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Teenage daughter complications

DeeGem said:
We have been offered it on prescription,
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Oh, that's brilliant, DeeGem!

It really does make a difference.

The really frustrating thing about T1 is the surprises it throws - we think we've got the ratios etc sorted out and we still end up too high or low. I suspect your daughter is kicking back against that, resenting it.

Cgm/libre gives a huge sense of control back and that's all that anyone wants in life - we can see things on the cgm trace starting to happen, bg starting to go too high/low, and then, instead of just waiting for it to happen, we can step in and nudge it up with a few dextrotabs to stop a low, or a unit or two to pin a high. The difference that makes psychologically, to being able to live comfortably with T1 is huge.

It does take a bit of work to figure out how the devices work, and how to read the graphs properly, but it pays back in spades.

It will be a new thing for her, and a lot will depend on her attitude to it.

That book I mentioned, the author is both a T1 and an endo, one of the first to use this sort of stuff, and he has a few chapters in the book about how to gently win children and teens round to the idea of using it, so it's well worth a read for that.

He encourages parents to explain to the child/teen the advantages of it: being able to get a heads up on hypos so they can stop them from happening, to be able to start steering things. And to involve them with it so they want to figure out themselves the dozens of useful things the device can do.

Getting libre and then cgm was a huge turnaround for me, hope it pans out that way for you and the kid too.
 
Thanks Scott-C . Taking control of diabetes instead of it controlling us sounds just perfect. Like it used to be.
I will be seriously looking into this.
Really good to get advice from people that have experienced all kinds of bumps in the road x
 
DeeGem said:
Up 2 or 3 times a night some nights is just no use. Cant go on. I really appreciate your advice. Thank you . Hope your child is doing great . Just need to bring Rachel round in her way of thinking about the pump now. x
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Yes i know. I only do a late test at 11pm now on my way to bed and the sensor will suspend the pump if necessary overnight so I can sleep all night!
 
DeeGem said:
No, your so right. I've had enough. Sleepless nights and the worry is unbearable. Thank you so much. Shes my daughter and like you say her body and she lives with it. Fingers crossed I get somewhere now with a little force and standing my ground x
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Hi, write down what you both would like to say, just bullet points will do, go over it and be assertive. You know your daughter, if there is a problem then it needs to be investigated and not just 'brushed aside'. Sometimes we just need to stand up to them, keep asking questions and if they still don't have the answer's then they should refer you.

This isn't diabetes related, but my now adult daughter has always had problems with her bones since secondary school and pain. She was 'brushed aside' Gp just gave her painkiller's to take, never referred her to a specialist. then about 3/4 years ago, she moved to another town, but close to me and the new surgery was fantastic. New GP listened to her, then sent her for a number of tests and then a specialist, she was diagnosed with Ehlers–Danlos syndromes, so finally she got a diagnosis.
Good luck
 
Thank you. Yes . Your so right. You put your trust in these professionals but sometimes your gut feeling is the way forward isnt it. So happy yous finally got answers and I hope your daughter is better now .
 
I just answered a question similar to this, so I will share my answer here. It may help.
Puberty is tough. For women, your estrogen (hormone) level is out of balance, so it's not surprising that your insulin (hormone) level is affected as well.
My experience during my menstruation was pretty bad. Mind you, my sugars have always been brittle, but the week before I started my period, my sugars were insane. I'd eat less to try to lower them; I'd increase by basal and my fast-acting insulin to get it down; I even took garcina gamboa to get below 300. Nothing worked.
And then, on the day I'd start my period, I had the complete opposite situation. My sugar would drop below 60 and I couldn't get it back to where it was supposed to be.
This all takes a big emotional toll - even besides the fact that it's estrogen we're talking about. I would get first homicidal (joking, but I was pretty aggressive) and then suicidal (not kidding).
What helped me with both my PMS and my lows on the first day was Evening Primrose Oil - and when that wasn't enough, Black Currant Oil. I found my blood sugars were still brittle, but it was the brittle I know from day to day. It kept the homicidal/suicidal thoughts at bay. I'm typically skeptical about homeopathic remedies (I've heard A LOT of them in my 50 years as a T1), but these two truly helped.
If you try this route, be sure to avoid products with soy. It's been shown that soy contributes to breast cancer, especially when women's hormones fluctuate.
I hope this helps.
 
Hi @DeeGem,
Sorry to hear both of you are suffering!
Being male i cannot relate to cycles except to point out that sometimes if the cycle is regular one might be able to anticipate them and have a plan worked out. And as others have said the dose has to be reduced quickly once a change happens to stop the hypos. The trick is how to change the basal or long-acting insulin so that night hypos are avoided at least until an insulin pump can be arranged. What long acting insulin is your daughter prescribed and how often is it given?
To add insult to injury why has her health team not considered her growth pattern.?
I vividly recall ages 14 thru 20 when i was experiencing growth spurts , my insulin requirements would ramp up to where i would be on double my total daily dose or more for several weeks and then the hypos would start and i learned to reduce insulin doses quick smart and wait some more weeks for the whole thing to start again.
Stopping hypos seems most urgent.
Could you perhaps contact her doctor and see if he/she will agree to a split dose of long-acting insulin?
I am assuming it is Levemir we are talking about.
There are issues with Lantus - see diabettech.com - Lantus: Lethal or Saviour?
Best Wishes.
 
Thank you so much for your message.
Evening primrose is something I will definitely try . She is very much the same as you describe. Really high before menstrual cycle then drops. Thank you
 
Thank you. That sounds exactly what we are battling. 2 to 4 weeks on one dose then pulled right back for a while then straight back up again.
I've kinda mastered the doses during this time too. School days she is on more insulin than weekends . Its absolutely mad.
I spoke to the diabetic team and was quite firm this time. They understood once I told them research I had did previously.
Looks like its something normal and have to battle for a few years yet then.
Yes levimer
48 units morning and 6 just before bed . Novorapid at meal times .
I really appreciate your message , puts me a ease to know I'm not missing something or miss treating her. X
 
DeeGem said:
Its caused so much tension between the both of us. They have no answers so accusations are getting thrown about . These people do not live with this we do. Clinic in 2 weeks time so I will be saying we are unhappy. I've been far to forgiven I guess .
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I think your support is critical for her - and for you.
Most T1s I know go through a rebellious period called diabetic grief. It's similar to denial, though many in this period continue to acknowledge the condition and take their meds. But eating? For me, I was not having a diet. It took me far too long to come out of the grief, but I did finally adjust with the help of going to diabetic camp here in the US.
Going through this grief, it's really important to have people on your side who don't regurgitate what doctors say. My parents tried to be on my side, but they didn't understand my disease or why I wouldn't control my glucose intake. Repeating what the doctor said didn't help me; I needed to understand my condition from an experienced T1 or T1 supporter.
Have you mentioned this site to your daughter? That might be an avenue for her where she can open up about what's going on.
 
I second @RAPS_od 's suggestion about peer support and evening primrose oil.
For another angle on bsl control, as a suggestion you may wish to look up True Grit type 1 - an American website. Controversial to some but based on the work of Dr Bernstein and his book Diabetes
Solution.
A diabetic on insulin now for some 75 years, Dr B advocates a low carb, high protein diet which has the potential to keep bsls in good control with fewer and less severe hypos.
The website has adult and child diabetics who post on it. A blog site called drdavidludwig.com describes an article about adults and children on very low carb diets having very good HBA1Cs and very low hypo rate, from a survey if diabetics who follow Dr B's principles ( the survey included examinatiin if the parient's medical records so there was firm data to bsck up claims.
The contraversial part is that a) many doctors and Dietitians do not believe in low carb high protein diets and in adolescents they pontificate about whether such diets affect growth b) the lower insulin requirements are also queried regarding growth as insulin is a type of growth hormone which makes sense if you think about thevdose going up in growth spurts, too. c) there is still a widespread belief that increasing protein and also fat intake when on a low carb diet increases risk of heart and blood vessel disease, cholesteol up etc..
To countervsome of these concerns A) and B) parametrs of the diabetic children surveyed about show no problem and on a slightly different tack, Inuit and Laplanders have survived very well for centuries on a zero carb diet. It was when Western foods came along ( carb laden) that diabetes and heart and blood vessel and obesity problem devloped
C) if you subscribe to zoeharcombe.com, you will be treated to a tour de force of rebuttals of the lipid hypothesis, the idea that saturated fat and chilesterol causes heart disease. Zoe is a nutritionist from Wales, whise PhD was about saturated fat and heart disease. She shiws up the flawed statistics and reserach behaviour if early and mire recent studies on saturated fat, cholesterol, stsins and the attemots to discredit low carb ir liw carb high fat diets LXHF) as they are often called.
There was an article in the Lancet journal last year saying low carb diets are associated with higher risk if heart disease and Zoe debunks this, shiwing how stars have been manipulated to give the finding which the authors desired.Many doctors are nit au fait enough to understand the stats ir bither to look at rebuttals but quiting her work, getting nurses and doctors to read her work her work are great ways to get them to see the ither point if view ( of course minds are like parachutes, they only work if open.
So in that misnomer called spare time (lol) you might wish to see what the True Grit people do and hear Dr B's talks. He is a bit garrulous at times but lots of pearls of wisdom.
The downside of the site is that they are selective in who they let post on site. I have not been able to earn that right as i have only been on a very low carb diet for 5 months. But by contributing to comments on site you may be able to get some responses to help answer some queries.
Also let your daughter know that some of us TIDs on disbetes.co.uk have had diabetes and been on insulin for 30, 40 and 50 years or more ( me 52 years) and went through teenage years without cgm, pens, fancy insulins or blood glucose meters.
And have had minor complications only. I blame my cataracts on growing up and living in sunny Australia !¡¡
 
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