constant reminders and encouragement from cyber friends to prepare, prepare, prepare before actually starting on the pump.  The learning curve is a big one and it is NEVER too soon to start learning and preparing.  I found John Walsh's book, "Pumping Insulin" to be very good in creating the BIG picture and even better at getting down to small detail. So good, in fact, that it will be a major education resource for a very long time. Since our son is the only young child in the Province of New Brunswick and perhaps in all of Atlantic Canada using the Pump, we did not have any advance education and training.  I regret not having had the opportunity and NOW KNOW just how critical it is. I am sure that future children and families in this region will have more support because our Endo and Diabetes Nurse Educator are learning from our experiences and studying on the side....in anticipation of future demands for support from families seeking pump therapy.

MINIMED:  I am very impressed with the Minimed Pump and supplies but have had some experiences which I hope will not happen to other NEW Pump users and families.  The first is that the Canadian Sales Representative is extending himself too much. He covers the entire country.  While the sales volume may not call for more representatives, the new customers are calling for better support and attention.

The Sales Rep had almost 8 weeks advance notice of our start-up date.  Upon request, we received samples of the Silhoutte infusion set, that we claimed we would start with, and other supplies.  The infusion sets arrived without instructions. Just a few nights prior to start-up, we obtained a faxed copy of the instructions and I practiced inserting the infusion set on myself.  It was a good thing I did because just one night before we went to the hospital (1.5 hours away) I discovered that the only Pump Trainer (Nurse Educator) in the province had never heard or seen the Silhoutte infusion set. This was somewhat understandable given the fact that there were no children on the Pump but not acceptable since the Sales Rep knew that she was going to be working with us. Not only did I provide a sample of the silhouette for the nurse but I showed her how to use and insert the infusion set.  It was our great luck and fortune that my first attempt at inserting the set in Brendan worked perfectly. The anxiety that filled the air in the room quickly changed to sweet delight and we all breathed it in!!!

Such was not the case on effort number two which took place on the day of discharge.  While I had asked to have the nurse available for moral support, she claimed that I knew more than her and she could not be of any help. So, I did it alone and managed to crimp the canula.  It took a few hours of testing to confirm the problem. We were eating at a Restaurant with friends when the bg's started to soar. Manual injection of Humalog took care of the highs.  We had intended to begin our trip back home right after lunch but decided to stay in the city until we had things under control so we went to our friends' home and I tried to insert another infusion set.

While we waited and tested and tested and waited to see how the second set was working....My girlfriend went into labour. Her labour seemed to progress as Brendan's bg's soared. Finally she was in heavy labour and my son heading to DKA. While her husband took their child to the babysitters, my husband gave my son another injection as I timed contractions and worked with the Minimed support-line technicians to ensure that the Pump was not the problem.  By the time I hung-up from Minimed and KNEW that the pump was ok, My girlfriend was on her way out the door to the hospital.  We locked the doors behind and headed for home.

Since it was so late at night and his bg's were getting dangerously high, we decided to revert to injections until the following day.  We did not advise the Endo as we did not want her to lose faith in the Pump for kids.  I cried for 6 hours and then found the determination to try again in the morning. My efforts paid off!!!

Had the Minimed Rep informed the Nurse of all of the products and helped her familiarize herself with the Silhoutte infusion set, we would have been off to a much better start.

Another unfortunate experience occurred when we took our son swimming on day #2.  We chose to swim to familiarize ourselves with the quick release option of the silhoutte.  The procedure was fairly easy but an added experiences left us a tad shakey.  Upon reconnecting the pump, I had to get rid of a large air bubble or space from the tube.  I bolused it out but did it in small increments because we had set our maximum bolus down to 3. As we were driving back to the hospital, the watch dog alarm went off on the Pump.  It is a siren, not a series of beeps.  We were shocked but prepared.  I had planned for the event months prior by taking the Minimed alarm sheet, photocopying and sealing it in plastic. I grabbed the copy and started searching for the picture and description to match the alarm. There was none yet I recalled reading about the famous siren.  Luckily I had brought the Minimed instruction manual in the van. I quickly flipped ot the Alarm section and found the correct alarm.  It told me that it was a watch dog alarm for over delivery of insulin and to remove the battery carrier to stop pump and alarm.  Too late, I selected the suspend feature and it worked. I was very concerned that the alarm mentioned in the book, which we experienced, was not on the alarm card.  As soon as we got back to the hospital, I called Minimed. They concluded that the alarm was tripped because I had bolused (to rid air from tube) more than doubled the rate my son had ever bolused for. I still don't fully comprehend this but at that time I was only thankful to have stopped the alarm and annoyed that the alarm card did NOT include that most important alarm.  I have asked Minimed to revise the alarm sheet and send a new copy to all customers.  Minimed has confirmed that this alarm is not the same as the 6 beep overdelivery alarm and that they did not include it on the alarm sheet but are now addressing the issue.

VALUABLE LESSON:  We have learned so many valuable lessons in such a short period of time but the most valuable lesson came just hours after hook-up.  Brendan was busy playing in the supervised play room  while I napped and my husband met with the nurse.  Brendan had his first low reaction  and in his state of "confusion" he turned to the pump to treat the low.  The dear CHILD gave himself a bolus unit of insulin. It was fully delivered before staff could do anything. They quickly ushered him into the nurses office where he was given popsicles, suckers, juice, toast, milk and cheese.  Later that day we talked about the Pump and reinforced that our son is NOT to operate the pump without adult supervision.  I want to stress that although he is only six and perhaps has not yet fully comprehended the full scope of the pump, he does know how to use the basiic functions, why they are used and is all too aware of the lifestyle advantages it offers.. Confusion and poor judgment can happen at any age so sceptics need not point to this experience and say that kids should not be pumping. Instead, parents of  young children need to be extra vigilent in coaching their child how to respect and use the Pump.

With all that behind us, we now move forward to return our son to school, Pumping Insulin and feeling GREAT!!! This too will have its challenges will probably be a story and lesson for another time.

Mother of 6 year old, Brendan