[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]


Hi Folks

I am a bit worried about getting flamed here but we receive the DLA at the
middle rate.  Sasha was only four when she was diagnosed.  I do think it is a
very generous allowance.  We were told we could apply for it by our D clinic
and they gave us all the forms to fill in and filled in all the bits they had
to.  I find it a lot more time consuming having a D child.  I spend a lot, lot
more time managing her condition than I had to spend on my other children when
they were the same age.  Occasionally I only have Beckie to take somewhere and
its remarkable how much easier and how much more relaxed it is.  A trip out
anywhere always takes planning.  Spontaneity is really a thing of the past.
In the past few years I always have to go to parties with Sasha if they are
things like swimming parties and sports parties where there is an unusual
amount of exercise and I can't predict what her levels are likely to be. The
twins have only ever been asked to a couple of parties that just involve a
trip to someone's house. I also have had to be there to give the injections
and to work out the amount to give.  I dont think it's fair not to stay at
some of these parties because if something goes wrong its not fair on the
parents of the party child who have enough to do making a special day for
their child without the worry of Sasha going hypo in the pool when there are
loads of people in there.  Sasha and Beckie are good swimmers they both swam
800 meters recently but when we go on holiday to Centre Parcs we have to
accompany Sasha everywhere  (well you are supposed to until they are over 8
anyway) but there is no way you can relax and read and let your D child wander
off on their own in the huge crowded pool with wave machines and flumes until
they are a lot older.

Everyday I check the amount that she has for breakfast and carb count the
breakfast and lunch.  I work out how much insulin to give according to what
her levels were overnight and what she is taking for lunch and snacks. I do
the same for the evening meals and snacks
I spend a lot of time on the internet looking at D websites and finding out
the best way to do things.  I certainly wouldnt be spending all this time
online if it were not for Sasha being D but then I wouldnt have met all the
wonderful people who I have.  If Sasha was cured tomorrow I would certainly
miss all the folks I have met though Sasha having D any way, I digress

 When Sasha stays for choir after school, I go up and check her blood sugars
and make sure that there actually is choir, as twice it was cancelled and the
parents were not informed.  I have been in to check to find that her blood
sugar levels are low but she was sent out of the class to the hall and unable
to get her meter.  I frequently have to go and speak to the teacher about what
should be happening and what is not.  Yesterday they were doing choir practice
at lunch time and the deputy head kept them singing until they had got it
right and Sasha couldn't go and check her bg and their lunch was delayed by
half an hour.  Fortunately Sasha was high that day as usually she is always
quite low and needs to eat at 12.00.  I just can't seem to get it across to
the teachers what needs to be done.  It all takes so much time and effort I
could scream.  If Sasha did not have diabetes then it wouldn't matter if they
had lunch late or she was hungry after school or the teacher took them out of
school with nothing for a hypo or sent them out of the room when they felt ill
which has all happened to us in the last month.
It all means that you can never relax for long.  I have to be available to go
to the school if there is a problem.  When she has started each of the infant
and junior schools I have had to spend quite a lot of times going in to school
to check the levels for a couple of weeks.

Ever since Sasha has had seizures at night we always check everynight at 2.30
AM  I have to set my alarm and get up.  Sometimes I or my husband will have to
check again later.  When Sasha has been ill we have had to check her blood
sugars every 2 hours thought the night.  I cannot remember when I have had a
full nights uninterrupted sleep.

I am not sure if a D child's diet would be more expensive than another child.
It may be a less well off family would be able to buy better food with the
allowance.  Sasha and Beckies diet is now considerably more expensive than
before because of the Coeliac condition but we wouldn't get the allowance for
that alone.

We have put the money that we get for Sasha in a separate account.  We are
hoping to be able to keep this money to pay for a pump when she is older.
There is no one at our clinic who pumps and our clinic wouldn't consider it
because her HbA1c was 5.5 at the last reading and previously it was 6.2 and
that sort of level.   I got told off yesterday at the clinic because it is so
low.   I dont know what else I can do.  The consultant told us to cut down the
amount of insulin but it we do she will go too high.  It's just crazy.

 We have bought a Medisense Soft Sense meter with the money and paid for the
twins to go to a drama group on Saturday that other wise we wouldn't be able
to afford.  It is also somewhere that I feel that Sasha will be looked after
as the woman that runs the group is qualified to look after children (she also
runs a day nursery in the week).  When I take Sasha to gym on Fridays one of
us has to stay as the coach has more or less told us he would totally panic if
she became ill and went low, so the round trip and staying there means two
hours altogether.

I look on the benefit as providing extra things for Sasha to enable her to
have things we might not be able to afford, like the pump.  We dont use it for
ourselves but I suppose if does cover things like a mobile phone that I didn't
have or want before Sasha was diagnosed.  I still only use it for emergencies.
Terry has now bought one as well.

As Sasha gets older I expect that she will take over more or most of the
management of her diabetes but you still need to be quite involved.  there are
studies that show that the more parents stay involved with their teenagers the
better the blood sugar levels and health is.

I dont think we will be able to claim it after she is 12 years old.  So we are
saving it for her future diabetes care.

I hope this makes some sense as I have lost track of what I was saying as I
have been constantly interrupted by my 4 children all wanting something, the
two older ones want my computer.  No rest for the wicked eh!  Got to go and do
Sasha's Insulatard and will lose my place in the queue for the puter.

Kind Regards

Jackie Jacombs
email @ redacted
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml