Life With a DiaPort
March 24th, 2011

If I could describe life with a DiaPort in one word it would be ‘Wonderful’.

My ten year old son has had Type 1 Diabetes for over 9 years and is one of only a few people in the world to be ‘allergic to synthetic Insulin’. He has a rare condition called Lipodystrophy – severe tissue wastage at injection sites, caused uncontrollable blood glucose levels.

Because of the Lipodystrophy we were no longer able to continue with insulin injections and had to look for another method of delivery.

We first herd of the DiaPort in 2004 and were told by our Doctors that it was not an option for us as he was still a child and we did not have anywhere that we could site the implant.

In 2008 my son became very ill and his Hba1c shot up to 11.2% and his general wellness was declining and we knew we had run out of time and needed to do something. When we started looking we found we only had two real options.

Option 1 was a Porta Cath, and with this he would have to be in hospital permanently as it is not designed for use with Insulin, and the risk of using insulin IV was high.

Our 2nd option was the DiaPort; this one was designed for use with insulin but was not available for use in kids and was also not available in Australia.

As a mother you want the best for your child and will go to any lengths to let them have a normal life, so our decision was not hard we just need to fine tune the details like – how do we get the DiaPort, and who do we get to do the procedure.

With a few strings pulled we were off to France for the implant operation and hopefully a new beginning for my son and a better outlook on life with his rare condition.

October 3 2008 was the start of something wonderful.

With the DiaPort and insulin working with minutes of the operation, hypos were a new experience.

Since the operation we have had 8 months of ‘normality’ in our house hold with no painful injection and no fluctuations in his Blood Glucose Levels. This also has allowed us to get his Hba1c down to 8.2%. The overall improvement in his health has been remarkable; no-one could have predicted it.

Life with the DiaPort has changed our lives in more ways than you imagine, the changing of lines and insulin are not painful and the control we now have is brilliant.

We have however had a couple of infections at the DiaPort site and have needed hospitalisation and IV antibiotics to clear it up, but that is a minor issue with the quality of life my son has had in that last eight months.

Life is great, hockey, swimming and just being a kid.

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Diabetic Lipodystrophy in a 9 Year Old Child
March 23rd, 2011

Diabetic Lipodystrophy is a rare condition that is caused when the body sees the insulin as foreign and destroys the sub cutaneous fat and sometimes the underlying muscle at the injection sites in an attempt to destroy the insulin. Lipodystrophy in Diabetics was more common years ago when patients used porcine insulin, but was eradicated with the advent of the newer human insulin. The human insulin’s are more like that produced in the body of non diabetics and have fewer side effects in it users. Although human insulin is all that is readily available nowadays, some people still have reactions to it and don’t have any alternative but to put up with them and keep using it.

For sufferers of Lipodystrophy it is very common for the medical profession to not acknowledge that they are having problems and in most cases the patient is told that it is Lipohypertrophic (hardening and lumpy tissue from not rotating injection sites), when in fact it is quite the opposite.

My son developed Diabetic Lipodystrophy within a few weeks of his diagnosis of Type 1 Diabetes at the age of 14 months and we have had a long battle with his doctors and specialists over the past 8 years to get something done to manage his condition and give us control of his Blood Glucose Levels. We have tried all of the synthetic Human Insulin on the market and still continued to get wastage. We were able to convince his Endocrinologist’s to let us try Porcine insulin, which did still cause wastage but at a much slower rate the human insulin. The problem then was porcine insulin was no longer available in Australia and we had just used all there was.

Over the years my son went from injections to an insulin pump and back to injections as we ran out of viable injection sites on his tummy, bottom and hips to site a pump cannular. We were able to inject into his arms and calves and shoulder blades, but also had wastage in those areas too.

During this time we had even mixed Dexamethasone with his insulin to try to maintain a site for a bit longer than a week. This did have some success but was not helping his general health. Although we could use the site for that bit longer it became saturated, and developed a hard lump under the skin and prevented the absorption of the insulin, thus creating another problem. He had no regeneration in the areas that we lost due to the Lipodystrophy and after 7 years we are still not using his tummy, hips and buttocks regions. We have run out of options and need to find and alternate delivery method, fast.

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The ‘Real’ Costs of Raising a Child With a Medical Condition
March 23rd, 2011

It is amazing how every month there is a new study coming out about the ‘costs’ of raising children, with monetary values being thrown around like a house auction. Some of the figures add up to nearly half a million dollars to get them to adulthood.

Raising them to school age; Raising them to their teen age years or raising them to 18. If you raise them to 18 it could be $200K at a public school, then if you want a private school you are up for $400K plus, all of the results differing from the last study.

When I see these figures and graphs I have to laugh because if I didn’t laugh I would cry. I would really like to know where these figures come from, as you can bet they are not from everyday families with children that require ongoing medical treatment.

I have a child with Type 1 Diabetes and like many families I really disagree with these sorts of calculation – theses studies NEVER take into consideration the added expenses incurred by a medical condition or any ongoing care required by a child with an illness.

Quite often families that have a child with a medical condition have a lot of added expenses, and in some cases one of the parents has to become a full time carer and is unable to continue or return to the work force.

This immediately puts a strain on the families’ finances, so you now have to find the $200-400 K for raising this child and any siblings, on only one wage. Not to mention the ongoing costs of specialists visits, medical equipment to manage their condition and the day-to-day expenses needed just to get by.

This then leads us to another very big set of costs – emotional.

Emotional costs are one of the highest expenses families face, but these are not usually considered as they can’t be measured with money. However they have a huge impact on families with children that require constant medical treatment and care.

Some may not consider these as legitimate costs as they are not measured in monetary form but they do affect the family and the overall income that can be earned. If one parent is always with the child for medical visits the other one has to be on call for the other siblings or may need to be at the hospital too, thus reducing their time at work and overall income.

Like many other families this ’emotional cost’ has been our biggest. Our son is not a normal diabetic – he was diagnosed at only 14 months of age and is one of only a few people in the world allergic to insulin (the one thing that keeps him alive).

For the past 10 years our expenses have been extremely high: jobs, family time, health, sleep deprivation, constant travel to Doctors, loss of schooling due to illness, and the strain of our relationship as a family have been just a few of the every day things we contend with, and all of this is ON TOP of the financial costs.

For families dealing with a child that has a medical condition the ‘financial strain’ can be just the thing that takes them to breaking point, as this is usually because money is the only true thing that can be measured.

If a monetary value was to be put on a child’s quality of life, or a mother’s full nights sleep, a sibling’s quality one-on-one parent time, the figures would be greatly increased and the mere $200-400K expert predict would look like coin you could throw into a fountain.

The ‘Real Cost’ of raising a child with a medical condition cannot be measured financially – because if you did, it would bring you to tears.

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