8 year old daugher is a diabetic for 18 months

wada

I have an 8 year old that has had diabetes since 25 feb 2007. her personality has changed since then and has a lot of anger. she is waiting to be refered to a Psychologist to help her. she got diabetes 8 weeks after our 3 child was born since then weve had a run of bad luck. her daddy has just got over cancer.

We noticed the signs but put them down to the disruption caused by having another baby. She started weting the bed and drinking a lot of water. this began in late dec 3 days after the baby arrived home. In feb during mid term she became very ill i undressed her to put her to bed and found she had lost at least 1.5 stone in a week ( i took her swimming week before and weight was fine) her legs were just bone no fat.

i went downstairs and told my other half and we phoned the out of hours doctor and she was seen there and then. she was on her way in to a coma when she got there and was transfered straight to hospital. Its the worst fright we have ever got. they kept her in resus for 8 hours until she was stable and moved her to the childrens ward.

she doing ok now but has just been released from hospital to try and get her sugars under control they were up in the 20's a lot and she was waking up with ketones. her a1c levels were 9.8 for 6 months then went to 9.2 and the last time they were 8.7. they will be way higher at the next clinic. she has the assencia contour monitor. i find it ok but we dont know any different. She is a very sad and angry child due to the diabetes changing her life. She is hoping to do gymnastics this sept but i dont know if they will except her because she is a diabetic. (insurance reasons)

Dose any one else out there have a diabetic child?
Tring to claim

tbh

hiya wada - welcome to boards I was dx'd when I was 21 and I found it difficult as hell, so I can only imagine what it must be like for you and your little one. I'm sure once the initial shock wears off, things will calm down, and hopefully she won't be too old when a cure/major advance occurs. Until that happens, have you considered getting in touch with the Diabetes Federation of Ireland? they have a kids club called the sweet pea club (sweet pee, get it?!) - you can find more details here.

If there's anything else you need, just give us a shout - only too happy to help. There's also a parenting forum you could try..

B00MSTICK

I was diagnosed when I was 6, I'm now 21.

Sugars will be hard to control at that age, I assume she's on 2 injections a day morning/evening but luckily keeping the a1c low isn't quite as important now as it will be later on. You will have to drill her into a routine and stick to it vigorously.

Being a diabetic will not stop her from doing anything aslong as its well monitored.
Since about 8 (even earlier) I've played on (pretty successful!) soccer/basketball/gaelic teams without any problems (insurance or otherwise).
I now drive a 200bhp+ sports car and was not loaded by insurance for having diabetes. I already have a degree and am working on my second.

Essentially what I'm saying is that having diabetes will not limit your child in any way. It also teaches responsibilty and discipline early on.

Soon when someone asks you "Does your daughter suffer from any diseases?" You'll say "She has diabetes, but she doesn't suffer from it!"

The IDA used to (maybe its all become the Sweet Pea club now?) have the Tadpole club which organised outings to Trabolgan and places like that, so as tbh mentioned it might be a good place to start.

Good luck

tbh

B00MSTICK wrote: »

The IDA used to (maybe its all become the Sweet Pea club now?) have the Tadpole club

Good luck

it must have been renamed - that's what I thought it was called as well

mike65

www.diabetesireland.ie

http://www.diabetesireland.ie/website/content/living-with-diabetes/for-kids/what-is-diabetes.aspx

Mike.

wada

She is on 4 injections now, she was on mixtard then changed 4 months later because she was getting highs on the afternoon, she was put on nova mix that was even worse, she was then put on levimer and nova rapid she was allergic to levimer the ph balance or something her tummy and legs got distroyed ( she was on 5 injections with that). she is now on lantas 16u each moring 6 nova rapid - 4 nova rapid - 4 nova rapid- plays hell at school needs a special needs assistant.

wada

We signed up for diabetes ireland she was in sweetpea club for a year but found it useless unless you lived in dublin,

think they got a clare branch open earlier this year.

We also joind jdrf based in uk this had way more info but all things were uk based. I think if she knew someone else round her own age with it she might stop being so angry. no one in her school has it and dont realy get to meet people at the clinics. we can fight for up to an hour to try and get her to take insulin and even test her blood sugars its a constant fight with her.

wada

Were going on our first holiday since she developed diabetes, were going to disneyworld florida - any advice on bringing insulin on plane - were going for 14nights - do i stick any in suitcase or just hand luggage - how many gluogen should i bring - if medical emergancy in america what should i do besides call 911 ( travel insurance is covering her diabetes(thank god))


any ideas on above or any info that would be helpful

wada

BOOMSTICK question - did you ever get out of control angry having diabetes when you were young - my daugher is not coping and hates everyone cause they dont have it.

she acts up and sometimes gives herself too much insulin so she will have a hypo so she can get something sweet. we have coped on to this and have to watch her very closely. its hard with two toddlers running around.

how did you behave as a child with it were you good and did everything your parents told you to do? or did you act up if you did in what way?

robinph

Re travel: Do not put any of the medication in your hold luggage, keep it in your carry on. There will not be any problems at all with getting through security with the insulin and needles etc.

Don't know anything about how to deal with children with diabetes though as like tbh I was diagnosed much later in life. I can see how growing up with it would be very difficult though, and incredibly annoying for the child.

B00MSTICK

Well at the start I hated it, couldnt handle blood tests even at the start but soon as I got home I was basically doing them myself straightaway but was on the Mixitard (20 and 30 maybe?) 1 morning and 1 evening. Im on 3 x Novarapid and 1 x Levemir now.

I gather she does the injections herself so whats wrong at school? As in why does she need the assistant? I know when I was in primary I had to take my snack a little before everyone else got break which made me feel a little awkward at 1st but I got used to it. Maybe once she doesnt need help and kids see her doing stuff herself she'll get better. (boys think blood is cool)

I don't remeber acting up per se, but I might have been easier to deal with cuz I was youger and probably clueless/easier to mould/manipulate! It may have made me quieter even, but now I find its a good topic of conversation and often get complimented how disciplined I must be and how I act so cool about it.

I think you should let her have treats like a normal child i.e after dinner/fridays whatever way you want to work it, but let her see that messing with insulin dosage at her age isn't a good idea, that she should ask first and if you think its ok then you help her adjust it/adjust it together.

I know what you mean about the clubs, still get sent raffle tickets to sell! A good place to meet people is the clinic, try to get to know a few mothers/fathers and arrange a meet-up or something?

As far as the angry at everyone thing goes try show her some of the famous actors/actresses/sports people (Halle Berry etc) that have it so she knows she can still be like everyone else.

Last holiday I was on was just to glasgow for a week, brought injections etc in hand luggage and spares in suitcase, take a note from your GP too, some authorities are stricter than others, I can Imagine the US ones being tough. I've never had to use glucogon thank god so I have no idea there, 1 in HL, a few in suitcase maybe? I usually just keep it all in hand luggage then distribute it to other peoples bags etc just incase mine gets lost/stolen

You just have to fight with her a bit I guess, tell her it's not going away and she has to do it or will get sick, (scaring her a little may be needed even, blindness,amputation,heart disease, y'know all the things we hate hearing) it doesn't matter how long ye fight she still has to do it so she should just get over it. Does she still find it very painful?

Sorry I'm not a parent and not much help in this regard. Must be hard alright. I think joining clubs etc is a good idea, shows her she can be and is (for the most part) like everyone else.

tbh

wada wrote: »

Were going on our first holiday since she developed diabetes, were going to disneyworld florida - any advice on bringing insulin on plane - were going for 14nights - do i stick any in suitcase or just hand luggage - how many gluogen should i bring - if medical emergancy in america what should i do besides call 911 ( travel insurance is covering her diabetes(thank god))


any ideas on above or any info that would be helpful

I travel a lot, always keep at least two pens of each (I'm on the same as your daughter) in my hand luggage and the same again checked in. Make sure to bring spare needles and an empty pen. I don't even take them out of my hand luggage now, they never check. Don't forget that you'll have to correct for the Lantus injection- if you take it at 7pm, florida is what - six hours behind - so you'd have to either take it at 1pm (awkward, take it from me!) or start to adjust now based on advice from your doc (and then the same when you get back).

SeaSide

Lots of info on traveling to Disneyworld here

CathyMoran

I got diabetes when i was ten< i found it very difficult for the first few years< i was so scared of needles (yes< no pen in those days) that i had to get mum or dad to inject me< luckily i was on very few injections per day> i did find it very hard not eating sweets and girls in school used to make comments about it that really hurt> My hba!c was not perfect when i was a kid and i used to (and still) got headaches when i was over ten which put me in a cranky mood> i hope that this gives you some insight into your daughter>

robinph

Oh and there is absolutely no reason why she shouldn't be able to do the gymnastics, or any other activity she becomes interested in. Admittedly, she is unlikely to be able to become an airline pilot but diabetes is certainly no reason for her not to do anything else. You will need to explain the situation to whoever is looking after her though so that they know what to do in the event of a hypo, but it is not a big deal.

wada

Thats one thing i didnt realise is that she takes her lantas at 8.30am we will have to inject her in the middle of the night-

her blood sugars are very messy at the moment well for around 6 months and the school back in dec requested a special needs assistant to monitor her highs and LOWS because the school teacher was basically refusing to do it because she has 27 other kids in the class that need attention. she will have a shared special needs assistant in sept - we requested this because they wanted her to change class as said she would be excluded from school if we did not agree to it ( she has friends and as if diabetes hasnt already changed her life she would loose her friends) we put up a fight and spoke to hse people who decide on who gets sna's and they said she could have a shared sna with another boy in her class. you see the school wants 1 sna per class not 2 in 1 class and 0 in another. we thought it very unfair on her and hey she already needs to see a phychologist because she's handling it babdly.

i'll take lots and lots of insulin and refills and needles to florida about double the ammount i need in case of any problems.

cheers for the advice

wada

Just went on to allears.net thats full of info on diabetes type 1 and disneyland thanks

BC

wada wrote: »

Thats one thing i didnt realise is that she takes her lantas at 8.30am we will have to inject her in the middle of the night-

In relation to the times - if the times in Florida don't suit then you can gradually adjust the times in ireland before hand - talk to your doctor about this. For example, when i was going to america, I would have ended up taking my lantus at something like 4am. So instead my doc told me to adjust it by an hour a day over the space of a few weeks before i went away so that by the time i go there i would be taking it about 8am local time. You then need to do the same on the way back. As your daughter is newly diagnosed this might not be a runner for you so talk to the doctor about it.

On the insulin etc, just to echo what others have said - bring two of everything (two lantus pens, two novorapid pens, two meters etc) and plenty of insulin. Keep it all in hand luggage as insulin can freeze in the hold (and bags may get lost). If you're concerned about security you can get a letter from the hospital advising that the needles are for medical purposes and bring that with you, i've never had an issue though.

I don't have any experience of diabetes as a child as I was in my twenties when i was diagnosed, but just to say, the feelings your daughter is having happen to everyone no matter how old they are. I was angry, i was upset, i used to cry myself to sleep wondering why this had happened to me. Your daughter will get used to though, at this stage its such a normal part of my life i can't imagine what it would be like to not check my bloods regularly or to not take injections!

wada

spoke to the diabetic nurse they will change the times gradually of the lantas. thanks for that

*Carol*

Hi Wada, I replied to your thread on the parenting forum also.
I have a little boy who is 4 and a half years old. He was diagnosed 4 years ago. He uses a pump and is doing well.
I can't advise you on the emotional side of it all as my son is still too young to really care about it. He was dx'd at 7 months and has never known anything different. Despite this I often think about how I will justify his illness to him when he is older. I always try to make him aware that everybody has SOMETHING in their lives that is trying - Some people can't walk, some have sick mummies or daddies, some people are blind, some have diabetes etc.
When he gets older I'm sure he will resent his illness but I hope he sees the positive too. It is manageable and his pump allows him to live a wonderful, unrestricted lifestyle. He can do anything he wishes. He can eat pretty much whatever he wants, when he wants to. He can do or play anything and everything. Diabetes doesn't and will never hold him back.
I hope your little girl can come to terms with her illness and realise that it won't hold her back either.

As for the travelling; we went to the states twice since diagnosis.
We brought 3 times the amount of medicine that we thought we would need - just in case there was an emergency. We dispersed them all out amongst our luggage so that if one bag went missing we still had supplies.
Remember that there are very tight restrictions on what liquids you can bring onboard. Get a doctors letter explaining all about her meds. And if you treat her lows with juice get your doc to put that on the letter too (otherwise it may be taken from you before boarding).
We also researched where the nearest hospitals and pharmacys were to where we were staying.

I hope some of this helps...

wada

thanks carol,
coulndt reply earlier was on my honeymoon.
cant think what you must of being going through when you were told when your baby was 7 months old - but i suppose you have a bit of an advantage as your child know no different. trying to inject a 2 year old must be hard with them running around. how do you find the pump? how old was the child when you decided on the pump, ny little one is terrified of the pump because of the freddie

*Carol*

Hiya ,
My son was 14mts old when he started pumping. It was tough alright trying to give a small baby a shot. Plus he needed so little insulin at that age that we couldn't even use a pen, we had to draw the insulin up in a syringe. Trust me if your daughter can handle injections every day then the pump would be a breeze... It is inserted with a tiny needle but that comes straight out and then it's just a teeny little tube. So, it's not like a freddie that they get in their arm for a drip etc. Also, it only needs to be changed every 2 - 3 days. So, no more shots every day just one little pinch every couple of days.

My son LOVES his pump and is very protective of it. He started school last week and has been informing all his friends about it. :rolleyes: I remember well what life was like before the pump and I am not keen to go back there. His life was so restricted and regimented and his blood glucose control was awful.
His hba1c is great now and his daily control is very good. We have to count all the carbs he eats but it makes things so much easier.
I'm very pro-pump and I think everyone should know all about it and decide for themselves. We weren't told about it at all when ds was dx'd. We only found out about on the web. And we had to wait about 6 months before we got it. It's really FAB though. We are so happy with it.

I hope your little girl is well.

PS Congrats on getting married!!!!

wada

she was at the diabetic clinic today her blood levels were 8.7 over the 3 month period down .02 from 8.9. thought they would be way higher.

*Carol*

That's great Wada, they're going in the right direction!!!

joker1

Hi there, my son is 9 and was diagnoised in july this year with type 1. he is on 2 injections on mixitard a day. he is coping well with it but does get very annoyed and angry at times, usually if his levels are high.

Just wondering if either of you are in receipt of the DCA allowance?

wada

Yes but she was 7.5 years when she hit it. I was told she won't get it when she turns 9 so I am expectin a call back she turned 9 in sept. I just got careers allowance to for her. I should of got it when she was first diagnosed but I wasn't told about it. Found out when my husband got cancer were both 28. A lot to deal with. She was on mixtard but had to change cause it wasn't keeping her low enough at around 12 to 6 pm so had to change then we had levimir she had a reaction to that and then changed her to lantas. It's a long journey. Best of luck let me know if u get Dmc I live in co Clare and area medical doc is diabetic and thinks nothin of it and don't give it to over 9s

robinph

*Carol* wrote: »

As for the travelling; we went to the states twice since diagnosis.
We brought 3 times the amount of medicine that we thought we would need - just in case there was an emergency. We dispersed them all out amongst our luggage so that if one bag went missing we still had supplies.
Remember that there are very tight restrictions on what liquids you can bring onboard. Get a doctors letter explaining all about her meds. And if you treat her lows with juice get your doc to put that on the letter too (otherwise it may be taken from you before boarding).
We also researched where the nearest hospitals and pharmacys were to where we were staying.

Only just noticed this but, do not put insulin into your checked baggage. The temperature of the baggage hold during long haul flights could damage the insulin as well as the risk of bags going missing, keep the drugs in your hand luggage. The current daft liquid restrictions do not apply to medications, you will not have any problems with taking insulin through the airport security or the needles/ pens/ syringes, I actually doubt that they ever even notice them in my carry on bags.

Knowing the locations of hospitals and pharmacies before leaving is a good plan though.

wada

yeh i read that somwhere, were off in a week and have all her suppiles in one case for hand baggage. we still need to get a hypo kit though. got docs letter and a letter from hospital and a perscription. should be fine more relaxed now.