Posts tagged children

New Beginnings (Again.)

1 January, 2009 · Filed under By Kate, Diabetes me, Diafrustration, From Parent to Parent, Peripheral Neuropathy · Tagged children, circulation, Endep, endocrinologist, frustration at Diabetes team, loneliness, long term complications, Peripheral Neuropathy, tight blood sugar control, type 1 diabetes, Vitamin B1

I used to devote so much time and energy into providing interesting news and updates for my blog.

I wanted it to be a place where people could come and feel like they had taken away some helpful and positive information.

However, since Lance’s diagnosis of Peripheral Neuropathy, I ackowledge that even though I knew that his symptoms spelt trouble, hearing the diagnosis..twice..sent me back to the days when I was a newbie parent of a child with type 1 diabetes. I could function, cook and clean, do homework, wash the clothes, ensure that Lance’s blood sugar levels were in check, but I was a pretty tragic person when after Lance went to sleep. Oh, yes I was.

I have had to FIGHT like a demon to get Lance’s specialists to ackowledge that this condition is real and present in my eight year old son. I have spoken to countless people about how there are similar conditions that mimic Peripheral Neuropathy. I know this, but I have ALSO taken him to two podiatrists, specialising in peripheral neuropathy, and the other, Diabetic conditions ralated to the feet. Basically, they both concurred with the diagnosis. They also expressed their disdain towards Lance’s Medical team for being so lax towards a child with a diabetic condition that needs specific attention so as not to deteriorate further!!

Our Diabetes Educators are on my hit list at the moment. The ones that I have dealt with look at me with such gross suspicion, as if I have created the symptoms to get more attention for Lance…(Did I just write that??) Other’s have said, “Get him involved in sport-that’ll get his pain levels down, that’s if he DOES have it, of course.(!) And the Kingpin…”Why do you know about Peripheral Neuropathy anyway? There is no point in stressing yourself out about a condition that a parent doesn’t need to know about.”

(OR…IN THIS CASE I DID!!!!!)

It never ceases to amaze me…you don’t know enough about type 1 diabetes and you get a grilling for not keeping yourself educated, yet you bother to investigate what COULD happen in the future, and you are considered a wack job.

So, it’s the beginning of 2009. No more feeling sorry for myself or Lance. I fight everyday to keep tight blood sugars, his little fingers are calloused and black from all of the finger pricks I make him endure. He follows a tight exercise program that endeavours to keep circulation flowing well, and he is also taking a B1 supplement. His paediatric endocrinologist wants him to commence taking Endep, an ancient tricylic antidepressant that is used to block nerve ending pain. Seems great in theory, but it has a nasty side effect. Even on low doses, fellow patients have told me that they were barely able to move, they felt so “dopey” or “cloudy” and planted to their bed or chair. When I think of my eight year old medicated, or running around the block and following a lot GI diet, of course I am going to keep him of meds. However, if things digress, and it is necessary for Lance to be on medication for increased pain and uncomfortable sensations, well of course I am not going to deprive him from pain relief.

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A lot of the wonderful treatments available in the United States simply aren’t heard of here.

It comes down to a capsicum topical gel, Endep, exercise programs, tight control of blood sugar levels, or the dreaded word that strikes fear in the heart of every person with diabetes.. amputation.

Happy New Year everyone, I ask you to please keep an extra sharp eye on your child’s readings, so that you can continue having Happy New Years in the future, without extra specialists, medication, pain, discomfort….

I have loads of issues to post about, but I thought I should explain my absence first. I have many good days than bad now, and I spend a lot of time devoting myself to educating my family and local diabetes group that if Lance could get a complication at eight, then no one is immune. (In other words, it’s not just the “overweight, careless, long term type 2’s who don’t bother to take care of themselves.”)

My New Years Resolution is to continue educating and providing information about type 1 Diabetes, and assisting parents of newly diagnosed children. Let’s put it another way, the Health Minister will feel instant nausea when she sees my stationary in her mail pile. 🙂

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To Those Who Don’t Know Type 1 Diabetes…Here’s An Unforgettable Insight.

29 February, 2008 · Filed under Uncategorized · Tagged bravery, children, constant maintanance, family disease, silent disease, type 1 diabetes

http://www.youtube.com/watch?v=Z2uE0TlBZGc

Please watch and absorb……and bring the Kleenex!

I am in an internet kiosk with my son, watching his scarred fingers trace over the keys. He is oblivious to the pain, the discomfort. MAN! How does he do this? After watching this clip, I feel so alone. The Type 1 Diabetes Community is INCREDIBLE, but the frames of this clip are so simple, yet a replica of my life, my son’ life.

Please show as many people as you can the clip, it is a fantastic educational tool.

So much so that I can barely muster the strength to speak to my son for fear that my voice will break and I will not be able to let go of him.

To all the little pincushions., even if I didn’t live this life along with Lance, you would automatically be my heroes. Each and everyone of you. Your dancing smiles, your arms that are always prepared to embrace. People could learn such valuable lessons about how to live a better life from you.

Poetic. You fight for life and embrace it with gusto.

People who don’t value the blessing of good health could change their life from spending one day with you.

I have the pleasure to have met over 100 kids with Type 1 Diabetes in Australia, and I am friends with a few kids overseas through their parents.

I just want to scream at the top of my lungs how incredibly stoic, brave, heroic but at at the same time so oblivious as to what misery you go through.

Get your parents to give you an extra big hug tonight. Or if you know someone with Type 1 Diabetes, give them a hug and lots of love from Lance and me in Australia.

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Why Are My Child’s Legs Hurting?

9 January, 2008 · Filed under By Kate, From Parent to Parent · Tagged children, growing pains, how to relieve leg pains, leg pain, night pain, type 1 diabetes

OK I can’t help it.

Again, I have searches in my Blog Stats for “why does my son have leg pain diabetes” ( I have this question frequently,) so I have to address my experiences with Lance’s leg pains associated with Type 1 Diabetes.

I have spent literally hours, semi-asleep rubbing my son’s aching legs.

No doubt he suffered in silence as a baby, unable to express to me that he had leg pain, but now that he is chatters on all day, I still get the occasional..”Mum..my legs hurt.”

I have made a record of when leg pain occurs.

Firstly, check your childs’ feet and legs for any cuts, splinters, blisters or signs of infection. It is also slightly pedantic, but a temperature check is also worthwhile.

If all is clear, and nothing out-0f -the-ordinary is visable, there are some procedures you can follow at home to relieve your childs’ discomfort.

For Lance, he experiences what he described as “bone pain” (which has been ruled out as anything sinister, and he now accepts is equivilent to muscular pain.) It almost ALWAYS occurs at night time, whether he has exerted himself or not throughout the day. The one underlying factor I notice time-after-time is there is usually a high blood sugar reading, as in 16mmol/L or above.

The four measures of care that I go by in this situation is:

administer a safe amount of rapid or fast acting insulin to get the blood sugar level down quickly, but not enough to send him hypo!
Water. water. water!
massage, heat packs, warm showers
Nurofen ( as long as there are no previous ill- effects present or allergies, of course. :)).

Lance is a boy who has ants in his pants, so I know that he is suffering if he will lay still and allow me to massage his legs. I also give him a Nurofen Meltlet tablet; I figure I have covered all bases if I have got his blood sugar down, filtered his system with water, apply gentle massage with an aromatherapy rub (lavender in an almond carrier oil works well, and promotes relaxation and a good nights sleep also.) (Again, be aware of allergies, of course. 🙂 ) In a pinch, Olive Oil works just as well.

As soon as the blood sugar has dropped, (no lower than the range in which you feel comfortable in sending your child to bed,) the Nurofen works, he/she has enjoyed the relaxation benefits of a massage, and with heat applied, your child should feel better,be able to walk around and you will note a general improvement in temprement than before the insulin administration.

We have spoken to Lance’s doctors’ about the “Sore Legs Syndrome” and they both agree that it could be growing pains, or a symptom of elevated blood sugar, or both. Either way, children with Type 1 Diabetes cannot lose by receiving some extra TLC if they have leg pain. Having high blood sugar levels at night are dangerous, so the sore legs are a good warning sign to get that level down! DKA can sneak up very quickly!

(I remember growing pains myself and they were just awful. My mum would make me a hot water bottle and send me back to bed. )

Regardless, if the sore leg issue is becoming a regular issue, consult your doctor, just to make sure.

I hope that our methods prove beneficial to other parents and their cherubs who have leg pain.

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Type 2 breakthrough has people thinking Lance is cured…again

6 October, 2007 · Filed under By Kate, Diafrustration · Tagged children, enzyme, insulin, Type 2 Diabetes

I always read our local paper.

Not that it’s that local… over 100 000 people read it every morning.

Lance has featured in this paper 11 times now, in a desperate attempt to educate the people in our city and surrounding areas about the difference between Type 1 and Type 2 Diabetes. That, and the fantastic fundraising efforts he has contributed the the Juvenile Diabetes Research Foundation http://www.jdrf.org.au/ .

Today I was in our doctor’s surgery, waiting to see our family doctor, when I spied the paper sitting on the coffee table. I grabbed it and aimlessly flicked through, seeing nothing that caught my eye.

Except the “D” word.

Diabetes is one of the top ten words in my venacular.

There was another story today-this time about an older lady rejoicing over the findings of “a new drug that targets enzymes that reduces insulin production.”

I settled back and decided to find out for myself why in the picture that accompanied the article, she wore a jolly great grin on her face.

OK..so we have a lady who was diagnosed in 1999…overweight…family history. Nothing new there.( I don’t pretend to know half as much about Type 2 as I do about Type 1. Type 2 Diabetes is also a frustrating condition, especially when it appears in a young adult with perfect Body Mass Index and no family history. Or in a fit and healthy person that cops the diagnosis because of an unforunate gene pool. Not fair at all.)

Anyway, back to this lady, whom I shall refer to as “Vi.” Vi has got her hands on some evidence from the scientists of Medical Research at a prominent institute in Sydney about how this pill can restore life quality for Type 2 Diabetics.

The journalist who wrote the story took the liberty to contact the CEO from Diabetes Australia, who very wisely encouraged that promise came from this research, however “it will be a long road until something is available.” Awwww. So disheartening when you read those words. He then encouraged people to be aware of risk factors such as family history and carrying a few extra kilos. Well done, CEO. I appreciate it when CEO’s acknowledge progress, but continue to drive home the importance of awareness.

WHICH, is what I have been doing for the past two years. I care strongly for each of the 140 000 Type 1 Diabetics in our nation, and it pains me when the general public are force fed information about DIABETES that conjures up images of gluttony, greed, poor self worth accompanire with the notorious wobbling spare tyre image.

That is NOT the image the represents a Type 1 Diabetic.

We should be looking at sudden diagnosis, little tummies getting injected with insulin, tiny fingers with a drop of blood ready to be tested, a healthy lunch box lovingly packed by Mum/Dad or carer. However, we very rarely see that image through the media.

So having said that, Vi then goes on to say, with help from the journalist, that:

“children diagnosed would not have to use needles which could be stressful and it would make it easier for other sufferers.”

A terrible mish-mash of Type 1 and Type2 Diabetes offered up by Vi, and not researched by the reporter.

After reading that sentence, I expelled an audible gasp of horror which I had no control over. A concerned client asked what I had found in there that had caused me to feel like I had been smacked down by and drilled over by a jackhammer. I shared with her the sentence, and fortunately, she was a school teacher who had knowledge of the unpredictable road a Type 1 schoolkid walks down each day.

“Get your pen out and write to the Editor.” she said defiantly.

“That is giving people a false impression that kids’ can be cured by a medication that has only just been stumbled across, and is for a totally different condition.”

Thank you for letting someone with intelligence back me up and have other people hear it…

The hours, literally days that I have spent finding meticulously correct information and sharing our own personal journey about the insidious nature of Type 1 felt insignificant because of those few words.

My role as a Type 1 Diabetes advocate felt tarnished and pointless.

The four phone calls I received throughout the day from caring friends and family PROVED that the article had made people take notice.

My best friend in my town called my all afluster, saying that his boyfriend had faxed him the article from work.

He was SCREAMING down the phone with excitement, thinking that my beloved son could have a cure from a pill.

“I’m spinning around like I’m a Flashdance extra!” he exclaimed.

“Put your leg warmers back on, Jennifer Beals…it was a dud story. Thanks for your concern and care though.”

That’s one of the beautiful things about Type 1 Diabetes. People who have had enough experience with hypos and seeing fingerpricks and injections will even read into an article like this in hope that a little boy doesn’t have to suffer through each day anymore. Tres sweet.

So, on that note, Vi then goes on to say that since being diagnosed, her condition had improved thanks to education and facilities.

That part makes me sincerely happy. She is willing to try and kick Diabetes to the curb, I admire that in any person who gets a “D” tag.

“The best thing I did was join my local Diabetics group which helped me better understand Diabetes.”

Maybe we should all join up then.

Maybe Mr Howard should put a free information leaflet in every householders’ letterbox about the distinct and totally different symptoms and outcomes of Type 1 and Type 2 Diabetes.

I wish I could fake a smile like Vi did for the photographer.

Even the Cate Blanchett in me couldn’t pull fhat off.