^{Please note the information provided below is for your information only and does not replace medical advice. Please check with your medical team before making any changes to your diabetes regimen.}

^{Diabetes Advocacy is proud to add an Expert to our site. Jill Milliken is a Pump Expert who will be providing us with information and is available to try and answer any question you may have. If you have a topic you would like Jill to discuss, please contact us at Diabetes Advocacy.}

^{For those with Disability Tax Questions, we have also added a DTC section for your questions!}

Kids and Infusion sets

by Jill Milliken RN CDE

Insulin pump therapy is the gold standard in pediatric type 1 diabetes management.  The pump is well accepted and has specific benefits over MDI in this population adding to it’s increasing popularity amongst families of children with diabetes.  There are also more choices for infusion sets than ever before adding to the convenience of the therapy.  This article aims to assist parents and educators in choosing the best infusion set for the child and troubleshoot common set problems.  

Each type of infusion set has it’s own specific benefits and considerations.  Assisting your child to choose the one that suits them the best can eliminate untoward events or unnecessary frustration.  The following are some general suggestions when choosing an infusion set. 

Teach more than one type of infusion set

Preparing to start insulin pump therapy is the “teachable moment” for learning new things.  Training the use of more than one type of infusion in the beginning can help later on if there are problems with the initial set or you get caught in a situation where you have to use a set you are less familiar with. 

Age and infusion set considerations

Young children under the age of 5 or 6 are best with the sillouhette / comfort set placed in the tissue of the upper outer buttock.  There are several reasons for this including the “out of sight out of mind” factor, the added subcutaneous tissue in this area and the fact that these kids often “lead with their bellies” making that area more prone to being bumped. Parents should learn to put the infusion set in manually as opposed to using an insertion device.  Topical anaesthetics, ice or the back of a cold spoon can be used to desensitize the area prior to insertion.  This type of infusion set is available in more than one cannula length. Practice makes perfect in selecting the best insertion angle from 15 – 35 degrees.  

In school aged children the preference for using the buttocks is less common.  Increasing independence with set changes and being away from home for sleepovers, camp etc. means that these children can learn to place their own infusion sets.  Lean children should use shorter length cannulas such as the quick set 6mm or a manually placed sillouhette / comfort set.   

Teenage girls often prefer the low profile placement of the sillouhette / comfort infusion set as it can be inserted in front of the hip bone on the lower part of the abdomen out of sight and in keeping with today's’ popular fashions. Instruct them to pinch their skin up high when they place this infusion set aiming the needle at the highest point of the pinch.    

Any school aged child or teen who can pinch an inch may find that a short cannula leads to frequent bouts of dislodgement or poor absorption.  A 9mm cannula or angled infusion set is preferred. 

Troubleshooting  

The following are some suggestions when troubleshooting infusion set problems: 

1. An infusion set should last 3 days, though in some children, rising blood sugars on day three can indicate the need to change more frequently if it occurs consistently.  This may be due to the combination of a low infusion rate and rapid healing often seen in children.
2. If your client is struggling with dislodgement or site problems, it is important to evaluate their technique in placing their infusion set including the use of an insertion device. 
3. A kink in the tip of the cannula may indicate an infusion set resting against a muscle. Use a shorter length cannula, or angle the sillouhette / comfort infusion set to a lesser degree upon insertion.  Kinks at the top of the set close to the hub are due to “set migration” caused from added pulling on the tubing.  Either secure the site using the “sandwich technique” (see inset) or use another piece of tape to secure a proximal loop of tubing.
4. Skin irritation under the infusion set is common.  This can occur when the set is left in too long, gets wet and or there is a sensitivity to the adhesive, skin prep product or cannula itself.  Rule out product sensitivities by  using only soap and water.  Sandwiching the set is the next step at isolating the cause of the sensitivity.  If it truly is a cannula sensitivity and your client is using the Quick set or Sillouhette / comfort suggest they try a sof set as the cannula is made of a different material.
5. Site allergy is more serious and may require systemic medications to prevent an allergic reaction.  Localized site allergy may be temporarily offset by the use of a topical antihistamine such as Benedryl stick or lotion.  Talk to the physician about prescribing Atrovent for topical use. One dose on the skin prior to infusion set placement has been known to prophylactically prevent a skin reaction.
6. Removing adhesives can appear as a local site irritation the same way a raised red area commonly occurs when removing a bandaid. Use baby oil or lotion to remove an infusion set if this is the case.  If removing an IV 3000 dressing (see inset on sandwiching) remove by stretching the dressing progressively until it peels off easily.
7. Long – term pump users may experience “site fatigue”  from using the same areas over a long period of time. This scarring and decreasing or variable absorption is preventable to a point.  There is no one type of infusion set that is better than another one at preventing site fatigue.  A more important factor is good skin care. Explain to the client that leaving their infusion set in too long,  surface skin infections after the set is removed or lack of rotation of infusion areas are causes of site  fatigue. Each nursing visit should include an assessment of the infusion sites and review site rotation and good skin care techniques. 

Pump Specific Psychosocial Issues

Jill Milliken RN CDE

The following are some commonly discussed psychosocial issues related to insulin pump therapy. 

1. Realistic expectations of what a pump will do. It will not take diabetes away. If outstanding issues are present relating to denial of the disease, the pump will make things worse, not  better. As the reality of what pump therapy is vs what it isn’t unfold to the person with diabetes, the opportunity presents itself for a “teachable moment” in up-to-date diabetes care.  After the rose-coloured glasses come off and the picture becomes clear, true motivation for change can be acted upon.

2. Family support for the new pump user. Initiation of a pump is sometimes described as similar to bringing a baby home from hospital.  A newness to the therapy can make people unsure of how they are doing and frequent monitoring can interrupt usual routines ie) overnight readings at 3 am until rates are set. Support therefore is key in success of pump therapy.

3. The “Wearing Issue.”  For those people new to insulin pump use, the thought of the pump being worn continuously can be daunting. The pump must  be worn 24/7, 365 days a year. That being said, the trade off of being perpetually attached goes hand in hand with freedom from injections, mealtime flexibility and quality of life improvements. The “wearing issue” should not overshadow the benefits of the pump tried and proven. There was even a research study of pumps VS Multiple daily injections that had to be cancelled midway because the pump group refused to cross over! In fact, 97% of people who start on a pump, stay on a pump! Kids can look at having a pump as almost a “status” symbol. They become very proud of their pump! Some kids even name their pumps.  One girl named her pump “Atlas” because in her words:  “it took the world off my shoulders.  Health professionals can sometimes focus too much on the wearing issue because they themselves might find it inconvenient.  Some people may even be discouraged from using one for that reason alone!    It is always helpful to remember who the person with diabetes is!

4. Who here has diabetes?”   Sometimes, someone in the family other than the person with diabetes is very keen about the pump.  There may be a degree of pressure to conform to the request by this family member to use a pump.  This is seen in kids where it is the parents who want the child on a pump not the child. Sabotage can and does happen in pumping therefore it is simply not safe if the user is not willing.

5. Intimacy. In adults of any age, the insulin pump can be seen by partners as an encroachment on their territory, an unwanted “invader”. Similarly, the pump user themselves can feel that their partner may see them as fragile or susceptible to harm due to being a pump user. This is absolutely not the case and this aspect of life must be discussed early on in the process to allay fears related to intimacy and the pump. Most couples simply disconnect the pump from their body during intimacy. Solutions to early or current issues related to this can include:
   1. Using infusion sets which are “low profile” and disconnect right at the site. Those with a hanging tube when disconnected can be replaced by more discreet infusion sets such as the silhouette.
   2. Using an infusion site area which is “out of sight out of mind”  such as the upper buttock.
   3. Taking advantage of sight change times. Remember, the pump can be disconnected for up to 2 hours anytime while “active”

6. Taking a pump “holiday” . Though not commonly done, some people prefer to take a short pump holiday. Voicing this may mean that they need a mental break from being attached perpetually to the pump. If someone approaches their provider about taking a “pump break” it should not be discouraged. How can we – non-diabetics relate to their personal experience in order to judge whether we want them to discontinue the pump for awhile? In short, we should not. Yes, the reasons can be explored, but once a consensus is reached, guidelines for the resumption of injections should be given by their provider.

Overall, pump users relate that pump therapy is a great success in their life. The phrases often used are “in more control of my disease” and “I wish I would have started on the pump sooner.” The feeling of success with pump therapy is often so overpowering that people with diabetes wish to share their experiences with others. Pump support groups are the result of this enthusiasm and a testimonial for the benefits of insulin pump therapy over other modalities of insulin delivery.  Case and point: how many  “Insulin Pen support groups” do you know of?

Ask our expert your diabetes related question!

ASK OUR EXPERT!  Jill, RN CDE

My 19 year old daughter has been wearing the pump for 10 years.  Initially, infusion sets and sites were no problem - she used the Quickset, changing every 3 days - good BGs..  She rotated sties (abdomen) carefully.  She then became very active, lean and muscular and switched to Silhouette, using the longer and then the shorter cannula.  After a time, sites often "went bad" due to the bending of the cannula, so she changed to Sure T.  For the past year, she has used the Sure T, and was fairly successful.  For the past month, however, sites are "going bad" (soaring BGs) about every day and a half.  When she removes the set, there are lumps at the site.  She is still using her abdomen, and trying to rotate the sites.  Is she reacting to the metal needle?  Is it possible to react to Humalog?  (she reports that she feels the insulin going into her body after a bolus)  Any suggestions about what to try next?  We are desperate and considering going off the pump!

• The disclaimer is that there can be may reasons for “soaring BGs” which can be unrelated to the site. 

Since your daughter has been on the pump for 10 years however, I know she must have encountered these other issues and was able to eliminate other causes.  Lean individuals do well with short cannula 13 mm silhouettes and since you have also tried it, it may be a technique issue…when she pinches up the skin, don’t “tunnel” or go to shallow of an angle as it may not be the right type of tissue for insulin absorption.  Once the skin is pinched up, use a 30 degree angle to insert the cannula.  Once the pinch is dropped, it will be in the right tissue.   

Have you ever tried NovoRapid in the pump? Many long-term pump users who had issues with sites found that using NR improved things.  Talk to your pump educator or doctor about switching if you wish to try this.  There are some studies available which have shown improved sites in  pump users using NR particularly those who were unable to achieve a full 3 days with one infusion set using Humalog.

How do you get off the pump on your own if you do not seem to get your physicians to understand your need for a pump break ?  I still have my pre-pump numbers, can I go with that ?  ~Diane

• Off pump protocol:

Reasons for going off a pump may vary. They include everything from malfunction, surgery, special occasion or any event or situation where one may choose to discontinue the treatment for hours, days, weeks or more. It is therefore a good idea to understand how to resume injections.  Every pump user should have their basal rates, insulin to carbohydrate and insulin sensitivity (correction factor) written down.  Resumption of injections as mentioned below, cannot be done safely without these key pieces of information.  

Pump users are most often instructed to resume their pre-pump doses of insulin, however; this can be dangerous for several reasons:

-they are most often using less insulin than they were on injections.

-their body is not used to large depots' of insulin.

-their weight may have changed since injections and therefore their insulin sensitivity may have changed.

-because of the long duration of some insulins, resuming pump therapy is easier if you are only using a rapid acting analog such as Novo Rapid or Humalog.

Here are some considerations for pump therapy interruption whether it is by choice or not. 

1) Take care of your diabetes first, your pump second.  You will need insulin by injection in as short as only a few hours to prevent "Accelerated DKA" which  is a therapy specific issue. Frequent or continuous monitoring of glucose is the only way to control this situation from worsening.

2) For short periods off the pump such as 24 - 48 hours with the intention of resuming the pump, you can take 6 injections of rapid acting insulin around the clock. Do this by adding up your basal rate for the each 4 hour "chunk" of time, add to that amount, any bolus insulin for a meal or snack to this amount, then reduce this total by about 10 - 15% at each injection. This total is your injection of rapid acting insulin. ie) Joe uses 0.7u/hr which is 2.8 u over the 4 hours. At breakfast he is 10mmol and has a correction factor of 1u/2mmol and a carbohydrate ratio of 1u/15g carb. He is eating 60 g for breakfast. He requires 2.8 for  basal, 2 u for correction, and 4 u for his food. All together the total is 8.8 u of rapid acting,  reduced by 15% he decides to take 7.5u. At bedtime, his sugar is 5.5 and his basal rate is 0.6u/hr. or 2.4u. Since Joe mowed the lawn in the evening he decides to have a bedtime snack of half a sandwich and not take insulin for it to be safe and injects 2u for his basal and sets the alarm for 2 am. This is just an example, everyone knows their own diabetes best.

3) For longer periods than several days, you should talk to your doctor or educator for resumption of long acting and rapid acting. If your pre-pump doses were recorded prior to going on the pump, it is prudent to reduce this dose and titrate your insulin upwards using your correction factor. Frequent testing is key. 

After resuming your multiple daily injection therapy, the pump user must take a few things into consideration:

-you may need to have a higher bedtime glucose level than on a pump.  Therefore you may require changes to the way you approach meal planning such as adding in snacks with higher carbohydrates and eating at regular intervals.

-Your glucose may be more variable. Be prepared to test and act more frequently.

-Your meals may require adjustments, you may not be able to "eat whatever you want" without paying the price later with high blood sugar, and weight gain.  

In Summary,

For some individuals, these off pump considerations are still worthwhile. Being connected 24/7 365 is by no means easy and those who support pump users should be aware of the mental fatigue that may (or may not be) improved by a short pump "vacation" For the pump user, try to decide whether the psychological fatigue you are feeling relates to using the pump or is in fact related to caring for your diabetes in general - sometimes its' hard to deliniate which it is.  For many people who try a pump vacation, the benefits of their pump to their lifestyle will become quickly apparent as they have become used to the freedom the pump can provide, but for others who live off the pump like they did on the pump, they will soon find out it's harder than they think to gain the control they had over their diabetes.  Whichever they choose, it is always their choice, not their loved ones or health providers who do not have to walk a day in their shoes. Doing it safely is key.

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^{Ask the Disability Tax Credit Expert}

Please note that Barb is not a tax accountant. Tax law questions should be directed to the appropriate professional accountant or lawyer.

I am a retired 61-year-old male who has recently been switched from oral diabetic meds to two kinds of insulin to get my sugars under control. I can no longer use the oral meds because my kidneys have been damaged. I live on my pension and CPP. I want to apply for the disability tax credit. I seem to meet the criteria, but I am not certain. Does the credit apply only to people with Type 1 diabetes? Diabetes completely rules my life. I exercise a lot, walking about 8000 steps a day (currently shooting for 10000). I am very careful about what I eat. I test five or six times a day, and inject insulin by syringe four or five times a day. Given the limited amount of information I've shared with you, do you think it would make sense for me to apply? I also suffer from chronic pain from psoriatic arthritis and it is highly unlikely I will ever hold a job again.  ~John, BC

• The DTC applies to anyone who is dependent upon an external source of insulin that must be injected via syringe or insulin pump to survive. People with Type 2 diabetes who are using insulin are qualifying for the DTC. The process is the same as those living with Type 1 diabetes--download form T2201 off of the government website (we have a link on the DTC page) and fill it out. Have it signed by your physician and send it in with your taxes. If you have been using insulin for a period of years, you can ask to be reassessed to the year you started on insulin or 2003 which ever came first. If you have been using an insulin pump that date goes back to 2000. Your doctor may be sent a second form asking for details of your care. This just needs to be filled out accordingly and once it is signed then you will receive your DTC for a specific period of time. After that time has elapsed, you simply apply again.

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