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Son returned from school trip in DKA/need help finding an advocate to deal with school

Discussion in 'Parents of Teens' started by Jake'sMama, Apr 11, 2016.

  1. Jake'sMama

    Jake'sMama Approved members

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    I haven't posted in forever... long story short:

    I need to find an advocate to help me figure out how to get our school to comply with laws concerning diabetics. We've done everything but a lawyer, mostly because of resistance from my spouse.

    Some details:
    Jake just turned 14. MDI He's been doing about 85% of his D stuff the last 2 years. He carries all supplies with him at school after the laws in Ohio changed 2 years ago. He's rarely in the clinic and is considered a controlled diabetic.

    The school has been difficult with compliance, requiring me to go on field trips etc. for the last 7 years. Yes, we have a 504. The school follows it when they feel like it. This year the RN "reorganized" it for the teachers, without my blessing. He's in 8th grade and there was a 3 day trip to DC. The Vice Principal approved of me going in August, but when it was time to pay our deposits in Nov, the principal stated that "no parents go on the trip". Lots of back and forth later, Jake decides to go with the support of an EMT who was going (& we knew from church) and support from me via cell phone. I had my concerns about how it would go, but my husband & the rest of the world was convinced Jake would be fine.

    The night I picked Jake up he was vomiting, which is unusual for him. Immediate red flag. I get him home, try to ask questions, he can't answer. I dump his vomit covered bag, dig through, download his numbers, get his BG (481) and ketones (2.9 blood) and take him to the ER. He is in in DKA. Our first experience. We hadn't even dealt with this at diagnosis, 7 yrs ago. We spent a day in PICU and 1.5 on the Endo floor over Easter weekend. He lost 9lbs in 3 days. His bicarb was 12 at admission. Multiple blown veins and he slept for days.

    From what I can put together, he forgot to give his Levemir multiple times on the trip. He has never done this before, but has never been away more than 1 night. His cell phone died after a few hours and the bus driver was new and didn't know how to turn on the outlets on the bus so they could charge on the go. He verbally checked in with EMT, but prefers to do this shot in privacy because it's in his booty. Jake tells me the schedule was nonstop and he had too much going on to keep it all together.

    I'm angry at the principal for preventing me from going. I'm frustrated that I didn't fight harder to go. The EMT (volunteer) and the RN (school employee) both missed multiple bouts of vomiting as a sign of DKA. No one called me to even say he had vomited. The ketone meter went unused. His roommates were all new kids, so didn't notice he was "off". His phone died in hours each day, so his alarms didn't go off and he didn't get most of my texts. He was eating all new places and foods, guessing at carbs. It was the perfect storm for DKA. All preventable if I was on the trip.

    It's too late to protect my kid from this happening, but at the very least I want it to be safer for the D kids coming up behind Jake. I appreciate any help you have to give, but please keep your judgment to yourself. I've beaten myself up daily with would've should've and could've. Thanks in advance
     
  2. Cheetah-cub

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    So sorry to hear that this happened to your son, and your family. I hope he will recover well and soon.

    This is gross negligence on the part of school staff and the chaperons. Very terrible, and makes me want to cry.

    My daughter will be 8th grade next year, and she will go on the DC trip. I hope I will get to go.
     
  3. Sarah Maddie's Mom

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    I'm really sorry you had such a frightening experience and that the school isn't doing right by your son.

    Obviously the adults should have been alert to your son's deteriorating condition but how is it that he forgot his long acting a few times? Did he not speak with you or text you at all over the three days? Let me say again, obviously the adults failed him but as far as bringing in a lawyer, I think that might do more harm than good. Personally, I'd use the experience to debrief and figure out what when wrong and when and work with him to strategize about how things could have turned out differently and how to manage emergencies.

    I suspect that's not what you wanted to hear but with a 14 year old, mostly self-managing kid, I think it offers the most productive, longterm outcome for his well being.
     
  4. singerjune77

    singerjune77 New Member

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    That is absolutely horrible! I'm so very sorry. I have no clue what sort of 'advocate' you need, though I suppose you could phone the JDRF in your area. It also sounds as though a lawyer might need to get involved. Obviously the nurse was clueless about DKA. The nurse in my school has posters about Hyperglycemia and Hypoglycemia that she gives to every teacher in the school who might deal with a diabetic child. Good luck!
     
  5. quiltinmom

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    I'm so sorry this happened. Please don't beat yourself up over it. You made the best decision you could at the time. You couldn't have predicted it. It's not your fault. I would be beyond angry, too. Just don't turn your anger on yourself.

    I kind of agree with Sarah, I hate to say. Getting a lawyer involved will not help your situation, nor will it prevent anyone else from it down the line. But you should (and I'm sure will) bring it up the next time they don't want to let you go on a school trip!

    Maybe you should send them the hospital bill to make sure they remember this incident. :Rollie:

    Sending your son get well soon wishes!
     
  6. mmgirls

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    Bugger, it's a hard one as I read this to my husband. We have different views because we have different roles.

    He sees a 14 year old that does 85% of care, I see a mom underestimating the reminders she mighe be inclied to act on the 18 hours of technology day her child is not in school.

    No matter what, I do think it is the public schools care to "know" T1D, and be prepared.
     
  7. Jake'sMama

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    Thanks for your reply.

    IDK, how he forgot honestly. It's never happened before. Totally unprecedented. But once he forgot once, it became harder and harder for him to remember and juggle all the balls he needed to juggle on this very busy and chaotic trip. I HATE that this disease affects his brain!

    He did text some, but mostly his phone was dead. He texted from a roommate's phone at one point. It was very sporadic.

    We are strategizing, of course, this is the most important piece. This was a steep learning curve. He has his Endo today. The Hubs is going with us for the first time (in 7 yrs).

    We just don't want to let the school "off the hook", KWIM? I have talked to the school until I am blue in the face. I have had meetings. I have educated staff, I have gone on everything they allowed. I have tried to prepare my kid.

    We are not lawyer people. Part of me thinks that's why the school has gotten away with as much as they have up to this point. IDK. Im just so tired...
     
    Last edited: Apr 12, 2016
  8. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I don't have much to add except that I am so sorry. How have you communicated with the school since the incident? Do they know the severity and life threatening nature of what happened? How have they responded? I would encourage you to speak with your local ADA chapter about this for guidance. They have provided us pro bono lawyers 2 times over the years for 504 non compliance. Their attorneys are trained in making things go as smoothly and sternly as possible with the schools.
     
  9. Jake'sMama

    Jake'sMama Approved members

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    Brenda, I poked around the website, but am not sure what I am looking for...

    The school knows he was in the hospital. The principal called my cell and I let it go to VM. I didn't see the call as we were still in hospital. I've heard nothing since. I've been in touch with the teachers.
     
  10. Jake'sMama

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    Thank you... from the school who wouldn't even administer insulin in the beginning... I'm sure they'd get right on that hospital bill! LOL
     
  11. Jake'sMama

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    I've done my share of crying. I pray your school is easier to work with than ours.
     
  12. Jake'sMama

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    I have always talked to Jake and told him we are a Team. Being a team, we have to share information and work together. This has served us well. He had to go to DC without half of his team and it didn't go so well... I feel like I let him down. In the aftermath, I still don't feel like my husband "gets it". We definitely see this from 2 different perspectives. He is the one pushing for ADA to be involved at this point, but it's up to me for some reason to make this happen. sigh...
     
  13. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I've just called the ADA Chapter director in the past. The number should be on the website. They can help you with who to contact. Please know that being an advocate for your son in situations like this will help pave be way for those who come behind you. Our work with the attorney and school district with 504 non compliance has tremendously helped ALL of the families with diabetes who have come after us. By getting this situation delt with professionally you could potentially save another child's life. Thank god your son is all right.
     
  14. Michelle'sMom

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  15. Sarah Maddie's Mom

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    I get that, I really do. My concern though is for your kid going forward. If you lawyer up the school will too. In the end the school will argue that your son was not capable of taking care of himself and therefore not able to manage his care at school independently. All of this will take the remainder of the school year, maybe into next year and he will start HS with the school likely insisting that he come to the nurse or the office to test throughout the day etc etc etc. Future field trips will require that he ride with a chaperone, or with the nurse or who knows what but the school, I think, will insist that "for his own safety" he be micromanaged, even if it's by people who don't really know squat about D. Now, maybe I'm wrong, but in all likelihood that's how they will respond.

    Whatever you do, good luck.
     
  16. Mish

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    I want to be as gentle as I can with this, because I know you've been scared by what's happened, and it was a very serious issue with your son. But your anger with the school is misplaced.

    You've said yourself that your son has done 85% of his own care. You've known all along that the school sucked with any sort of diabetes care.

    The fact that his phone was always running out of battery..just question that one with him for a moment. These kids never let their phones run out unless they don't want to talk to their parents. ;) Trust me. Been there, done that with 2 kids. He's 14. He knows if he forgot his long acting shot multiple times. As I like to say to my son, "oh I'm sorry, I forgot this was the very first day you've ever had diabetes." sarcasm there. Your son has had diabetes for 8 years. There's no "forgetting" his shot on multiple days. He deliberately didn't take it. The long and the short of it, is that he didn't do the most basic of diabetes care for someone who does 85% of his own care. He simply didn't do it. I'm not sure what sort of plan was in place with the EMT - but there should have been some kind of detailed instructions on verifying shots, etc. And you should have had the EMT's number so you could check in if the phone was dead. I think the big lesson here is that while he might be great at his own care when he's under your watch, he's really not ready for multiple days away. He's 14. That's a lot of responsibility.

    I agree with Sarah, too. Bringing in a lawyer at this point isn't going to help. Your son has proven that he's not responsible with his care, and so what will the school do? Clamp down on him and monitor his every move.

    There has to be some middle ground though, and getting the school to follow the 504 is the place to start. Clear expectations for all parties are also important. That's probably the battle you need to be fighting at this point.

    But really, the big beef is really with your son and that is what you need to address with him. Why he didn't do what he was supposed to do.
     
  17. StacyMM

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    My 14 year old son is going to DC next month and I debated for months before deciding to send him. The schedule is crazy busy and there are some long travel days...and I have a son that forgets that he has diabetes on a very regular basis. Our school also has a no parents policy. I'm more worried about lows at night than anything else - all of that running around - and boluses that never happen. I'm just not looking forward to this.
     
  18. Butterfly Betty

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    ^^^^this! All of this. I'm concerned about why you didn't have the number of the EMT so you could verify daily that his shots were given. Or why you son wasn't texting you each night/every morning to go through what needed to be done. I mean, his phone wasn't dead for all three days, right? And while I understand the urge to place all the blame on the school, not all of it belongs there. I've been in your schools. My daughter's school took her on a fiel trip but left her insulin at the school. When she skyrocketed high, they then put her in a car with a stranger and drove her 60 miles away from the nearest hospital and then called me. Had they contacted me first, I could have made arrangements for insulin to be brought to her. BUT while the school was partially to blame, so my daughter, who knows we don't go anywhere without her insulin.
     
  19. KatieSue

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    I'm so sorry this happened. Sounds like a crazy mass of confusion and misses.

    My daughter did the DC trip when she was 14. At that point she had only been diagnosed 6 months. We had signed up for the trip prior to diagnosis. I was a nervy mess the whole time but she did fine. Oh her numbers weren't a straight line or anything and she had to set alarms a couple of nights to test but nothing horrible happened. She'd text me here and there.

    It does sound like a good learning experience of what can happen. You may want to check out back up batteries for the phone, they are relatively inexpensive. I don't know how your trip was run but ours while it had teachers from her school on the trip, the trip itself was run by an outside travel agent who had nothing to do with the school other than recruiting staff to go on these trips.

    So sorry this had to happen you guys. Nothing scarier than a kid in the hospital.
     
  20. samson

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    Call ADA, they have advocacy folks. Not sure if it will help, but by law you guys get to set a care plan that will keep your kid safe, and the public school must accommodate. Enforcement is of course another story, but the law would be on your side. Another possible source of information is COPAA, they do all kinds of disability, but will likely have a list of at least moderately knowledgeable attorneys in your area.
     

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