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Problems with 9 yr old daughters T1

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sarah Millard

New Member
Relationship to Diabetes
Parent of person with diabetes
My daughter was diagnosed as type 1 Feb '16. In January we started running high and did for 36 days straight. I had her admitted to stabilise beginning of last month and started carb counting and have been running low. With in a week of discharge she started having unconscious episodes one of which was over night and resulted in quite a significant seizure, since then we have been in and out of hospital with hypoglycaemic episodes where she goes unconscious and ive had to call an ambulance , we've no idea why. She is incredibly active which has quite an effect on her blood sugars. She has had lots of tests which have all come back normal. Her doses have been cut right down and we have been running a little higher. Her doctor pilulled me to one side on Friday and actually accused her of self administration of extra insulin because they can't find a cause she is 9 and is hardly ever alone and rarely at home . I can honestly say hand on heart she hasn't. We go to clinic today get home and she has dropped from 16 to 3.3 and we have no explanation as to why. There must be someone out there that has had a similar problem before. I'm desperate for answers. The only one I've had is that's she is doing it to her self . Please help x
 
Hi Sarah. I am so sorry to hear you and your daughter are going through this, it must be hell for you both as well as such a worry.
We have some very knowledgeable people on here who may be able to throw some light on what may be happening, a bit more info may help. What insulins is your daughter on .
 
She is on Novarapid fast acting and lantus long acting. A friend has said that she saw a post on another fb page that there is a child that has a problem where their Pancras let's out random bursts of insulin, this would certainly explain my daughters rapid decrease in blood sugars at random which is how they seem to be. Has anyone else heard of this or suffer from the same thing?
 
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Novorapid lasts up to 4.5 hours and Lantus peaks at roughly 4 - 5 hours after you jab it, tails off a for bit over the following couple of hours and then settles down at a lower level of activity for however long after that it remains active - total activity period varies between roughly 18 hours (from jabbing it) to 36 hours - nobody can say exactly. Does the 5 hours chime in with the hypos?

Ask your clinic to fit her with a CGM to keep attached to her 24/7 for a week or so at home - many of them have loan machines. What a body does as a hospital in patient bears little resemblance to what the same body does whilst going about its normal day to day life. This is a way of checking on her BG constantly - and with some of them - the user has no access to what the monitor is recording, until it is downloaded at the clinic a week or so later. At the same time you should keep a diary showing the meter test results, the carb content of the meals and ALL the jabs of both types of insulin. Then the results can be plotted together alongside each other to try and fathom out exactly what's happening. I've been having a lot of trouble recently with unexpected hypos and had to reduce my basal insulin quite a lot - and I am by no means the only person this has been happening to on this forum alone. I'm booked in with my clinic to borrow such a monitor for a week to try and get mine sorted out properly. Mt clinic's monitor was originally purchased with a legacy from a deceased patient left to them for this specific purpose and the hospital (in other words the CCG at the end of the day) fund the software and the sensors used for each individual patient - they were, years and years ago - £60 EACH - so it's not a cheap thing to fund yourself - if it was I'd suggest you got your own. There is a cheaper one now which a lot of folk use called the Libre, where it costs between £100 and £150 for the starter kit, and then about £50 for each extra sensor after you've used the first two - each one of those lasts a fortnight. What can't speak, can't lie - just like her meter.

Just another random thought here - Who holds her insulin pen whilst she is at school? Any off-chance she - or anyone else - could be misusing it whilst there - or totally miscalculating the carbs and/or the boluses?

Oh - another thought - they haven't put her on a 'standard' bolus of 1u to 10g carb - which is PURELY the first thing they suggest we try - but each person's ratio will be different, and can also be quite different at different times of day - or even for different meals (more fat/less fat, slower-acting carb/faster acting carb - whatever!)
 
She has had the CGM fitted and had it taken off today, there is 0 chance of misuse at school, always monitored by a TA. I work out all her carbs and send it in on paper and the school ring me with all blood sugar readings and to discuss corrections if needed and bolus's also what snacks to give when for PE etc Her pen is also kept in the school office or is kept in the class room where there is also a member of staff always presant. Everything is checked and double checked, She did spend half the time in hospital with the device on so it will still not give a true picture as she wasn't at school or dance where she spends a lot of her time after school. She is rarely at home if I'm completely honest.
 
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Kids ? I have been T1 since 1966 & I don't know how my parents put up with me. From the age of 3. I was very active in my youth & still full time employed. I had 3 paper rounds & bought my first car at 16. I know people are different but stress always makes my bg go down. I am up & down ladders & scaffold a lot at work but I love to play chess on the computer, my bg goes down with that cos I don't like to lose. Your head is working ? 🙂 Good luck
 
Hi Sarah
Has anyone mentioned a honeymoon to you? It's quite a common situation especially for youngsters, so I would have thought the hospital team would mention it, but just in case they haven't it's essentially a temporary recovery of the cells in the pancreas that produce insulin. It's a bit of a myth that type 1 folk produce no insulin at all, many of us can produce a tiny bit, just nowhere near enough, but during a honeymoon period some people produce enough to go without rapid insulin for a while. That might be what your friend saw referred to on Facebook. Has anyone mentioned that?

To be honest I just did a quick internet search for more information you could look at, but there's barely anything of use 🙄. So In short if your daughter is still producing some insulin of her own it's likely to be spluttering and erratic. Most of the cells that produce insulin are destroyed but some can cling on in there and for some people some regeneration occurs when the immune response calms down after initial insulin treatment. The pancreas is designed to respond with insulin when blood sugar rises, so if she's having a spike after food (which is normal because injected insulin doesn't react as quickly as the home made stuff 🙂) then it's likely if it's still got some juice it will try and pump a bit out there. The same with exercise, some of us find exercise is tricky for blood sugar control because three things happen, the first is our body has to fuel the activity, so it releases glucose from the liver and or food we've recently eaten, in turn the pancreas shoves out some insulin to carry the glucose into the cells where it's used as fuel, finally to make us super efficient the body also becomes more sensitive to insulin because of all that circulating oxygen so it gobbles up the glucose quickly. All works delightfully well if you have a fully functioning pancreas, can be a bit challenging if not. The reason I mention that specifically is if she's having injected insulin and a splutter of her own insulin too the net effect is increased because of the increased insulin sensitivity. The cherry on the top though is you won't know when the pancreas decides to help so it's really difficult to control. If the medicals haven't mentioned the honeymoon period ask them about it, they should be aware of it.

Let us know how you go on with the CGM data, and I hope your daughter isn't too distressed by all the hypos, they can make you feel quite rough when they're so frequent.
 
Hi , thank you for your response The honeymoon period had been mentioned the way it has been said was that her pancreas had stopped making insulin altogether, hence the long period of high sugars. If her pancreas is letting out random spurts of insulin that would certainly explain the rapid drops and low readings of her blood sugars. One minute she can be high the next minute she can drop low. We also had a period where she couldn't maintain a blood sugar overnight which caused her to seize or have unconscious episodes first thing in the morning . It infuriates me that they outright accused my daughter of self administration because they can't find a cause, I know she hasn't been, she has always been very closely monitored and medication checked because of her age. School monitor at all times, her dance school monitor her closely and to be honest she is never left alone. Now everytime she drops low they think she's doing it to her self. I keep her pen out of reach and I have taken over all of her medication administration which had taken away all her independence she has spent a year trying to achieve, just to avert suspicion.
 
Oh how annoying Sarah!

Does she take some extra carbs before/during eg dance classes? I think most people - kids and adults - find they need it.

Don't like asking really - but ..... could it be some lady hormones raising their ugly heads to complicate things?
 
Yes she does take extra snacks with excersise and we test hourly. I have raised the question about hormones and ive been told if it was hormone related her sugars will be running high not drop low like they have been. Ive seen her sugars drop as low as 1.2 which resulted in an unconscious unresponsive episode. She has dropped lower than that which caused the seizure but we don't know how low she actually went as she started seizing in the night, I don't know how long she was fitting for before she woke me up. By the time I tested her, her sugars had risen to 2.9.
 
sarah Millard said:
Hi , thank you for your response The honeymoon period had been mentioned the way it has been said was that her pancreas had stopped making insulin altogether, hence the long period of high sugars. If her pancreas is letting out random spurts of insulin that would certainly explain the rapid drops and low readings of her blood sugars. One minute she can be high the next minute she can drop low. We also had a period where she couldn't maintain a blood sugar overnight which caused her to seize or have unconscious episodes first thing in the morning . It infuriates me that they outright accused my daughter of self administration because they can't find a cause, I know she hasn't been, she has always been very closely monitored and medication checked because of her age. School monitor at all times, her dance school monitor her closely and to be honest she is never left alone. Now everytime she drops low they think she's doing it to her self. I keep her pen out of reach and I have taken over all of her medication administration which had taken away all her independence she has spent a year trying to achieve, just to avert suspicion.
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Tell her WELL DONE from us on the forum & you need a pat on the back too. Keep at it ! 🙂
 
Can I suggest you try different insulin's? As a child and an adult if my insulin was changed for any reason I would swing high then low all within an hour, then the reverse would happen. It transpires the problem is caused by the additives and there's only one insulin on the market that I can use.
 
Thank you , they did try her on Levimir (not sure if I spelt that right) she had that for 2 days the second night was when she had her seizure so I asked to come off it and go back to the lantus. There was a whisper that she may have been sensitive to it but when I questioned it the response I got was, we have over 200 people on it and never had a problem before so it's very unlikely! It was too much of coincidence for my liking and it doesn't suit everyone but they weren't having any of it.
 
There are animal insulin's available to try as well as other non analogue insulin's. The remark that they have 200 other people on it without a problem is crass and ignorant, look at it another way many people can take penicillin yet others have an allergy.

I would also ask for her to go on a pump if the hospital is not proactive then change hospitals.
 
That was exactly my thought when they said it. It doesn't suit everyone, I changed her back straight away. I wasn't taking any chances. I am in the process of getting her referred to a specialist hospital. After they out right accused her of self medicating because while she was in hospital her pen was locked away and her sugars were stable (bearing in mind she wasn't doing her normal day to day activities like school and dancing which she does a lot of. Evan though she came out on ward leave to attend one 1 hr dance class which is know where near her normal routine), which was absolutely disgraceful I might add, she is 9 years old. All Meds are checked anyway. This was the last straw. Now everytime she drops low they question if she has self medicated again. I've had to resort to taking over complete control of giving her injections just to avoid suspicion.
 
Oh dear Sarah what a worry for you. Lantus didn't suit my son at all, it caused terrible crashes in his blood sugar overnight and would run out mid afternoon, leading to massive highs. It doesn't always have the flat profile it claims to have. Has your daughter's team suggested an insulin pump? It would be so much better for her to be able to programme the exact basal insulin she needs at each hour of the day or night, and she can reduce it for exercise.

In your situation, I'd be tempted to go right back to basics, including having a couple of weeks off dance classes etc. Start with a few days of no exercise, keep a detailed diary of food eaten, insulin given, and BG levels. Then add back in the exercise gradually. See if you can pinpoint anything that triggers the lows. Do you test her levels during the night?
 
Hi there. Yes we have done all that. They won't give her the pump yet as she hasn't long been carb counting long. We have gone back to running high again. It's so frustrating. I dread to think what her Hba1c is going to be like . I'm really concerned for her health.
 
Keep going. I am really pleased my parents did for me. Good luck 😉
 
About the hormones thing, I don't understand why they said it would go high.

When I am on my periods I can hypos for no reason all the time, they just happen for no apparent reason.
I know she's only 9 and that would be early for her, but it's just a thought.

It sounds like you are doing your best both of you, all I can say is stick at it.

As others have suggested prepahs go back to basics and cut out all the exercise for a while then slowly bring it back in.

Also I think I would be moving teams after them blaming her, it's shocking!

Xx
 
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