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Four months in

10/2/2017

4 Comments

 
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When we set out to start this blog we honestly thought we would have more time to write about our challenges and triumphs and in so doing help other moms and dads with raising their little T1D Warriors… Time really hasn’t been on our side! We have a few minutes spare and thought to quickly jot some thoughts down. We’d love to hear from some of you your thoughts, especially if you have had similar experiences and have some insight to offer.
 
The Guardian Connect
 
The Guardian Connect is a constant glucose monitoring device which is basically a sensor that is attached to Harrison and takes a glucose reading every 5 minutes. The nice things about it is that is syncs to an app on your iphone and allows you to monitor glucose levels in real-time and take the appropriate action for hypers and hypos allowing you to maximize your time in the “safe” zone.
 
We have had several people asking our opinion of the Guardian Connect since having had Harrison on it for just over a month. This is our honest opinion so expect the untainted truth. Off the bat, given Harrison’s age, now 15 months old, I don’t think the device is actually right for him. The sensor is extremely sensitive to bumps, even the slightest, and if you think about a baby who’s really just discovering the world (and his legs) there is a lot of wobbling, a lot of falling, and a lot of bumping into things. You can’t exactly tell a young adventurous toddler that he needs to be careful and be still. Boys need to run and explore the world around them freely.
 
Sadly, our little boy has presented with a nasty rash no matter what plasters we have tried, or pre-sensor-insertion techniques we have used. Each sensor (which costs over R300) lasts for 6 days – we have not made it passed 3 days on a single one. While we can rave about the device for the short intervals that Harrison has been able to wear it, we do feel short-changed for the simple fact that we can’t get the sensor to stay on long enough before it loses signal. Our medical aid has not covered the device and it is a lot of money to fork out whenever you need new ones.
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In saying all of that, even for the short time that we have been able to track his glucose levels, we can say the following positive things about it that we are sure every parent of a Type One Warrior will appreciate:

  • Your little person will get a better night’s sleep because mom and dad are not having to physically test every couple hours. A glance across to the app, provided there are no low or high trends in progress, and you can roll back over and fall asleep knowing your little one is still within the ideal range.
  • The alerts! When there are significant high or low trends the phone will alert you so that you can take necessary action – testing blood glucose levels for confirmation before administering any treatment obviously.
  • You can better manage your child’s diabetes from the office or whilst you are away for a period of time by accessing the carelink site online and watching the live feed being synced through from the app. When there is a significant trend in a certain direction you also get notified by a text message. This has proven useful in our care for Harrison as we both work about 20 minutes away from him during the day! It has given us a better sense of control even though we aren’t there to physically administer treatment we are wholly involved in the decision making.

In the first week of having the device we were also able to identify regular trends of hypos that occurred at the same time every day indicating an issue with the insulin treatment we were prescribed. We have since changed insulin types and dosages and since then his levels have leveled out drastically.
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Thankful for people like Dr Claudine Lee

If you’re in the KZN Midlands with T1D, or have a child with T1D, you may already be seeing Dr Lee, or have at least heard of her. She is a GP with a keen interest in Diabetes.

She has been amazing in the treatment of Harrison, not only for his Diabetes but his general wellness as well. Dr Lee has bent over backwards seeking second opinions from other Paediatric Endocrinologists, given her knowledge and understanding that something was going wrong with the treatment that Harrison was currently on.

Dr Lee has been there for us in so many ways: from fitting us in between seeing other patients, to giving us various different plasters to try because Harrison reacts so badly, to phoning through after hours scripts for us – the list is longer. This woman has gone above and beyond for us so this is just a special thank you to her.
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​The biggest challenge

We have struggled so with what to feed Harrison, especially at dinner time. He thinks he knows what he wants and if you even try come near him with something new or different he will fight you tooth and nail before you force it into his mouth. Once he has eaten his allocated dinner begrudgingly and mom and dad sit down to eat theirs, he is there begging for every morsel of steamed carrot or veg that you just had to try force him to eat the night before... You know how the story goes.

A plea to experienced moms and dads - share the secret to getting your kids to eat please - and the recipes!

We're on a massive hunt now: searching for recipes and foods to try. He's still very young and too low a carb diet is not recommended. We're being as Low GI as possible! We will be sure to share our food journey on here because I think for most parents with T1D kids that are this young are going to face the same struggle with food.
4 Comments
Claudine
10/2/2017 19:04:39

Thanks for high praise. I applaude all of you for being the best you can be for Harrison - one tough warrior 😀

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Elna
10/2/2017 20:42:55

He is so tough and so special. Thanks to all the special people in his life and especially to his parents. Love you all so much xxx

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Karen
10/2/2017 20:45:17

Hi Claudine. I worked with you at Dr Van Schalkwyks rooms. I am Candice's mom, Harrison's granny. Back then you were still a young Dr, but thorough. You found out what was wrong with me the first time I saw you after asking for the correct bloodwork to be done. The other Dr's had been battling for a few years and were treating symptomatically. Imagine my delight to hear Harrison was being treated by you. I would personally like to thank you for your passion for what you do and the fact that you have never lost it. I have not enough words to thank you enough for what you have done for Rowan, Candice and my precious Harrison.. Kind regards, Karen Lange, now Schmidt.

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Ronel
14/2/2017 13:58:14

I absolutely love this blog! It is always nice hearing about Harrison! My son was 2 when he was diagnosed and I absolutely recall how challenging it was (and after 8 years - still is). My son had a very bad allergic reaction to the sensor and due to that, did not get 6 days out of it. We started using Leukotape K and it is absolutely fantastic. I now realise that the allergic reaction was triggered by the friction between the transmitter and the sensor. Not only is the allergic reaction gone but the tape is ensuring that we get 6 days out of a sensor. All the best with Harrison! It seems you are in good hands! An understanding Dr is always a blessing!

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