Wednesday, June 18, 2008

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

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.

Tuesday, June 17, 2008

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.