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Diabetes Education/Information

Discussion in 'Parents of College Kids and Young Adults with Type' started by Tarheel84, Sep 18, 2007.

  1. Tarheel84

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    When your child/teen was 1st diagnosed where did you go for information/education? I hear that many of you got educated while in the hospital but for those that (fortunately) didn't have to be hospitalized what did you do? Did your doctor give you information or maybe a CDE?? Did you go to class? For such a complex disease it seems that so much is expected to be learned on your own without a doctor's assistance.

    I get overwhelmed when I read some posts because I think where the heck did they learn all that??? My degree is in history not medicine so all this is overwhelming.

    Linda
     
  2. Alpha

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    Hi Linda, I asked my Dr about this even though our son was taken to hosptial and we we're taught there, we would have been taught through the same people.

    Here we would have been refered to the diabetic clinic, in our case the peads specalist and would be being seen by them, and educated by them.

    So no different really other than we would have had 4 days in hospital.
     
  3. Amy C.

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    We received basic education on managing things in the hospital, but most of the learning has been on our own.

    After 10 years, I still learn from sources like this forum. I am on the parents@cwd e-mail list as well. I learned how to be brave and to take charge of my son's care from them.

    I have read a lot of books, until I noticed they all were saying about the same thing.

    I learn from the endo at each visit (usually).

    I have a degree in music which hardly qualifies me to know what I do about diabetes.

    Living with Diabetes is confusing, but it is possible for a non-medically trained person to learn what needs to be done. The issue is having enough time to keep track of everything.
     
  4. wildfire6299@yahoo.com

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    Diabetes Education / Information

    Hi Linda,

    When my daughter was diagnosed my head was spinning too. Fortunately for us we had friends who their son and husband have diabetes. So, I took the info I received from the hospital, doctors, etc and then my friends explained more indepth. They were a big help. Now I go on this forum everyday and learn even more. Now 7 months later we are in a much better place. Hope this helps.

    Sandy
     
  5. kel4han

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    As an adult diagnosed with type 1 they teach you nothing. I learned everything online thru diabetesforums.com where adults help each other thru support and educating the newly diagnosed.

    When my daughter was diagnosed, I still had to learn more becuase children are so different. So, I searched for a forum for children with diabetes and ended up here. Learning from the experts themselves. ;)
     
  6. Tarheel84

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    I did get an appointment with my son's CDE in 2 weeks for some education/training. It's so hard having a college age son diagnosed right before he left for school. I was hoping that he would honeymoon on Lantus for a little longer but now it looks like he needs some meal time insulin as well. Not having him around makes its hard to gauge how all this is being handled.

    Since he is 2 hours away would it make sense to have him see a CDE in his college town as well as his one at home? Or is that too confusing? I thought it might help him if he had any questions or concerns but I guess he could always call the one here at home.

    Linda
     
  7. PattyR

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    I really think it would make sense for him to at least have a contact in his college town. Would probably make you feel better, too.

    I, personally, would not put much trust in the college clinics. My dd had made several visits there trying to find out what was wrong with her, all the while having the classic symptoms and no one caught on.

    There was not an endo in her college town, so when she was dx and in the hospital she was seen by a local internal medicine dr. who had experience with D. He was wonderful. The hospital CDE - not so much.

    After we got her endo here at home in Dallas, he and the college dr. communicated via fax, etc. about her care. It was good, too, to have a local doctor for illness, etc. while she was at school. The endo would even let her A1c testing be done at the school drs. office who would communicate the results back to the endo. When she came home for her regular endo appointments, he would have received the test results. It was nice to have that medical contact at school since she was 3 1/2 hours away. A drive that DH reduced to 2 hours the day of dx LOL.
     
  8. OSUMom

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    Yes, this makes sense. Excellent point! We would have done this had we not had a couple of months worth of doctors appointments before our son left. We may even still end up with an endocrinologist at Ohio State if he needs it in the next 3 years - totally possible!

    What school does your son go to? I'm sorry I do not know what a Tarheel is. :) I would find an endo not a regular physician.

    It absolutely is hard having him 2 hours away. It's heart-wrenching at the point where you are with his diagnosis!!!

    I wonder if Jeff or Ellen are are reading this thread and have any words of wisdom...
     
  9. Tarheel84

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    Laurie,

    My son is at Appalachian State ( the team that beat Michigan). My screen name, Tarheel84, is from UNC-Chapel Hill (tarheels), my alma mater, and the year I graduated (1984).

    I am going to call around tomorrow and see if I can get my son in with a CDE in Boone. It seems like when I checked there weren't any endos there...small town but there was a Dr who specialzes in diabetes and has a CDE/RD on staff.. I would feel better if I knew there was someone to see if he gets sick...other than the student health clinic.
     
  10. OSUMom

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    Ah yes, it's all coming back to me now... Appalachian State and we're the same age - I graduated from college in 1984 too. :)

    I'm thinking also about your other post other diagnosed questions and have talked to my husband. When Humolog is introduced you're thinking carb counting right folks? Your son will want to get familiar with this - Calorie King pocket guide has been mentioned. Your endo/CDE will come up with a carb to insulin ratio - have they? With the 3 units at dinner, they probably have guessed at what his dinner carbs will be. Is the endo or CDE communicating directly with your son maybe through email or the phone? My son has a roommate who is Type 1 and when we met his parents this past Monday, we found out this roommate does everything on his own. The parents are out of the loop.

    It sounds like your son is checking his blood sugar frequently throughout the day - this is very important.

    Make sure your son keeps an item or 2 in his backpack to keep his blood sugar up if he finds his blood sugar is going low - fast acting carbs - candy, juice box, etc.. Does your son know the signs of going "low"? You can find that on this web site I'm sure on in the recommending reading on these threads, etc... Dean has sweating, shaking, weakness.

    Rest assured, if I think of more, I'll post more.

    Thinking of you because I know you're worried and up at night worried about your boy..... been there done that....... :rolleyes:

    Take care, Laurie
     
  11. Margaret O

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  12. Tarheel84

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    I wish my son was communicating with his CDE but unfortunately not...I am the go-between right now. He has an appointment with her in 2 weeks for some basic education (which he has never received). Since he wasn't hospitalized and wasn't put on insulin right away there hasn't been a great urgency to teach him what he needs to know. He tests a few times each day but not sure if he writes anything down.

    I want to go to this appointment but am considering that it might be better for my son if he is forced to learn this himself instead of depending on me. He is a very intelligent person just a little immature. He still tells me I worry too much...but thats only because I have learned more about this disease and understand the importance of taking all this seriously...Not sure he is there yet.

    I honestly don't know the extent of what all he knows or how much information he has obtained. For example the Dr. and CDE have never mentioned keytones to us...I only learned about them thru these boards. I expect that will be something she will discuss in 2 weeks.

    Anyone else have experience with an older teen/young adult being diagnosed? Should I be there for the visit with the CDE??

    And finally...do you ever get to the point that diabetes isn't the 1st thing on your mind in the morning and the last thing on your mind at night? (Not to mention all through out the day).

    Linda
     
  13. Margaret O

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    Linda,

    I highly recommend you go to the appointment. Its great that he was not sick enough to go to the hospital with his diagnosis, but most of that time we spent at the hospital was learning the basics and learning how to communicate with the Diabetes team.

    Your son should take the lead at the appointment, but everyone in the family needs to understand the disease and how important managing this is. The more everyone hears the same thing, the better you can work as a team. Your son may be shy about asking questions and you probably have a ton (make a list) and while you may "embarrass him" with all your questions they are probably some that he is afraid to ask.

    We always have two parts to our appointment. One with both my son and I, and one with just him and the nurse or CDE. I know she is addressing things like too many highs, not logging his numbers like he should, driving, drinking, drugs and whatever else he is thinking about ;) and I am okay with that.

    I have been told you do wake up somedays and don't even think about it (my friend has a 28 year old daughter with Type 1 and she told me this) but I am not even close to that yet. I think about our son all day. Plus I just plain miss him.:(

    Margaret O

    Mom to Pat -18 dx'd Type 1 4/16/03
     
  14. OSUMom

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    I absolutely agree with Margaret that you go to the appointment with your son. While your son probably should take the lead with the appointment, he may very well not (only thinking of my own son here) - but if you do, he is learning from you on how to do it - so next time maybe ... have questions written down. It's easy when you're there to forget and leave with questions unanswered. The bottom line is someone needs to - if he doesn't - take the reins to ask your questions, etc...!

    While we had a mini class in the hospital, this was by no means a huge source of information, but it did get us started. By far, we learned the most from our appointments afterwards with our practice's CDE and endo - when he was getting started on his pump - his insulin requirements were much higher than your son's it sounds like. So this is all YDMY - your diabetes may vary.

    You most definitely are at that all consuming time. It does get less consuming I promise - we're 15 months out from Dean's diagnosis. That first summer was a whirlwind. Hang in there!!! :cwds::cwds:
     

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