ok so here goes. my daughter has he seen the same endo since she was dx in 2017. she is 4 years old and has never went into dka. we caught it early. well that being said we come from a very small town closest endo is hour away. and dont get me wrong he has been great but i fell he is more old school which sometimes there is nothing wrong with. but in my case my little on cant tell when she is high and when she is low. and she tends to show signs of lows in the 70’s. when i told him he said children dont show signs till they are in the 50’s which in my case is not true i have whitnessed it. so i try to bring her back up when she is in mid to low 70’s. he instructed me not to. second issue i would like a cgm for my daughter she is starting school this year and it would very much add a piece of mind. she is very shy and asking for help is issue for her. plus as i stated she cannot tell like verbally. she will show signs but she is four. so most you get is im tired or i dont fell good or you will find her asleep or just not acting right. he told me they are not good ideas for children and he does not order them. the third issue is he does not have her on meal time insulin and when she was first dx the basal was doing the trick but now her after meal numbers can reach any where from 200 to as high as 320. so i called them and went in feeling something was needed. he said increase the basal to 5 and lets see. well her morning numbers are around 110 but her after meals numbers are still all over the place. he still doesnt fell that its needed. this concerns me. he also doesnt want me to check her more than twice a day. one fasting and once after the last meal of the day. i am not in any way comfortable with this. and i dont follow it and ive told him this because if i did i would have missed some very alarming numbers. for the record yes i clean her fingers very good each time. and yes i also wait till the 2 hour mark to test her. we have been doing some low carb i mean within reason for a small child and i have seen some improvement with her numbers plus we have a pool and she spends alot of time outside. but at the same time i still feel these higher numbers are not ok. i am still very new to all of this only a year in. so am i overreacting or is this normal care plan?
I’m sorry you’re struggling with doctor support. Your instincts as noted above are rock solid. Parents know their children so much better than the doctor.
I think a CGM is an excellent idea for a young child, especially if they have difficulty recognizing highs and lows. The CGM will help you to identify the number and then re-inforce and educate your child in a timely way.
I would tell the doctor that your research has shown you that a CGM will enhance the safety of your child. You can then respond to things like overnight lows in a timely fashion. If he continues to say no, then I think you’ll need to look for a different doc. I just can’t imagine a doctor refusing your CGM request. I think it might have more to say about him than it does about the quality of the idea.
Please keep us posted.
Edited to add this from the American Diabetes Association Standards of Care 2018:
Continuous glucose monitoring should be considered in children and adolescents with type 1 diabetes, whether using injections or continuous subcutaneous insulin infusion, as an additional tool to help improve glycemic control. Benefits of continuous glucose monitoring correlate with adherence to ongoing use of the device. B
I agree with this quote a thousand percent, my son was diagnosed 12 years ago, and at some point, my husband and I decided we would make small dosing changes of course with the appropriate monitoring. I genuinely believe we have to be independent but to do that we have to educate ourselves as much as possible. I’m not telling you to ditch your doctor, he is part of the team, but your family is the key player.
thank you i absoulty loved the idea of a cgm. i researched and have brought it up at our last 2 appts. he shot it down both times. he said he does not and wont. very stubborn. he seems to be very against them which i dont understand why. i feel like you do having one would allow for more control and ability to respond to things faster also maybe help my child understand this is why you feel this way.
yes i fully believe in this quote. we are with them 24/7 not just 30 minutes every 3 months. when she was first diagnosed he started her on 2 units daily well not a month later she got the flu and i could not keep her numbers out of 200 despite the fact she wasnt eating i called him and said well if the numbers are higher you have to up the insulin one unit at a time until they are stable again. and when she better you may have take it back down. then we took her in to see him for check up he instructed me to adjust the insulin based on sugar levels that i didnt have to call him i could just adjust. that was a learning curve i developed my own system. if her numbers were constantly high for 3 days i would adjust her basal. as she doesnt have meal time. which is a whole other issue in its self. i just think me and the doctor have differing opinions not saying he is bad doctor or anything. i just feel like for smaller kids different things should be considered.
I hate that he told you not to give mealtime insulin or to test at least pre and post meal. Most endocrinologists recommend testing at least 6-8 times per day for a non-CGM wearer. I know your little one is likely in the honeymoon stage or just transitioning out of it, but you’ll want to get comfortable changing her dosage with your child’s needs. I highly recommend trying to see another provider and finding a specialist you feel comfortable with. And just an encouragement, I know it seems overwhelming and hard, but you are strong and you can do this!
I don’t think you’re overreacting at all. We fired my daughter’s first endo 6 weeks after dx. There were many reasons, but near the top of the list was her belief our daughter “might” be ready for a pump when she started high school. She was 11 & in 5th grade at dx. We had no intention of waiting that long.
The endo should be a part of the team, but the family & especially the child need to lead. The endo should be supporting you in every way possible.
Not overreacting. Just being a good parent and thinking critically about the advice you are given. Never hurts to see someone else…perhaps someone who is comfortable with the tech you are using. We all fire Doc’s sometimes. You have to.
this is how i felt. i feel she needs meal time insulin. and i completely ignored his testing orders we just purchase ourown strips and she gets tested pre and post meal and her fasting in morning. and once during night. she is still in her honey moon period. im pretty ok with changing her basal insulin now. but one month in i was terrified to do anything. no to mention we received zero training just gave us rx for pen and out the door we went. thank you for your kind words im feeling very overwhelmed right now. i think im going to call the childrens hospital thats about hours and half away and make her apt with specialist there.
well at first i just went with what he was saying we had ZERO knowledge about diabetes at all. she is our first and only diabetic. i mean my great grandmother was but at 10 who really pays attention to great grandmas meds. lol. and i knew nothing. so i dove into research and found this forum well i found it before she was dx. but still after seeing and reading and seing other children on here getting cgms and pump and testing more and research turned up same things. i became concerned. then i had one of my good friends who is a nurse come by with her kids for a play date and i check my little one she was 270. i sent her on her way because as i said we have no meal time insulin. she asked was i going to correct i told her no we dont have meal time insulin. her jaw dropped and thats when she told me to that thats not ok. so i got more concerned. being why i made the post i wanted to see if it was just me which i see its not.
thank you!!! i worried so much that i was just over reaccting. but after making this post and doing research upon research. i see thats not the case. im making her an appt with nemours childrens hospital they are the next closest specialist to us and she has been there before for her stomach pain and kidneys so they already have her records.
My son got caught early and needed no insulin at all so his endo didn’t want him to be on a cgm at that point but as soon as he needed it she prescribed a cgm. He was wearing one pretty much the same day he started taking insulin. You need to have an endo who you feel comfortable with.
That is ridiculous how he is handling that. That sounds beyond old school to me. What is his reasoning for only testing twice a day? And I can’t believe he isn’t giving any fast acting insulin. There is a point were basal is not going to cover it, and if she is running high after meals, the basal is not going to help. All that is going to happen with higher basal is that she is going to have a huge spike after eating, and it will slowly come down. And then she will probably be going low most of the time after that as there is no food to make up for all the extra long acting insulin.
@Christina_Hughes, for your daughter’s sake, tell your Dr.
see she has been on insulin since the first visit and by visit number 3 i was asking for one a year later and he still says no. i have made her an appt at a childrens hospitalclose by along with cgm there are other issues we simply dont see eye to eye on
he states she doesnt require testing more than twice a day. once when she first gets up and once after last meal of the day. i DO NOT in any way agree with that and i will not go with that so we purchase our own tests strips out of pocket and i test her when she gets up after each meal lately ive been doing before meals to i wanted ot see how different food effected her and bed time and once during night. if i didnt do that i would have missed some pretty scary numbers. such as the 192 at 2am last night orthe 311 she had. no fast acting insulin i have asked and i have called and reported numbers her target number for meals was under 180. well clearly we are over that alot. and nope nothing. says just change what she eats and make sure she drinks water. and ok i know that you have to alter the diet but seriously she is 4. i do all i can. but like the other day we were at birthday party now she doesnt like cake but all the other kids were eating pizza. ok she had her low carb meal in front of her and started to cry bc she wanted eat what they ate at birthday party so i gave her very very small piece of pizza super small. shot her up to 298. then i felt bad. but she just didnt wanna be different for a minute. that was my point to him when he wanted go up on basal is that well she goes low when she is out side playing and swimming. it doesnt happen alot but the other day as i stated she was 69 she felt and looked awful. he told me no way she had signs of low children dont slow low signed until they are in 50’s. this is not true she feels low in the 70’s. ive seen it. he just will not give meal time insulin stating she doesnt need it just yet. and he wont budge on cgm. so i have made her appt with childrens hospital close by well about an hour and half away for second opinion.
lol we have appt next month with a new doctor fingers crossed for better results
There is an excellent book called using insulin that explains how to correctly figure out carb counting and correct dosing, etc. I agree your old endo is way too old school. I was diagnosed when I was 8 and only had regular and nph available and I remember testing twice a day and having a 13.1 a1c, and the endo telling my father to try to get to lower, but offering little advice on how. The Cgm is the best idea, and she could even use a watch without a smartphone with the Dexcom and tic watch e as a collector on xdrip app or spike app if you prefer Apple.
we were offered zero anything basically of she has diabetes give lantus 2 units daily unless her numbers up then base the insulin off her numbers. which they did we are up to 5 units daily.that was the extent of out “training” other than when he told me to watch what she ate just dont feed her things that send her high. well that seems to be everything here lately. even if we do low carb. which i will say we get lower numbers then but still above where they should be. the pharmacy is the one that told me how to inject and how do use the pen. i like the idea of her having a watch. i already have apple watch thats not in use. (was old one got new one for christmas) maybe she could use that? she four so that would be really easy for her she loves wearing watches to so she wouldnt fight it. no meal time insulin. only basal. thats all we have so we dont have a insulin to carb ratio. thank you for telling meabout the watch. when we go next month im going to be sure to discuss that to. im already planning on speaking with them about CGM for her. from what i have read they really help not only with being able to mange her better but also being able ot get better control and see where her spikes are and such.
The only possible thing I can figure is your endo, Dr. OldSchool, is afraid about your child hitting too many lows during the honeymoon phase of her diabetes. Also there are parents of small newly-dx’d young children that understandably over-react to highs or lows and then the children suffer the rebound lows and highs. I would absolutely insist on a CGM that can be remotely monitored by you on a phone plus can be uploaded by Dr. OldSchool’s Office. You and the Dr can review her graphs and decide what changes need to be made.
You could also see if there’s a more modern Certified Diabetes Educator that can get you a CGM and train you and your daughter.
How does your daughter handle injections and insertions with a needle? Sorry to say some kids literally throw a tantrum when it’s CGM sensor change day, so there’s that to consider. Best of Luck!