Thank goodness I have found you!

[JSC]

Good Morning
I hope you will not mind me joining your forum in relation to my son. He was diagnosed as a type 1 just a couple of months ago. He is 19 and a mature young person but he is far less anxious about his diagnosis than I am. I have many questions/concerns, as even though he is an adult, I can't stop my maternal instincts, to want to protect and fix him, from running riot!! The diabetic team we have been assigned to will not deal with me at all becasue my son is 19 years of age. They have in fact been rather rude to both he and I, suggesting that I am being overbearing and that he is not taking responsibility, telling him to own his condition and seemingly finding my thirst for knowledge a bit annoying! I appreciate they are busy but receiving this diagnosis is quite a daunting prospect to face for both the person, and their family, and I do not feel that him having well intended support from us has warrented the comments that have been made. Having been left feeling alienated by our NHS diabetes team and feeling unable to approach them I turned to Google for the answers I seek and found the forum - yay!
Thank you all for sharing your stories and experiences they are proving to be both helpful and reassuring and I hope in time that I can post about my son's experiences in the hope of helping some other anxious Mums.

 

[Inka]

Welcome @JSC 🙂 A thirst for knowledge is a good thing in my book! Does your son still live at home? How’s he managing with it all? It’s a major lifestyle change, quite apart from the practicalities.

What insulins does he take?

 

[nonethewiser]

Welcome.

Had same treatment when taking my oldest to hospital appointment round about same age, wasn't diabetes clinic but was told to leave room & wait outside.

 

[Inka]

A great book, often recommended here is:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas

It’s good to refer to over time and it can be reassuring to have. There’s a lot to learn so my advice is that your son (and you) pace yourself. Some things only time and experience can teach, but the above book and all the resources Diabetes U.K. has are a great thing to have access to. Do ask anything you want here 🙂

 

[JSC]

Welcome @JSC 🙂 A thirst for knowledge is a good thing in my book! Does your son still live at home? How’s he managing with it all? It’s a major lifestyle change, quite apart from the practicalities.

What insulins does he take?

Hi Inka
Thank you for your reply and kind support. He went away to Uni just before he was diagnosed and decided the course wasnt for him so he came home again and is looking to find another course for September this year that is nearer to home so he can stay with us whilst he studies. I now know why he seemed so tired all the time when I would speak to him on Facetime!! Poor lad was obviously just not showing full on symptoms but is body was running on empty. He is quite well controlled at the moment on Lantus and Novorapid but he really is just at home all day going for a walk and that's pretty much it so it will be all change when he is moving about all day doing whatever he will be doing! I think I have already realised it is not something that ever gets pinned down for long!! Good job I like rollercoaster eh? 😉

 

[JSC]

A great book, often recommended here is:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas

It’s good to refer to over time and it can be reassuring to have. There’s a lot to learn so my advice is that your son (and you) pace yourself. Some things only time and experience can teach, but the above book and all the resources Diabetes U.K. has are a great thing to have access to. Do ask anything you want here 🙂

Thank you Inka for this there is so much information out there and so having a recommendation is much appreciated.

 

[JSC]

Welcome.

Had same treatment when taking my oldest to hospital appointment round about same age, wasn't diabetes clinic but was told to leave room & wait outside.

It is so frustrating isn't it. He is mature but he just doesn't have the experience to know what to ask and there is a lot of information for one young man to take on board so just having another listening pair of ears I feel is essential. He is also quite shy and very polite and will just not want to put anybody out, which I love him for, but I also know that on the NHS you have to often 'SHOUT' so to speak to be heard.
Thank you for sharing your similar experience.

 

[Inka]

Hi Inka
Thank you for your reply and kind support. He went away to Uni just before he was diagnosed and decided the course wasnt for him so he came home again and is looking to find another course for September this year that is nearer to home so he can stay with us whilst he studies. I now know why he seemed so tired all the time when I would speak to him on Facetime!! Poor lad was obviously just not showing full on symptoms but is body was running on empty. He is quite well controlled at the moment on Lantus and Novorapid but he really is just at home all day going for a walk and that's pretty much it so it will be all change when he is moving about all day doing whatever he will be doing! I think I have already realised it is not something that ever gets pinned down for long!! Good job I like rollercoaster eh? 😉

In a way, it’s good that he’s at home not doing much because it gives him a chance to get to grips with the basics and learn how his body responds. That will stand him in good stead in future.

Does he carb count? If not, I strongly recommend he begins to do so. That will give him more flexibility when he does rejoin student life.

 

[Inka]

Oh, and a tip - although his team can’t talk to you because your son is an adult, if your son writes a letter giving you permission to speak to them, you can ‘represent’ him, although there might, quite rightly, be a limit on what you’re permitted to know. It does, however, give you a chance to alert them to any issues or concerns.

 

[trophywench]

I was 22 at that time, married 15 months and living in our new home 20+ miles away from both sets of parents since then and would have cheerfully smothered either parent if they'd tried to get much involved with MY diabetes and MY treatment of it. Yes right now because he is living with you, you do need to learn a bit more so you do have my empathy for that desire for knowledge but what you could do, maybe, is try and get the chap to enrol himself onto the DUK Learning Zone and have a plod through that at his own pace, which will not be the same pace at which you might tackle it; which you can certainly also separately do yourself. And, you can absolutely encourage him to engage with the DUK website anyway - even offer to pay for his annual subscription to Diabetes UK, which is a great resource for really reliable info for anyone 'involved' in diabetes in the UK.

 

[JSC]

In a way, it’s good that he’s at home not doing much because it gives him a chance to get to grips with the basics and learn how his body responds. That will stand him in good stead in future.

Does he carb count? If not, I strongly recommend he begins to do so. That will give him more flexibility when he does rejoin student life.

Thank you Inka, I agree it is good that he has time at home as you say and also to get some weight back on after losing quite a lot and getting to feel better again. With the carb counting, the DSN's keep telling us that we are trying to move too quickly, we are very ready to carb count but they seem to be reluctant to help us get there. They keep saying if we get the glucose down too quickly it can be as damaging as it being too high? I have always been interested in diet and nutrition and have a reasonably good understanding of the carb counting basics. We do have a little tweak on the doses here and there if we are having less carbs like a BBQ or something. My son is taking part in an online lesson or two about carb counting in July so I hope this will help us to work out his carb ratio and allow us to get on with the counting as I think it will allow my son more flexibility and make meal times more normal.

 

[Bruce Stephens]

They keep saying if we get the glucose down too quickly it can be as damaging as it being too high?

As I understand it there are risks with doing that, even beyond the obvious risks of severe hypos.

My son is taking part in an online lesson or two about carb counting in July

There are a few which anyone can try out (https://www.bertieonline.org.uk/ https://www.mytype1diabetes.nhs.uk/ ). I think it's usual to give out education in measured doses otherwise it's all too much. Also because until you've lived with it for a few months it's perhaps less obvious what you need to know so you get less out of it.

 

[rebrascora]

Hi and welcome. I can greatly empathize with your situation and I guess the clinic staff have a difficult line to follow because young adults do need to take responsibility for their own diabetes and there will be some who are happy to offload it onto a parent and others will want their independence. If your son is happy for you to be involved, then he should be able to inform them either verbally or in writing that he is happy for you to be included in his appointments. I was diagnosed much later in life but found it all very overwhelming and get stressed about going to appointments which means I don't take it all in. I am fortunate that I have a wonderfully supportive sister who was happy to attend appointments at the doctor's and hospital with me until I was sufficiently confident to manage on my own. I really valued having that support and I didn't have to put anything in writing and the consultant was happy for my sister to ask questions as well as myself. She didn't speak for me by any means but was just another set of ears and a brain to listen and ask questions and someone I could bounce thoughts off after we left or in the following weeks. However I find this forum invaluable in helping me understand from a practical point of view and I would certainly suggest you encourage your son to join himself as he will find a level of support and understanding that he simply can't get anywhere else. He doesn't have to make it known that his Mam is also a member, you can join completely separately and gain knowledge and ask questions that occur to you as individuals. It may be that your son wants to manage it without your help and that is fine and you can be equally proud of his independence but having the support of others really makes a huge difference with diabetes as it can be quite isolating, so even if the only help you provide him with is encouraging him to become part of the forum or even just read it without actively participating that would be a big thing.

As regards your own knowledge I can't see any harm in learning more but you will need to be restrained in offering input when he doesn't ask for it. It will be a fine line for you to tread, but can totally understand your instinct to want to help. Being a mother is tough, especially as they start to become independent. Sending (((HUGS))) and wishing you both lots of luck in negotiating this tricky situation.

 

[Dave_Z1a]

Welcome.

Had same treatment when taking my oldest to hospital appointment round about same age, wasn't diabetes clinic but was told to leave room & wait outside.

They tried this at my gp surgery when my daughter was only 13, I had a stand up row with them and after complaining to the practice manager it never happened again, child till 18 and my responsibility as far as I am concerned, I always gave her the option of having me sit in when she was 14 though.

 

[Inka]

Thank you Inka, I agree it is good that he has time at home as you say and also to get some weight back on after losing quite a lot and getting to feel better again. With the carb counting, the DSN's keep telling us that we are trying to move too quickly, we are very ready to carb count but they seem to be reluctant to help us get there. They keep saying if we get the glucose down too quickly it can be as damaging as it being too high? I have always been interested in diet and nutrition and have a reasonably good understanding of the carb counting basics. We do have a little tweak on the doses here and there if we are having less carbs like a BBQ or something. My son is taking part in an online lesson or two about carb counting in July so I hope this will help us to work out his carb ratio and allow us to get on with the counting as I think it will allow my son more flexibility and make meal times more normal.

Yes, that’s true about bringing his blood sugar down to quickly. His target range should start higher, then gradually be decreased. As @Bruce Stephens alluded to, reducing hypos is also really important. It’s ok to run a little higher initially for both those reasons.

I was taught to carb count at diagnosis and many areas teach it at diagnosis too. It’s not hard and I think it’s far better to teach the basics early on. However, again, maybe they’re worried about hypos.

Carb ratios can vary for each meal (ie breakfast, lunch, evening meal). They can also change and need tweaking. That’s the nature - and annoyance - of Type 1: things change and need adjusting a lot.

 

[nonethewiser]

It is so frustrating isn't it. He is mature but he just doesn't have the experience to know what to ask and there is a lot of information for one young man to take on board so just having another listening pair of ears I feel is essential. He is also quite shy and very polite and will just not want to put anybody out, which I love him for, but I also know that on the NHS you have to often 'SHOUT' so to speak to be heard.
Thank you for sharing your similar experience.

My thoughts entirely, thank you.

 

[everydayupsanddowns]

Welcome to the forum @JSC

Sorry to hear about your son’s diagnosis

There‘s a lot to take on with a T1 diagnosis, and it always seems to me that it is the whole family/household that is affected, not just the one person.

The links, Ragnar Hanas book, and BERTIE course are all well regarded on the forum, and should help a lot filling in some ofthe blanks.

Diabetes is fiercely individual and fickle too - and has a reputation to move the goalposts and change the rules just when you have things pottering along. So expect a few frustrations and hiccups along the way!