Posts tagged circulation

New Beginnings (Again.)

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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It’s Getting Complicated.

I recently wrote about Lance and the shocking discovery of symptoms with a sinister familiarity to Peripheral Neuropathy. Now that I have the ability to look at the words without feeling extreme nausea, I wanted to give everyone who commented and sent encouraging emails an update.

Firstly, I have been very cool and calm when it comes to Lance’s night time groans and discomfort. I don’t want him to latch onto the fact that I am stricken with fear. I put my Cate Blanchett hat on, and while remaining completely honest with him, I cannot show him that I’m fraught with concern.

We have been to our GP, who has an amazing rapport with Lance. I dislike speaking about Lance’s Diabetes in a negative light to anyone when Lance is present. Therefore, I asked him to tell Dr Congo about his symptoms of hot, burning feet at night.

“Well, it doesn’t matter if it’s the coldest night, it feels like there is a bushfire in my feet. Sometimes I have to look at my feet just to check that they really aren’t on fire.”

Dr Congo turned his head towards me, searching for my reaction. His reaction made me want to be sick.

“Lance, tell me, do you get pins and needles often?”

“Everyday.”

“Can you point to where you feel the bushfire the most?”

Lance grabbed his ankle, then rubbed over the top of his foot, tracing his finger over blueish veins.

He also added that he has mild tingling in his lower calf.

Dr Congo pressed his middle and index fingers together on Lance’s foot. He sat in silence, concentrating.

He then performed a reflex test on Lance’s kneecaps. Normal response noted.

Dr Congo swung around on his chair and raised his eyebrows at me.

“Well, I need you to bring Lance in to have a DIabetic Assessment with one of the registered nurses. Then, once they have gathered the information we need, I’m going to refer you to a podiatrist who specialises in Diabetes complications.”

Those last two words.

I read them, I write them. Occasionally, I’ve even said them.

But no one has ever said them with such pathos.

I have also contacted his Diabetes Educator.

“What was his last A1C?” she asked.

“7.1” I replied.

“I’d say it’s a growth spurt, Kate. Seriously, kids don’t have neuropathy problems.”

“Really?” I asked hopefully.

“Well, when was he diagnosed? 3, 4 years ago?”

“It will be 6 years on the 1st November.”

“Oh. Listen, Charles is on duty today, can you please give him a call?”

(Charles is one of four endocrinologists who work exclusively with children. Unfortunately, we have never met Charles, and he is unaware of Lance’s history.)

“Peripheral Neuropathy only occurs in older people with poor control and high AIC’s. Oh, and with type 2 diabetes.”

My jaw fell in astonishment.

AN ENDOCRINOLOGIST MAKING FOUR BLATANT GENERALISATIONS IN VIRTUALLY ONE SENTENCE.

“I’d just like to point out that before Lance started on insulin infusion, his control was shocking, he had massive fluctuations due to growth hormones. He was having up to 7 injections a day to keep him in single digits, and it was really hard work to achieve that.”

“Nup. Doesn’t make any difference. He’s type 1.”

As much as I was desperate to believe him, I was angry that he was brushing aside my concerns, and his slap-happy approach to pinning peripheral neuropathy onto lazy, irresponsible adults with type 2 diabetes left me postively livid.

Our endocrinologist is in Vietnam on a 4 week holiday. He left the day before I called him.

Lance’s Aunt Kel is a sports scientist, who is currently completing a two year trial with a group of men and women in their sixties,all who have type 2 diabetes. She is excited to present her thesis which will reveal that each of the particpants blood sugar levels have overall improved dramatically as a result of strengthening muscles through weight training.

I spoke to Kel last night, and mentioned Lance’s symptoms.

“Oh my God.” she whispered.

“I KNOW!” I exclaimed, relieved that someone understood my concerns.

She immediately launched into exercise specialist mode and set Lance 100 toe lifts (quick lift up onto toes, and slow drop on the way down) a day. She encouraged plenty of foot movement, toe wiggles, trampoline, circling his feet, all in an attempt to improve circulation. I immediately felt so much relief from hearing advice that was positive and beneficial from a professional.

So, Lance has commenced his toe lifts, we have an appointment with Dr Congo tomorrow who will write Lance’s assessment and then contact the podiatrist for an appointment.

I have incorperated a 10 minute massage after Lance’s shower. I rub until I can feel warmth exuding from his feet , and it is providing him with a little relief.

There really is nothing more that I can do, except to try to remain positive.

I will give another update after the assessment and the appointment. Looking at this has made me remind myself that Diabetes is not just about insulin therapy. As a parent who is responsible for educating my son about how to take care of his condition, I acknowledge that’s its so important to remain quietly vigilant everyday. Just little things could make a mammoth difference to a complication-free adolescence. Now that we’ve passed the five year mark, we need to add some new specialists into our diabetes management program.

As much as I do worry, I am constantly amazed at Lance’s ability to accept what accomanpanies diabetes. Right now, his biggest worry is whether he’s getting a Lego truck for his birthday.

The Birthday Present. (Well, one of them. I'm hopeless.)

The Birthday Present. (Well, one of them. I'm hopeless.)

(It’s sitting up in the top of my cupboard wrapped between pillows and blankets. He looks at a Lego catalogue everyday, and studies intently the detail and pieces of this truck. I’ll have an 8 year old in 26 days, and he’s simply amazing. :))

 

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