I'm back for a little

[littlenuts]

Hello,
I used to be pump kin. I haven't been here for a while, things allergy wise have been under control. Then ds got type 1 diabetes which was a shock.

I've been trying to understand how many food allergy kids end up with type 1, since the food allergy (auto immune disease) was his major risk factor.

I just posted a link to a study on food allergy, it's interesting since this same drug is now being studied for type 1.

[GoingNuts]

Welcome back!  I'm so sorry to hear of your son's diagnosis.

[littlenuts]

Thank you!  I think this has been more difficult for us than the food allergy diagnosis.  But, ds has been amazing through it all.

[Macabre]

We have another member whose child was dx with diabetes last year. I'll point her here.

[CMdeux]

Hi littlenuts 


It is good to see you. 

[littlenuts]

Hi there! Good to see you too!

[ajasfolks2]

Hi there & glad to "see" you again!

[littlenuts]

Hi Ajas! Hope all has been well here!

[momtoAidenDeclan]

Hi there...I had a crazy return to work and couldn't get on here sooner.  My non-allergic kiddo was diagnoses this past spring (age 9), out of the blue...no family history, no allergies, thought he had the stomach flu, got really dehydrated, took him to dr's they admitted him and then he was transferred to bigger hospital.  Blood sugar was over 500 at time of diagnosis.

Last check his AC1 was around 5 which is fantastic BUT he is definitely 'honeymooning' and we'll have to see what happens when his pancreas completely shuts down.  I hope you have a great endocrinologist - our pediatrician is one so we switched reg. doctors within the practice and see him as our diabetes dr.  record keeping is crucial

Have to say this is much more difficult, life-changing, and traumatic than the peanut allergy.  ((HUGS))  Ask me anything and I'll see what I know since we're a few months ahead of you.

[littlenuts]

Our dx was pretty similar, ds was looking really pale and one evening I noticed that he looked particularly awful.  I put him on the scale and he weighed 63 lbs. he's 12 so his weight loss was dramatic.  My husband and I were both secretly googling his symptoms. Later that night when we talked about it, we were both pretty worried about cancer.

The next morning we went to the pediatrician.  His keytones were very large and his sugar was575, more upsetting was his dehydration and the rest of his labs. He was in ICU for a few days.

I have been awful at giving him injections, he's still so skinny. But he starts the pump on Tuesday and I'm kinda scared about the change.

I think I've actually been grieving for his health. I worry about his future and if he will have complications.

Lately I started to feel pretty angry at all of the nurses and even our diabetes educator, who in the hospital, promised that type 1 is manageable. It really is not. Type 2 is, but not type 1.  I can't give him insulin and know what his blood sugar will do. He can spike to 400 then down to 60. I mean, asthma is manageable and so is food allergy.  At least when I put him to sleep I know he isn't going to have anaphylaxis, but now every hour I wake up and think about numbers and carbs and time. And I pray that he wakes up in the morning.

How do you handle the worrying? And are you pumping?  How long does it take to move past sad?

Adding.. His last a1c was 10 but that's down from 12. How do you know if your endo is good or not? We've only seen the CRNP.  His ped wants him screened for more auto immune disorders besides thyroid and celiac.  Have you had more screening?

[momtoAidenDeclan]

You should find a support group in your area...with my permission the school nurse let the other moms of diabetics in our school know about our situation and one of them called me, one I cornered on my own - but I've known that husband and son for years. We were in a TOP Hospital - our initial care was excellent, we were able to call them anytime day or night and get questions answered.
It IS manageable - get on the ADA discussion boards - loads of highly experienced people there (just like here )
Just a note - our endo (and Hopkins agrees)  that we don't start the pump until the year mark....we need to have numbers under control for that long (we've never had a reading over 240 or under 50) and we need to make sure he's done honeymooning - AC1 as it stands now (5.5), and the units of insulin (20g carb for one unit for us)  we are on show that his pancreas is still giving it  a try...before it finally gives out.  If you're still reaching 400s they shouldn't be letting you use a pump yet - you really need to understand how it all works for him.   Pumps break and you need to be able to do it the "old fashioned" way, in an emergency - and you still need to know how many carbs he's taking in and the ratio of carbs to insulin.
Yes, once a year our endo has his patients screened for thyroid and celiac - higher chance of having these issues when you're diabetic. That's standard.
Moms always worry - I just try not to be a dweller and I let him live his life...on our way home from the hospital he was starving (outtake procedure is run by s.n.a.i.l.s.) and we stopped on the way home for lunch at Qdoba.  I am trying to keep him as normal as possible - I need to let him have some friends sleep over soon because we are NOT ready for him to do a sleepover anywhere except my mom or MIL's house (FIL is type 2).  I am sad when I let myself be - everything in perspective - When we were on the endo unit at the hospital it is also the burn unit (all pediatric) and next door to the (pediatric) oncology unit. perspective - does it SUCK?! Hell yes - but it's OK - and it is manageable, I promise.
Now I do have to stay with him at baseball practices and such still (we were finally at the age where I felt comfortable dropping him off ) - tho' I've let him go to the movies and pool with a good friend of mine and we just used texting to figure out his dose (he can't see a movie without popcorn ). 
we just got back from kayaking and a lunch at a restaurant - it is doable, I promise - I need to have him completely educated and on his own within 8 years so when he goes off to college and possible drinking he can handle those carbs.
Exercise and a balanced diet is important.
You'll figure it out. Feel free to PM me - or ask more ? here.

[CMdeux]

It IS manageable - get on the ADA discussion boards - loads of highly experienced people there (just like here )


I second this.

I live with a Type II currently, and my first spouse was a Type I-- diagnosed back in the days when "cause of coma" was the usual means of suspecting diabetes, and testing involved imprecise and expensive colorimetric comparison charts...

It is do-able.  Once you learn the quirks of the individual person's diabetes, that is... you can really control all of it.  You aren't at anyone else's mercy in terms of management.  It's just that the management is a lot more complicated than it is for food allergy.   

Having lived with both things...

Food allergy = simple, but pragmatically impossible to achieve management.  I do fear that DD will die as a result of simply failing-- just once-- to be suspicious enough of others.  Not a good feeling at all... and I still never really relax even with her tucked in at night.  Not saying that's how everyone lives, but we do.

Diabetes = complex, but theoretically achievable management... assuming that you never suffer from fatigue in terms of doing it day in and day out.  (Yeah-- BIG assumption)  I found that having a loved one with diabetes (and this goes for both Types) was MADDENING because they would get "lazy" about their choices.  They knew-- but just couldn't be "bothered" to do the right thing(s).  In some ways that anger is MUCH worse than the fear in parenting food allergy.  Managing well is really both too hard and too much of a grind for 95% of people with diabetes to do it right.  It can be done-- but you have to be very patient, and very diligent.  Type II is more predictable than Type I, in my experience... but the long-term stuff is every bit as scary... and the meds are terrifying because so many of them are too new to really have full profiles of side effects.  DH has been on two different meds that he was later switched from because of really scary emergent long-term risks.    The hard part with Type I is doing it all right day after day... and being ready/willing/able to figure it out on the fly-- you feel like you're working in mission control a lot.    With Type II, it's in making treatment decisions, because the risk-benefit is anything but clear for most of it.  DH takes about four meds each day that frankly have no real proven benefit-- merely a potential, hypothetical one.  Nobody really knows WHY certain long-term consequences seem to be linked to diabetes.  Is it just blood sugar control?  Nope, apparently not, since "tight" control doesn't necessarily prevent them well...  and tight control comes with it's own price. 

Anyway.


As for your anger toward your medical professionals and diabetes experts... OH YEAH.  If this is so EASY, then why don't YOU take over for me for a while, then, and tell me how easy you find it THEN...  Yup.  Same surreal feeling as being told "oh, it's only that you have to avoid wheat (soy... milk... etc)."  SERIOUSLY??    Oh, well, if THAT's all...   


  The first year is the hardest, just like with FA.  Even worse, is that during that first year, a lot of kids are still in the process of BECOMING fully diabetic... and if you adjust to a honeymooning set of conditions, wow, what a rude awakening when those beta cells finally give out for good.  Yikes.

BEST advice ever?  Build a routine, and KNOW that routine... use that as a scaffold to learn management as you go.        My DH, for example, CAN NOT "run" for exercise.  He just can't.  It sends his blood sugar into a crazy-volatile oscillation for some reason.  He requires low intensity physical activity over a longer period of time.  My first DH found that upper respiratory infections would send his sugars SOARING out of control-- to the point that he usually required hospitalization to stabilize.


The learning curve is way worse with Diabetes, and it's harder to train kids for compliance given that the consequences can be so far removed temporally from the actions.  The outcomes are also highly idiosyncratic-- some people can get away with things that others can't.   (As noted above-- maddening as a parent.)   That's where routine really helps-- because you can figure out that when X is in the presence of Y, then Z... and when X is NOT in the presence of Y, then M instead.  Nobody else can really TELL you those things initially because the system you're trying to learn to manage is simply too individual and complex. 

Blood sugar swings don't happen for no reason... but it can sure feel that way initially.  After a while, though, you learn to know which situations are likely to lead to more volatility, and you will know to be more vigilant then, and less so when things are likely to be more predictable. 

One other bright spot, though, is that ADA has a LOT more on the ball with respect to advocacy of patients.  They're at least a decade beyond where FAAN/FARE are.  Treatment and practitioner understanding is also light years better than with FA-- you'll never be quite as alone as it can feel when you're sitting in a room with an allergist that knows far less than you do about your child's condition. 

You can do it!!!   



There is also a LOT more (IMO) hope on the horizon for Type I cure at some point down the road, here, too.  So it may really be true that treatment/management will look nothing like it currently does by the time that your kids are college aged.    Insulin pumps, even, have radically changed management (for the better).

One final word of advice from someone who has known a lot of young adults with Type I (my ex-IL's were instrumental and VERY active in a regional ADA chapter)... please, please, PLEASE do not treat your diabetic child as though this is too hard, too complicated, or that s/he is "fragile/doomed/a victim" and needs "extra protecting" as a result of his/her diabetes.  You can THINK those things (and probably WILL)... but you have to be able to give them space to make mistakes, and show them that you have confidence in their ability to learn self-sufficiency.  Yes, it's terrifying.   I'd argue that it's the same exact KIND of terrifying as parenting food allergy, at least for parents who have low-threshold or MFA kids.   I still regularly fear that when I say goodbye to my teen, it could be the last time.  There's a part of me that never, ever forgets that.

But the alternative is a child who develops a sense of learned helplessness and fatalism that they will never shake; leading to someone who cannot be independent (or, in all probability HAPPY).   

PS.  I debated whether to include this...

[spoiler]My first spouse died fairly young, and there's no doubt that his diabetes played a large role.  BUT.  He was a veritable poster child for how NOT to manage Type I for almost all of those 30 years post-diagnosis.  He would go DAYS without checking his sugars, relying on "feel" alone... would eat junk and "wing" insulin amounts... regularly drank in excess (another thing that often resulted in HORRIFIC blood sugar swings), never learned to value "moderate" living in terms of diet/exercise, and quite frankly didn't take care of himself well at all. 

Either someone else did it for him, or he didn't do it at all.   His sugars regularly crashed to 40-60, or spiked into the 500's.  He refused to have regular A1C's done.  Even I was no match for him on that score.  Probably because he knew what they'd say, and he knew he didn't stand a chance if his mom and I both knew what they were... 

So why do I mention this?  Because he managed to do pretty much EVERYTHING wrong and still not sustain major brain damage or health consequences for well over twenty years.  I knew him intimately for nearly fifteen of them.  Some of that was luck, for sure.  But some of it wasn't, too-- some of it is just that the really crazy-scary things are the long-term ones.

"perfect" management isn't really possible.

"Excellent" management is hard.

  "Good" management is not so bad, and honestly, with "good" management, I think that my ex would still be alive-- and he'd have been living with Type I for forty years. 

[/spoiler]

[CMdeux]

By the way, I'm in no way saying that I know what having a child with Type I is like.  I can't even imagine how stressful that first year is-- and I've seen three different friends go through it, one with an infant.   

I'm just trying to point out that diabetics really CAN live 'regular' lives.  Just like people with food allergies can and do.   

[Macabre]

I ran into this article on twitter.

http://www.medicalnewstoday.com/articles/262376.php
   
DiabetesNews.com (@alldiabetesnews)
9/9/13, 7:44 AM
Research: Benefits Of Long-term, Intensive Therapy For Type 1 Diabetes Patients bit.ly/152OtlO
#diabetes

[littlenuts]

Thank you for your thoughtful post CM. It does help, to feel supported.

This has been another hard week for ds with sky high blood sugars and Ketoacidosis again.  My son is tired of having diabetes already. 

I will visit the ADA website, and find local support. I know that I'll need that in order to stay motivated over the course of this lifetime, or until there's a cure.

Thanks.. I knew I needed to come back to this place when the going got tough, feels like home I guess.