pulling my hair out

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Mandy

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My daughter was diagnosed 2 years ago and since becoming DKA and having a stay in hospital she has struggled getting control of her levels again and seems to bounce from one crisis to another. Doesn't help that she is going through puberty and come out of the honeymoon period as well. Always seem to be pulling my hair out with one thing or another so thought it worth joining to see if
anyone else was struggling or is it just me?
 
Hi Mandy, welcome to the forum 🙂 I'm not a parent but many of our members are and I'm sure that they can relate to you! As well as all the obvious problems of hormones and and the end of the honeymoon period, I wonder if part of the problem is a reaction to the horrible DKA - is she scared of going low or high and overcompensating either way? Trying to keep levels lower can mean more hypos and then overtreating hypos leading to highs and so on - a real rollercoaster :( What insulin regime is she on? Do you carb count to adjust insulin to food?

I'd suggest a few things: Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas covers most situations in a very comprehensive and practical way, so well worth getting a copy if you don't already have one. Also, there are some links in our 'Useful Links' thread that could help, especially the website Children with Diabetes.

Please feel free to ask any questions you may have and we'll do our best to help! 🙂
 
Hi Mandy. Welcome 🙂

I can only echo Northerner's sentiments. It's difficult to get into a 'groove' for any of us, but at that age everything is obviously in turmoil.

The Ragnar Hanas book is brilliant. Anyone can learn a lot from it.🙂

Rob
 
Welcome Mandy. How old is your daughter? What are her interests / passions? As well as Children with Diabetes email list, mentipned above (hosted on another website) we have a Parents section on these boards.
 
Hi Mandy a warm welcome to the forum from me x
 
Hello Mandy and welcome to the forums. Sorry to hear that you feel you are lurching from one problem to another.

Have you got a DSN that you can contact - if not ask your Dr for a referral. A DSN should be able to go through your daughters routine and see if he/she can pinpoint an underlying cause of the problems.
 
Welcome to the forum. Hope things settle for your daugheter soon.

M
 
Hi Mandy welcome to the forum. I hope that life settles down for you and your daughter soon.
 
Hi Mandy, I remember how hard it was for me when I was diagnosed at 16, apparently hormones have a huge effect at that age especially during puberty. How old is your daughter? Might it help her to meet other young people with diabetes? There are groups for teenagers and young people through diabetes UK
 
Thanks for the reply. Diabetes book you mention was first thing I got when she was diagnosed and has been invaluable. I don't think she is scared of going high or low but being DKA has had an affect on her and she has a CAMHS appointment next week so hopefully that will help. Thanks for your advice. Mandy
 
Welcome to the forum Mandy, hope your daughter's levels start coming down into range soon x
 
Thanks for all your replies. She is 12 and does have a DSN but unfortunately she's not available at the moment due to illness and everytime we call the hospital takes a day or 2 to get a response by which time things may have changed. We are now doing a diary of everything she eats sugar levels and insulin amounts. How tedious but hopefully we will get some answers.
 
Hi Mandy
It's the same with us. We have found our DSN quite difficult to get hold of, by which time the issue we wanted to discuss has passed and we have had to make a decision about how to handle it. She is very helpful and knowledgeable when we do talk with her, but for day to day management we have had to find other sources of help. Mostly it's the Ragnar Hanas book which covers lots of issues very well. Like you, we end up taking detailed notes and have found it does help get things back on track. My son is just 14, diagnosed 3 months ago. He goes through periods of having spikes we can't explain; I think it might be hormones? Then it all settles down for a bit before another stretch of less steady numbers. Hope you find the record keeping makes a difference. Best wishes, Catherine
 
Make sure you - or preferably she! - also note the dates of your daughters periods; it's hard enough getting a handle on BG and the monthlies when you are adult and hopefully regular - but at that age, a ruddy nightmare I should think!
 
hi Mandy
I have a 15 yr old daughter who was diagnosed at 12 , puberty and growing have been a real nightmare , we have ended up on a pump , which has been brilliant for helping whereas MDI just couldn't cope!She would have regular spikes where she was high for a week at a time - growth hormone sometimes she would be having an extra 10-16 units at extra at night- these periods have gradually decreased in frequency as she finally stops growing ! I echo what every has said , keep a record there is a pattern somewhere. Also agree with Toophy wnech re periods, not really got a total handle on the BS at this time yet. May be think about a pump, although it will depend on area and consulatant as to how quickly you get one
 
Mandy said:
My daughter was diagnosed 2 years ago and since becoming DKA and having a stay in hospital she has struggled getting control of her levels again and seems to bounce from one crisis to another. Doesn't help that she is going through puberty and come out of the honeymoon period as well. Always seem to be pulling my hair out with one thing or another so thought it worth joining to see if
anyone else was struggling or is it just me?
Click to expand...

Welcome Mandy,
I don't have children and although I was diagnosed at 18, I didn't have the puberty to deal with but I did have the 'fitting in' issues, partying and acting like a regular 18-25yr old. In this timeframe I was loving being thin from the weight loss my diagnosis brought and frequently put myself into DKA on purpose to lose weight. Not the healthiest and I did this at LEAST once a year! Usually around the summer when people wear less anyway!

My point is two things really, firstly, to watch out for this behaviour as it has been noted as a new form of eating disorder in young diabetic girls and secondly, I used to feel my worst prior to hospitalisation (for obvious reasons) and the hospital used to discharge me once I was stable and I used to maintain this and I felt a whole lot bettter and easier to control my levels so the instability you are talking about could sound more to do with the puberty and other issues, although I don't have all the info and I am not a qualified person!!!!

Feel free to PM me if you have any questions about DKA or the diabetic eating disorder thing. It is a scary and unhealthy way to lose weight!!!! I am now 30 and would never attempt to do this ever again, especially as now I have diabetic complications 12 years on!!!!!
 
Hi Mandy , welcome to the forum i was diagonised 30 years ago when i was 10 , when i hit puberty everything went t**s up ! i was in hospital every month 1 year from january to may , but i just wanted to reassure it does get better honest 🙂
 
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