Need advice for me and my son


(Lisa) #1

My 12 year son has just been diagnosed with type 1 seven weeks ago which has come as a shock. He is now back at school but can’t go through the day without having hypos . Is this normal as I’ve heard it’s the honeymoon period. I am in such a state and can’t stop crying. Many thanks for any comments


(Dennis J. Dacey, PwD) #2

Hi Lisa @LisaBarrass,
I can understand your shock and know you are wondering “why my son”; there really really doesn’t need to be a family history of diabetes. I know my parents wondered at my diagnosis 60 years ago when there wasn’t anyone else in my extended family and none of my seven siblings with diabetes.

Now about your son’s daily hypo events. [Note that I am NOT a medical doctor but responding here sharing what I have learned by dealing with diabetes.] The “honeymoon period” effect combined with insulin dose management could be the cause at this point - too much insulin for his activity and foods eaten.

That may be an over-simple explanation. TypeOne diabetes management is a lifelong balancing act between activities, foods and insulin and the human brain, assisted by all the great tools we now have, will never master this formula - but we can come very close. During the time he is in honeymoon he should just be prepared to deal with a hypo event - how severy are his daily low body glucose readings? If they occur at the same time every day, his medical care team should be able to advise you about either modifying insulin or ordering that eat something different. If the events are random [such as they are not following running a race or skipping a snack] finding a solution may be more difficult.

You haven’t mentioned his insulin management of meal and activity schedule or time of his hypos so it is not possible for me to offer any more than the very general suggestions above.


(Colton) #3

@LisaBarrass

Hi Lissa! I was scrolling through and saw your post and it really stuck out to me because I can relate to your son. When I was 14 years old I to was diagnosed with T1D. As well as in your case, it came as a complete shock to me and completely blindsided me. I was just about to begin my 8th grade year of school and was starting up football. I went to go get a physical as it was required by my school and due to one last test right before I left the doctors office that they forgot to due it came back that I had T1D. At first I did not believe it, I thought that had to be wrong there is no way. However, I did have it. Luckily though, (which I did not realize until later how fortunate I was to have found out when I did) I to was in a honeymoon phase. I actually was in the honeymoon phase for about a year until I began taking insulin. That year was extremely hard though as I controlled my blood sugars with exercise and diet because I did NOT want to take shots. It wasn’t until I switched doctors to an amazing doctor that I began taking insulin. This changed everything. I could eat again! haha! My new doctor was actual on the cutting edge when it came to pump therapy and I resisted going on a pump because I thought shots are bad enough I can’t even imagine having to carry around a pump everyday. Well not too long ago I made the switch and it has been one of the best decisions of my life. I am now doing amazing and diabetes no longer is in control rather I have control over it. Now onto the main point (sorry that was so long but I thought I’d just give you some quick background info on my story).
Diabetes is a VERY VERY tricky thing to figure out when you are first diagnosed. I am currently 17 and I learn something new everyday on how to better manage my diabetes. What’s unique about diabetes is that it is unique to every person in the sense that everyone who is diabetic reacts differently to sugars, carbs, insulin, activity, sickness, stress, etc. All these things are factors that can affect one’s blood sugars. What’s also interesting is that I too struggled endlessly with hypos during my honeymoon phase. My blood sugars would just seem to bottom out, but if I ate something they would spike so it was very tricky. One of the best ways to help prevent these is to get a routine. That way you can help to identify when the lows occur or some sort of pattern even if it is very minute and make adjustments in order to help prevent the hypo. Hypos can be very scary and annoying because they seem to come out of nowhere sometimes. My advice would be to get a good solid routine to get some consistency going. Also, even more importantly the biggest piece of advice is to be there for your son which I know you are otherwise you wouldn’t have put out this post. When I was first diagnosed it was terrible because I had no one I could relate to because no one else around me lived with T1D. Also no one understands what it’s like to be diabetic unless they are diabetic. So the biggest thing is having somewhere behind you that you can talk to and that’s willing to listen it really helps. If you have any other questions about anything at all I’d be glad to answer because I understand what your son is going through to some extent because my experience was very similar when I was first diagnosed. Hope this helped :wink:

-Colton


(Lisa) #4

Hi thank you for getting back to me as what you said makes sense. I do think he’s going through the honeymoon period and there seems to be a dip two hours after eating and to his next meal. From Christmas we have started carb counting which is meant to help. What I find frustrating is that he seems to have to snack in between meals to keep his blood glucose up. He is even struggling to get home after school as he tests before to get on school bus and because he goes low he then has to correct it which makes him miss the bus and then either he gets a cab or if I’m not at work I’ll pick him up. I’ve heard once he gets out of the honeymoon it does the opposite and goes high? Thank you


(Lisa) #5

Hi thanks for getting back to me as this helps. I think he is going through the honeymoon as it don’t matter what we seem to do it wants to do the opposite. I do try and keep things routine and we are carb counting. It’s so annoying as he seems to go low two hours after a meal and before he’s eating he’s next dinner. I feel we are forever giving him snacks just to keep his levels higher. What happens when he comes out of the honeymoon I’ve heard it does the opposite. It’s awful as he’s just started his new senior school and this has happened. Are you more confident now a couple of years into this. Thanks again for your help


(Colton) #6

Hmmm…This is interesting. While I was in my honeymoon phase I did have many lows and struggle with it at times, but I also had many highs almost always after eating. To answer your question though when I “came out” of the honeymoon phase I started taking insulin so then that way I could eat without worrying about highs. So yes in a way your blood sugars do start to trend higher but you still do get lows from activity, exercise, etc. Also I would I am 100 times more confident now then I was when I was first diagnosed because in a way when you come out of the honeymoon phase your blood sugars become somewhat more predictable. For example, I know that activity can cause my blood sugars to drop and eating a large meal will cause it to go high. but now that I know this is true for more than like half of the time I can adjust my insulin intake to prevent the lows and highs and not have to worry about them. So I am very confident now. I am able to do everything I love and enjoy with no worries whatsoever and I am able to live and enjoy life. But, just out of curiosity does your son ever have high blood sugars (hyperglycemia) and has he done an A1C?


(Hollie) #7

I’m also in the honeymoon phase and have found my blood sugar also goes lower after eating! It seems to go against the general advice I’ve been given so I’ve found it all very confusing. I’ve been going off my own experimentation with how my bloods react to different types of food and aslong as I eat regular meals and no isolated sugar I don’t have much of an issue!


(Colton) #8

I don’t why but this is very fascinating to me haha. So like lets say you eat pasta or pizza do you still have lows or is it more like if you eat other sorts of carbs?


(Hollie) #9

It does sometimes vary but yes it would usually make it go lower (than it was before I ate), occasionally it’s caused it to go higher but only once or twice!


(Colton) #10

wow that is interesting haha I had this a few times during my honeymoon period but not consistently but that’s pretty interesting!


(Lisa) #11

The only time he was high was when he was first diagnosed and then he hasn’t been after that. In March he will be having the three month blood test. Its so nice to hear that you are more confident with it now and you are doing everything you would normally do.


(Colton) #12

Yes that’s probably one of the most important things is to not let diabetes control you but rather take control of it and just do things you love to do and normally would do and that really helps to build up some confidence about yourself :wink:


(linda) #13

Hi Lisa, I know exactly how you are feeling. A parent wants nothing more then to protect their child, Very difficult if its out of your hands and it cant be fixed. They tell you this is forever. I cried for weeks and still have bad days, but today I look at it easily now I understand what I need to do and it is now our new normal. My daughter will be 6 in a few weeks and she never seems to amaze me. I look at life in a whole new light. Now that I have a better understanding of this life. I commend anyone with T1D. Routine is key. Your son will be OK. You will see how amazing your son will do with this. My daughter cant have a pump as of yet but when that time comes it contently is an option. You are both strong hang in there. coming on here helps a lot! Good luck


(Lisa) #14

Thank you for your message. It was nice to hear from you regarding your daughter. I definately think your right with routine is the key. We’re carb counting now and he’s been so good as it must be so annoying at first not been able to eat when you want when you are so used to it before. I’m even letting him have his own choice of meals at the moment so he likes everything I am dishing up. Just bought the freestyle libre which they keep telling us that it will be free on our NHS but it’s not but if it means an easier life for him then I’m willing to pay for it. Hope you and your daughter keep well.


(Lori Garcia) #15

Hi Lisa,
Your message certainly hit home with me. My son was diagnosed at 11 years old, 5 years ago. Some days feels like yesterday and other times its hard to remember life before his diagnosis. I promise you one thing…it gets easier but will always pull at your heartstrings. I was fortunate to have someone I could talk to over the phone wjo understood. I am more than happy to give you my phone number for support. Im in Las Vegas. Holding you and your family in my heart.
Lori Garcia


(Lisa) #16

Thank you for replying it was nice to get your message and to tell me that things do get easier. I don’t know whether my son is in the “honeymoon period” as he never seems to get through the day without having a hypo at school or I’m filling him up with snacks and fruit to not have a hypo. Is your sons glucose more stable as he has had it for a longer time? My husband is forever altering his insulin and never two days are the same. Also just wondering your son must be 16 now is he having a fulfilled life with friends and enjoying things that a teenager should be? I worry for the future that my son will lose his confidence because of this. I hope you don’t mind me asking as I seem to be worrying about everything. Thanks again the phone call might be a bit expensive as I live just outside London UK lol!


(Erin) #17

Hi Lisa,
My son (14) was just diagnosed in October. I completely understand about crying all the time. I was a mess. We are all doing better now and adjusting. We are fortunate to have a good support system where we live and my son knows other T1 kids. The “honeymoon” period feels like a rollercoaster sometimes. We have had lots of calls into our Endocrinologist about adjusting his doses. He has gone from 10 units of Lantus down to 4 units because of his level of activity and lows at night. There are so many variables and they seem to be changing all the time. My advice is to keep talking to your medical team and make adjustments as needed. Our son got a CGM (Dexcom) and that has helped him manage (and anticipate) his highs and lows and adjust accordingly. You will all adjust and the emotions will not be on the surface so much soon. We just returned from a vacation in Mexico where my son surfed everyday. He needed very little insulin because he was so active but we had to be sure he had enough carbs in him all the time! There are many things to think about but it’s all do-able! Good luck. I remember the crying. I was like a crying-machine.
Erin


(Lisa) #18

Thanks Erin for replying this all helps with different stories as you realise you are not on your own. It seems so strange that there seems to be so many teenage boys who have this. Harry also has got two more boys who are in his year at school which is nice as least he has got someone to talk to. Good to hear that your holiday was a success as I have booked up this year to go to the Dominican Republic in the summer and panicking now as the insulin has got to stay cool for the flight as we are flying from London! Did the temperature abroad being hot make a difference and was the food ok with your son as it is guess work on holiday. Haven’t had a day without crying and so fed up with crying since “Black Friday” which was the day he was diagnosed in November. I cry just going to the supermarket knowing all the crap/sweet food he used to enjoy knowing he can’t have it anymore. I know I need to get a grip but it’s so hard. Is your son still in the honeymoon period? I heard that blood glucose goes high once you are out of this period. We too have purchased the freestyle libre which my son finds easier. We’ve had to buy it as they won’t give it to us on the NHS. Take care x


(Erin) #19

Hi Lisa, Glad you are going on holiday soon. We all needed a vacation. Buy the “frio” travel case for the insulin. We just got a small one for his insulin pens. It works by evaporative cooling. I kept the insulin in there most of the time and always kept my bag in the shade when we were on the beach. My son is still in the “honeymoon” phase as well. He didn’t need much insulin because he was so active but we had to treat some lows so we always had juice on hand. Gummy candies travel well too. I just discovered some non-caffeinated sport gels (like GU or Hammer) that he likes. They are small and easy to digest (and easier to travel with). Eating was fine. Sometimes my son chooses lower carb meals if he is out with friends and does not want to take insulin. Our doctor doesn’t want this to be a trend because he still needs a lot of carbs (as a teenager) but sometimes he is quite happy eating a chicken caesar salad! The carb counting gets easier. We had our “cheat sheets” with us and rely more on those than any kind of app for our phones. Good luck. The crying will ease up, I promise. I’ve talked to a few young adults who were diagnosed as teens and they all said: “I think it was harder for my mom than for me.” Feel free to reach out anytime.


(Lisa) #20

ErinG Erin
January 18
Hi Lisa, Glad you are going on holiday soon. We all needed a vacation. Buy the “frio” travel case for the insulin. We just got a small one for his insulin pens. It works by evaporative cooling. I kept the insulin in there most of the time and always kept my bag in the shade when we were on the beach. My son is still in the “honeymoon” phase as well. He didn’t need much insulin because he was so active but we had to treat some lows so we always had juice on hand. Gummy candies travel well too. I just discovered some non-caffeinated sport gels (like GU or Hammer) that he likes. They are small and easy to digest (and easier to travel with). Eating was fine. Sometimes my son chooses lower carb meals if he is out with friends and does not want to take insulin. Our doctor doesn’t want this to be a trend because he still needs a lot of carbs (as a teenager) but sometimes he is quite happy eating a chicken caesar salad! The carb counting gets easier. We had our “cheat sheets” with us and rely more on those than any kind of app for our phones. Good luck. The crying will ease up, I promise. I’ve talked to a few young adults who were diagnosed as teens and they all said: “I think it was harder for my mom than for me.” Feel free to reach out anytime.

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In Reply To

LisaBarrass Lisa
January 18
Thanks Erin for replying this all helps with different stories as you realise you are not on your own. It seems so strange that there seems to be so many teenage boys who have this. Harry also has got two more boys who are in his year at school which is nice as least he has got someone to talk to.…
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