Archive for Coeliac Disease

A Complete Day In My Life-From Beginning to Blessed End.

8.00am: I am shaken awake by Lance. I have to literally pry my eyes open with my fingers to prevent myself lapsing back into slumberland.

8.05am: Fingerprick number 1 of the day. This will determine how much insulin I need to give Lance to keep him safely scooting along. It’s 9.5 mmol/L, which I was pleased with.

8.10am:  I shuffle to the kitchen, where I pass a yawning Luna. When he knows I am headed for “food room” he bounds ahead of me, and begins horrible tom cat meowing. Then I hear “pat pat pat pat” behind me, it is Chino. He has just had a morning tussle with Lance, but is now urgently looking at the front door. I scurry to the door, let him out to do his business, wait for him to come in again and shut the door. I get two bowls and dispense Luna’s food, Lance dispenses Chino’s and I take Luna out of the room to eat behind a sliding door. Chino inhales his food, and then is taken outside as he enjoys a quick bask in the morning sun.

8.30am: The pets are always best to feed first. With full bellies, they are much more docile and pleasant to be around. However, now the debate with Lance begins. He must take oral medication daily for his newly diagnosed gastro reflux disorder, and he still finds a reason every day as to why he should not have it. (Granted, it is repugnant to the tastebuds, in flavour and texture.) We decide on toast with peanut butter. Half way through making it, he asks if he can have one slice with jam. I pour a glass of pure fruit juice, grab 1 multivitamin, 1 fluoride tablet and 2 calcium capsules and place them on his breakfast tray. I note that his medication is still sitting untouched. AGAIN, I explain that he will have pain and discomfort whilst eating if he does not comply with the doctor’s directions. He huffs and puffs and throws it down his throat, slamming the medicine cup on the table in disgust. I know it’s not directed at me. It’s just one more unpleasant thing for him to have to endure everyday. During the consumption of breakfast, I dial up the correct amounts of insulin and hand them to him. He gives himself two injections without a wince or a blink, and lets me know when he has finished with them. I dispense of the sharps, and replace the insulin. He takes his plates to the kitchen sink. I often have to stand and watch him drink ALL of his juice. It is the the key ingredient in getting him to morning tea without any glitches.

9.00am: We both undress from our pyjamas. Lance asks if he can stay in his pyjamas because his shirt has Optimus Prime on the front, therefore, making him feel more “powerful.” He then looks for his beloved karate pants. and upon discovering that they are in the washing basket, he looks through his closet, and grabs something that will match his shirt. His metrosexual tendencies have been handed down from his Dad. Colour co-ordination is a must.

9.10am: We bring Chino in and let him know it’s time for school.

9.15am: We begin official school procedings. We start with a fingerprick, and then recite the words to Advance Australia Fair. (It’s in the curriculum..sigh.) We then begin our addition and subtraction tables. I throw random questions at him to catch him off guard, he never skips a beat.

9.45am: We commence four pages of Word Building in which compound words, silent letters and Capital letters are discussed. He makes my heart melt as I see that huge pencil in his little hand, the concentration etched into his face.

10.15am: Morning Tea. I have prepared a gluten free slice the evening before, and we both sit together and enjoy a piece. I ensure that Lance has a big glass of water as his blood sugar level is 14.5mmol/L.

10.30am: We go outside and learn about primary colours. Lance doesn’t like his hands to be dirty, so he isn’t the biggest fan of paint. We then practise throwing the ball to each other to improve his hand and eye coordination. The ball lands on Lance’s Favourite Neighbour’s roof. Sigh.

 10.45am: Reading. Lance is a whiz at reading. The only words that trip him up are “through”, “though” and “thorough.” He is expected to sit on the floor and listen to one chapter of an unillustrated book. We then have comprehension questions and discuss the characters in the story. He will then draw a picture of his representation of what I read. It is then his turn to read aloud to me. He is aware of punctuation, and I adore that he doesn’t read in a monotonal, deadpan voice, he prefers to give animated voices to each character, complete with body language. He learns that he must be a  lion when reading, not a mouse. Project, project, project that voice!!!

11.30am: Lance is looking restless and pale. I stop everything and reach for the glucometer. We need an early lunch, as Lance had a rapid decline to 3.2mmol/L.

11.31am: 6 Jelly Babies are given to get sugar levels up quickly. I then heat up earlier-prepared gluten free pasta with tomato based sauce and a chunk of gluten free sour dough bread. Both of these items are low GI so I hope that this will pull him through to at least 2pm.

12.00pm: Lunchtime. We already did that, so we do some yoga and bicep curls instead. Let Chino out for a frolic and a chicken wing.

12.45pm: Let Chino back in and let him know that it’s back to work. I look at him with envy as he curls up in his cushy bed and twitches whilst in the deepest of sleep. Lance is bored with the workbook we are doing, and wants to skip to the next step. I tell him that he needs to finish the test to send in to his school. He flies through the work and finishes the test. I realise I have to order more workbooks.

12.50pm: Indian telemarketer calls telling me that I have won a mobile phone. “I’m sorry, I don’t have the time…”beep beep beep beep.

12.52pm: Take Lance to the computer desk for a change of scenery. I get him to show me step by step how to turn on the monitor, the computer, and sit comfortably in the chair. He is able to get to “Favourites” and find our “Learn to type” program. I gently remind him that he needs to place his fingers on the home row. He snaps, “I know! I was just about to do it. Um, sorry, Mum.” He practises typing ‘Dear Mr Rudd (enter enter enter) We need a cure.  (enter enter enter) From Lance.(enter) JDRF Youth Ambasserder. I don’t even attempt to destroy how well he has done by telling him that he spelt a word wrong in his very prestigious title. He shows me how to exit the program, and turn off the computer safely. We collect his printed letter and place it with his other work to be sent off to school.

1.30pm: We learn about the country of Sudan. We find it on the map, and practice writing it and spelling it out aloud. “Soodan.” The English Language is so ridiculous. He is given activity sheets that show how to identify their cultural dress, what a typical family looks like, what food and drinkable water is available, and the physical characteristics of a Sudanese person. Lance dresses up as an Sudanese boy, and looks in amazement of the mystery that is Arabic script.  I read a story borrowed from the library about a Sudanese grandfather sharing a story about the beauty and wonder of Africa with his grandchildren. Lance asks possibly 20 questions as to how they survive with no electricity in some homes.

2pm: Spelling test. Lance sharpens his pencil and lines up his collection of erasers. He has 20 words to spell correctly, write neatly, and in the lines in order to get 1 mark per answer. He gets 19 out of 20. “Cook” is the word that trips him up. He explains that Kookaburra is not spelt with a “C” so why shouldn’t “Cook” be spelt with a “K”? Again, the English language. Tough to explain to kids of his age who are brimming over with questions.

2.20pm:Finger prick test. 7.2mmol/L. I pat myself on the back for doing well with lunch.

2.25pm: We practice drawing in straight lines, and then cutting along them. Lance makes a woven mat with strips of coloured paper. He asks why I got him to do such a “babyish” activity. I explain that it was an activity to show how well he can follow instructions.

2.45pm:I ask him how to spell Sudan. I ask him how to spell Cook. We finish with a fast game of Simon Says. He is tough to trip up.

2.58pm-The “bell” goes off. Lance helps me tidy the “learning centre” so that it is ready for tomorrow.

3.10pm:BSL-4.2mmol/L. Lance refuses to believe that the glucometer is correct. I am astounded when he actually insists on setting up his other glucometer to see if it is actually a correct reading. It says 3.7mmol/L. He looks dejected and disappointed.  He has 2 peaches, 2 plums and a home made muesli bar. I insist he has his second big glass of water for the day. He applies sunscreen and hat, and races straight for the trampoline. Chino is at my feet, staring up at me with his sad brown eyes. I spend some time reviewing general obedience with him in order to earn his afternoon treat. After much praise and a hug, Chino bounds out the to the backyard to engage in tug-of-war and races up the driveway with Lance. I put a fresh bowl of water at the front and the back of the house for the dog and the cat.

 3.30pm: Lance has a very recognisable and loud voice, and I hear him chattering at the front gate with two boys on their bikes. One of them says, “Do you go to school?” Lance replies,”Yeah, I’m in Year 2 at Home School.” I smirk to myself as the boy asks where Home School is.

3.35pm:I start making a batch of lemon and poppyseed muffins. I quickly whip up the mixture and put them in the oven. I then disect a cob of corn, some carrots, sweet potato, beans and place them in a sealproof container for easy preparation for dinner. I discovered today that Chino likes raw beans.

3.50pm– Lance is gossiping with His Favourite Neighbour. He tells her about the ball incident. More disturbingly, I discover that he has learnt to read incoming messages on my mobile phone, and he recalls word-for-word a message from “Steve.” His Favourite Neighbour asks who Steve is, and Lance replies, “I don’t know, but I’ll be sure to let you know when I find out.”

4.00pm:Lance is called inside and given a talk about reading other people’s private information. He instantly understands and replies “Whoops…” very quietly. “Sorry Mum.” I give him permission to leave. I give Chino permission to leave too.

4.05pm:I order some new workbooks for Lance over the internet. Look over some received emails. Look up how to put a lock on my mobile phone.

4.15pm:I make my daily call to my parents to ensure that everything is ok. It is.

4.30pm:I get a call from Ophelia, asking me if I would like to have coffee with her that night. I am so envious that despite also being a single mother, she is able to leave her children with their Dad at anytime. I explain that I haven’t had much notice, so I couldn’t get a babysitter. She suggests bringing Lance along too. I briefly consider and then quickly decline. Ophelia has some adventures that aren’t suitable for little curious ears.

4.45pm:I check the mail box. Nothing exciting, except a copy of Lance’s latest health report from his doctor. I have to send it to his School. I shudder when I read the detailed description that is given of Lance’s recent gastrocopy findings and decide that it is best for me not to continue reading. I put it in a envelope and ask Lance to accompany me to the post box before 5pm.

4.50pm: We show Chino his coat and lead, and he immediately runs and waits for us at the gate. I do a double check that I have enough hypo supplies. I grab the letter, the hypo bag, and Lance gets Chino ready for his outing. The walk to the postbox is peppered with homes with highly territorial dogs, all that know us only too well, but continue to bark ferociously anyway. Lance drops the letter in the postbox and we cross the road and call in at the NDSS pharmacy to get some more insulin pen needles and lancets. I am asked if I am “stockpiling” lancets and pen needles, as the computer says that I shouldn’t have run out yet. I have to sign a declaration form acknowledging that we perform 10 fingerpricks a day, and sometimes up to 7 injections a day. Sigh.

5.25pm: Chino heads straight to his water bowl as soon as he is de-coated and de-leashed. I have 30 minutes to make dinner. Chino and Luna feast on chicken breast.

6.06pm- I serve a vegetable medley, potatoes au gratin with a pan cooked chicken breast for us both. We have a muffin each for dessert. I take a bite and discover that they are positively vile. Lance is picking the top off his. I tell him to do the best he can with it, and endure the hideous taste of whatever ingredient is used to disguise the blandness of some coeliac packet mix products. We are still adjusting to a gluten free diet. Food tastes SO much better with wheat…

6.20pm: I realise that Lance did not consume enough carbs in his evening meal. I go much lighter on his long acting insulin and 1 unit less on his rapid acting insulin. I serve low fat ice cream with fruit salad. Lance is doubled over with stomach pains. He cannot bear to touch his dessert. I prepare his dose of medicine-he surprisingly drinks it, which lets me know that it actually must help. I sit beside him, and massage his legs until the cramps subside. I am expecting a hypo soon. I give him a glucose tablet and praise him for having his medicine without creating a huge deal.

7.00pm: I help Lance with washing his hair. He tells me that the hot water feels good on his tummy. I can’t help but feel angry that he has to endure pain. He is starting to associate food with pain- a thought that terrifies me immensely.

7.30pm: Lance is dressed in his pyjamas, and I let him watch a DVD of his choice. Chino knows that Lance is down in spirits. He sits beside him and rests his head on Lance’s knee. Lance begs me to come and see how cute they look together. He asks for a photo, I oblige, only to discover flat batteries. I quickly slip them out and place them on charge.  I have two students from 7.30 until 9pm. They are both late. I hear Lance whimpering during the tutorial. I allow 10 minutes extra to each student for the inconvenience of me popping in and out of the room.

9.30pm: I make Lance some popcorn with gluten free icing sugar. He washes it down with a glass of Apple and Pear Juice, as he is 2.1 mmol/L.  He refuses every suggestion I offer him. We settle on vege chips, he is allowed 10 of them which equates to 1.5 serves of carbohydrates.

9.45pm: DVD is turned off. Lance is yawning up a storm. I prepare his toothbrush, and he does a very ordinary job of cleaning his teeth. I cannot allow him to go to bed with half-brushed teeth, so I ask him very gently if he will let me do it for him. He nods his head, and I realise that he is still only a baby, living in a world that is full of restrictions and regiment. He opens his mouth as I thoroughly clean his new teeth, back teeth and check for mouth ulcers etc. I then floss his teeth for him.

10.00pm: Lance chooses 2 books. I read one to him, he reads one to me. I find my eyes struggling to stay open as I listen to his sentences. I then drag some energy from somewhere and read him two chapters of “Captain Underpants.” I conclude with a bsl-17.6mmol/L. This is what happens when I tinker with insulin, even if it is to prevent a hypo. Lance ends up with a hyper instead. His body is used to the same dose, and reacts to extremes if  I change the routine. I give 1 unit of Novorapid, in the hope that his 2am test is less that 12mmol/L. He dozes off, and then is suddenly fast asleep.

10.20pm: I let Chino out for his pre-bedtime eliminations, he feels the bite of  cold wind and quickly runs up the stairs, curls up in his nest and gives a loud groan that almost suggests relief to be in a soft, warm bed.

 10.30pm: I check to see if anyone is on MSN Messenger and is willing to chat. The only people other than Lance I have spoken to today were the Indian telemarketer, my parents and Ophelia. Fortunately, some friends who live without Diabetes are online. I get my second wind and engage in cyber chat for a while. I usually stay up until 2am to do Lance’s final blood test. If I go to sleep, 90% of the time I turn off the alarm without even knowing it.

Midnight: I begin the lesson plan for the next day. I search the internet for creative ideas. I make up some cardboard signs to put on our world map. I plot Lance’s readings for the day into Sugarstats.com.

1am: I sweep and polish the floorboards, and clean the kitchen thoroughly. I usually do my washing at this time also. It is actually peaceful and calming to hang out clothes on the washing line in the night .My cat rubs up against my legs and we spend some time together.

1.3oam:I contemplate having a shower. I decide to do it.

1.32pm:I hear footsteps. Are they human or canine…they are both.

1.33pm: I jump into a robe and help my son find the toilet. I ask him to wee on a ketone strip. He has a small amount of ketones. His breath smells like Fruit Tingles soaked in Nail Polish Remover. He tells me he has no saliva in his mouth. I give him a bottle of water, and prepare an injection of insulin. He needs it desperately, because he is 22.3mmol/L. I want to sit on the floor and cry.

1.45am: I carry him back to bed and contemplate how much insulin I should give. I decide upon 3 units of Novorapid and 2 units of Levemir. Lance’s legs are aching-a sure sign that he is hyper. I ask him if he wants a warm shower, however he can barely stand. I turn the electric blanket on and rub his legs whilst I study his face. He is staring straight ahead, looking at nothing in particular. The water is going down like he has been bushwalking in 35 degree heat. I give a children’s Nurofen tablet which really helps with the leg pains.

2.00am:I realise I am still in my bathrobe. I got a bum deal in the shower tonight…I get into my pyjamas.

2.05am:Lance is chattering loudly, and I remind him of the time. I read him a few more chapters of Captain Underpants.

2.30am:I try to find a finger that isn’t covered in fresh dots. Lance tells me that finger pricks don’t really hurt like they used to. I don’t know how to feel about that. He grabs the lancet device and does the “click” for me.

2.31am: Hmm. A drop of a whole 3mmol/L. I want to scream at the glucometer as it flashes “Check Ketones.” Lance needs to use the toilet again. I can smell ketones on the sheets and pillow cases.

2.40am: We are both giggling at Chino, who is “running” in his sleep. He has dreams where he sounds traumatised-as if he is in a brawl with a Great Dane. He audibly whimpers in his sleep. Lance roars with laughter. I give him a gentle shake, it’s no use the three of us being trapped in a nightmare.

3.00am:BSL: 16.6mmol/L. Lance is yawning. I do a blood test to check for ketones and they have cleared. Lance has to be up for swimming in 6 hours. I have to be up to get ready for swimming in 5 hours.

3.10am: I turn off the last burning light in the house. Lance is talking about spiders on a single strand of web, pole dancing down onto our faces. I remind him that we have just recently had the pest man spray our home for spiders..little does he know but we have had a redback plague. I found dead spiders everywhere for days after the pest man did his job. My mind wandered off, hoping that the fumes he is exposed to everyday don’t cause any problems with his health. My memory jolts back to a statement he made about his 2 year old suffering from a rare neurological disease, and an eye problem. Why does my mind go to these places? I think it’s commonly referred to as hysteria.

3.2opm:There has been silence and no movement for 10 minutes. “Mum, do you know how many attack points Blue Eyes White Dragon has? Mum? Ohhhhhh.” I had to let him know through silence that I was beyond the point of exhaustion. He was soon breathing heavily after 5 minutes. That’s the last thing I remember.

 

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What is Coeliac Disease And What Are The Symptoms To Look Out For?

Coeliac Disease is a condition where the lining of the small intestine is damaged or scarred due to a sensitivity to gluten, a protein found in many foods.

Being an auto-immune condition, it is often diagnosed in people who have Type 1 Diabetes. In general, an estimated 1% of of people are affected, in comparison to 10% of  the Type 1 community.

People with undiagnosed Coeliac Disease are unknowingly damaging their intestinal wall each time they consume food with gluten as an ingredient. It makes it very difficult to absorb nutrients from food, leading to deficiencies that are required for growth, wellbeing, and healing. An undiagnosed child can have issures with growth and development, and like all good auto-immune diseases, has several long term complications if not diagnosed and treated. Osteoporosis is usually on top of the ladder, along with infertility, miscarriage, tooth decay and increased risk of intestinal cancers.

The symptoms of Coeliac Disease are extreme and very uncomfortable, therefore making it relatively easy to diagnose in children.

Fortunately, any children who are diagnosed with Type 1 Diabetes are automatically screened for Coeliac Disease. Annual blood tests can also show any abnormalities that can alert your doctor to investigate further.

The most common symptoms include:

  • fatigue, lack of energy and lethargy
  • low iron levels
  • unusual or excessive wind or burping
  • feeling full after only a small amount of food
  • bloating or stomach distention
  • stomach cramps
  • a noted change in stools, ie. diarrhoea that is frequent and with a foul smelling odour
  • constipation
  • weight loss
  • poor weight gain or delayed growth
  • delayed puberty

Some less common symptoms in adults include:

  • easy bruising of the skin
  • mouth ulcers
  • infertility and miscarriages
  • muscle spasms/cramps
  • dental problems
  • poor memory/concentration
  • irritability
  • join and bone aches and pains

If you have diabetes,  you may also hae unexplained high and low blood sugar levels, and find it difficult to have good control of your glucose levels.

If there are any symptoms listed that have suddenly set off alarm bells or light bulbs, mention them to your doctor. There is no need for you to suffer, and you can easily reduce your discomfort. Read on!

Coeliac Disease doesn’t go away. (If you already have Type 1 Diabetes, this part of the diagnosis won’t be so tough to accept.) However,when you remove gluten from your diet, the wall of the intestine heals, and nutrients can once again be absorbed, the uncomfortable symptoms will improve out of sight and you will generally feel much better.

But…

Type 1 Diabetes and Coeliac Disease creates a huge problem for young children, as they often can no longer eat their favourite foods; including foods that were beneficial for keeping blood sugar levels steady. Any food or drink products containing gluten must be eliminated from the diet to achieve relief and regain good health.

However…

In recent years, almost all supermarkets and certainly health food shops now stock a broad range of Gluten Free Products. There is no reason for your child to miss out on the occasional slice of cake or even daily toast or sandwiches. A diet rich in fruit, vegetables and grains will help balance out the often high fat and sugar content in Gluten Free Products.

So, who can help and set you on the right track?

JDRF Australia have lots of reading material about how to intergrate Coeliac Disease and Type 1 Diabetes,  as well some fabulous recipe books. My personal favourite is Great Food, Gluten Free, by Sheila Adsett. It is available from the JDRF website, or the Coeliac Society of Australia. Sheila has had years of experience in creating child friendly recipes; she has two beautiful, healthy daughters who both have Type 1 Diabetes and Coeliac Disease.

The incidence of Coeliac Disease has become so prevalent that many cafes and restaurants now have one or a  few Gluten free items on the menu. Many modern recipe books will have a section with several delicious, gluten free recipes.

A dietician will be a great help when you are first diagnosed. They can help work out what foods work best for you as an individual, and not as a statistic.

Type 1 Diabetes and Coeliac Disease is a double whammy, I admit, and sometimes it can be very frustrating having to find special ingredients, and phasing out those that have been life long favourites. If your child is very intuitive, they will soon let you know that biscuits made on cornflour taste different (but not unpleasant) than those made on wheat flour. However, they will soon notice that the cramping and sudden rushes to the toilet will have stopped, so eventually, things do fall into place. The most dramatic change that I have noticed since Lance’s diagnosis is that he no longer has irritable, moody periods during the day. He is always bright, happy and brimming over with energy.

For more information, support and membership, contact the Coeliac Society Of Australia.

 

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Project365:Australia- Day 33: My Brain Says Yum And My Tummy Says Ho-Hum…

Today, Mum, Chino and I went for a fast power walk. Chino was crazy; he knows all the houses where there are other dogs. Mum said that Chino walked us instead of us walking Chino.

When I got home, I practised some new moves on the trampoline. I have learnt some new skills and I think I have become really fit, I can do 100 jumps easy peasy without puffing.

I started feeling a bit weak and I had a headache that was behind my eyes. I thought that I should go inside and grab some food. I went to my hypokit and grabbed some banana muffins. They were SO good..I had one-and-a half, and washed them down with some water. I went back on the trampoline and felt energised. I imagined that I was a Bionicle figure that has energy pumping through his body, and no one could defeat me.

Mum came out and did a blood test. I was 6.3mmol/L. She gave me the thumbs up. She asked if I needed a top up and I told her that I had a little tummy pain starting. She told me to have a break from jumping.

Suddenly, I had the feeling that I had go to the toilet..really badly, and not for Number 1 either.

I started getting really bad cramps that were so bad I had to bend over. I felt like crying, and I started sweating.

I had really bad diahorrea.

And again.

Mum was baffled. I had the same symptoms as though I’d eaten something with wheat or gluten in it. I had, but I didn’t know it. My grandma gave me 2 banana muffins yesterday and I just stuffed them in my hypo bag and I didn’t even think that they may contain gluten. I told Mum that I had eaten the muffins.

As a joke, she sighed, “Oh Muffin….”

She hugged me tight and told me that everything was OK. Living with this new way of eating is very tricky.

However, I could still feel the  Levemir I had this morning working because I was super hungry. Mum and I worked out what we were going to have for dinner. We decided on chicken breasts cooked in a little olive oil, potato bake, and home grown beans, corn, and some peas. I suggested the peas to make up my five vegetables for the day. When Mum gave it to me, it looked soooo good, and it smelt amazing. I thanked her for going to the trouble for making what I want. Mum is always in the kitchen these days.

My Mum made me dinner, but my stomach said I couldn’t eat it. Arg.

In this photo, is my dinner. I only had two mouthfuls, and I felt like I had eaten 3 litres of ice-cream. This was the best I could do. I had to lie down on the sofa because my tummy was hurting so much. It was as tight as a soccerball. I felt terrible. I felt scared too; this is how Coeliac Disease works? I have a lot to think about when it comes to food.

Coeliac Disease is another auto-immune disease that often accompanies Type 1 Diabetes. Lance has officially been diagnosed this year, and, after 18 months of  misdiagnoses and brush-offs from his medical team,despite blatant symptoms, he has been feeling terrific after commencing a Gluten Free Diet. Today, he consumed some gluten by sheer accident, and he was still uncomfortable six hours later.

Of course, Type 1 Diabetes HAD to intercept this unfortunate turn of events. As Lance was unable to eat more than two mouthfuls of his evening meal without feeling excruitiatingly full, his blood sugar dropped to 2.1 mmol/L. For a brief moment, I was alarmed that he might refuse to eat, and I would have to resort to a glucagoninjection. However, he ate 3 glucose tablets which whizzed him up to a safe 9.2 mmol/L.

I feel comfortable in knowing that I haveType 1 Diabetes licked. I know it’s behaviour, it’s moods, it’s temprement, and how sometimes it makes no sense no matter how much you examine the evidence. However, now I have this other condition to learn about,how it affects Lance day-to-day, and also how it affects Type 1 Diabetes, just to make things that little more interesting. There are hundreds of vicious circles everywhere you turn. Every decision I make always is cancelled out by one of the two conditions. I know it will get easier, but witnessing my son in agony and discomfort after two mouthfuls of food was bordering on ludicrous. On a “normal” night, he would happily consume the pictured meal and have great blood sugar levels for 3 hours or so. Tonight, he was a limp, whimpering mess on the sofa, 40 minutes after his attempt at dinner. We have both decided that we won’t let this conquer us, and we will learn to live with both conditions, and show them how to have some decent manners! Lance summed it up it a nutshell as he cautiously climbed into bed,his stomach still sensitive.

“Oh Mum. (Sigh.) I’m not tired from our walk today or from jumping on the trampoline. My brain is tired from thinking and worrying about food.”

Insulin is not a cure.

 

 

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Blogging Out Loud..Lance’s Health CheckList.

I have to mentally prepare myself for a few challenges in the months ahead.

1. Lance is having dental surgery in the chair, with Local Anaesthetic and Nitrous Oxide (laughing gas) for pain relief. (14 needles in his gums. At least-he won’t feel a thing!) He has to have some baby teeth removed that are causing him pain as a result from gum disease that has reached the nerves- apparently not unheard of in Type 1Diabetes according to the dentist.. That’s ok, I trust the dentist, she is fabulous with kids, and he is going to get his adult teeth very soon, shiny and new. It’s a bit of a stress on my bank account, but when it concerns Lance it’s null and void.

2. I have fully fitted out my kitchen so that Lance can grab a snack and we both know it will be gluten free, and all of my unopened ingredients that contain gluten in my pantry have been packed up and donated to struggling families. I have a bread machine, even though people tell me gluten free bread from a bread machine isn’t that wonderful, but I’m going to give it a try. People in my community have been so supportive and wonderful, giving me tips on shops that have great gluten free section, and a  baker that especially prepares baked goods for coeliacs and people with food allergies. I am also lucky that I live in the same street as a fabulous little cafe with divine ambience, and lots of gluten free, low fat treats. Interestingly enough, in the same building is Lance’s dentist, the pharmacy where I get his supplies, the pathologist, the optometrist, and an after hours doctor. It’s fantastic to be able to take care of everything that is necessary regarding Diabetes and then walk away from it, back to our cottage.

3.I have managed to get Lance an appointment with the Endocrinologists of ALL Endocrinolgists, (well, paediatric ones anyway,)who happens to be the gent that diagnosed him. I am eagerly waiting for a date for this appointment-at this stage, I know it’s sometime in late February.

4. Lance made an interesting comment about a burning, painful sensation in his feet last night. My heart began to accelerate, but instead of panicking,or looking up websites, I am just going to discuss it with his doctor. Lance is blissfully unaware of conditions like neuropathy, so it was a shock to hear him say that he experiences an identical feeling a few times a week. We definitely ruled out that it is not “pins and needles.”

5. Lance is getting a lot of cardio-vascular workouts thanks to his trampoline! He just loves it! He’s on it before breakfast, and intermittedly all day long. I can see muscles popping out all over the show!

6. It’s time for bloodwork and urine analysis-again!!! How those three months fly past!

I guess I just needed to make a Diabetes “to do” list for the next few months. I feel a lot better about it all now that it is organised “visually.”I am going to take each appointment at a time, and not worry/obsess about them ALL- I know how toxic that is, for everyone concerned. It will be a wonderful day when the appointments are over and we can return to our regular scheduled program.

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Project365:Australia-Day 28:These Are The Gluten-Free Days Of Our Lives

I have another auto -immune disease now.

Mum says that it is a “complication” but I know she is saying that to make it sound not as big of deal as it really is.

I have Coeliac Disease too, often spelt Celiac Disease, sometimes known as Sprue, or Wheat Allergy, except it’s not an allergy at all. If you hadn’t noticed from the subtle hints in our other posts. It means I can’t eat food with wheat products in itever again. I just wasn’t ready to talk about it yet.

My Mum has a book of all the funny things I say.

We were looking through it together, and when I was three, I said to her;

“I am Nothing Boy.

I have no name.”

I don’t know what I meant back then, or why I said it, but it makes me wonder…but I don’t know what.

 Like Type 1 Diabetes, it has no cure, it is has long term complications, and it can be life threatening. (NB-Added by Kate-Lance doesn’t need to know these elements of the condition yet;we are working on a day-by-day adjustment scheme.  )I can’t eat Vegemite.

Not a happy little Vegemite

What type of Aussie Kid am I if can’t have Vegemite? There is a gluten-free imposter, but I watched Mum’s face carefully and she almost gagged. She said she would never make me eat it,  unless I liked it. Not this little red hen.

I can’t drink Milo. Sometimes, if I was feeling low, I would have a glass of Milo and milk and all would be fine within minutes. No more of that.

I’m still an Aussie kid-with a strange endocrine system

I can’t even eat pasta. They have a gluten-free version of it too, but it’s not the same either. It’s  squishy and tastes like rice, even though I love rice. Guess what though? It has gluten in it!!!

Mum and I went to the grocery store and found some foods that would be “Gluten Free” and that I would like.

Ummmmmmm……

It was hard work.

There must be a lot of people with Coeliac Disease because the place we went to had a whole aisle with gluten-free foods. I felt guilty a bit about complaining and being upset. Still, I am. I’m allowed to be annoyed. Just like the other coeliacs were when they were first diagnosed.

In this photo are some of the foods that we brought home. I have tasted the nut bars and they were ok. Gluten Free Foods are double the price.  This makes things more expensive when Mum goes shopping. I watched her pay the lady, and she handed $50 after $50 after $5o note to her and we only had about five bags of take to the car. Mum is going to eat like a coeliac too, so I don’t have to feel like I’m the only one. She said we might feel a lot better without eating gluten and wheat products. She said a lot of famous people go on wheat free diets even who aren’t coeliac, so I’m pretending to be Zac Efron at the moment.

Somethings missing here….

All of these foods are gluten free or free foods. Free foods in diabetic lingo means I can eat lots of them and they won’t harm my blood sugar. Luckily for me, I like gherkins!( In America, I think you call them “Pickles.”) There is gluten free icing sugar, gluten free pasta, gluten free Vege Chips-which, I have to admit are delicious-but too many and they shoot my levels up. AARRGGH! We also have gluten free nut snacks, gluten free rice noodles and hazelnuts.

Diabetes isn’t just about having insulin or checking Blood Sugar Levels everyday. There are so many little side dishes to the MAIN MEAL and you have to learn to chew politely and eat whats put in front of you.  Some people get skin conditions. like psoriasis,ringworm, athletes foot, jock itch for entree. Every kid with Type 1 Diabetes has a heightened chance of facing coeliac disease, or thyroid problems,  and a frightening chance of vision problems, or without early  detection, blindness, as the years rumble by.

 If there was ever two illnesses that were ironically ill-suited , these two would be up there with the worst. 

A loaf of gluten free bread is almost $5. A box of gluten free pasta is over $3. Healthy snack food that look appealing to children are almost $7 a box. Untreated Coeliac Disease can lead to a whole new ballgame of long term complications. The only treatment is to avoid Gluten totally. 

When my doctor gave me the final test results, he was speechless. He has grown to love Lance, and is inspired by his determination and resilience, and the ability to always have a joke or a laugh, the way his little arms instantly wrap around his tall, chocoate skinned  body when we leave the surgery. Lance knows that this man, who is equally as dear to me, has saved him and made life saving decisions when the doctors’ on duty at the hospital haven’t.

 He just put his hand on mine. Finally he said in a hushed,monotone voice, “This is just terrible.”  I looked up and he had his hand covering his brow, as if the sun was too bright for him.  He couldn’t look at me, but being the gentleman he is, proffered the tissue box in my direction. He understands what a battle it has been with the random episodes of  severe, life-threatening hypoglycamia and Lance. He has performed miracles and gotten us appointments with highly credible dieticians who have in turn worked tirelessly with Lance designing a Type 1 Diabetes kid-friendly diet.We were just starting to reap the benefits of hard work and dedication, and now we are back to Sqare One again. Of course, you can imagine I understood his devastaion.

I won’t let this destroy  me like the last diagnosis. Type 1 Diabetes has made me too tough and determined to drown in my own tears and smile sweetly for everybody else.

So, On we go.

 

Insulin is not a cure.

 

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