- advertisement -

Jesse's mom wrote this - PLEASE READ

Discussion in 'Parents of Children with Type 1' started by BrokenPancreas, Mar 29, 2010.

  1. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
  2. Denise

    Denise Approved members

    Joined:
    Jun 24, 2008
    Messages:
    2,534
    I thought one died from a low? Also, just to warn, Abbott pharmaceutical was broken into recently and the news did warn to please make sure you buy meds from a reputable pharmacy and not some random one to get it "cheaper". I know they said it was mostly depression meds taken but...Aside from this, I don't know what to say about the suspicion.

    eta..I would think if it's "bad" insulin, it'd not be effective in bringing down highs...not sure how it could cause lows?
     
  3. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
    I don't know.. But SIX in one week? If anyone knows anything about "bad insulin" please comment.
     
  4. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    Honestly, I just took it as someone who is very much in pain casting about to find a reason why her child was taken too soon. It doesn't appear to be grounded in any facts.
     
  5. wilf

    wilf Approved members

    Joined:
    Aug 27, 2007
    Messages:
    9,652
    I am not aware of 6 fatalities, just 2 (Trent and Jesse).

    I would be very careful about the hypothesis that it was "bad insulin", unless there is compelling information to suggest that that was the case. At this point there is NO information to suggest that that is the case.

    This excerpt from his Mom's blog may offer some insights into the situation:

    ".. In all of my years I have met so many courageous children. But in the same breath I know they struggle so painfully with this disease. After 10 years of this 24/7, I don?t care if you are 13, 23, 33 or 53?you are damn tired. You want to pretend it is not real. You yell, ?Mom my blood sugar is 172? when it is really 382. You know why? Because It is NO PRESSURE. You keep several meters and have one ?special? for your doctor visits. If you know you are high, you wouldn?t dream of putting it on the ?doctor? meter because you feel judged. Don?t believe me? Ask them.

    Now is the time to help them. We need to STOP treating blood sugars as good or bad. We need to educate our endocrinologists to assist instead of judge.

    They lie because they want freedom. Freedom of this disease."

    Diabetes management is very demanding and challenging at the best of times. It becomes impossible if our children do not feel they can honestly report their blood sugars, and start lying or making them up or testing their friends to get good numbers. Something for us all to give very careful consideration to in working with our children and our medical teams.
     
  6. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
    Wilf, I edited my post, and just left the link.
     
  7. jcanolson

    jcanolson Approved members

    Joined:
    Apr 7, 2008
    Messages:
    2,115
    Not sure where she gets 6 fatalities from. Maybe Trent was the 6th that she knows of since her son died. She has been and is very active with JDRF, so maybe other families who have lost children have been put in touch with her.

    Just guessing. I'm sure many kids die from this stupid disease that we never hear about.
     
  8. ecs1516

    ecs1516 Approved members

    Joined:
    Dec 11, 2007
    Messages:
    7,028
    Trent died of a low the mother thought. Was Jesse's death from being high?
     
  9. wilf

    wilf Approved members

    Joined:
    Aug 27, 2007
    Messages:
    9,652
    Kids don't die from being high, at least not without going through a longer process of DKA.
     
  10. EmmasMom

    EmmasMom Approved members

    Joined:
    Dec 31, 2005
    Messages:
    2,689
    It says in her journal that he took insulin and then fell asleep. :(:(
     
  11. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    Trent was the young man who unfortunately died in his sleep this month.

    Jesse died from DKA last month, from reading his mother's journal.

    Neither child should have died, and it was nobody's fault that they did...
     
  12. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
    Lee.
    I read the journal a few times, where does it mention DKA?
    I thought he took insulin, and then fell asleep?:(
     
  13. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    This is Jesse. The other child, Trent, passed in his sleep. Jesse passed away due to complications from extreme high blood sugars - DKA essentially.


    On 2/3/10 it was a day just like any other day. Jesse and I had stayed up late to watch Kindergarten Cop and I shewed him to bed because he had school in the morning. At 6:30 am I woke him. He said, ?Mom, I?m not feeling that great.? Anyone who has a type 1 child knows that it clearly sounded like a sluggish diabetes day. And I went to work knowing his meter was in one pocket, his phone in the other. ?How are your blood sugars??

    ?Fine mom.? The last words I ever heard out of my beautiful loving son?s mouth. It will haunt me for the rest of my life. At 11:00 am he gave himself insulin. At 3:30 pm when his dad came to get him, he was lifeless, not breathing and we knew a pulse 45 minutes later would be futile. I will save you the details only to give you this: the scene in the E.R. was the same as 10 years ago, the same waiting room, the same people greeted and with the same feeling of dread ? the worst day of my life.


    Here is the blog that this is from.


    http://ottermoms.blogspot.com/

    So sad -
    Type 1 diabetes to me is a timeline ? a series of numbers ? that I will never forget. On 3/3/2000 my beautiful little boy was diagnosed with type 1 diabetes at the age of 3. Tiny, he was. Strong, we were. I remember greeting people one by one in that E.R. to tell them the worst day is upon our family and our lives would be changed forever. I remember watching the nurse poke his little finger and with one glance of her sad face I knew it was type 1 diabetes. I was no stranger to the disease since my aunts and uncles had all grown up with type 1. But since they were all in their 60s and didn?t take care of their bodies due to lack of education, lack of medical technology, this most certainly would be ok for MY son, MY family because we would be strong and we would manage this disease.... See More

    I called JDRF from the hospital room because even though I was 4 months pregnant with my son, Joey, I was not going to wait to get on the path to helping him by trying to find a cure. You see, a mom does this for hope and a meaning. They want to look their children in the eye and say, ?Son, I?ve done everything I can to find a cure for your diabetes.?

    I?ll flash through my 10 years here ? several Walk to Cure Diabetes teams ? a moderator for the Online Diabetes Support Team (ODST) with my dear friend, Ardy ? The International Development Committee ? creator of snowboard camps for kids- participant in Children?s Congress 2003 - the Executive Director of a local chapter ? a Ride to Cure Diabetes participant for 7 rides ? a gala attendee ? and most recently a documentary about 12 people with type 1 diabetes doing Ironman ? Triabetes.

    On 2/3/10 it was a day just like any other day. Jesse and I had stayed up late to watch Kindergarten Cop and I shewed him to bed because he had school in the morning. At 6:30 am I woke him. He said, ?Mom, I?m not feeling that great.? Anyone who has a type 1 child knows that it clearly sounded like a sluggish diabetes day. And I went to work knowing his meter was in one pocket, his phone in the other. ?How are your blood sugars??

    ?Fine mom.? The last words I ever heard out of my beautiful loving son?s mouth. It will haunt me for the rest of my life. At 11:00 am he gave himself insulin. At 3:30 pm when his dad came to get him, he was lifeless, not breathing and we knew a pulse 45 minutes later would be futile. I will save you the details only to give you this: the scene in the E.R. was the same as 10 years ago, the same waiting room, the same people greeted and with the same feeling of dread ? the worst day of my life.


    Diabetes took our lives. All of us. It took our lives the day he was diagnosed and it took it again when it killed him.

    Here?s where I hope you will listen to me. Pay attention. Look at Rik Bonness across the room, who met Jesse in 2003 at Children?s Congress ? a boy who made such an impact on Rik, he talks about him in his speeches. Look across at Ardy Johnson, a woman who was always forced to handle the ?tough? ODST cases ? the deaths of children. Of course I can now relieve her of this burden as this burden is mine and if anything I make it my mission to give back.

    In all of my years I have met so many courageous children. But in the same breath I know they struggle so painfully with this disease. After 10 years of this 24/7, I don?t care if you are 13, 23, 33 or 53?you are damn tired. You want to pretend it is not real. You yell, ?Mom my blood sugar is 172? when it is really 382. You know why? Because It is NO PRESSURE. You keep several meters and have one ?special? for your doctor visits. If you know you are high, you wouldn?t dream of putting it on the ?doctor? meter because you feel judged. Don?t believe me? Ask them.

    Now is the time to help them. We need to STOP treating blood sugars as good or bad. We need to educate our endocrinologists to assist instead of judge.

    They lie because they want freedom. Freedom of this disease.
     
  14. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
    I did read that, I thought he fell asleep after giving himself insulin?
    I didn't know that DKA could happen that fast?:(
     
  15. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    It does take a couple of days (but 4 hours without insulin shot Coco up past Hi!). But the mother's blog entry does hint at the fact that she would ask her son what his BS was and he would say a lower #. They didn't know he was running so high or for how long (my assumption based on the blog entry).

    That type of action is something that I can definitely see Coco doing, just to avoid having to test, or avoid having to deal with the questioning - why are you so high.
     
  16. rare

    rare Approved members

    Joined:
    Mar 18, 2008
    Messages:
    301
    It does sound like dka to me but she never gave details. All around a tragic situation and my heart aches for her and her family. Yes, dka can happen that quickly. :(
     
  17. browneyesjt

    browneyesjt Approved members

    Joined:
    Feb 24, 2009
    Messages:
    103
    So sad to read about these kids... My prayers are with their families.
     
  18. StillMamamia

    StillMamamia Approved members

    Joined:
    Nov 21, 2007
    Messages:
    13,195
    I know it is normal to ask why, especially when a child dies, but, I hope, in some way, we will all find a way to not "project" our fears and anxieties onto our children. I mean that in the kindest possible way, I really do.
    Our children all have enough to deal with. I hope, if needed, we can speak to someone, a friend or counselor, about our fears.
    I know some don't hide the truth from their children. Neither do I, but sometimes it just isn't the right time, kwim?
     
  19. SueM

    SueM Banned

    Joined:
    Mar 25, 2010
    Messages:
    380
    It has been such a difficult time for so many ... blessings to the families.

    Here's a few things that I have been thinking about since hearing about these deaths. Many questions out there ...

    1) She mentions six deaths in one week? Is this accurate? I have heard of 3 recently but then inevitably someone will bring up someone else who they heard about (in their town, etc.) who recently died. Maybe this is typical but it is getting more attention now because it just happens that 2 of the boys were 'high profile' in the sense that one of the mother's was/had been associated with JDRF and another one of the mother's was well known by CWD - my understanding anyway.

    2) I do hope that there is someone out there (medical world, etc) who is investigating the deaths. If they all were on the same type of insulin, perhaps that needs to be looked at. Same lot #'s, etc... (For the record, I doubt it has anything to do with that but... is someone looking into it)?

    3) Maybe it is just a matter of numbers. I firmly believe that we have had a HUGE increase in numbers of people diagnosed with type 1 diabetes over the past 20 years or so... (personally I blame vaccines... but I digress). :eek: Maybe there are more sudden deaths now just because of the huge increase in numbers. For example (making up numbers here), if in 1980 there was only 1 in 10,000 kids diagnosed but now there are 1 in 500 - then it would follow that there would be more tragedies to go along with the increase in numbers.

    4) With the internet so prevalent now, maybe we just have more access to hearing about these tragedies.


    Anyway, just some food for thought in the midst of all the sadness.....
     
  20. s0ccerfreak

    s0ccerfreak Approved members

    Joined:
    Mar 17, 2007
    Messages:
    2,111
    This is what Jesse's mom said on a friends' blog:
    He didn't feel well in the morning - he didn't want to go to school and he told me he was having a diabetes day. At 3:30 he was found slumped over the sink at my home. he was gone. He was brought back to life long enough for us to all say goodbye. I felt him slip right through my hand, literally.

    Coroner has found nothing more than dka. I wish I could comfort you with saying it was something else.

    I fight harder. I fight stronger. Our family loves each other and our extended family in the "d" world has shown up on my doorstep ten times of what I have given to the d community - that tells you how much love there is here.

    I will be riding in Death Valley once again for my loving, funny, sweet, smiling, perfect, wonderful boy. Anyone who knew him - even for a second - will leave this world a better person.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice