Type 1 Diabetes

[Keikochan]

Hi everyone, how are things going? Hope all is well!
I'm going through a little something at the moment. I just got my toe amputated a few days ago from a diabetic ulcer that was annoyingly almost healed but there was an infection in the bone which decided to make things impossible. On the bright side since I have no feeling in my feet, I don't feel any pain! Am terrified of this wound getting infected & making things even worse though.
Anyone else go through something like this?
Thank you!!!

 

[Keikochan]

I am T1D, I was diagnosed when I was 7yrs old so it has been awhile. It is a very difficult diagnosis, it takes a while to process and "get used to". She will figure it out, you don't really get a choice in that.

Insulin pump & CGM make things a lot "easier" but it is still extremely difficult. It is classed as a disability for a reason, bc it is one. Has she talked about how she finds her T1D nurses, they are very important. I really hope that she has nice ones that listen and will help her.

Please remember that this is not caused by anything she did or did not do. Likewise it is not caused by anything you did or did not do for her.
Blood sugars can have a mind of their own, even with tight control.

A few random things to note that might be useful:

• Blood sugar tends to go down a bit in warm weather.
• Likewise hot showers, sauna, hot tubs can lead to hypos. That does not mean she can't do those things, it just means to be aware of possibility.
• Stress can also make bloods go up & down randomly.
• Periods can cause havoc with blood sugar too.
• If she is hungry, let her eat, that is what insulin is for. She can eat whatever she wants or doesn't want.
• Sugar free fizzy drinks & energy drinks are awesome.
• Accommodations can be made in school, I remember the Reception Office in school would hold onto a lunch box filled with some med supplies for me in case of emergency. Things like spare insulin, spare bloods kit, glucose tablets etc. I would leave it with them at start of school year & if needed I would just go to them and sort myself out. When I had to inject at lunch time, I was able to go into an office room to do so, instead of injecting in front of others or in bathroom etc. Also for major exams (Leaving cert. in Ireland) I did the exam in room by myself with a supervisor instead of the big room with all the other students. This was good in case I went too low or too high (which did happen)etc. There are a few other illnesses or situations that this accommodation is made for so schools are well aware and usually are very accommodating.

 

[didisaythatoutloudoops]

Hi @Jaybtee - mother of a diabetic here! She was diagnosed at 10 and she's now a fully independent adult, off living her life. I know how much you are worrying as a mother. All I can say is that things don't need to be perfect, and diabetes is all about balancing the fun with the sensible.

First and foremost remember that diabetes is such a burden for a child to have - not just the actual insulin taking and finger pricking itself, but the weight of it on their little shoulders. Don't bog them down with strict rules, nagging about hba1cs, etc - because you'll only add to that stress. And eventually, that will result in diabetic burnout (do as much research into this as you can - it was enlightening for me). They're children, above all, and deserve to have fun too.

By this I mean try to find balance and not worry about the numbers greatly - because how you treat their diabetes now is how they're going to react for the rest of their lives to it. If you are anxious and worry about every single blood sugar that is out of range, they will spend the rest of their lives doing that. If you take it on the chin, accept it's going to cause some bad days but live life as much as you can - so will they.

So go to the soft play barn, just bring some sweets for lows and test every hour. Have a slice of birthday cake, just bolus for it. And realise you'll figure things out - it is all new now, and I know how overwhelming it is, but I promise it gets easier.

 

[OatMatchaLatte]

Christmas came early for me yesterday, went to pick up my prescription. I always feel much better when my stocks are full. I recently got a refillable pen for my bolus insulin and am loving being able to do half units. I'm really obsessive with my management, so this is a big deal for me. I have put a sticker on the pen to decorate it and make it look pretty, too

Hope you like the g7, @Jaybtee. I switched to Dexcom and much prefer it to Libre, which I found inaccurate and unreliable.

 

[Jaybtee]

Trying the dexcom g7 just now, enjoying the alarms as libre ones never work for me

 

[Kjbsjb]

Are there any type1s on here? My daughter was diagnosed 7 months ago (3 week stint in ICU with DKA) she is 12. Struggling to get her to actually actively try with keeping herself in range. I feel like im on her back constantly but now that she is out and about more herself i can't control everything. It is such a worry - she doesnt seem to care about potential complications of high blood sugars. I hope this is just her age. Its such a huge diagnosis and its literally 24/7 forever!

Hi, my son was diagnosed age 6 in 2020, it’s such a Huge Huge adjustment for the whole family..especially the type 1 themselves. We are 3.5 years in now and it has got a lot easier, almost become second nature (still hate that) with all the tech that is out there, it makes a huge difference to our life, I don’t know if your daughter has a dexcom/libre? These make it so much less invasive for them, reduces the need for finger pricks by atleast 70% if not more in my house, getting the dexcom was a real game changer, i honestly didn’t think we’d ever sleep a night again in our lives as I was finger pricking / checking on him every 2 hours, but since having the dexcom it’s changed our lives. Not sure if you’ll have looked into pumps yet, but He does also have a pump, which links up to his dexcom and again has given him so much more freedom. I am on a support group on Facebook called parents of children with type 1 in the uk,it is fantastic, everyone is so helpful and we all support each other. Also you find great hacks / tips when it comes to navigating through this tough period , especially the teen years. Hope you and your daughter are ok

 

[Keikochan]

The diabetes team keep telling me she will feel awful with high blood sugars, my daughter says she doesn't even realise she is like 24/25 sometimes. in fact she feels worse when she is in range (sometimes vomits if she has been in range for a day or so) - she is autistic though so it is hard for her to explain or express her feelings. We're new to it all so we're just taking every day as it comes :-\

Oh ok, I think I understand now. I imagine that makes things a bit more complicated on top of everything.

I'm not sure how best to say this, so please stick with me, sometimes the Diabetic teams have studied diabetes and so on paper they know what they're doing but at same time, they have not experienced it first hand (as in they don't have it themselves), or have any empathy at all, so really they don't fully understand things, as in the actual feeling of things (how a high or a low feel, how it feels to be super hungry and told you can't eat now - even though you could eat and take insulin, be around people eating super yummy sugary foods and be told you cannot have that - again even though you could eat it and take extra insulin bc that is what insulin is for and luckily we are in Countries that don't charge for insulin, not be hungry & be forced to eat & threatened into eating from "the bed things that will happen if you don't"). I think a lot of them condense the information into simplest possible form and tell the patient that and also try to use fear of bad things happening to motivate the patient into compliance. From my 26 yrs being T1D, I know I can be walking around with high blood sugars (even at HI) and feel totally fine (I'm not saying it's a good thing I'm saying you can feel fine). I can even have some ketones and feel totally fine, however there is a limit that when passed you feel like acidic death. But with solely the bloods sugars you can feel fine, sometimes yes you can feel bad, it varies. It's complicated because it varies.
Long term high blood sugars can lead to further complications down the line (it can happen at any point in the line, not just when you're "older"), however it must be noted that even if you have good control on the blood sugars, you can still get these complications.
I really hope I put this all in a way that makes sense and isn't all over the place.

 

[OatMatchaLatte]

Hi everyone, how are things going? Hope all is well!
I'm going through a little something at the moment. I just got my toe amputated a few days ago from a diabetic ulcer that was annoyingly almost healed but there was an infection in the bone which decided to make things impossible. On the bright side since I have no feeling in my feet, I don't feel any pain! Am terrified of this wound getting infected & making things even worse though.
Anyone else go through something like this?
Thank you!!!

Oh no! I'm sorry to hear that. How is your recovery going, does the toe loss impact your movement, and will you have any physio?
I had my consultant appointment last Thursday. I was absolutely dreading it. I think it's due to health anxiety (what else will they say is "wrong" with me) and the scrutiny over my numbers. I tend to run lower because I'm scared of being high (I think due to traumatic DKA at diagnosis). Anyway, it went fine. My consultant is SO kind, and SO nice. I really like him. I've spoken to several since DX, but he is by far the best. Not a know-it-all, he listens. The nurse doing the obs ahead of the appointment was also lovely. I always feel wound up, and she was doing her best to relax me, bless her. So now I can relax, it's done for another six months .

 

[Keikochan]

12 year olds HBA1C is 71 after clinic appointment on Wednesday. She was diagnosed in march (hba1c was104)
feeling quite disappointed in the latest number, it was 66 in October and I was sure we'd have got it down a little bit!

I know it can be super disappointing bc you feel like you have been putting so much work in, but tbh that isn't the worst number ever & next time it could be way better and surprise you. Things like the weather & illnesses (there are loads of bugs and viruses going round, you may not even know you are fighting off a virus cos they so sneaky) can totally effect the bloods so it could just be the time of year swaying things too.

Last Monday I went out to do few bits, go Post Office, collect some meds, get few groceries, get lunch with Husband...etc. So I felt OK enough & we went Post Office first, and then we went for lunch and as we were going I started to feel super nauseous and weak. I hadn't eaten yet that day so I thought maybe some food would help. Tried to eat, couldn't, bloods were HI, took insulin, still felt awful. Got takeaway box, just went home bc felt like I'd just pass out.
Got home, bloods went down a bit, 29.7, checked ketones....5.7, was not expecting that!!! So I changed pump, took insulin, drank plenty water...etc thankfully by evening time all was lower & safe.
Looking back I was feeling bit lower (health wise) than usual the few days beforehand so I feel like I was prob fighting off a virus or something, Idk.

 

[Jaybtee]

12 year olds HBA1C is 71 after clinic appointment on Wednesday. She was diagnosed in march (hba1c was104)
feeling quite disappointed in the latest number, it was 66 in October and I was sure we'd have got it down a little bit!

 

[OatMatchaLatte]

It's all so individual, I take anything the team tells me - on the rare occasion I have contact with them - with a pinch of salt. I was told not to worry about the impact various stages of my cycle have on my levels, for example. It affects them for about 10-14 days across every month and I didn't feel comfortable with that, so I managed to figure something out on my own and levels are now much more to my liking, both actually and psychologically.

I know they're supposed to be the experts because they read about it in a book, but we're the experts when it comes to our own bodies. I appreciate mine is a different situation and circumstance to that of you and your daughter, of course.

 

[Keikochan]

Hi all, I just wanted to check in and see how everyone is doing? Especially around the holiday time, things can be a bit messy with T1D, how is everyone holding up? X

 

[Woolmercardington]

Yes, I have T1. I was 30 when diagnosed. There are some great forums out there. Diabetes.co.uk is a really good forum and I think there is one especially for parents of T1 children.

 

[Jaybtee]

I know it can be super disappointing bc you feel like you have been putting so much work in, but tbh that isn't the worst number ever & next time it could be way better and surprise you. Things like the weather & illnesses (there are loads of bugs and viruses going round, you may not even know you are fighting off a virus cos they so sneaky) can totally effect the bloods so it could just be the time of year swaying things too.

Last Monday I went out to do few bits, go Post Office, collect some meds, get few groceries, get lunch with Husband...etc. So I felt OK enough & we went Post Office first, and then we went for lunch and as we were going I started to feel super nauseous and weak. I hadn't eaten yet that day so I thought maybe some food would help. Tried to eat, couldn't, bloods were HI, took insulin, still felt awful. Got takeaway box, just went home bc felt like I'd just pass out.
Got home, bloods went down a bit, 29.7, checked ketones....5.7, was not expecting that!!! So I changed pump, took insulin, drank plenty water...etc thankfully by evening time all was lower & safe.
Looking back I was feeling bit lower (health wise) than usual the few days beforehand so I feel like I was prob fighting off a virus or something, Idk.

oh my goodness 5.7!! I take it it was an issue with the pump? Thats so scary, glad your feeling better now - did you just manage at home?
sometimes my daughter reaches up to 29 (she sneaks food when she's out with friends she's at that age where she is rebelling against everything i say!) and she says she feels fine! Don't know if she is just pretending or not as I know some people start to feel a bit rough even going over 10.

I know the pump can be a game changer for people, we are on a waiting list of a year and a half after diagnosis here in Edinburgh for kids over the age of 6, but i honestly think its frightening how quickly you can go into DKA on a pump rather than having the background insulin shot when your MDI.

 

[OatMatchaLatte]

Sorry to hear about your daughter. It must have been a very worrying and scary time for you both, and I'm sure it continues to be a challenge. I'm type 1, too, and was diagnosed 2.5 years ago (was in hospital for 10 days after DKA). Obviously being diagnosed as an adult is very different to being diagnosed as a child, but for all of us it's a marathon not a sprint. Does she have a glucose monitor, and is she on pens or a pump?

With the best will in the world it's difficult to stay in range all of the time. It's impossible, in fact. But there could be other factors affecting her levels - maybe she doesn't want to inject in public, or wait her 15 mins after injecting to eat, perhaps her insulin to carb ratio needs adjusting for different meals / foods (mine is different for breakfast, lunch and dinner). See if she's open to a chat about it.

She might be a bit young for instagram, but there is a huge (and young!) T1 community on there, it may help her to feel less alone.

OH! And editing to add, there are a few youngsters in the public eye with type 1, too. Strictly pro Nikita, Joe Jonas, ex-X Factor singer Amelia Lily. Perhaps you can point them out to her.

 

[Keikochan]

Oh no! I'm sorry to hear that. How is your recovery going, does the toe loss impact your movement, and will you have any physio?
I had my consultant appointment last Thursday. I was absolutely dreading it. I think it's due to health anxiety (what else will they say is "wrong" with me) and the scrutiny over my numbers. I tend to run lower because I'm scared of being high (I think due to traumatic DKA at diagnosis). Anyway, it went fine. My consultant is SO kind, and SO nice. I really like him. I've spoken to several since DX, but he is by far the best. Not a know-it-all, he listens. The nurse doing the obs ahead of the appointment was also lovely. I always feel wound up, and she was doing her best to relax me, bless her. So now I can relax, it's done for another six months .

Thank you! The recover will be very long, I'm told a year bc of all the healing. I'm really just so socked by it all. Walking is difficult bc of balance. I have to walk with all the pressure on my heal. I have MS too and use a walking stitch from that so the walking stick does help a bit with keeping me steady. I did see physio while in the hospital but I'm not sure if I'll be seeing them again. I have to wear a weird boot thing that stops the foot from bending so as to not put pressure on the wound.

OMG I understand that feeling of dread!!! That's great it went well! 6 months free yay!

 

[Keikochan]

oh my goodness 5.7!! I take it it was an issue with the pump? Thats so scary, glad your feeling better now - did you just manage at home?
sometimes my daughter reaches up to 29 (she sneaks food when she's out with friends she's at that age where she is rebelling against everything i say!) and she says she feels fine! Don't know if she is just pretending or not as I know some people start to feel a bit rough even going over 10.

I know the pump can be a game changer for people, we are on a waiting list of a year and a half after diagnosis here in Edinburgh for kids over the age of 6, but i honestly think its frightening how quickly you can go into DKA on a pump rather than having the background insulin shot when your MDI.

No the pump was fine, like no blocks or air bubbles, needle was inserted fine...etc. It is just standard procedure to change it "just in case". Yes I fixed it at home.
That is terrible that the wait list is so long for a pump!
You can go into DKA quickly no matter what method (injections or pump) you are on. The pump gives way more freedom to this restrictive condition.
Yes, you can absolutely feel fine with high blood sugars. Why do you keep thinking she is pretending/lying?

 

[Jaybtee]

Are there any type1s on here? My daughter was diagnosed 7 months ago (3 week stint in ICU with DKA) she is 12. Struggling to get her to actually actively try with keeping herself in range. I feel like im on her back constantly but now that she is out and about more herself i can't control everything. It is such a worry - she doesnt seem to care about potential complications of high blood sugars. I hope this is just her age. Its such a huge diagnosis and its literally 24/7 forever!

 

[Jaybtee]

No the pump was fine, like no blocks or air bubbles, needle was inserted fine...etc. It is just standard procedure to change it "just in case". Yes I fixed it at home.
That is terrible that the wait list is so long for a pump!
You can go into DKA quickly no matter what method (injections or pump) you are on. The pump gives way more freedom to this restrictive condition.
Yes, you can absolutely feel fine with high blood sugars. Why do you keep thinking she is pretending/lying?

The diabetes team keep telling me she will feel awful with high blood sugars, my daughter says she doesn't even realise she is like 24/25 sometimes. in fact she feels worse when she is in range (sometimes vomits if she has been in range for a day or so) - she is autistic though so it is hard for her to explain or express her feelings. We're new to it all so we're just taking every day as it comes :-\