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My 10 Year old daughter was just diagnosed with Type 1.
Any practical advice would be appreciated.
hey rosh!! Welcome!!
i was 11 when i was diagnosed… around the same time. i know its a lot to digest a lot to handle… but the technology is AMAZING and although its hard its a lot easier than it was 20 or 30 years ago… even in the 10 years that ive had D as we like to call it, so much has advanced!!! i would suggest going straight on a pump.. its really much easier than shots, i did that for a while in the beginning and im in much better control now that i have a pump…. there are a lot to choose from that could fot your daughters needs… im on the omnipod and i LOVE it bec its wireless which helps me keep ot hidden, but there are others that like the medtronic the best while some like the animas….do research on all… and feel free to ask us questions 😉
thank you cofeefan,
we were actually recommended to the Omnipod by a close family member. We are awaiting insurance approval. good to hear that you like it we were a bit hesitant since someone told us girls sometimes don’t like it. ( I cant think of why )
would like to know you managed in school. the nurse in my daughters school is not competent enough to administer the insulin. b”h after a week we finally got the gym teacher to do it so my wife doesn’t have to leave work to take care of it.
RoshHakoel – Welcome 😉 i’m sorry you have to join us here although you’ll sure find a very welcoming and supportive group here… it must be very difficult for all of you and i wish you all the very best in coping, accepting and succeeding!!
I know you like the omnipod Cofeefan, although to me it sounds way more frightening than the Metronic / Animas! RoshHakoel, to me the hesitance is because it’s actually attached to you with no wires (how does that work anyway btw?!) whilst the others have the canula with the wires and the pump can than be worn / hidden..
Managing in school, i’m glad you worked it out with the gym teacher! During those school years i was only taking insulin twice daily so didn’t have to have it in school.
According to the circumstances / personalities etc, perhaps you can try to give your daughter as much of the responsibility as possible.
All the very best!! Keep us posted 😉
rosh- in school, i used the principals office whenever i needed it. (my school was AMAZING AMAZING beyond words with whatever i needed!! i give them so much credit!) in the beginning my mother would come to help me with injections but i got very independant with it very quickly so i just ended up doing it myself after a month or so. i BH adjusted quickly for some reason. your daughter wldnt wanna do it herself? i know it sounds weird but i know for myself i was happier with that. but its a personality thing…. its good you have someone there to help her out!
princess- i dont see why the omnipod would be different than a regular canula. have you ever seen how small it is? its really much smaller than your prob picturing. even people that know its there cant find it. it just sticks on my skin with the same adhesive as other infusion sets with this little “shell” on it that keeps the insulin. the shell is as long as my thumb and as thick as the nail on my thumb (lol a lot of finger comparisions i guess 😉 and it ‘flattens’ under my tights/skirt so its really hard to see.
hello Rosh! Welcome to our “exclusive” club. I am a father of two D kids. (I am also D) My daughter is in first grade and she is on the pump. Once the kids are on the pump they can do so much themselves. Tell the school to TRUST her. If she needs to call home.. but she will very soon be able to do so much herself because the pump calculates it all. It’ll also be 1000x easier for her if her friends know. They’ll get used to it and wont think twice. If its a secret it can be a real burden – it’s too much for the kids. Also do you know about ForWarD/ Rabbi Meisels’ organization.
Coffee,Princess hi ppls! 😉
Hello Rosh-Welcome to our group! I was diagnosed when I was 18 years old (im 22 now and just got married :)! I don’t really know what its like to be diagnosed as a young child but I do work (intern) at a pediatric endocrinology office now and I see lots of kids with type 1. From my experience it seems that kids that are more independant about their Diabetes are more succesful at keeping good numbers. Of course in the begining parents need to be involved etc..to help teach the child but eventually when kids are so to speak “in charge” of their own diabetes they dont feel like a sick child.
If you want you can get in touch with me if you need help or advice ill LOVE to give some.
Always remember that Hashem doesnt test someone with something they cannot handle! Just be strong and know that everything is for the best! 🙂
Hatzlacha Rabba!
Hey dx3 glad to see you here too!! It’s so quiet this place!!!
Rosh, how is it going? What pump have you decided to go for?
Cofeefan – it sounds really interesting actually! So what do you have on you? Just this thumb sized insulin? Together with or separate from how much to give and all the settings on the pump? Not connected to a meter, is it?
Dx3, like your advice 😉 if i could i’d tell all the parents to help their kids take the responsibility themselves!! Oh well, you have to be old enough for that too :-/
PrincesEagle:
We decided to go with the OmniPod. , we got it set up today
They made sure she knows how to use it all by herself.
DX3: we are not hiding it. And we are not advertising it. She told some of her freinds
All the school staff were informed.
Btw: what do you guys do on shaboos with the pumps. (Should I ask my local orthodox rabbi)
Thank you all in this fourm for the support. We will keep you informed
rosh – well good for you. i had the same attitude about the D and i am happy that i did.
we did ask about shabbos and we were told that we can do everything except changing the battery (makeh bepatish). we do try to make a shinu if we can but basically we do everything regular.
princess – i was in the 300’s today for most of the day. i am thinking of raising my carb ratio. what do you say?
EDITED
Just wanted to report – we chose the Medtronic and my daughter is B”H very happy with it. Her numbers are quite steady now, she hasn’t gone low as often as she was and I don’t worry about her as much at night! She did have one day where she was much higher than normal so she changed her infusion set and they went back to normal. So I think we’re getting the hang of it.
Thanks for all your support.
silver – i am happy that you picked medtronic that is what i have and i am very happy with it. i hope things continue going well.
Hey people, d’ya realize we haven’t yet welcomed the new page???? Rebbitzen, you’re missed over here!!!!!!! (as well as all you others!!!!)
RoshHakoel, i’m glad you chose that, Cofeefan and Alls (how are you anyway!!) both seem to be happy with it and a pump is a pump 😉 I wish you all LOADS of luck with it, and yes, pls do keep us informed.
csilver, thank you for reporting back! i’m glad you got the metronic, i know many are happy with it and the CGM is always an amazing addition (in my opinion anyway)
Dx3, how are you doing? What did you do in the end? First thing is to make sure it’s not just this one, because sometimes a raised number can be from, e.g. fighting an infection which you either do or don’t know about!
Than make sure it’s not your basal, i sometimes put on a temp. basal.. i REALLY hope it goes back down for you and ALL OF US!!!!!
Oh – and about shabbos, i sometimes use something different, i.e. my knuckle, to press buttons because, i was told, it’s BETTER to do so. If i’ve not enough insulin i change on shabbos, on 3 day yom tov i always have to, and battery – unless i wouldn’t have pens, i’ve gone back on pens for the day 😉 😉
welcome!!!!!! i’ve been so busy! but i’m going nuts! really trying to get my numbers down!!!!!!!!!!! help! my hba1c is so high!! and i’m in shidduchim!!
reb- hi again! Oy i feel bad? Whats the prob? (what was your last A1c?)
what is considered the ideal A1c, what would be high and what would be too low?
i think my last one was 8.3! but to have healthy kids, i heard it has to be MUCH LOWER!! i’m not married yet, but trying to get there, and i need this under control! help!!
hi reb! welcome back!!! i know the feeling i am sorry you feel this way!!!! did you discuss with your doc how u feel? do they have any suggestions how to lower it? do you see any patterns in the high numbers? it really helps me to write all the numbers down at the end of the day… that way at the end of the week i study it and see what times im drifting up and then i figure out why and try to fix it… i know not so practical time wise but it helped me…..
Hey Rebbitzen, so glad to see you back!! Not so glad to hear of the frustration (and fear?) .. i KNOW how hard it is, cofeefan’s questions/suggestion is a good one! Sometimes i put a temp. basal on for a while and that just gets my numbers better at least until i figure out where i can up it more / carb ratio etc.
Do you think the food you eat can be affecting the numbers? Taking plenty amount of time before?
i really am sorry for this and i hope and pray the A1c will COME DOWN quickly!!!
Allsgr8, so glad to see you – you’re missed!!
Oomis1105, put it this way, a good A1c would be in the 6’s, lower 7’s and high 5’s are usually fine too, the problem with lower than this is that it usually shows too many lows. It does depend on who you ask too!! Lots of luck.
hi reb- You’re right 8.3 isnt too good. Do you ever upload your pump and try to figure out where the problem is? Like I mentioned above, ive been working at a ped endocrinology office for the past while ..ive seen many uploads and bh been able to figure out where lots of the highs were coming from…do you want me to take a look at your upload? maybe we can get in touch if you want to.. (Id love to help!)
Hey people, how are you all faring????
Hi all!!
i’m so frustrated!!! i spent a really long time today trying to explain to someone (who i considered a friend…) that my type of Diabetes is TOTALLY different than type 2 and that it doesn’t matter if i lose weight it WONT GO AWAY!!!! i am so annoyed!!!! they did NOT get it!!! i really find that upseting cuz i know i did nothing wrong that i got D and it just happens because Hashem wants that but when people think it has to do with me and eating etc its jst upsetting!!!! ok i feel better now that i got that out of my system!! thanks for “listening” everyone!!!
hey,
so i’ve been working with this diabetes educator, and haven’t taken my new A1C, but my numbers are much lower bH! they’re even too low. the prob is that when im 90 or something, i feel low, and i always tend to drop!! can’t seem to just be stable and feel good..but i guess one step at a time!! i’m just nervous , cuz the A1C will show from the last 3 months, in that case, it might not come down too much!! 🙁
cofee- Yeah, they just don’t get it…. you can talk till your blue in the face but some people think they know better…
Or how about when people say, “Oh, so if you’re on the pump than you don’t have to do anything it does everything for you! you can just eat whatever you want!” ..yeah right! lol!
lol allsgr8 thats true i get so annoyed with everything!!!
i was looking on a website for a cute tshirt for a friend for her birthday and i found a ton of ADORABLE diabetes tshirts!!! i decided im buying myself one! (theyre not for outside of course…) one said “type 1…the real diabetes”. one said “never underestimate a diabeteic” “i make diabetes look good” etc.. some were soooo cute!!! i thought id share.. i think its funny!!!
Hey Cofeefan, that’s soo frustrating… yes, we can understand that here… i’m sorry. Allsgr8, lol, grrrrrrrrrrrrrr. How are you doing???
Rebbitzen, how’s it going? So glad to hear you’re numbers lower – how are they now? How are you faring?
Those tshirts sounds adorable indeed!!!!! What’s the website??? I love all these accessories, charms for the pump, colored meters etc..
A1c went further down!!! Still high but at least better.
hey! so my numbers are still low! but i’m just excited that hopefully the a1c will go down. i have at least 3 lows a day now. yesterday was crzy! i had a 36!! i was so nervous i was going to faint!!
btw, its been such a while for me, i don’t even remember who the kallah’s were?..did you guys get married yet? hows it going?
omg!!! sweettooth! mazel tov! i can’t believe it! today is your wedding day?! omg!!!!! enjoy!!!!!!!!!!!!!!!!!!!!!!! and thanks for having me in mind! i’ll need it! can’t wait to hear how everything went!!! omg!!!!!!!
mazel tov sweeet!!!!!!!!!!!!!!! so excited for you!!!! you shld build a bayis neeman!!! have us in mind!!!
im going to the doc tomorrow!!! HEEELP!!! ive been having SUCH A HARD time lately!! i dont know whats wrong with me!!! my a1c is gonna be high!!! im soooo nervous!!! i used to be so tightly controled and for some reason everything is upside down!! im doing everything the same!! is it possible for ones body to just “not care” and do whatever it wants???? thats what i feel like!!! HELP!!!
Sweetooth- WOW! MAZEL TOV!MAZEL TOV! May everything go smoothly iyh and may your life be filled with much bracha, mazal, hatzlocha and only simcha!!!!!!!!!!! Im so happy for you!!! :))))))
Reb- I was the other kallah btw!! 🙂 Im bh married for three month already :)!! (Does that still make me a kallah?)
Im Yirtzeh Hashem by you and everyone else here very very soon!
princess- congrats on gettign your A1c down! Im so proud of ya! 🙂
wow! allsgr8! mazel tov to you too! when youre out of it, your’e out of it..i totally forgot who was who and what e/o was up to…ok..so you already are married for 3 months! wow! How did the wedding go? is your husband used to all the machinery, high’s, lows…
so i just got back from my doc… a1c is 6.5!!!!!!!!!!!!!!!!! i am SHOCKED!!!!!!! i thought it would b in the 8s!!!!!! i have no idea how that happened but bh!!!! i m so excited!!!!
MAZZEL TOVV Sweettooth!!!!!!!!!! ? ? ? ? ? !!!
Allsgr8, how IS married life treating you??? Whoa, it’s already been three months.. THANKS for the congrats, it’s not so easy!
Cofeefan! I’m sooo glad to hear that A1c!!!!! WELL DONE!!! KEEP IT UP!!!!! i was thinkin’ of you and hoping the appointment would indeed go well:)
Rebbitzen, how’s the numbers..?! Hope y/our A1c will be as good as cofee’s – well near enough anyhow!
omg!! IYH by me! whoa! good for you!
Cofee- WOW!!!! CONGRATS!!!!!!!!! Keep up the awesome work!!!
Reb and princess- married life is bh great!!!!!!!!!! :))))
My numbers were actually perfect during the wedding (don’t know how that worked) I thought they would be sky high when we went home but they were low 100’s! bh!
Yes.My husband is used to everything by now 🙂 He caught on very fast bh…he’s a pro already!
wow! thats amazing that your numbers were that good! and thats so cute that your husband is a pro..i dont think anyone in my family is a complete pro..like wouldnt know how to change a cartridge…but they know the basics bH! 🙂 and my numbers are still low a lot! i dont know whats with me! i literally can change from one week to the next. always be high one week, then always low-without any changes! its so weird!
thanks everyone for ur good wishes 😉 i DO NOT know how that happened but NOT COMPLAINING lol!!!
alls- SO cute abt ur husband! my mother doesnt even know how to change my cartridge!!!!! the only things she knows how to do is test my blood and use the glucogon (BH we have never had to use it just i taught her just in case…. c”v)
reb- when you say you have lows… is it in any pattern? or bec of over bolusing? or maybe too high a basal? so weird that it happens one week and not others…. im happy to hear youre doing well!!
hoow are you princess?????? how are your numbers???? we havent heard any of your writings lately.. any new words of wisdom/support to share?
and dx3???? you there??? havent heard from you in a while!!!hope all is ok!!!
Hey, Hi e/o! I see I’ve been missing out a lot around….
Belated Mazel Tov alsgr8!!!!! That’s soo nice,
and don’t worry, it only gets better!
I came by to get some congratulations! just finished my first box of Lancets!!!! That’s after 3 yrs!!! Pretty bad,huh!!??
cofee-it seems to be basals..but i’m on really little insulin. (24.25 units a day)!! its weird! i’m working with the diabetes educator/nutritionist person tho! hopefully we’ll get it! I reallllllllllllllly hope at least the hba1c will go down!!!!!!!!!!! PLEASE HASHEM!!
rebbitzen; is this de/nutritionist ur working with helpfull?
is it s/o private or through ur doc?
would love to find out about s/o private, who’s good…ne info would b helpful
wow Reb thats NOTHING!! how do you manage on such a small basal?!?!? mine is like double that!!! sounds like youre working so hard!!!! im sure your a1c will be fantastic!!! keep me posted!!
i am working really hard!! i just want a good a1c. i have this feeling that once its good, its easier to keep it good then to get it down the first time. it could be totally not the case..its just my feeling..
and metoooo-the nutritionist/de is good and its not thru a doctor, so you’re paying out of pocket.. it gets expensive. its 30 bucks for 15 min. And i dont know where you live, but its not a central location…
metoo- LOL congrats on finishing your first box of lancets!!
In the beginning I was religious about changing mine so I finished a lot the first year after that its been downhill… 🙂
Also, I am not licensed yet but I am almost finished my degree in the field (I dont want to specifiy here because its a bit too public for that) but if you want I can help you out ..I do have quite a bit experience counseling type 1 diabetics….. maybe the mods can get us in touch if your interested… (no pressure!) 🙂
allsgr8 that would b cool, now how do we arrange that?
Does princess eagle have ur email address?
she has mine, mayb she can fwrd to u
princesseagle?
Metooo, nice to see you again!!! It’s sure been a long while… Yes, i’ll get you two in touch together.! Omg, you’ve taken so long to finish just one box..!!! Well, congrats to that first box, party for it because it’ll be three years till the next time!
Reb, i’m so glad to hear your numbers are doing so much better, i really do hope it will get your A1c down!!! I think your logic is correct, that once it’s down it’s much easier to STAY there!! Keep us posted…
We’re still praying for each other aren’t we?!!!
Reb, that’s really not very much basal, cofeefan, double that sounds right here too!!! What’s the rest of you taking??
Cofeefan, that was really nice of you to comment that earlier post to each of us – my numbers are slacking, i have to get back on top of them because i want to get a1c down!!! How r you doing???
Allsgr8, it’s so nice that your husband is a pro!! Great for the almost finishing the degree!!!!!! Can’t wait to hear you’ve got it..!!
Dx3 – miss you here too 😉
lol metoo im also sooooooooooooooo bad at changing my lancets….. i shld do it more often!!!!!! i just always forget!!! dont tell my endo 😉
i agree with you reb on ur thoughts abtthe a1c.. i know i worked very hard to get it in the 6s and i find it easier to keep it like that (even though i thought i would be much higher this last time…) i wonder why that is though…. like its the same amout of work and control so why is it easier now??? hmmmm i guess one of the mysteries of D =)
(btw its so nice to have this thread up and running again!!! i missed all the support and encouragment from all you guys!!
reb and coffee- I agree with you too about keeping numbers good rather than bringing them down.. I think it has more to do with motivation bec its easier to be motivated to continue something good than to work on something to make it good… and perhaps have to change some habits somewhere along the way….whadya think? Either way its worth the effort 🙂
So my new thing is that I exercise 45 minutes every morning and guess what??!! My numbers have been great bh!! I really think its making control a lot easier. For example, yesterday i my highest number was 93 and lowest was i think 77!! (I also went low overnight but im not sure if it was from the exercise bec i exercised in the morning…) Im gonna give it another night or so and then ill decide if i need to lower the overnight basals when im religious about working out…
Oh! and about my husband being a pro, so this shabbos I lit lecht and then I realized that I hadnt changed my pod yet (it was the third day already)I know that technically i cld have done it but my husband was still home so he did all the muktzah stuff for me(pressed the buttons filled the pod etc) and I just put on the pod..yup he’s learning! 🙂
wow! Allsgr8-so cute! and when you do excercise-you dont take off your pump? i would go low!!!!
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