Need advice for me and my son

(Jennifer) #21

Hi Lisa.

My son was diagnosed at 9 and had a long honeymoon period. Let me tell you the lows are always scary! I was consistently trying to figure out the lows. One thing that helped us was to get his blood sugars up then once at 90 or so we would give him a serving of protein like beef jerky or string cheese and peanut butter was a great option. I’ve also used the protein shakes from Costco. That helps maintain those good numbers. I hope that helps. It will get better.

(Lisa) #22

Thank you for your message it’s nice to hear from other people as this makes you feel very on your own. One thing everyone says it does get better which makes me feel a bit brighter. I will have a look at them protein shakes as that sounds like a good idea. Thanks again and hope you and your son are well.

(Chris) #23

Hi Lisa,
Certainly empathize with you - stay confident! Only advice I can suggest is to work to give over to your son management of his health. He can do it. Your strength is in being a sounding board, a coach directing him to rely on medical specialists to learn about his own metabolism and to manage. Like life in general, gradual progress not perfection. Believe in him and let him know that. All best wishes. I’m 52 years w/ T1D. My mom said, “we’ll get through this”; never showed to my face any doubt in those words. I’m certain there were many private tears but forever grateful for confidence she gave over to me. Regards, Chris

(Lisa) #24

Thank you Chris for your kind words. Your right in what you say it is a big thing to get your head around for all of us but we’ve got a lifetime of just being there for him and I’m sure as time goes on he will learn about his body and what to do for the better. I just hope his confidence doesn’t get knocked and he carries on with a teenagers life as he should be. Ps your mum sounds lovely

(Brian) #25

I have not read other responses but perhaps I can offer some guidance. Check with your MD on his insulin Dosing schedule.

Honeymoon- once the glucose toxicity resolved the beta cells “wake up” to a degree and start producing insulin again, however it is sluggish. This means the pancreas has a hard time mounting a strong insulin response at the start of a meal, but catches up later on. This leads to post meal highs. The problem come in with correction doses. The pancreas’s is trying to give insulin to correct a high at the same time you notice it high and give a correction dose, effectively stacking injected insulin on top of the body’s insulin. This leads to post correction lows. In the honeymoon period it may be wise to be strong in the carb ratio and weak on the correction ratio. Ask your MD. Some patients will not need any insulin for years- it varies patient to patient.

(Lisa) #26

Thank you for your advice. My husband is now correcting his insulin dose and he has been better over the weekend. We have now purchased the freestyle libre which helps as he is checking himself all the time and trying to stop himself going to low with a snack or a piece of fruit. Thank you

(Brooke) #27

hello Lisa,
You and my mom sound very similar! I was diagnosed at age 15 with T1D, which shocked me, as well as my parents. My mom has always been a worry wart, but trust me she has gotten better with it! It is very normal for him to be experiencing lows, since he is a newly type 1 diabetic. Throughout the next couple of months, he will get a better idea how his body reacts to food and the insulin. Also, once you go back to the doctors for your checkups, the doctor might be able to change the insulin needs of your son! Trust me, it takes awhile to get that happy medium with your body. I am a nursing student so I get nerdy with some of the anatomy behind diabetes. Our body is like a balance beam, on one end is insulin and the other is food. If we eat too much carbs, we will be hyperglycemia. If we take too much insulin and not enough carbs, we will go into hypoglycemic. It takes a while to find that balance (homeostasis). Trust me, it does get better! I know my mom and I would sometimes get into small arguments at first, because truthfully we didn’t understand it all, still don’t. As sad as it is, I will have some high/low blood sugars with absolutely no reasoning behind it, just my body being weird. I hope this helps!

(Chris) #28

Hi Lisa,
Thank you for your kind words; I didn’t realize how valuable my mom’s courage was - until much later on. Re: living as a teenager, I recall discussing coping skills / practical realities with other Type 1’s at the clinic at which I received treatment; that was a confidence builder for me three years into the experience at age 17. I think nothing replaces face-to-face talk involving the TD1 himself.
For example, a summer diabetes camp for kids, age 8 to 18 may be a good place at which to get skills, then go from there to get into life as a teen.
Regards, Chris

(Lisa) #29

Hi Brooke
Thanks for your message. Since using the freestyle libre it’s helped a lot. We do have good days and bad ones. Once out of the honeymoon period will it go really high and even harder to control. I guess at his age his hormones will cause a few issues. I’m glad you said it does get a bit easier over time just getting to know his body. I just hope he stays positive. Also your mum sounds lovely.

(Joei) #30

Hi Lisa
I just read your post. My 11 year old son was just diagnosed in November 2017. I relate to everything you are saying. It took a while to stop crying and also to say my son was diagnosed with T1 Diabetes without crying. Still happens sometimes. I hope you are adjusting a little better. People ask if you are “getting better” I don’t think it is about getting better it is more about adjusting to a different life and coping. My son has the Dexcom Continuous Glucose Monitor and it makes a world of difference. I would be happy to talk to you more if you are interested. I am also happy just to lend a ear.

(Gwendolyn) #31

This story is definitely I can relate to my “honeymoon period” following diagnosis.

(Lisa) #32

Hiya joe
Thanks for getting into contact. Things have got a little better but it’s been a struggle. I still can’t seem to speak to other parents about it without me whelling up. I think you feel like your on your own with it. Everything at the moment is the firsts, like Christmas and now we have just had Easter. I hate even going into the supermarket shopping as I see the food and treats I bought before and that makes me sad. My son is doing well and has taken it on board. He even said the other day there are worse Illnesses than this. I am a worrier and have now started worrying about the teenage years. My husband keeps telling me to just think about today but you can’t help what you are. We live in England so he is on the freestyle libre which is brilliant and he is interested to be on the pump. I am hoping with all the newer technology coming out it will be a little easier for everyone. Good luck and keep smiling.

(K) #33

Their is no honeymoon, only a constant battle to balance, food, insulin and activity. You might ask your endo or dr. to test for insulin antibodies or other test to see if your son is still producing some insulin, it is possible for T1 to have some limited insulin production. Blood testing will be your best way to control lows and highs, see if you can get a CGM for your son, Dexcom or Libre are my favorites, these give a reading every few minutes and eliminate finger sticks at school and when a kid doesnt want to feel different.

(Garrett) #34

Hey All! Find a JDRF YLC committee near you! It is the Young Leadership Committee and they are in most major US cities. I have been a part of the YLC in San Francisco, Silicon Valley and Washington, D.C. Let me know if I can connect you to one. They are awesome and hold various happy hours and fundraising events. All are welcome of all ages. Type one and friends of type ones. :slight_smile: