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Trying to post -- newbie

Discussion in 'Parents of Children with Type 1' started by words4mom, Sep 2, 2006.

  1. words4mom

    words4mom Approved members

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    Hi,
    I've been having trouble posting here even though I was successfully registered. Wasted a lot of time writing a long post to submit and then got message I'm not allowed to unless i'm registered. Here's hoping.


    Candice
     
  2. words4mom

    words4mom Approved members

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    My post got through! Here's my intro.

    Hi,
    This is my 1st attempt at posting. I'm still finding the wonderful options on this forum a bit bewildering. I still can't get it to work through my AOL server (says I'm not registered, but I am), and the webmaster didn't know why either. So I'm on through Mozilla. Hoping I'll get replies on my AOL account, but I guess I can check back here. Sigh. One more of the million new hurdles since diagnosis!

    My seemingly healthy 15 yo son gave a urine sample at a routine pediatric annual physical last May. The doctor and we noted no symptoms of illness. Kevin has been long and lean since birth, like his father. In May he was 6 ft. 1 inches tall, and 122 pounds (yes, rather skinny!). He had already grown 6 inches a year for 2 years in middle school, spent most of the time on the couch being tired, lol. No known history of Type I in either of our families.

    I stepped out of the shower the next day to find my world had changed. The pediatrician had called and left a message. My pulse quickened already, as the doctor never calls (usually a nurse, if anything), and if so it's not good news. He said Kevin's urine test showed high sugar (number meant nothing to me then), it may have been a fluke but we needed to check it out, and please call him. Silly me, I thought about urinary tract infections, but knew those were rare in boys. I was confused, but told myself we'd just had lunch before the appt., so we probably messed up the test, or they got his sample mixed up w/ someone else. He may have mentioned diabetes, but that seemed impossible to me, as Kevin didn't have any signs (not obese, not overly thirsty or peeing a lot, or seeming sick).

    I called and got a nurse, but she went and got the doctor. Another bad sign, they never do that. I expected to be able to bring Kevin in after school, maybe even the next day. They wanted him in that day, a couple of hours after lunch. My heart sank even further. This could be serious. But I still couldn't imagine what it was, diabetes just seemed impossible.

    I called the high school where he was a freshman, and contacted K. to arrange it. On the way over, I told him it was probably a fluke but had to be checked out. He wasn't nervous, and didn't recall being overly thirsty or peeing a lot or other symptoms.

    The blood glucose test (unofficial, per their office lab) came back in the high 300's. The doctor said it was probably diabetes, but he couldn't confirm officially. We needed now to see an endocrinologist. Again, I couldn't grasp this (I do have a pretty good brain, but this thing was so big I couldn't get my mind around it). I still thought we could go next week and I'd have time to process all this. He made an urgent appt. for us to spend all of the next day (including my husband) at Children's Hospital in Washington DC (Rockville is a Maryland suburb of DC). My heart froze at that point, and the world seemed to shrink. We didn't have the official word yet, but something was very wrong with my child.

    Children's confirmed the diagnosis in about 5 minutes. We spun into the world of Type 1 diabetes, and it felt like a door slammed shut. Phrases like "for the rest of his life," "no cure, only treatment," "eventually all of his pancreatic beta cells will stop functioning," floated around us as we sat in a daze. This dignified, competent, petite woman doctor in high heels looked up at my tall son and told him, "You have a choice. You can do what we know is best for your condition and take control of it and do whatever you want in your life . . . well, I think you can't fly planes or be in the military ... but if you do not do what's best for your diabetes, it will control you and your life. It's up to you."

    Kevin liked that, and I thought it was beautiful and hopeful. I've thought of it many times since. A lot of truth in it, but along side it I feel is the myth of "Control." We do our best, Kevin does an outstanding job. But we lost the lives we had and they won't return. We manage his diabetes the best we can, but we don't "control" the crazy ups and downs as his pancreas is failing and his growth hormones are rising and falling and his school stress is racheting up. This is a different life, and so damn hard sometimes it makes me weep. I was a wreck for at least a month, but I can say I cry a lot less often now and it's amazing what one can get used to.

    Kevin is lucky, so they tell me. His diabetes was detected at a very early stage. Per the first A1C, he's only had it for a month or two before diagnosis. So he's had about 15 years of healthy pancreatic functioning and body wellness. He got through his major growth spurts without diabetes. I'm grateful for all of that, and honestly can't imagine all that many of you are dealing with having babies, toddlers, or little kids with this disease. My heart goes out to you.

    But getting diabetes at the end of freshman year of h.s. means Kevin has to adjust to it all so much faster. He's an semi-independent operator, takes a city bus to school and home, dresses himself, does his own homework, etc. Having his 2 parents in his face every time he turns around to ask about symptoms and do carb counting and help w/ injections etc. is a huge change for him, and not a fun one. To have to suddenly be tethered to the clock and carb counts and syringes and a backpack full of supplies and worried parents is all new and not much fun. To be so different from all his friends, deadly embarrassing at his age and w/ his personality. He goes to a h.s. of 2000 kids, so there are 7-8 other diabetic students and the school nurse is used to that,and good with it (thankfully). But Kevin doesn't know any of those kids and none are in his classes. Having me contact all his teachers is also embarrassing, even though it's by e-mail & they are very understanding.

    I've talked to other moms whose kids were/are diabetic teens (not many, as so many more have younger kids). But it's quite different to have had diabetes for years and then go to high school. Kevin is brand new at this, and so are we. And I'm terrified about how we only have 3 more years to help him and teach him what he needs to know before he leaves for college.

    Currently Kevin is on 3 injections per day (R and N insulins) and checks his blood glucose 4 times a day minimum. He is still producing a fair amount of endogenous insulin w/ his pancreas, which is great on one hand but unreliable and messes w/ his numbers on the other. So he is on very low doses of insulin. This is still the honeymoon, but not a smooth time. He had to have his 4 wisdom teeth removed in June (talk about crazy-making) and had a stomach virus in August, both times unable to eat solid food for awhile. Stress shoots his numbers up, exercise can help but can also bring lows. We are always playing catch up.

    At our 3-month clinic visit, the doc said he's doing well and no big changes are needed. But Kevin wants to try the basal-bolus w/ the pen for the flexibility. He's teenager, and sick of having to wake up early and eat by the clock and not be able to easily go places late or overnight. He's still not willing to inject in public (only in our van), which makes it all harder, but i can't make him adjust faster than he's able. The pen is much less medical looking and more durable. Kevin does all his own injections now, started doing them the first night. He does all his own finger sticks. Must sound like heaven to you w/ little kids! I'm proud of him. But we have to make sure it's done right and on time and occasionally he's too shaky or tired to do it himself.

    The pen w/ Lantus and shorter insulins is a required step at Children's before even considering the pump. Kevin isn't sure he wants to do the pump, and some people stay w/ the pen for a long time or permanently. I'm still so overwhelmed by dealing w/ supplies and routines and foods and insurances and the scattered pieces of my old life that I kind of dread changing. We decided the start of 10th grade wasn't a good time to change, and the doc agreed, but we will probably try the pen later this year. People tell me the stress of learning it and getting doses right is well worth it.

    Oh, dear, such a long post. A lot bottled up and rare to find people who understand all this. Thank you for having this place to vent, and to anyone who read this far. I would love to hear from other parents whose kid got Type I as a teenager, if there are any here. Any hand-holding for a first-year mom would be appreciated. Also any tips on how to use this forum.

    Thank you!

    Candice in Rockville, MD
    mom to
    Kevin, age 15, dx. 5/11/06, on injections (R & N)
    Megan, nearly 13, non-D
     
  3. mommyofocean

    mommyofocean Approved members

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    Sorry to here about your son. I hope this forum helps. It has helped me alot. My daughter is only 5yrs old and was diagnosed over a year ago. So she is much younger. I can't imagine trying to control diabetes when she gets older and is going through hormonal changes and just letting her do all the care herself. That freaks me out. I don't know how good the forum for teens is on here but I know there is one. So if your son wants to talk to someone his age he can go there. Take care and hope to talk to you again on this forum.

    Carolyn
     
  4. muddymessalonskee

    muddymessalonskee Approved members

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    I can relate to the teen-age-with-diabetes thing; my son Dave was diagnosed last January in the middle of his freshman year, a few months before his fifteenth birthday. He diagnosed himself (actually he had mentioned that he might have diabetes the month before, but based on his replies to some questions, I decided he was concerned because his younger sister has T1 diabetes); his blood sugar was 610, his A1c 9.3, not too bad, considering that we now thing he was short of insulin since at least the beginning of the previous summer! Anyway, he does all of his own care. I tell him the carb counts of the meals he has at home, and I am available if he feels he is in "over his head", but he is fiercely (and sometimes stupidly) independent. He has trouble keeping a log. Fortunately his endo has said that he cannot get a learner's permit for driving until he is able to produce blood sugar and carb records...

    Deborah
     
  5. selketine

    selketine Approved members

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    I just sent an email to you through this website - so check your email. I'm in Rockville, MD as well - probably living close to you. I've got lots of resource info for you if you're interested. My son William is 4.5 yrs old (a lot younger) but was dx'd over 2 years ago.

    Feel free to contact me,

    Carol G.
     
  6. pookas

    pookas Approved members

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    hi Candice, and welcome to the group. It seems to me you are a writer the way you were so descriptive in your story. I was hooked. You'll get lots of info here and advice.
     
  7. bethdou

    bethdou Approved members

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    Hi Candice...

    I'm sorry to hear that your son was dx'd....you're right, the world has changed and it's not going back. That was the hardest thing for me to get my head around - that suddenly my daughter was going to be tethered to all these tests and supplies and had new needs that I just couldn't "fix". But it's great that you found this forum and can vent here - you are exactly right, we ALL know exactly what you are feeling. Meg was 8 at dx, so not nearly so independent as Kevin; we still do most of the care and she participates, but doesn't initiate. As his honeymoon ends things should become a little better, though stress and growth hormones are a nightmare (we are discovering that puberty realllllly screws things up:rolleyes: ).

    {{hugs}} to you and your family, and welcome to the little world here!
     
  8. Amy C.

    Amy C. Approved members

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    What a great narrative! I am so sorry you had to type all that twice!

    It seems that you are considering Lantus/Novalog or Humalog instead of NPH and Regular for your son. I think this should be done sooner rather than later. My 12 year son is on this regime and finds it much more convenient. It releases you from the strict meal amounts and meal times. He eats whatever he wants at meals that can vary in time by 3 hours. The Lantus is generally given at night -- around 10 and the humalog/novalog when you eat. The pen can be more convenient than syringes.

    It is possible to have as good control on syringes as with a pump. My son has done this for many years now. I think there is a tiny bit more of convenience with the pump. My son is about to go on the pump after 9 years of shots, so I am about to find out if it is better.

    You and your husband will find out what the balance is for you knowing/doing everything and your son doing it. He sounds smart and should be able to pick up the care himself.
     
    Last edited: Sep 2, 2006
  9. Pammers

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    Welsome Candice. So sorry for what your son is going through. Definitely get with Carol, she is super-knowledgable.

    Amy good luck with your switch to the pump. I will praise the value of the pump all the live-long day.

    As Joey would say, "I love my pumpy!"
     
  10. darcyann3

    darcyann3 Approved members

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    Hey Candice,

    Welcome to the group! I am sorry to hear that you have had to go through all of that. It is very interesting to me to hear of people who have routine check-ups and come to find out they are diabetic. My husband is involved in Navy recruiting and it is amazing to find out kids who go up to test and have physical's to go into the Navy only find out they can't as they are diabetic. That would be just as shocking!

    My son Trevor is much younger, 7, but was dx when he was just 16mts old. So he doesn't know life without diabetes. He was on UltraLente and Novolog until this past July when we put Trevor on a pump. For us the pump is great as he doesn't have to be on any sort of meal schedule and his numbers have drastically improved. They are not like a yo-yo anymore.

    Good luck to you and your family!
    Darcy
     
  11. Tamara Gamble

    Tamara Gamble Approved members

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    Hi Candice, My son is eleven, almost twelve so a bit younger than yours. He was diagnosed almost a year ago and is pumping. Give yourself and your son time to adjust. Things will smooth out. He will probably change his mind in the future, you just need to give it time. Tyler was not about to try the pump in the beginning. I was scared to tell you the truth. We had just gotten the shot thing down and I was afraid of throwing something new into the mix.

    We went to a community day at the hospital and they had all of the reps there and one of them was a pumper and dx'd at a young age. When Ty saw him with one there was no stopping him. These kids face their own mortality when this happens and wonder what the future holds for them and it's scary. This guy was young, buff and good looking. The picture of good health. He was engaged, played soccer, was excited about planning a new life and diabetes just happened to be part of who he is. Ty realized that day that it would be okay. He too would be healthy, strong and have a family.

    Ty listened and watched. He has always wanted a wife, family and plays soccer. Sounds wierd but he's had a plan since he was very young. I take it as a compliment because he say's that he wants what my husband and I have. Of coarse this includes our house. We told him to go to college and get a good job so he can buy his own house cause he can't have ours. But we are honored none the less.

    Kevin will find his place in all of this. It's just hard on a young man. So many questions, so many what if's. They are so private at this age. My daughter is non-d and going into tenth grade so I can only imagine what he is going through, diabetes plus adolecense. I would suggest to get him talking. Help him to be more open about this disease. This will help him to cope much better.

    Good for him that he is moving forward and wanting to switch over to the pens etc. This shows that he is trying to take control and get his life back. He may not be interested in the pump at this time but he is trying to take charge of this disease in his own way and that is a huge step.

    Just a note that my daughters friends are at our home quite frequently and are always exposed to this disease because of her brother and really are not bothered by it at all. They are more curious than anything. They see him eating when he wants, what he wants. They see him swimming, playing, running and I think they think it's no big shakes.

    I know that your son is probably worried about how others will percieve him. Truthfully, for Ty, it hasen't changed for him as far as the friend factor goes. No one thinks he's strange, sick or freakish. They have openly accepted him disease or no disease. I am so thankful for this. If anything they think he's the bomb because they could never imagine having to do an infusion site change with out screaming. Ty can. Of coarse they don't realise that it really doesn't hurt.

    The girls love him. He was so worried about this, but it hasn't changed a bit. At this age mom can talk till she's blue in the face, but if some girl comes along and just smiles at him it makes it all better. Huh! Goes to show you how I rate.

    Hang in there and give yourselves some time. It just takes time!

    Good Luck! God Bless! Tami
     

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