Erin Cassidy – T1D Exchange

Activity
- 9 months, 3 weeks ago
  
  Samantha Hunter has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I technically received accommodations, but still received a lot of judgment and discouragement from using those accommodations. In seventh grade, I had to leave five minutes early before lunch to go to the nurse to have my blood sugar taken (I had just been diagnosed and wasn't comfortable doing it myself), and my seventh grade history teacher would literally stop what he was doing to glare at me as I left the room...
- 9 months, 3 weeks ago
  
  PamK has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  @Lawrence S. - 504 refers to Section 504 of a government act that declared diabetes a disability. This allows students to have a 504 Plan that allows for them to do thinks like take breaks, eat a snack, or take insulin when needed while in school.
- 10 months ago
  
  T1D4LongTime has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I was in school in the 60s and 70s, so 'accommodations' didn't exist. After several hospitalizations in 7th grade, I was allowed to go to my locker outside of allowed time period to eat a snack. Not really an 'accommodation'. No food or drinks in class in my school years, so Lifesavers were my low treatment choice
- 10 months ago
  
  Tom Webb has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I was in school some years ago but my mother would bring juice placed in the office. The nurse was only at the school for a very short time during the day and her office was locked when she was not there. The juice was either orange or apple juice.
- 10 months ago
  
  mbulzomi@optonline.net has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I have no children with T1, T1 1/2 or T2 Diabetes. Only I have Diabetes.
- 10 months ago
  
  JuJuB has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  "Accommodations" were not a thing when I was in school. In elementary school, I'm sure my mother met with my teacher (I think she supplied them with juice and crackers, and told them what to look for as signs of going low); by the time I was in middle school and high school, I was handling things on my own and none of my teachers necessarily knew about my diabetes or would have known what to do about it. Back then, too, students carried their own meds. The only time you kept stuff at the nurse's office was if it needed to be refrigerated. I was one-shot-a-day back then (this is in the 80s), so no nurse for me either.
- 10 months ago
  
  Eva has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  When I was diagnosed with pancreatitis in 1987, I had severe stomach pains after eating, felt nauseous and I needed to go to the bathroom often. I remember very well that I had to talk to and persuade each of the teachers to allow me to have some accommodations. Some allowed them, others did not. When my pancreas finally gave out and I was put on insulin, these same teachers were much more accommodating after explaining what I needed. I was able to check my blood sugar, and eat/drink in the classrooms as needed. However, my gymnastic and soccer coaches wanted nothing to do with me as I was liability to the teams. Rightfully so cause, I was always running low.
- 10 months ago
  
  Lawrence S. has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  Several people referred to "504's". What is that, some kind of an accommodations program?
- 10 months ago
  
  AnitaS has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I was diagnosed in 1973 at age 9yrs. There was no accommodations but I am sure I would have been able to eat/drink something if needed to bring my blood sugar up. There were no blood glucose meters at that time and I didn't have to give myself injections at school as my NPH and Regular insulins were combined into one syringe and just given two times a day (once in the morning and once at dinner time).
- 10 months ago
  
  PamK has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I answered "Yes" even though I was in school many years ago. 504's were not being used then, but i was allowed to go into the hallway at school to eat a mid-morning snack and I was sent to the Nurse anytime I felt "dizzy," which was my symptom of a low blood sugar. This was back in the 60's, so a lot has changed since then. There were no home blood testing kits, only urine sugars. So, testing at school was not an option. Also, I was only given one shot of beef/pork mix insulin a day, in the morning. So I did not inject at school. So, there really wasn't a need for a 504. My Mom would just go in and talk to the school nurse/administration and the timing for my snacks and meals would be worked out by them and my teacher. I'm honestly not sure if there was any paperwork involved.
- 10 months ago
  
  Janis Senungetuk has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  In 1955. in the 3rd grade, there were no accommodations. After my dx my mother first spoke with the school nurse re. urine testing and assistance with hypoglycemia. She refused, saying that was my responsibility. My teacher was clueless. She kept the box of graham crackers Mom had given her locked in a cabinet, which made accessing one when I felt I needed it difficult. She did give me a piece of a cracker when another student had a classroom birthday celebration with ice cream and cupcakes. I had to eat my cracker at my desk while the other kids enjoyed their treats together at the large table in the back of the classroom. The next time there was a birthday party I was sent to the school library to stay until a student came to get me. From that point on I did everything I could to not need assistance with lows. Since there was only urine testing available I'm sure I was running high glucose levels most of the time. Throughout my public education there were no accommodations. It wasn't until much later, as an adult in graduate school, that my request for accommodations because of T1D was finally acknowledged.
- 10 months ago
  
  Lauren Carey has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  Yes and No. I was given the time and space to eat a snack, check blood sugar, give insulin, etc. I did not have a 504 plan and I don't think it was an option when I was in school.
- 10 months ago
  
  KarenM6 has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  Accommodations weren't a thing when I was in school. I don't have any idea if my Mom contacted teachers or administrators. She might have but I kinda don't think she did.
- 10 months ago
  
  Leslie Frezza has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  My son has a diabetes health plan and 504, both were required/suggested by his school nurse. His management at school has been very easy, he does everything himself but has contacts at the school if he needs help. The office staff are great too, they have a dedicated area where he can keep extra supplies.
- 10 months ago
  
  Bob Durstenfeld has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  When I was in elementary school my parents spent time with each teacher explaining diabetes and that I might need a snack. This was 50 years ago. Most teachers were clueless. For my eldest son we had a similar experience, but, in classroom blood testing was approved. For my granddaughter she uas the Dexcom G6 and a reader that the teacher has access to and understands what to do for both high and low bg.
- 10 months ago
  
  Mary Dexter has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I was 48 when initially diagnosed and working in the local school K-12 as a substitute teacher. No accommodations. The kids were very helpful.
- 10 months ago
  
  cynthia jaworski has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  Dx in the fifth grade in 1962, the only accommodation to be made was to let the teacher know that I was diabetic and might need to eat. I took my NPH in the morning, and that was about it. No urine testing during school (why bother?). The first few weeks after dx I walked home for lunch but as we all got more accustomed to the diet, I resumed bringing a bag lunch to school.Amazingly, there were few problems. I'm sure that if an A1C had been done at the time, it would not have been good.
- 10 months ago
  
  Joan Benedetto has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  This is a pretty broad question. My child has a 504 plan which allows me to completely manage his diabetes from home. He goes to a private school with no nurse. We provide a kindle in the classroom which displays our son’s Nightscout site. He self manages checking BG/dosing for lunch via pump. If I see via Nightscout/Share that other action is necessary, I message the teacher. There are five others in the “text tree” just in case. We’ve used this system since three year old preschool, and he is now in fifth grade.
- 10 months ago
  
  Drina Nicole Jewell has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  Now I need to know 🤣
- 10 months ago
  
  Drina Nicole Jewell has commented in the same post you commented in :
  For caregivers of children with T1D, do you have any accommodations at your child’s school for managing T1D? For adults with T1D, did you have accommodations when you were in school? Please share more about your experiences managing T1D with caregivers and school staff in the comments.
  I chose other. My 13 yr old has accomodations and my 17 yr old does not. He chose to skip out on them at the beginning of high school. At the beginning of each semester he personally talks to each of his teachers and explains his type 1 and the issues he occasionally has with highs and lows and his choice to not have a 504 plan. It's worked well for him.
- 1 year, 1 month ago
  
  karolinamalecki7@gmail.com has commented in the same post you commented in :
  Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
  Answered no, but am super intrigued about inhaled insulin. I am going to ask about it at my next appointment!
- 1 year, 1 month ago
  
  Ms Cris has commented in the same post you commented in :
  Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
  I too was on Victorza, off label, low dose with great success...and then is started inducing severe gastroparesis. I was so upset, both my endocrinologist and gastroenterologist tries to make it work, but i had to stop. Symlin does ok, better than nothing.
- 1 year, 1 month ago
  
  Donna Condi has commented in the same post you commented in :
  Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
  Not at the same time. But I was misdiagnosed as T2 and put on T2 drugs until I asked to go on insulin because the drugs were not controlling my blood glucose.
- 1 year, 1 month ago
  
  Lenora Ventura has commented in the same post you commented in :
  Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
  I used the first commercially available inhaled insulin - don’t remember the name. It was bulky as all get out & was short lived. Tried Metformin for my insulin resistance but it left me with terrible stomach discomfort so it didn’t last long. Successfully taking Rybelsus and now ready to try Mounjaro! Have been able to reduce my daily insulin by 40% and have lost 30 lbs in the past 5 months!!
- 1 year, 1 month ago
  
  elsa.kaminsky@gmail.com has commented in the same post you commented in :
  Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
  This reminds me of another thing that baffles me, that researchers from T1DExchange can hopefully help our community understand: How is Symlin approved for T1 by the FDA, while Victoza/Ozempic are not? Aren’t these all GLP-1 RAs? Symlin has a much less user friendly duration of action and the requirement that it be taken with meals feels like a big step backwards when we have modern insulins and delivery systems like pumps that allow us to live our lives on our own schedules instead of eating only three meals per day. Is it true that someone on an FDA review panel freaked out about the possibility of increased hypoglycemia in T1 on these drugs? To me, that makes no sense. I had a higher A1c, higher insulin needs, and frequent unpredictable hyperglycemic excursions without Victoza or Ozempic, and I had a lot more hypos without these meds because I had to give so much more insulin for corrections. It also boggles the mind to see the package inserts on these drugs say that they have never been studied for use with insulin, when they clearly have been: There are many published studies in T1. I would love to hear from anyone who knows more about this—particularly given that P&T committees at PBMs and other entities use package inserts and FDA approvals as justification for their decisions, which dictate our access to prescription medications.
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