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Page 1: Getting Started with T1D Carb DM · • Beta Bionics: makers of the iLet Bionic Pancreas, a bi-hormonal pump that delivers insulin when you’re high and glucagon when you are low.

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GettingStartedwithT1D

CarbDMCarbDM’smissionistobuildasupportivecommunitythatimprovesthequalityoflifeandhealthofallthoseaffectedbytype1diabetes.TheCarbDMcommunityfostersconnectionsamongpeoplewithdiabetes,theirlovedones,andmedicalprofessionals;promoteslearning;anddevelopsstrategiesforthrivingwithdiabetes.CarbDMoffersthefollowingprogramsthroughouttheyearacrosstheBayArea:

▪ Coffee&Carbs,agatheringforparentsandcaregiversofchildrenwithT1D;▪ CarbsinthePark,agatheringforfamilieslivingwithT1D;▪ Dia-Buddies,outingsandgatheringsforteenswithT1D;▪ LittleCarbs,aplaygroupforchildrenunder5withT1Dandtheirparents;▪ Beer&Basals,agatheringforadultswithT1D;▪ Type1Topics,aspeakerseriescoveringavarietyoftopicsrelevanttothetype1 community.

Inaddition,CarbDMincollaborationwithotherorganizationsholdanannualBayAreaDiabetesSummitinMarch,aMotherDaughterWeekendintheSpring,anAsianOutreachDay,aWorldDiabetesDayCelebrationinNovember,andotherannualprogramsthroughouttheyear.Formoreinformationandacalendarofevents,pleasevisitourwebsiteatwww.carbdm.organdjoinouremaillist.Presentationon“GettingStartedwithDiabetes”givenbyCarbDMFounderTamarSofer-Geri:http://www.ustream.tv/recorded/29936526GeneralTips:

• Thediabetescommunityisthefriendliest,mosthelpfulcommunityyoucanfind.Useit!• Gotodiabetesevents.Itwillhelpyoufeelnormalagain.• Giveyourselftime.Youdon’thavetolearnitallrightaway.• Takebreaks!Taketimeforyourself-youreally,reallyneeditanddeserveit,nowmore

thanever!Gooutbyyourself.Diabeteswillbestilltherewhenyoucomehome.• Makesureyouandyourspouse/partnerareequalpartnersindiabetescare.It’saheavy

loadthat’seasierwhenshared.

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• DON’Tlistentowhatotherpeoplesay.Noonewhoisn’tlivingwithdiabetesunderstandswhatlifewithdiabetesisreallylike.

• DON’Treadtoomuchaboutdiabetes.Mostofitisn’trelevanttopeoplewithtype1diabetesdiagnosedinthisdayandagewhoarewellmanagedfromthebeginning.

LanguageisPowerfulHowyoutalkaboutdiabetescanstronglyinfluencehowyouandyourfamilythinkandfeelaboutdiabetes.Trytoavoidsomeofthesecommonpitfalls:• Bloodsugarchecksare“checks”not“tests.”Youcan’tfailacheck.Iftheyfeellikethey

arefailingBGtestsandyouaredisappointedorjudgingthembytheirnumbers,thentheywillstopwantingtocheckorastheygrowolder,juststopcheckingalltogether.

• Thereareno“good”or“bad”bloodglucoseresults.It’salljustinformation.Theonly“bad”BGsaretheonesyoudon’tknowbecauseyoudidn’tcheck.

• Whenthey’rehighyou’re“adjusting,’notcorrecting.Youdidn’tmakeamistakethatyouneedto“correct.”Yourchild’sbodyisdoingitsthingandsometimesyoujustneedtoadjust.

• Remember:Youcannot“control”diabetes.Allyoucanhopeforistomanageitasbestyoucan.

• Whenyourchildiseatingfoodsyou’drathertheydidn’teat,theyarenot“sneaking”foods,or“cheating.”Theyarejust“eating.”Everychildwillhavecandyandsnacksyoudon’twantthemto.Teachthemthatthey’retherearenoforbiddenfoods,aslongasyouknowwhatthey’reeating,you/theycanbolusforit.Ifyouencourageopennessandhonesty,theywilltellyouwhenandwhattheyareeatingandthatwillmakeyourlifeawholeloteasier.

SeventhingstotellothersaboutT1D(takenfromamother’sblog)

1.Type1Diabetesisanautoimmunediseaseinwhichthebodyattacksanddestroysallofthecellsinthepancreasthatproduceinsulin.Nooneknowsforsurewhatexactlytriggersthisautoimmuneresponse,butitiscurrentlynotanythingthatcanbepreventedandisNOTcausedbypooreating,lackofexerciseorbadparenting.

2.INSULINISNOTACURE!!!ThereiscurrentlynoprovencureforType1Diabetes.UnlikeType2Diabetes(themorecommonlydiscussedtype),eatingbetterandexercisingwon’treverseit.

3.Peoplewithtype1Diabeteswillbedependentoninsulinfortheirentirelivesandmusttakeittosurvive.

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4.Monitoringbloodsugarlevelsisamust!Somepeoplechecktheirchildren’sbloodsugarlevels10ormoretimesaday.

5.Exercisecancausehighbloodsugarsorlowbloodsugars–andlowscanhappenupto12hoursafterexercise.

6.ChildrenwithType1DiabetesCANhavethingswithsugar!Infact,they,likeeveryoneelse,needsugarstoproduceenergy.Whilefoodswithrapidactingsugarslikejuice,candyandfrostingsaretobeusedsparingly,theycanstillbehad.

7.ParentsofchildrenwithdiabetesNEEDotherpeopleintheirlivestolearnhowtomonitorandcarefortheirchildrenincasethereisanemergencyorintherareeventtheyactuallyhaveadatenight.

HelpfulT1DResources:CarbDMwww.carbdm.orgCarbDM’sonlineforum:BraveBuddies,aonlineforumforparentsandcaregiversofchildrenwithT1D:bravebuddies.group.ioDiabetesYouthFamilies:Diabetescampsforkidsandfamilies:www.dyf.orgJDRFwww.jdrf.orgdiaTribehttp://www.diatribe.orgLocalBayAreaJDRFchapterwww.jdrfbayarea.orgRequesttheBagofHope:abackpackfilledwithgoodiesforkids(primarilyRufusthebearwithdiabetes)andinterestinginformationfortheparents.http://bayarea.jdrf.org/get-support/bag-of-hope/AmericanDiabetesAssociationwww.diabetes.orgChildrenwithDiabeteswww.childrenwithdiabetes.comABCDiabeticsprovidesdiabetessuppliestopeoplewithnohealthinsuranceortopeoplewhoneedextrasupplieswhoarewillingtomakeanominaldonation:www.abcdiabetics.org

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DiabetesandSportsHealthcampprovidesportscampsforchildrenwithdiabeteswww.dashcamp.orgJoshuaLevy’sblog:http://cureresearch4type1diabetes.blogspot.com/BeyondType1:www.beyondtype1.org.DiabetesDeviceCompanies:

• Medtronicwww.minimeddiabetes.com.MakeroftheMinimed670GHybridClosedLooppumpandCGM.

• Omnipod.http://www.insulet.com.Makeroftheonlypatchpump.Comingsoonisthe

OmniPodDash,anewPersonalDiabetesManager.

• TandemDiabetes:www.tandemdiabetes.commakeroftheT-slim,T-slimFlex,T-SlimX2touchscreeninsulinpump.

• Dexcom:www.dexcom.comContinuousGlucoseMonitorwithSharethatallowsfor

remotemonitoring.

• CompanionMedical:https://www.companionmedical.commakerofInPen,aBluetoothconnectedpenthatkeepstrackofinsulindosing,insulinonboard,aswellasthetemperatureofyourinsulin.

• BigfootBiomedical:makersofanall-in-onesolutionforAutomatedInsulinDelivery

system,connectedpens,supplymanagement,andmore.Indevelopment.www.bigfootbiomedical.com

• BetaBionics:makersoftheiLetBionicPancreas,abi-hormonalpumpthatdelivers

insulinwhenyou’rehighandglucagonwhenyouarelow.Indevelopmentwww.betabionics.org

• TypeZero:makersoftheinControlplatformwhichincludesadvisoryapplicationsfor

smartinsulinpensandsmartphone-basedartificialpancreassystemsthatautomaticallyregulateinsulindelivery,drasticallyreducehypoglycemia,andsignificantlyimprovebloodglucoselevels.Indevelopment.www.typezero.com

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DiabetesAppsandOnlineTools:

• Tidepool:www.tidepool.org.Thebestwaytoseeallyourdiabetesdatafromallyourdevicesinoneplace.

• Glooko:www.glooko.com.DownloadyourdatatoyouriOSorAndroiddevice,integrate

foodandlifestyledata,shareitwithyourmedicalprofessional.

• MySugr:https://mysugr.comThemostpopularappforkeepingtrackofallyourdiabetesdata.

• OneDropMeter,App,andDiabetesCoach:http://www.onedrop.today/

• Darioallinonemeter+appthatusesyoursmartphoneasthe“meter”:

https://mydario.com/

• Livongo:ameterthatconnectstothecloudandtoareallivecoach.www.livongo.comInsulinManufacturers:NovoNordisk:

• Novolog–fastactinginsulinwww.novolog.com• Levemir—longactinginsulinwww.levemir.com• FIASP—afasteractinginsulinthanNovolog.http://www.myfiasp.com/.Notyet

approvedforuseinpumps.Lilly:

• Humalog–fastactinginsulinwww.humalog.comSanofi:

• Apidra–fastactinginsulinwww.apidra.com• Lantus–longactinginsulinwww.lantus.com

Manycompaniesofferco-payassistanceprograms,checkoutourlistofthemonline.

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Usefuldiabetesproducts&supplies:Shots(theserequireprescriptions)

• ½unitsyringes—allowformoreaccuratedosingthanthe1unitsyringes.• Insulinpens—moreconvenientandportablethansyringesandinsulinvials.Thereare

reusableonesanddisposableonesforNovologandHumaloganddisposableonesforLantus.Unfortunately,they’reonlyavailablewithfullunitdosing(not½units).

• Saline–goodfor“ShotsofSupport”.Parentscanpracticegivingthemselvesshotsortakea“shotofsupport”whenevertheirchildtakesashot.Helpfulincomparingthepaininthearmcomparedtothepaininthestomach;comparingthepainofsixunitscomparedtotwo,etc.Haveyourchildgiveyouasalineshot!

Forchildrenhavingtroublewithshots&pumpchanges:• InjectEaseisadevicethatholdsthesyringeandsomewhatdullsthesensationofthe

needle.Doctorsdon’ttellyouaboutitbutparentsswearbyit.AvailableonAmazon.• PenNeedleswithCoveredTips:BDAutoshieldDuoPenNeedle:Theseneedlesare

coveredsotheyaren’tseenbeforegivingashotwiththem.They’reanothergoodtoolforkidswhoareafraidofneedles.

• BuzzyBee:www.buzzy4shots.comisavibratingdevicethatdistractsyoufromtheshot.• EMLA:numbingcreamthat’sgreatforpumpsiteinsertions.Needstobeputonone

hourbeforetheskiniscompletelynumb.Alsogoodforblooddraw.(Prescriptionrequired.)

• GladWrapStickandSeal:UsetocovertheEMLAcream.It’sbetterthanIV3000orotherstickierthingsbecauseitdoesn’tpullontheskinwhenremovingit.

Lancets&Meters

• Accu-CheckFastclixlancingdevice:agreatlancingdevicethathasacartridgewithsixlancetsinit.Whenit’sdone,youjustreplacethecartridge,soyou’reneverexposedtosharpneedles.Youcanusethislancingdeviceregardlessofwhatglucometeryou’reusing.

MedicalIDbracelets

• RoadID:www.roadid.com.OffersasimilarservicetoMedicAlert,butyoucanalsojustordertheirIDbraceletswithoutthemembership.TrytheWristIDSlim!Theseseemtobethemostpopular.Youcanaddbadgestoindicatethatit’samedicalalertbracelet,forT1D,andalsoforfunstuff.

• MedicAlert:www.medicalert.orgYourinformationiskeptonfileandtheIDbraceletincludesyourmembershipnumber.

• MediBand:www.mediband.comAreallysimple,reallycoolmedicalalertband.

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• Lauren’sHopewww.laurenshope.comforfancierdesigns.

Diabetesbagsandpacks• D-Packsforcarryingaroundthemeter,etc.:Thereareplentyofdiabetespacksonline.

o OutofSightcases:https://www.outofsightcases.como Myabetic:http://www.myabetic.como SugarMedical:http://sugarmedical.como Diabete-ezy:http://www.diabete-ezy.como Pumpwear:

https://www.pumpwearinc.com/pumpshop/index.php?l=product_list&c=151o Adorn:https://adorndesigns.com

• Youcanalsogetonethat’snotintendedasadiabetespack.Somesuggestionsthatcan

befoundonline:o AmeriBagEsopusMicrofiberBagwithdetachablestrap;o BaggelliniPocketCrossbodyo LeSportsSaco ManhattanPortageCityLightsisagoodbagforboys,too.o BrettMichaelhasbagsoutthatshouldappealtoboys.

• SPIbeltPackwww.spibelt.com.Forchildren9andyounger,orderthekidssize.9andup,

ordertheadultsize.Don’tbotherorderingthe“diabeticbelt”-itdoesn’treallyimproveupontheregularbeltanditdoesn’thaveasmanycolorstochoosefrom.

• TooSweetBoutiquewww.toosweetboutique.com.FullycustomizablepumpandCGMwaistpackshandmadetoorder.

• FlipBeltarestripsofneoprenethatwraparoundthewaistandhavemultiplepocketsCoolingDevices:(insulinmustbekeptbetween36-86degreesFahrenheitbutneverfrozen)

• Medicoolpacksfortraveling:www.medicool.com/diabetes/diabetes_travel.php• Friopouches:forkeepinginsulincoldwithoutrefrigeration.Reusablepouchescomeina

varietyofshapes,colorsandsizes www.frioinsulincoolingcase.comTemperatureTrackingDevice:

• MedAngel(medangel.co)connecttoyourphoneviaBlueToothandtracksthetemperatureinyourfridgeorinyourtravelpackandalertsyouifyourinsulinisoutofsafetemperaturerange.CanbepurchasedonAmazon.

Pump&CGMAccessories

• Groovypatches:www.groovypatches.com• Skins:www.skinit.com

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• GrifGrips:colorfulpatchesthatfitovertheDexcomtransmitter,OmniPod,andinfusionsites.CanbepurchasedonAmazonoratgrifgrips.com

Forhands-freenighttimeBGchecks

• Tryaheadlampsuchasthese:www.rei.com/search?query=headlampItmaylooksilly,butit’sreallyhelpful!

AdhesivesforcoveringpumpsitesandCGMs(availableonAmazon):

• Tegaderm-transparentfilmgreatforcoveringpumpsitesorCGMs.• Hypafix–clothmeshavailableinrollsgreatforcoveringpumpsitesorCGMs.Breathes

morethanTegaderm.CanbepurchasedonAmazon.• OpsiteFlexifixhelpstokeepsitesandsensorsoninthewater.JustputoverIV3000or

Tegaderm.Itcomesinrollsandisavailableonline.AdhesiveRemoval

• Unisolve:alcohol-swablikewipesthatdissolvethestickystufffrompumpsitesmakingthemeasiertoremove.

• SensiCare:sprayandwipesforadhesiveremovalthatdoesn’tsmellofalcoholanddoesn’tleavestickyresiduelikeUnisolvedoes.

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GettingUsedtothenew“normal”

• CreateCheatsheets:Carbcountsforfrequentlyeatenfoodssoyou’renotconstantlycheckingthebookorlookingituponline.

• Slidingscales:Carbratiosononesheetsoyoudon’thavetokeepprintingthemoutwhenevercarbratiosarechanged.

• Coolmeasuringcups:Useinterestingmeasuringcupsatthetablesoitdoesn’tfeelsomuchlikeascientificexperimentwhenservingfood.ThestoreAnthropologyhassomecutegeesemeasuringcups:“CanIhaveapapa/mama/babygooseofpasta?”Therearemeasuringcupsavailablethatmasqueradeasnestingdolls–greatforsendingtoschool.

• Round“garagesale”stickers:Usethemtolabelsnackandlunchcontainerswithcarbcounts.AvailableatLong’s,Walgreens,Target,OfficeDepot.

• ChainrestaurantsarerequiredtoprovidenutritionalinformationsoplaceslikeStarbucks,Chipotle,CaliforniaPizzaKitchen,etc.havecarbcountsavailableusuallyinabinderbytheregister.Theyalsooftenincludethemontheirwebsites.

• Findadiabeticbabysitter!We’vegotalistforyou.• Forsomelightheartedhumor:

o http://www.youtube.com/watch?v=LFIVVHQod5oo https://www.youtube.com/watch?v=Es2f5MsEWmg

Goodfoodstohaveonhand:Forlows:

• Sensiblesippers–juiceboxeswith7or8gofcarbavailableatWholeFoods.• Hansen’sJuniorjuiceboxes–4oz.juiceboxeswith15gofcarbsavailableatSafeway.• Marshmallows–about6geach.• TraderJoe’sAllNaturalFruitJellies–gummycandiesthatarefasttoeatandonly7

carbseachsogoodforlows.• GuChomps:gummiesthathaveelectrolytesandothergoodstufftobehavingwhile

exercisingandalsocarbssothatthey’regoodforlowswhileexercising.• ShotBloks:sameasGuChompsjustbyanotherbrandandsomeclaimtheyaretastier.• SportBeans(byJellyBelly,butwithoutfoodcoloringorartificialflavoring).Sameas

theGuChomps,butmorefun.• CliffGelShots–fruitflavorswithoutcaffeine(chocolate&coffeeflavorscontain

caffeine)with24gofcarbsavailableonlineandatWholeFoods.• LevelGlucoseGel–15gfastactinggelininterestingflavorsavailableonline.• Elovate15–singleservepowderglucosewith15gcarbs.Availableonline.Developed

byatype1mom.

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• ManypeoplealsouseSkittles,jellybeans,Smarties,Butterscotchcandies,Swedishfish,LifeSaversGummies,etc.Whenpossible,buythefunsizeforcarbportioncontrol.

• Glucolift–allnatural,nonchalkytastingglucosetabletsDevelopedbyapersonwithtype1diabetes.Glucolift.com

Freefoods(0carbs):• BeefJerky• Cheesesticks• Seaweed• Nuts• Veggiesticks• Sugar-freeJell-O• Leaf&LoveLemonade.

Lowcarbsnacks(upto15gofcarbs):

• NuGiiBars:glutenfreebarsproteinbars.Individuallywrapped12gramsofcarbs.AvailableonAmazon.com

• MiniKindbars-availablefromamazon.comandonly9-13gofcarbs.Greatforpre-sportspracticeorduringagame.

• CrystalLightPureFitness:allnaturaldrinkmixthatcontains6gofcarbsper16ozofjuice.CanbefoundatSafeway.

• Extendbarsandchips:arespeciallyformulatedtoreleasetheglucoseslowlytokeepbloodsugarsstableoveraperiodof9hours.Goodforbedtimesnacksespeciallyafteradaywithalotofactivity.AvailableatWalgreensandonline.

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Diabetesbooks(availableonamazon.com)

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