Night time basal rate change.. the 2 hour waiting game...

Well, tonight is one of those nights.... the fist night after the changing of a night time basal rate... and it is 11:40pm and my son is 97 with .20 units on board.... seems simple.. kiss him goodnite and off to bed... well not quite..

I have an obsession.. as do many other pancreas parents... to protect my son from night time lows when possible... and well... this is a number that may be heading that way.. but not worth waking him up for a nite cap of milk... so I wait. My waiting game, gives me about 2 hours of ... well waiting, and wasting time. I suppose I should be enjoying this time, it is mine after all.. the house is quiet, everyone is asleep... but me... waiting, I am waiting. Before May 9th of this year, and since my son's diagnosis a year ago, I waited every nite... but then I waited for three hours, every three hours, and as I mentioned in an earlier post, the great endo nurse changed the ratios and now the pod/pump is doing more of the work than me... but when we make a change.. tonight it being a combo of a basal rate range, and a Correction factor change, and a really active late evening in the yard with friends and neighbors... I wait. Again.

I hope that those growth hormones that on any other nite, keep me up to bolus him, kick in and keep him hovering in the 'safe' zone.. because of ALL nites, earlier today, I took off his CGM and gave him the day off. For those who don't have one, or are not too familiar... it will vibrate to wake him and if that does not work, it will beep to wake me.. at a high or low out of range. Talk about piece of mind... well tonight, this mind.. has not much peace!

All I think about is imagining what is going on in that little body of his, and how will I one day figure it all out to pass the torch on to him, so he can sleep, with piece of mind, and not worry... and respond to his own needs in the nite.

So, as I wait... I write, and I wish you all a peaceful sleep tonight, and a bright sunny day tomorrow, with no night wakings, and sweet dreams (but not too sweet - we don't want to wake with a high ;) (cheesy I know, but seriously, who thought of that... 'sweet dreams'!?!? well tonight, as my precious son sleeps I wish him sweet dreams of about 6 carbs to keep him safe, and dreaming of a sunny day tomorrow.)

A Loop hole in getting a CGM approved!!! Try it :)

Well, I really am thankful to have good insurance that has covered , my son's supplies to date. They don't always right off the bat, but they do eventually.

I had a little help from a few key people before submitting my claim for my son's Dexcom CGM.. Here is the important key points to remember:

CGM's are new and may have caps (Such as $80 for users life in reimbursement) but as diabetics we have more of an unlimited resource for "Durable Medical Equipment (DME)" (Specifically over $399) (This is what I learned from the fine print) Sowwhen you file= remember= APPLY FOR COVERAGE WITH COOPERATION FROM YOUR ENDO FOR COVERAGE FOR YOUR DME (They will know the CODE for this) and the sensors should be claimed under the same diabetic injectables supplies that your pump sets or needles would be covered under.

Work as a team, and I know that Dexcom will work with you to get the approval.. we are still waiting, but have not had denials so far, and are waiting to get approval. We filed for reimbursement in May of this year... They have 45 days supposedly... but we have our fingers crossed, and I hope that the "check is in the mail!" so to speak! :)

If you need further info or specific codes because you don't have a saavy provider, please comment or email me, and I would be happy to provide these, I just don' have them on hand as I blog tonight :)

The CGM has been amazing for awareness for us all, and really has helped with allowing us to see trends most importantly...knowing that he is going up or down from even a great number, helps us to 'keep him in range' with foresight and insight.. rather than constantly reacting and having him bounce up and down like a ball in a box!

Good luck - and may the force be with you!

Your blog is like chicken soup for the soul!

I have to give kudo's to those other bloggers who I don't personally know, but that I feel really connected to. I love reading about your morning scenario.. about your daily routine, about the 'things' that happen during your daily (And nightly) lives and how diabetes entwines itself into it. We have the same morning scenarios, same big questions, same feelings and emotions.

I love your writing, and your antecdotes.. and truly sometimes your posts help me to explain things to my loved ones and friends - things I could not articulate myself.

Thank you, and keep on blogging :) I love every word of it :)

The paradox of cause and effect.

Found some more interesting facts about household things that can cause illness and wanted to share them:

Germs (This one we know.. but the detergent was the new shocker for me)

Which room of the house harbours more germs, the bathroom or the kitchen?
If you answered the bathroom, you will be surprised to know that the kitchen harbors a lot more germs then the toilet seat.

According to a program on CNN broadcase in March 5, 1996, Carlos Enriquez , a scientist at the University of Arizona in Tucson lab tested sponges and dishrags from 1,000 kitchens in five major American cities. Some sponges carried salmonella bacteria, e. coli, campylobacter, clostridium perfringens and staphylococcus and other ill-causing bacteria.Not only that , but some bacteria growth is caused by the detergents that are used in washing dishes…. What a paradox….

Read more about this here: edition.cnn.com/TECH/tomorrow_today/9603/sponges/index.html.
If this article didn’t get your attention, consider the fact that one single bacteria cell can become more than 8 million cells in less than 24 hours! http://www.webmd.com/solutions/stop_cold_germs/kitchen-cleanliness.

Are your beauty products killing you?

This is the title of the article you find here: www.alternet.org/story/13530/.This article examines phthalates which are plasticizers and have always been considered safe according to product safety standards. But are they so safe?Phthalates have now been recognized as toxic substances under environmental law, but companies are free to use unlimited amounts in cosmetics.Read more in the article above.

Certified organic bodycare products

What is the difference between simple “Organic” and “Certified organic”?
CERTIFIED organic products contain no synthetic chemicals at any stage of the production chain, beginning with growing, harvesting, storage, transporting and processing, through to the final ready-for-market product. Where there is an ingredient that is essential for the product to function, (e.g. xanthan gum to thicken) and that ingredient is not yet available as organically grown, then, up to a maximum of 5% of non-organic ingredients may be used in the product, and only until that ingredient becomes available and organically grown.

Organic products are not the same. The organic chemistry definition of organic, is any compound containing carbon. Carbon is found in anything that has ever lived. So, by using this definition of organic, many manufacturers can (and do) say that the toxic petrochemical preservative, methyl paraben, is "organic" because it was formed by leaves that rotted over thousands of years to become the crude oil used to make this toxic preservative.

All of this is something to add more knowledge to our base.. not to scare, but just for our back pocket so to speak. Hope you found this interesting. I did. You hear people talking about what to avoid, but they don't always have facts or reasons why... If you have other items you avoid, please share them with us. I know I always have an open ear and an open mind.

Just can't shake the feeling...

Ever have one of those nights... regardless of if you are watching a comedy or a chick flick.. you still can't shake the feeling of your child having to deal with Diabetes everyday. Today.. not a holiday from Diabetes... Another day... dealing with stresses kids should not have to deal with.

I panic, I hide it well, but I panic. I kiss him and love him (my daughter as well of course) and I worry about both of them, like all parents do. But I would trade almost anything for the Diabetes to just go away...

There have been days when it acted as though he was non-diabetic for a few hours, and I wished it was like a flu that goes away in time... It has wreaked enough havoc on our family .. it is time for it to be gone. Leaving a healthy, vibrant and energetic boy.. who gets to be a boy.

I am feeling like today's post is more of a diary entry than a post, so hang tight with me as I peel my layers before you all. I just need to get it out sometimes.

He is sleeping and put the CGM monitor on him tonight. I always feel like the bad guy, when I have to put 'more stuff' on his little body.. and tonight he let me know I was the bad guy.

Another diabetic mom once told me.. (and thank Gosh for her, or I would take it even harder than I do ... They (your Diabetic Child) will say things and feel things that are not fair to them or you, it hurts, Like heck, but don't take it personally... the moment passes, and life is filled with so many moments.. let that one pass too... with a grain of salt, and an unconditional loving hug, that no matter how hard it seems to get.. you all will make it through!

How do you cope with making life as 'fair' as possible? How do you treat all the children in your life Diabetic or not equally? How do you remind those around you that they need to treat all your kids equally...

Life is not fair sometimes, but I still wish, and hope and strongly belive, that one day soon.. it will be. I don't know how or when... but please ... let it be soon!!

A wish... or self driven solution??? He figures he has it all figured out

My son's birthday is coming up soon and well, in preperation, every chance to make a wish.. he does. For the past year, as many other parents of diabetics know, that 'not having diabetes' is likely one of the 'most requested' wishes of the year. (much like the top 10 christmas gift list). Jared thinks he has figured in his own mind, regardless of how many times we tell him to never lose hope and keep believing and that he can even be a part of the solution with dedication... However he figures that since that wish is not likely to come true (atleast for this year) since everyone else with diabetes has had it thier whole life and has not really heard of it going 'away' for anyone he has decided that he can outsmart the wish process... something more likely to get... a round about way of not having type 1 diabetes. Jared's new wish is for type 2 diabetes. Yup, you heard it right, my son is hoping for the disease of choice in comparison. I ask him why. He states "Mom, if I had type 2, I would just keep taking care of myself and eating right... and exercising and I could cure myself." There you have it, a 5 3/4 year old kid, figuring out a way to cure his own diabetes... downgrade! In his mind.. Upgrading!

I only hope all his hopes, wishes and dreams come true, today, tomorrow and forever.

I just have to add my own personal touch on this post: Last year I took Jared and his sister to Disney on Ice shortly after his diagnosis, and as I watched all the children overindulging in sweets, treats and even expensive souveniers.. I thought to myself, I hope each one of those childred appreciate what they have, and what they are given... And know that they are lucky for each and everything and every functioning part they have... and the MC shortly says in the magic of the "wishes' theme of the show for all the kids to make a wish... You know that all the kids with their mouths full, and their arms full of goodies likely wished for more of the same, and you know that all the sick kids or diabetic kids in the audience are wishing for cures, and health! Somethings just don't seem fair.

Don't you think that parents should not take pancreas, health and the magic of their childs life for granted and feed them crap, for one day it could all be taken away, or do you allow for those endulgences so that if it should happen that way... they have had a taste of it?

What are your thoughts? Am I just too emotional about the diabetes?

Request for CGM's: Denied by Insurance

I, along with many others are sick of being denied coverage for the CGMS. Join me on July 1 to raise our voices as a community.

If you have been denied coverage for the CGMS by your insurance company, Please make a post on your blog, personal website and or a video post wherever you are a community member on JULY 1, 2008 telling everyone how important the CGMS is for you to keep healthy.

HERE’S WHAT YOU DO:
In the subject line of ALL your posts please put:
REQUEST FOR CGMS: DENIED BY INSURANCE

This way we will have a way to keep track of everyone’s posts, and make our voices heard.

I have been doing research and have figured a few loop holes during my battle .. I will post on these soon!

Family support makes all the difference...I hope you have support too..

Tonight my husband told me to check out my mother in laws blog ... what a surprise, but I wanted to share it... here is the link as she has other valuable articles of course... but here is the link and the article about diabetes, a whole family diagnosis :

But also a 'thank you' to our family... for being such a great support.. with out all of you ... who knows if we could even sail this ship!


Diabetes-a whole family diagnosis
It’s been said that it’s not just a child who gets diabetes, it becomes a whole family diagnosis and as a grandparent we had to deal with the same emotions and educate ourselves quickly with the whole diabetic process. We learned to deal with our emotions from anger, frustration to acceptance in knowing that for now this is his life so we provide him with all the love and support to helping him maintain good blood sugars.Some days are emotional rollercoaster’s where my husband and I cry, laugh and hug each other and feel helpless in watching our children go through the “diabetic ride”.

Emotions for not only our grandson but for our son and daughter in law who face challenges everyday with their precious son. Equally important is the sister who is not a diabetic and making sure that she is emotionally looked after as well. Then there are the other grandchildren who need to be educated about diabetes and helping them understand what is happening to their cousin and how they can all help each other. We are all very much in each other’s lives and diabetes is part of our family, for now… we pray and just believe that the cure is coming soon….Educating ourselves with diabetes gave us the tools to provide the best care requirements for our grandson and understanding that this education has to be ongoing. Just as things can change quickly, what worked yesterday may not work tomorrow. We were taught how to do the testing, injections, about low sugar reactions and what to do if one occurs.We learned that at meal times it is important that he eat a consistent amount of food at each meal and snacks which all should be on a schedule. Since there are 3 other grandchildren all with different eating preferences this was easy to do, the only difference being we now count carbs and measure everything, this is leading to us all trying for healthier eating.

As grandparents we want to reward our grandchildren with special treats, often “goodies.” We have learned that special treats can be in the form of games, toys and family trips. One treat that all our grandchildren love are backrubs, we call them “bunnyrabbits”. This is quality bonding time that I can spend alone with my grandchild. talking to them, find out what they are feeling, what happened that day etc. Often sharing some of this information with their parents will give us a clue as to what could be going on inside their little body. It is all about trying different methods that could work and sharing this information with the family.

Our diabetic grandchild needs our love and support as he adjusts to having diabetes. He continues to be very active with his friends and family (diabetic or not) just as he was before his diagnosis. This has encouraged us as a family to become more active as well.As a family we all strive to treat each other with respect and normalcy.It is all about changing our mindset to make better choices for all our grandchildren.We are so proud of our son and daughter in law, they have been the keystone to helping the whole family come together and become an even stronger family unit.
Please check out the invaluable blog that my daughter in law has for her diabetic experiences, she would love to share them with you and hear from you.She is not a doctor but a wonderful intuitive person who makes our diabetic grandson’s life so much richer with her insight.Check out her site; working together in sharing information will benefit not only the diabetic child but the whole family unit.

Love and hope to every diabetic child and their families
Posted by frances bergen at 10:28 AM

Lets 'Conquor' Diabetes...

So I am reading the book Cheating Destiny (you can see the cover and buy a copy at any bookstore, or from the link above or on the left) and it talks about this concept.. of Conquoring diabetes rather than always trying to cure it. It was a startling moment for me.. profound.. but I needed to read further to really understand why he was saying what he was saying, and it totally makes sense. After all these years of promising our children a cure, it is seeming lofty. Trials and unfortunate lack of success in reversing the attacked pancreas has gotten many generations down about the prospect. Not to say there have not been highs, or that we should give up hope. but two things:
1. What if we could prevent diabetes from occuring all together? Stop the epedemic and conquor what is attacking the pancreas to help prevent the onset of type 1 diabetes all together? ( Great side note and tip on prevention I got from someone elses blog: Omega 3 Might Help Prevent Type 1 Diabetes
This was reported in the Journal of the American Medical Association, so there's probably some validity to it.Researcher Jill Norris studied 1770 children who were at high risk for developing type 1 diabetes (because of genetic testing or because they had a close relatives with diabetes).From 1994-2006 she took surveys about their dietary intake and tested their blood for islet cell antibodies every year.The researchers discovered that the at-risk children who ate a lot of foods rich in omega-3 were 55 percent less likely to have pancreatic islet autoimmunity."This is the first study to show this," Norris said. "This is all omega-3 fatty acids, not just the kind that are found in fish. It is certainly not time to make any recommendations until we can see this in other populations," but added that it is a very promising result.I guess it's time to bring on the fish, flaxseed oil, walnuts and soybeans! Let's see if I can get my non-diabetic daughter to get more Omega-3 in her diet.

The next point is: 2. Talk about always replacing islets, but really and truly if the antibodies attacked it.. it is likely to attack again unless we find out why those buggers head for the pancreas!! So I am no researcher, but the cause is just as important as the cure.

I know it sounds harsh, because where does that leave our loved ones with type 1 today? well, I think knowing why the pancreas is attacked would really solve the whole conundrum since the pancreas has been proven by scientists (yay a women scientist in this case) to regenerate.. if we can stop the attack, perhaps our little ones pancreas can regenerate and reproduce islets! ahh a prospect almost as exciting as grandchildren ;) (okay bad analogy, but cute ;)

Thoughts?

Also, I hear talk from time to time of cure presentations to the ADA etc and then don't hear much after that.. how can we find out status of the quest for the cure.. or conquoring diabetes?!?!? Comment if you know please. Thanks.

Laugh, cried and wanted to share it..

So I really like the Youtube video of the mom's song to the classical Bach overture... but this one caused me to smile, but before long, I had tears and wow.. maybe I am just feeling emotional today, but thought it was worth sharing for sure.

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

Thanks to the mom who did this, great work!

My favorite line in the video which I may just start using is: "And if all your friends ate 1000 carbs, would you eat too???" LOL

Made me feel a little less lonely :) And a little more normal :) Cheers to Pancreas Parents everywhere!

Is ther a connection between Lead, Toxic Plastics, and Artificial chemicals to our children who have diabetes?

So shortly after the self blame game subsides, we look outwards, or atleast I did, I started to look at the environment and the world around us to see what could be contributing to this disease, what the common thread is that makes it an 'epidemic' espicially in the state I live in (WA)( I hear Norway is the second biggest hotspot)

I decided that I would make changes where I could. We were lucky that we already were quite 'healthy' eaters and had the whole grains and lower fat diet... but now, the house hold needed a 'scrub'.

I did my research online and through discussions with knowledgable sources and I compiled this list. ( I will also try and touch on the theories that have been pointed out to me, and reference them when available)

First point of attack:
PLASTICS
We cleaned house.. no more sippy cups, damaged plastic plates and unmarked plastics in general if we could not identify the types of plastics they were... It was brought to my attention that some types of plastics were ultimately poison. But when 'activated' they really became hazards to our health. What do I mean by 'activated?' well... My friends father in Switzerland is a scientist who did a study on plastics and how they affect our food and beverages when consumed using plastics as the vessel (cup or plate) and this was his statement generally... Plastics were created as a convenience but for use for a short period of time, for example, put your juice or water into the plastic cup and consume within 10 minutes 30 minutes tops, but with today's busy society we leave sippy cups and plastic kids cups and even plastic waterbottles and nalgene hiking bottles filled with liquids that we revist and drink even days later if they have been refridgerated.. or in the case of waterbottles in the car, yikes even weeks .. according to him, this begins the leeching process. The beverage or contents begin to absorb compnents of the plastics never meant to be absorbed. Had we consumed them within the reasonable time frame, problem reduced... save it for later... and we are putting toxins into our bodies. Plastic Plates for kids are somthing similar.. kids don't often use knives, but when we use knives on thier plates to cut their food (rather than on a cutting board or cermaic or porcelain plate) we open up the platic coating and now allow the toxic plastics exposure to our childrens foods. To make matters worse, we use the micowave.. but that is a whole other 'point of attack comment' ;)

MICROWAVE
So, call me crazy, but when we make tea for ourselves we have a few choices, microwave the water, or boil (or hot tap for some with the ultimate convenience). I always choose to boil my water, because when I microwave my water, the taste changes... DID You notice that.. the TASTE changes.. would one say that water is a flavored liquid.. not really.. so WHAT does the microwave do to water that it ultimately changes its molecular structure that it can change the taste of water?!?!
I rest my case.. can microwaving be all that good for what nature intended to be ??
But we do need to eat and drink warm things, but think about defrosting.. when we microwave meat to defrost it it changes color, taste and sometimes texture... so what are our options? (For those that don't plan in the morning and take out frozen meats to defrost or buy fresh from the market each day for each meal?? You can actually use your oven or toaster oven for defrosting... I have started, and wow, the color, texture and taste stay in tact.. imagine that!
saran wrap and platic seals in general (not brand related).....

LEAD
Okay so the big Fisher-Price recall was the beginning of a new attention to lead, not only was it now important for people whose walls were painted pre-1978 to worry, but for anyones whose kids were into dora and diego (loosely speaking) hey even the sesame street characters were dragged into the lead mess! Cheap manufacturing shortcuts are costing our children brain cells and health (and this is before they have to deal with the other known factors for such they may face in thier lives)
But how can we overcome the whole industry and be more aware of what can poison our kids... I haven't..if you have, please post.. I would love to hear from you :)

ENVIRONMENTAL FACTORS
So as I prepare this the first thing that comes to mind, which is not really 'environment'al but rather in our living enviroment.. I think about powerlines over our kids schools, and factories and working plants near our watersources and farms. Pesticides and all other things kind of fit into this factor.. things that we hope are washed away, not included in or a part of our lives, but make its way in...when possible, I try and avoid them.

FOODS
I have been compiling this list from various sources for various reasons.. and I will do my best to explain each one, but if I am not clear, comment and I can go into more details on any one of the reasons I have found.
A few of the changes we have made include:
Making the switch from iodized salt to natural sea salt is an easy and in the long run not expensive trade off... I have heard that there are parasites that live in the pancreas called 'fluke' and these buggers like to eat iodized salt and also artificial sweeteners, both of which we try and steer clear of when possible, but life happens and so we do what we can when we can (which means in our house)
No antibiotic meats and milk products are a big one, but more for general than diabetes based reasons, although the parasite theory (search: Hulda Clark for more details)also relates to the meats and milk products since some belive the parasites that live and feed off the islets in the pancreas stem from cattle and their products. (I have not decided if I fully belive this one or not.. I believe the theory, I am just not sure of they hypothesis that if one rids the parasites from the pancreas one can become less insulin dependant (Hummm.. parents, jump in here... would love to hear your thoughts on this one)
Artificial food colorings have shown in studies to cause almost ADD like sypmtoms in kids.. so for a child who stuggles with ups and downs due to glucose levels, why add more chaos to the list?!?
Vegetarian fed eggs, and meats Just a personal choice I made, also not to long after the whole Pickton Farm fiasco this one just became obvious to me (google pickton farm BC Canada if you wish for some gory details of a farmer who fed his pigs people parts this decade)

Well if I have not overwhelmed you with this list, I am beginning to feel overwhelmed myself. We do the best we can, and like quitting smoking or dieting if we go cold turkey or restrict EVERYTHING all at once, we are more likely to rebound or feel overwhelmed... So take it slow and we do what we can.. after all we have a lot to focus on ;)

Everyone has something to share...

Today as we roamed the aisles of Target looking for the new Jonas Brothers Album.. the one where Nick Jonas sings a song about his diabetes called "A little bit longer" ... (which I just found out has not been released yet except on YouTube)... My son asked the clerk if she had it. She asked how such a little boy knew so certainly of a specific song from a specific artist. Well.. He said "Nick has diabetes and he sings about it, and only him and me, and other diabetics know what it is like to feel so low, and so I want to get his song so we can listen to it and support him, he is really famous you know.. like 100% famous and still gives back some of all that money famous people make to find a cure for diabetes and other charities.. he is famous and still cool, and has diabetes!" (Yes, all that from a little boy who is 5 3/4). She was shocked.. and said she did not know that about him, but wanted to share a bit of info about the store she worked at.. that there were 3 diabetics that worked there... and she was one of them! He was thrilled... As I have mentioned in previous posts, that there are not many 'known' diabetics in our circles of schools or parks that we have noticed. So anytime anyone he meets has diabetes that is older than him, he feels pretty special to share something with them, and get a little bit of information and advice and tricks from them.

This time, he pulled out his pod and PDM (meter/remote pump) and said he wears the same one as Nick Jonas. She had never seen it before... he did a poke and showed her how it worked. Like a lot of diabetics (And she was diagnosed when she was 8 and was likely in her 20's now) still had chosen not to be ona pump for the simple reason that having the hose dangling from her was too much for her to handle. She wanted as much freedom as a diabetic could feel. My son explained to her that he feels free, he can now eat when he wants to, and can swim and play with it, and he loves it. I think he felt pretty special to be able to share his knowledge (which is limited at his age and after only one year of diabetes) with someone who really found it helpful.

This afternoon he became that mentor that he always looks for in others, and I am so proud of him.

June 20th is the one year anniversary of his diagnosis.. some celebrate it, I personally think we need to commend the person for all they have learned, challenged and dealt with over the year. It is a time to celebrate the success of love for oneself, and all they have endured and overcome. So will we 'celebrate' this every year? Well I will leave that up to my son, he is the one who is really the rock star here. I can sleep less, worry and treat all I want to (or feel I must) and still it is not me in the sweat in the bed in the middle of the night, or the one who feels the highs and lows like he does.

Nick Jonas is right... " You don't know what it's like to feel so low. But when you smile, you laugh, you shine, you glow... you don't even know". I have attached a YouTube link for those who want a teary moment and listen to this song titled "A little bit longer" Slated to be released (As I just found out moments ago... to be released this Summer 2008 http://www.youtube.com/watch?v=5OvC-QaatH0

Never a dull moment

As midnite nears and the house is asleep, I cannot seem to sleep for the night, mostly because last nite.. when that 'mamma intuition' told me to check my son, he was sleeping like and angel, probably dreaming of something wonderful, when I checked his BG to find him 29!! for him, that is low... for most anyone, that is low! Just when you think you have it all figured out curve balls come a flyin!



I have this theory when he does not eat enough protein in his dinnner, 3-4 hours after he falls asleep, he crashes .. somedays, not all days, and not consistantly enough for me to know why. We speculate it is not on the days he is growing (when he releases extra growth hormones making him high), and could be perhaps on days he has been extra active during the day... or perhaps, he left a crust on his bread aside that went un-noticed. You never know... and so here I sit.. typing away, thinking of the future.



How will he know to one day wake himself from these lows to treat himself?? The think that gets me about last nights situation, is that as usual, I slightly woke him and got him to drink milk, and with his slight lows and back to bed he goes, but this time, I wanted to wake him enough to see how conscious he was.. and with a bright smile (yes this is rare when I wake him from a dream.. ) when I asked him how he felt, he said " great momma, I love you.. good nite" I asked him did he feel low, he said no, he felt fine... hummm... so low and did not feel it.... yikes!



This after a break from his CGM (continuous glucose monitor) of course~~!



So do we ever get a dull moment from diabetes? I don't think so...but we can all dream.. and so atleast for tonight, Iwill try.

What is 'Pancreas Parenting'??

I know, it sounds crazy, but with all the different types of parenting out there today.. why should we not be able to term our love as 'Pancreas Parenting'... and one of the first things they told me before they discharged our family from the hospital was " remember... you are a parent, not a pancreas!" Well, I beg to differ, but most importantly, I think if we think of being a pancreas as a positive idea, rather than feeling solely the burden of the lacking function of the body part... we enable both ourselves, and our children to care for thier diabetes in the most personal, and involved way possible.

I have chosen to help empower my son to want to be his pancreas. Strange, I know... but when I put it into his 'terms' it means.. he gets to be a 'glucose detective' and if you ask me.. Magnum PI had nothing on my kid ;) My son likes to guess what his BG is before he checks it... so he gets a sense of responsibility and a true aquantaince with what each different BG feels like. It was only a short while before he could guess his BG within a pretty close range. I think that makes him feel pretty good, and is a talent in itself. Rememeber, our children must grow up, we must release the 'pancreas power' to them... it will one day be thier sole responsibility. We cannot always be there.

How to empower your little diabetic (in my opinion of course);

1. Let them be their own Glucose detective, if you are still doing injections, give them a 'handy dandy' notebook and let them be a part of the journaling process. at the end of each BG test, let them put a emotion face (smily, sad, happy face etc) beside the BG so they can associate how they feel with each BG, emotionally and retrospectively, this will help them get to know themselves and their own personal diabetes symptoms a bit better. If they are using a pumping system, let them use the buttons after a reasonable time period, showing them what you are doing, and how they will do it with you.

2. Let them pick the finger or the 'process' or 'routine' that surrounds thier BG check.. we call it a poke... I know... but sometimes we have to just choose a word, and that one worked for us... a finger stick was way too formal for our son. he liked to sit on my lap in a hug position for the longest time. (Same goes for site changes or Pod changes - he likes to have a two arm wrap around while the pod inserts, and if possible, he likes to do it in the same private area of the house, without an audience)

3. Let them try and guess what they would do if they were treating themself. What they they need... insulin or food?? or my sons favorite for a high.. " a few jumping jacks should bring that right down ;)" (note: this does not always work, but exercise is important and shaking a few sillies out never hurts!) We think drilling into everyone in our sons life that "insulin brings BG DOWN and sugar brings BG up is an important 'lock to memory' statement.. most uninformed friends assume if the child is low, they need more insulin!

4. Ask them what they would like for low, and if they are really young, but understand.. give them a few healthy choices (eg. would you prefer a juice box, or a fruit leather?)

5. Teach them about the importance of the meals and snack choices. Let them know that if they have a protein at each meal, they will feel better for longer and it works nicely with the insulin.. . protein is a good thing.

6. When teaching them to read or math, use labels... empower them to know how to look for the important parts of the label or atleast know the terms to guide others in the right direction. Show them how you portion their foods or use serving size as a guide when you plate their food, let them use measuring cups and be a part of the process... You will be amazed at how fast they want to learn math! Our son was doing multiplications before he finished kindergarden so he could figure out how he could get more than one serving size and figure out the carbs.

7. If they have had a low in the night, or a high.. ask them about it in the morning, if they remember it... and what you did to treat it. You will be surprised, and it lets them know what happens to their bodies in the night time. My son gets a bit too excited with night time highs in the wee morning hours, he figures it has got to be growth hormones, which means he is getting bigger and taller each day... which to a 5 year old means he will probably run faster! ;)

8. Find a cool case for them to use to carry supplies when they feel they want to. Don't make it a burdon, but let them be a part of the responsibility process.. you would be surprised, how it can make a child proud rather than embarassed of their medical condition when they get the attention for a cool camoflauge pack with supplies in it, rather than always having to run to mom to get stuff out of her purse.

9. Love your child, accept the disease, and talk about it. As we all know, we cannot pretend they don't have it... so we must accept diabetes as a freind, like ourselves, we must take care of it, and respect it and understand it..... try not to make it mad ;) We all feel better when we cooperate :)

10. Live by honesty being the best policy.. there are no good or bad numbers, but highs and lows, and it is more important for them to express that they really want the "name the carb treat here' and why they want it, and how they will feel if they have it (physically and emotionally) and how they will feel if they don't. Our son has become quite attuned to knowing if something is going to make him feel a bit on the YUCK side if he has the big piece of cake instead of half and small side of a reasonable choice of icecream vs. the way he feels if his piece is a bit smaller than his friends peices.. it only takes a while before they realize, they can play harder and feel better if they make good choices. Insulin was not invented to load up on carbs and try and push it to the max... we have to still make responsible choices with our kids within reason regardless of if they are diabetic or not.


11. Never let them give up hope. Some parents promise a cure, I promise hope, and progress, in the past year alone the progress we personally made with supplies and his numbers was incredible. Technology has come far, science has come far... Superstars have come out and openly discussed the importance of the cause. Never give up, and never let your child give up hope. My son still says, " every wish I make I know it might not come true today, but I keep wishing cuz you never know, if you keep wishing it might come true one day.. even if it is not today" (I don't need to remind you how fast diabetes forces a responsible child to grow up)

I would love to discuss any ideas or issues or scenarios you deal with and how you help you child. Ultimately, we are in this to help them.. to help themself.

How often do you check in with your endo *Dr or team) for changes to care?

So I am curious, I have been told some people email or call in daily, others every three days and some weekly to have tweaks or changes made to their childs insulin care. I was contacting the CDE (certified diabetic educators) every three days since my son has been on the pod and I still feel we have not reached perfection. The Endo Dr, asked why they were changing his basal and IC ratios so often, but she made some more dramatic changes, and we found it eliminated most of his dramatic highs or lows... until he got sick, lost 3 pounds and now, we are starting all over again, with him all over the board... Yikes?!

Do you make adjustments on your own, are their calculations? or how do you deal with these constant changes in your child's insulin needs?

The irony she pointed out is that for a kid who is on a pump, it was only giving 25% of his insulin, I was manually bolusing him for the other 75 % most of it in the middle of the night. Until our most recent appt when she stated this ratio was WAY off... and made some dramatic changes, I was up checking my son in the middle of the night. Now, I am feeling better with the changes, but still don't trust the pod/pump, since he varies so much each day and night.

Have you found a system and ratio that works for you and your child? Is your child within range most of the time? Does your child deal with increases in BG in the early morning for no reason other than likely hormones, or dawn phenomenon? How do you deal with this so you can not panic every night when you go to bed and put your sweet child to bed?

Do you beat yourself up asking how it happened?

I am constantly asking myself, why my son? why did this happen. For us, it was not genetic, although as you most likely know, he was born with the marker, and something happened in his little body before he turned 5 to bring on the Juvenile Type 1 diabetes.

So I have been dying to put together a questionaire about the items that I constantly question.. and totally informally want to know if there is a common thread.

So I am going to put a few of my crazy thoughts out there, and let me know if you have common threads. All of these questions are pre-diagnosis: (total random order and random thoughts)

1. Did you child have some form of spots (chicken pox virus) even if they were vaccinated?
2. Did your child seem to have frequently gotten the 'bug' that was going around, but it tended to last a bit longer for them then the other children?
3. (Laugh out loud on this one) Did you always wash their grapes and other fruit before feeding them?
4. Did they drink a lot of milk?
4a. If yes, was it always organic or hormone free?
5. Was your child a vegetarian or not? (if for some of their life - please note)
6. Did they eat a lot if processed foods?
7. Did they eat a lot of Peanut butter?
7a. If yes, was it regular or natural peanut butter?
8. Was the buik of their beverages water, fruit juices or just milk?
9. Did your child get sweaty at night when they were sleeping regardless of temp or season?
10. Does one or both ear(s) turns red for no apparent reason?
11. Did you child get ear infections?
11a.Were they on antibiotics more than once for ear infections
12. Where they ever put on an inhaler for a cough? or asthma?
13. Were you a brand loyal customer and so your child has the same brand of foods for years?
(eg. Krustez pancake batter mix, heinz ketchup, Hidden valley ranch dressing)
14. Was your child orally fixated from a young age, constantly putting things in their mouth?
Even chewing on thier shirt sleeves, or collars of jackets and zippers.
15. Were either parent a negative blood type or 'O' Type blood, and required an injection of RHogam while pregnant?
16. What brand of babyfood did you use? was it always the same? what about when your baby started eating yogurt? (yobaby? or regular yogurt?)

I know, researchers are falling off thier chairs laughing at me right now, but you probably think the same things too from time to time. (Like laughing at me, or wondering about each and every action you took leading up to diagnosis day that triggered the diabetes)

Thanks so much, and I may post more in the future, and I would love to hear if you have any thoughts or ideas of common threads to their diabetes.

I look forward to your posts or emails in response.

How far we have come.. current care devices..

We have come a long way.. and fast. Mostly thanks to good insurance, a lot to reserach, wonderful medical team and my son's wilingness to try new devices that will and have proved to make his life easier. If you have questions on our experiences with any of the following, please feel free to ask away... Even my son likes to email or talk to other kids who are either newly diagnosed or thinking of making a change in their care over to a pump or pod. He has mentors he spoke to, and everyones experience is and has been valuable to us.

Started on: Lantus (morning)
( June 2007) Novolog (multiple injections - with each meal and corrections)

big improvement: started using the novolog injectable pen for dialing insulin in such small
(August 2007) amounts for a child.

Moving up to the pump/pod: Insulet OmniPod (wireless pumping system)
(December 2007)

Trying to gain the most understanding: Dexcom Seven (day) Continuous Glucose Monitor
(April 2008)

Pancreas mom's spot conception

As I look back over the past year (almost to the day) since my son's diagnosis of type 1 diabetes... I think about everything that I have learned, felt and observed and I know.. I am not alone. I think about all he has gone through and how much my little boy has had to grow up, and I am certain, he is not alone.. although there are few 'known' diabetics in this area.. none at our district school, and none at the montessori school he is currently attending.

I function like a pancreas more so than a mom some days, and I know that there are others out there who can not let go (nor can we) of thoughts of caclulations, insulin, carb counting, bolusing, cures, remedies, treatments and long term effects of this disease on our children, our lives and the future. I read a lot on the topic, I think a lot on the topic and I stew the most on it... how can I make his life easier. in retrospect, I am starting to think the one missing piece was, how I can continue to also be relaxed, myself, and still provide the same level of care.

I will be posting past experiences and then update as new issues arise, I highly encourage you to be a part of this and email me, comment and participate. We are not alone, we are moms, pancreas's for children and we are people! we need eachother.. to know we are not alone.