# 1st Clinic



## Danielle (Feb 25, 2010)

Hi,

My 4 year old boy was diagnosed with type 1 in Oct and We have his first clinic tomorrow. I am quite anxious and would love it if anyone could let me know what to expect.

Thanks


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## jimmysmum (Feb 25, 2010)

Hiya,

Our son was diagnosed in November so weve only had one clinic appt. (weve since had our daughter diagnosed about 10 days ago so have another 1st time clinic appt due in March) 

Anyway, they weigh, measure, check urine, and do an A1C (an avergave blood sugar level) then we got to see the whole team, which consisted of our lovely DSN, her junior whos also lovely, our consultant and the other consultant attached to the clinic, they go through everything, food, insulin, techniches, they gave an all over physical exam to our son and answered any questions we had and explained about all the blood tests they take and all the results our son had etc. I cannot fault our care and feel very safe.
, at les
Im so glad we have this bcoz we now have our daughter dx, shes only 2 bless her, at least we know what to expect in March at her 1st, we know all the people. I hope you have a team you feel good about hun, let us know xx


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## jimmysmum (Feb 25, 2010)

sorry typo, edited.


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## Danielle (Feb 25, 2010)

That is so shocking!!! I cannot believe two children within4 months of each other . . . .  it must be so hard for you especially for your 2 year old!!!

How old is your little boy? Louis is 4.

Thanks for the info on the clinic I'm starting to get nervous, they go through enough!!!

Do they take blood for the test or is it something like glucose testing??

Yeah we met the team when Louis was diagnosed and they are all lovely and supportive, the only bad experience I have had was with the school nurse who thought she knew more than Louis specialist nurse!!!


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## jimmysmum (Feb 25, 2010)

Yes very shocking our son was 10 when diangnosed, hes 11 now and to have our little princess diagnosed too is hard going but we have to get on with it, no nurse is coming tomorrow or any other day. I also met a lovely friend on here, we both have had 2 kids dx in the last 6 months and this forum has proved invaluable for that reason alone, let alone all the other info it has to offer.

Dont be nervous an A1C test is done on your usual testing machine so it doesnt hurt.

You have to take the advise of your dsn not the school nurse. Ignore her, find out for yourself and put her right, good luck. Let us know how it goes 
xx


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## Kei (Feb 26, 2010)

Hi Danielle!

I hope clinic goes well today.  Jimmysmum has given you all the information that I would have done.  Do be aware that they see several children so you could be waiting there quite a long time.  I usually have to take all 3 kids with me, so we have a bag of "special" toys and books that are only taken out at clinic.

As Jimmysmum said, my two eldest two were diagnosed with type 1 recently.  F (age 7 in April) was diagnosed in July 2009 and J (just turned 5) was diagnosed the day before Jimmysmum's little girl.  He has his first clinic next Wednesday.  It has been great being in touch with other parents on here.

The blood test is just a finger prick, and the blood is squeezed into a small thin capillary tube for analysis.  The first time F had hers done at clinic by the nurse.  Since then, they have given me the tube and a blood testing bag and I do the test myself and drop it off at the surgery.

I like seeing the kids' consultant at clinic, and speaking to our DSNs face to face (we have two, who job-share).  If I have any concerns, I write them down before we go, because otherwise I forget them.  I always take the blood sugars record sheets too, so they can look at the latest blood sugar numbers without me having to remember them!


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## Danielle (Feb 26, 2010)

*1st Clinic!*

Hi,

Louis clinic went really well although the consultant and phycologist were both off sick!

Im so relieved that its over and done with its another hurdle crossed . . . .

We have to increase Louis insulin as his blood sugars are too high and see how it goes so fingers crossed.

Hats off to you both coping with 2 children with diabetes but like jimmysmum said you have to get on with it dont you what other choice do we have eh.

I look forward to being part of this forum and speaking to other parents who are going through the same thing because you feel so isolated don't you but really your not.

Take care x


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## bev (Feb 26, 2010)

Hi Danielle and welcome to the forum - although sorry you have to be here!

What regimen is your child on? How are things? My son is 11 and on a pump - he was diagnosed 14 months ago. I used to live in Wallasey!Bev


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## Danielle (Feb 26, 2010)

Hi Bev,

Small world eh, where about in Wallasey? I went to St Marys School in Wallasey.

Sorry to sound ignorant but what is 'regimen'? 

I asked about the pump today for Louis but they are going to monitor how he goes for now as his blood sugars are so up and down at the moment.

Isnt this forum great, so much support and help from people who actually understand, and are not just guessing what you are going through.

Dan xx


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## bev (Feb 26, 2010)

Hi Dan,

Gorsey Lane!Now in Wiltshire.

Regimen - what sort of insulin/injections is Louis on? Does he have injections with every meal and 1 as background (MDI) or is he on mixed insulin?

My son was on MDI for the first 9 months - but we couldnt get good control because children grow etc and now he is pumping - control is so much better and a lot easier than injections etc. If you can - push for a pump asap. Are you at APH? What is the team like there?Bev

p.s. This forum is the best - everyone lovely and supportive. There is another site us parents use - i will look for the link - you will be amazed at all the advice you will get if you join it. I like both forums as i get lots out of both.


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## SacredHeart (Feb 26, 2010)

Wow Bev. This may have been me just not clocking things, but I hadn't realised Alex was pumping so quickly!


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## bev (Feb 26, 2010)

Hi Sacredheart - He was diagnosed end of November 08 - put on MDI - and then put on the pump in August 09. I have made that sound like an easy transition - trust me it wasnt! I had to fight all the way for a pump and I think I just annoyed them so much that they caved in! lolBev


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## SacredHeart (Feb 26, 2010)

Oh, I have no doubt. It's just that I'm not long past 9 months myself, and the thought of pumping TERRIFIES me, so I'm just extremely impressed!


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## Danielle (Feb 26, 2010)

He is on Novomix 40 twice a day. Before breakfast 8 units and before tea 4 units.

Yeah he's at APH the team have been great however I was a bit disappointed that on Louis 1st clinic both the consultant and phycologist were off sick with no one to replace them only the DSN. And were  not going to see them now until June 

Are you from Wallasey then Bev or did you just live here for a while?


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## grahams mum (Feb 26, 2010)

your son will have also a proper blood test on the arm or hand for thiroid and coeliac disease we always have to stay about 1 hour for graham because he was crying and we have to hold him in 3 people  but this week was the 1 st time with not a tear and no magic cream or spray nobody could believe it


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## bev (Feb 26, 2010)

Hi Dan,

I was born there and lived there until I was 34! All my family are still up there.

I am a bit disappointed that Louis is on a mixed regimen. It is extremely difficult to gain good control using this method. ( i dont want to insult anyone as i know some children thrive on mixed - but in general its an outdated regimen).

With a child they want to eat when they are hungry - not when they *can* eat - so it makes life a bit difficult at times. Also if he was on MDI - he would be able to eat when he wanted and just inject for it. Are you carb counting at all? If not - you really need to learn as you need this for a pump. I bet he goes hypo at 11am and then really high later in the evening? Do you have a way to correct a high level? Did you have the hba1c done today at clinic?

Adrienne is the expert on mixed insulins - and she will tell you to try to get him off it. The good news is that your team have pumps - or do they? If they do then it means they are forward thinking and will have the expertise to help you when Louis starts pumping.

Whereabouts do you live? pm me if you dont want your address on here. We might know the same people!Bev


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## Danielle (Feb 26, 2010)

I'll bear all that in mind as im due to see Louis DSN next week to see how the insulin change is going, I will certainly raise my concerns as when we approached the subject of a pump she was slightly hesitant as they have to go through the Royal in liverpool.

HAvent a clue about carb counting as its not a subject that has even been raised as yet by the team . . . . .

I live in Upton but always hung around Wallaey as thats were my school was, I'm 31 but haver older brothers and sisters so yeah we might know the same people!!! What school did you go to??


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## bev (Feb 26, 2010)

Weatherhead Senior Comp!

The people on the other list travel all over the UK to get a pump. So if you only have to go to Liverpool for one - bite their hand off!

The hba1c should be done at every clinic - its in the NICE guidelines - so make sure your DSN does it when you see her. It gives you the 'average' blood sugar and ideally it should be under 8 for a child. Alex's was 12 on diagnosis then down to 9.6 - we couldnt improve it on MDI - then after being on the pump for just 3 months he was 8! I am hoping to get this even better at next clinic.

You need to get carb counting for when you change to MDI (which you will) and then on to the pump.Bev


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## Danielle (Feb 26, 2010)

Hi Bev,

He had that done today and it was 9.1????? No idea what it means, I sound ignorant dont I but it was a bit of a rushed clinic today what with their being no registrar.

Oh so thats good then if its the norm to travel and i only have to goover the water!!!

Dan xx


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## bev (Feb 26, 2010)

Dan,
You need to ask your DSN what he was on diagnosis as you need to know its going down. 
Dont worry about not knowing things - your still very new to all this like i used to be - so why would you know everything?

9.1 is quite high - but its very early days so dont worry. If it was 9.1 after 9  months - i would worry as this indicates future complications.

Dont worry Dan - you will get there in the end and you have all of us to help you through it all!Bev x

p.s. I know of people who travel from Cornwall up to Leeds for a pump - so yes - go to Liverpool!


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## Danielle (Feb 26, 2010)

Ah right will do that when I speak to her nxt week. Its so complicated isnt it and it doesnt help that every hosp treats it differently.

Guess I am lucky then eh if people have to travel that far, although you would travel to the moon if you could help your kids!!

Thanks Bev, you have give me some great advice which I will definatly follow.

Dan xx


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## Danielle (Feb 26, 2010)

grahams mum said:


> your son will have also a proper blood test on the arm or hand for thiroid and coeliac disease we always have to stay about 1 hour for graham because he was crying and we have to hold him in 3 people  but this week was the 1 st time with not a tear and no magic cream or spray nobody could believe it



I think he had these tests on diagnosis but they didnt test them today, maybe cos the consultant was off sick??

How old is Graham?, he is a very brave boy to have it done with no cream or spray, well done Graham


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## grahams mum (Feb 27, 2010)

Danielle said:


> I think he had these tests on diagnosis but they didnt test them today, maybe cos the consultant was off sick??
> 
> How old is Graham?, he is a very brave boy to have it done with no cream or spray, well done Graham



graham is just 6 now he has not problem with his injection  but he never wanted his blood taken and another thing that he does not want to do is blood pressure taken because he is says that  hurts his harm and being so stress the reading will be high aniway so he has not have a proper one done yet bye


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