new member wanting pump

[splodge]

Hi, my 10yr old daughter Alice was diagnosed T1 21 months ago. 2 weeks ago her diabetes nurse (who's absolutely fab, couldn't have got through without her) told me her doctor asked if she wants to go on the pump after xmas, we were so excited, read the leaflets & watched the video, then 2 dayslater, she phoned & said her doctor said she can't go on the pump yet as she doesn't quite meet the required spec. Alice's HBA1C was 7.6, she's on carb ratio 1:5 (1 unit of novorapid per 5 carbs) and 28 lantus. Her blood has never been stable, high, hypo's, hardley ever had a day where she was between 4 & 8 mmols all day. I actually cried for the 1st time since she was diagnosed, when I was told she couldn't go on the pump, I was so scared, I just didn't know what treatment would improve her. She now sleeps in bed with m & her dad cuz me & Alice are scared incase she's in a coma when I wake up, last week she woke up below 4mmols every morning. Sorry, just wanted to get it off my chest and be albe to talk to and share thoughts with other parents, thanx, amanda x

[Momof4gr8kids]

Maybe if you research why your DD needs a pump, and give the info to your doc you can get your way. I honestly think it would help with the highs, and lows you are seeing. Good luck, Jamie

The below was taken from
http://www.findarticles.com/p/articles/mi_m0MDP/is_2_5/ai_110265496

The UK National Institute for Clinical Excellence (NICE) issued guidance to the National Health Service (NHS) on the 26th February 2003 on the use of insulin pump therapy recommending that insulin pumps be made available to some people with Type 1 diabetes in England and Wales. The NHS Quality Improvement Scotland has also advised that these guidelines are as valid for Scotland as for England and Wales.

For some people with diabetes, an insulin pump enables greater control over blood glucose levels than other insulin delivery method as precise pulses of insulin are delivered as required in a more natural way. Benefits may include improved control, fewer hypoglycemic events and an enhanced quality of life. This greater control is vital, as maintaining near-normal glucose levels can prolong life and significantly reduce the risk of diabetic complications such as blindness, kidney failure, amputation, impotence and cardiovascular disease.

NICE recommends insulin pumps as an option for people with Type 1 diabetes who, despite multiple daily injection therapy, have not been able to maintain recommended haemoglobin A1c (HbA1c) levels of 7.5 per cent or less without experiencing repeated and unpredictable episodes of hypoglycaemia. The guidance applies to people with Type 1 diabetes who meet these criteria, including children, adolescents, pre-conceptually or during pregnancy.

[cassandra]

wait, so, what does your HbA1c have to be in order to meet the specs for a pump? i guess if you have high readings you can't?

[splodge]

Hi Cassandra,
I think your blood has to be well controlled, with HBA1C under 7.5 They say if you can't control it without a pump, you can't control it with a pump, but if it is well controlled, then the HBA1C is going to be 7.5 or lower, so you won't qualify. Makes no sense, if it's all over the place HBA1C is going to be bad, but no control over sugar levels, so you still won't get one. They also say you qualify if you have frequent hypo's.
Confused........The top and bottom of it is, they cost £2,800.00 with £1,500.00 cost for supplies each year.
I'll keep at it and let you know.
Thanx

Amanda:confused:

[cassandra]

how frustrating. but i guess that probably means i have to get in better control before anyone is going to let me on a pump. my last HbA1c was a might higher than 7.5. :(

good luck, and keep us updated!

[Jackie UK]

Hi Alice and Cassandra

You have misunderstood the NICE guidance. You do not have to have a good HbA1c to "qualify" for pump therapy. Quite the contrary, if your HbA1c is over 7.5 and you have tried Lantus or Levemir and a basal bolus regimen and you still cannot keep you HbA1 c below 7.5 then this is a reason why one might be considered for pump therapy. If your HbA1c is this level 7.5 or above or below and you, or your child have serious episodes of hypoglycaemia and need third party help to deal with this, then this means you will be considered for pump therapy.

There are about 38 parents with children using insulin pumps on the UK CWD email support list which is used daily. For more information about pumps and advice about getting one try signing up for the mailing list. For some reason it is a lot more popular that the message board type forum.

See hear for details of how to join.

http://www.childrenwithdiabetes.com/uk/


Jackie UK mailing list administrator


Hi Cassandra,
I think your blood has to be well controlled, with HBA1C under 7.5 They say if you can't control it without a pump, you can't control it with a pump, but if it is well controlled, then the HBA1C is going to be 7.5 or lower, so you won't qualify. Makes no sense, if it's all over the place HBA1C is going to be bad, but no control over sugar levels, so you still won't get one. They also say you qualify if you have frequent hypo's.
Confused........The top and bottom of it is, they cost £2,800.00 with £1,500.00 cost for supplies each year.
I'll keep at it and let you know.
Thanx

Amanda:confused:

[cassandra]

thanks for the info. yeah, it doesn't make sense that people who have higher readings should be denied access to a method of gaining better control. but, i suppose part of it is a question of effort, because the pump seems to require a lot from the user in terms of figuring things out. thanks for the info on the mailing list.

[lisa-j]

My son's, back in hospital once again with fluctuating sugars levels, being sick and with very high keytones . . .
he were put onto a cardiac monitor an drip, was also given oxygen. his nurse has said we need to try a new type of insulin once again. but this time it's like starting again from the start as he has to have insulin 4 times a day an also count carb's too. his sugars kept on going from 30.0 an above to as low 1.3 he was diagnosed in october 2003 an has never really had stable sugars, this is the third time he has been admitted since this summer. once we were so lucky as he was so close to going into a diabetic coma .
anyone got any advice they could pass on to me, i would be truly gratefull for

sorry i just had to tell someone . .

[momof2]

Hi Lisa

I'm sorry to hear that your son is sick again. I remember your previous posts -you've had a really hard time over the last few months.
It sounds like the change in insulin may be just the change needed to gain good control.
My understanding of MDI (multiple daily injections) is that your son will inject a long lasting insulin (lantus) which will provide a basal level of constant insulin. He will then need to inject fast acting insulin with each meal, and will vary the amount according to how many carbs will be contained in the meal. Although he'll need to inject more often, he'll have a lot more flexibility and hopefully better control.
My son is not on this regime, as he is still doing well with 2 injections of mixed insulin a day, although eventually he will go on to this routine.

Feel free to come here and vent or gain advice, we all understand.

My thoughts are with you and your family at this time. Keep us posted on his progress. Take care of yourself too.


{{Hugs****

[lisa-j]

Hi there,
Thankyou so much for your reply to my post, i'm so greatfull to you all for your advice an comments.

Well as he's now on this new ruteen i must say his sugars aint as high as they used to be :) . . . .
BUT !!!!
He now keeps on going down to 1.9 or up to about 19.0

I'm so confused as of what amount of insulin we actually give with his meals, but he is so much better now :D

thanks once again
love lisa x

[momof2]

Hi Lisa

Sounds like some progress is being made.

It's uncanny - the same day that I posted my previous message we had Ben's hospital check up, and as he has been having highs at bedtime, he's now been put onto the MDI routine. At the moment he's having mixed insulin in the mornings, as before, which lasts until teatime, this saves him needing to inject at school for lunchtimes.

However, he now has lantus at teatime, plus a 1:10 carb ratio for his teatime meal. So far it's working well, we are into day 5, and we're getting used to counting carbs and covering with the right amount of insulin. Although it means another injection, Ben is already seeing the benefits of it, and can have a little more of what he fancies!! We've still seen a few highs, but I like the ability to be able to correct now when giving his teatime insulin.

I'm pleased to hear that your son is now better. Have a very merry Christmas.
xx