Scared out of my mind ... any advice for a newbie mum x

[Estrellas]

My daughter is 13. In september of 2011 she weighed 50kgs she is 5'2 tall . She has dropped in weight to 47kgs 7 stone 3 she is losing her hair thirsty peeing during the night , she has good appetite. I had gestational diabetes with her sister who is 9, my father has type 2 but is now on insulin.

I took her for some blood tests for 78 in total including blood, hormones, plasmas, organs everything inc a urine test ... which was really traumatic for her and the results all came back negative apart from high blood sugar and acetone in her urine , her kidneys and urine is clear of proteins and sugars. I have been testing her at home and the scale is very high in the 20's and off the scale of the machine. her lowest count has been 16 which is us 297mg . I went back to the paediatrician today and she referred me to an endocronologist who took one look at the results and then at her and said she has type 1 and needs insulin now . I refused and said I want to try to get it down with diet and tablets he has given me until Monday 2nd april to get it down or she will be going on insulin.

He has prescribed me one Januvia tablet in the morning and half a metaformin at breakfast and half at dinner. I have researched januvia and it says it is not suitable for type 1 .... Is she type 1 or type 2 ? She has had no real build up apart from the past 2 months where I have noticed her mood swings and hair loss and her weight, which I put down to her hormones and age. She has very irregular periods also. I dont know what to do . I have to go back on Monday for a specialist diabetic doctor to assess this. Surely should she have had an abdominal scan on her pancreas to assess her insulin levels before they immediately put her on insulin? I know I can control her levels with diet and tablet as my father did this for 10 years before having to go onto insulin .... Any help here please as I am in bits at the moment ... I am due to start her on the tablets tomorrow morning +1 gmt time x

Thank you in advance of any help asap xxxx

 

[Estrellas]

Just to add her HbA1c is 13.8%

 

[pianoman]

If she has Type 1, which is likely given her age and weight, then she will need insulin urgently. Type 1 cannot be controlled with diet and pills alone.

 

[xyzzy]

No one can diagnose for you and your daughter but her age, losing weight, having high blood sugars and ketones (acetone) in her urine ARE the classic signs of Type 1 diabetes. If your daughter has type 1 she WILL need to go on insulin as her body will be producing none. No amount of diet or tablets will change this. Without insulin she will rapidly become very unwell. Januvia is a drug that attempts to block the uptake up of glucose by the blood and it may help her blood sugar levels temporarily but not by much if at all. I suspect the doctor prescribed it in desperation of you refusing insulin. Even if it did help then as Type 1 she still isn't producing insulin which she needs regardless of blood sugar levels or she will become very unwell very quickly.

I know this must be a shock to you but even though I am a Type 2 diabetic I have a Type 1 son who was likewise diagnosed in his teens. Nowadays many, many years on he leads a healthy lifestyle, is normal weight, has a good job, and children of his own. It is not such a big thing as maybe you are thinking it is. It is more important for you to get your daughter the treatment she deserves as soon as possible. I agree with your doctor 100%.

If you are still unsure you can ask your doctor to perform a c-peptide test as that will confirm a Type 1 diagnosis. However that may take some time and in the meantime I would suggest you follow the doctors instructions and start her on insulin. In the unlikely event she is not Type 1 then she can always stop.

The normal HBA1c of a non diabetic is in the 4's so you can see your daughter is very unwell at the moment.

 

[Estrellas]

Thank you for your replies ...

I thought once you were on insulin that was it you had to stay on it for the rest of your life?

We moved to spain 8 years ago and its times like this when something goes wrong you want to be back "home" ! x

 

[Grazer]

Going on insulin doesn't mean she's on it for life if she doesn't need it. If she's type 1, she will need insulin for life. I agree 100% that you should let her start on insulin, and if she ISN'T type 1 when tests come back, she could come off the insulin

 

[xyzzy]

Estrellas yes if she goes on insulin because she is Type 1 she will be on it for the rest of her life, my son is but still leads a full and healthy lifestyle. Sorry to be really blunt the point is he's alive...

To make things even clearer. In a Type 2 diabetic the pancreas is still normally working so the person does produce insulin in fact the pancreas can be producing loads. At diagnosis a Type 2's normal main problem is one of insulin resistance. They may be producing loads of insulin but its just being resisted. Because of the resistance blood sugar levels will rise in the same way as a Type 1 who produces no insulin. However a Type 2 can control by diet because by reducing their carbohydrate intake means their poor insulin response can cope. In a Type 1 it makes no difference as they produce no insulin so even the slightest amount of food will raise their sugars dangerously. This is why they must go on insulin. At the time they are diagnosed Type 2's are normally middle aged, overweight (brought on both by insulin resistance and over eating) and importantly rarely show ketones (acetone) in their urine test. Likewise because of insulin resistance hardly any Type 2's show weight loss prior to things going wrong.

 

[Estrellas]

Oh god she really is type 1 isn't she ? From everything I'm reading and your advice I can see it all points to it ... I was praying that it was type 2 ... I was seeing how my dad coped with just tablets and diet and he is super strict and we have been copying his diet and the levels are not improving ... And from your comment above you made it so clear about the differences between the two types .... I just didn't understand fully !

Now I have to find a way of telling her that she will have to inject ... When I promised her I wouldn't let them put her on it !

Thank you so much this is a fantastic forum and members ... I'm finding it hard to see what I'm typing as im sobbing like a baby I'm just so upset that this is happening to my girl .. Xxx

 

[xyzzy]

Good luck Estrellas keep coming back and let us all know how you are getting on. You'll find a special section of the forum for parents and children with loads of support from well informed people in the same position as you. Take care now and hope you get things sorted really soon.

 

[Pneu]

Estrellas..

Firstly let me reassure you (and your daughter) that injecting is not all that bad! Insulin injection are made into fat and with the small needles these days most people don't even feel them.. an insulin injection is nothing like a vaccination that is made with a much larger needle into muscle.

I was diagnosed in my late teens and frankly I was pretty irritated with it all as well... but you come to accept it.. diabetes is a massive change at first but then it just becomes part of your day to day routine.. Your daughter is going to be upset that's a given but that will pass and as a family you will learn to cope.

There are many parents of diabetic children on this forum and diabetic teenagers that are a great comfort to each other.. please don't be shy in asking questions or sharing your feelings... after all we are all diabetic or family of diabetics here we all have similar experiences / questions / fears at the start!

 

[EliiAlii118]

Don't worry! I'm 13 and I was 11 when I was diagnosed, her health will only get worse if you keep her on the pills and the strict diet. Once your on injections your bloodsugar starts to stabilise and you can eat pretty normal just not so much of the sugary stuff. You just have to support her but let her be independant too, she needs to learn how to cope and controll it on her own. 1 thing just keep an eye on her school work and friendships its very easy especially at this age to feel different and isolated, I used to have counselling through my school and that really helps. Eventually she may even be offered a pump like me, its great and it gives you so much more freedom!!!! hope it all goes well!

 

[honey bee]

Hi there - Honey bee here. Please don't be scared although it is a perfectly normal reaction. Your daughter will feel so much better on the insulin. She will go back to her normal self and will learn so much more about her body than any doctor could tell her. Insulin gives more freedom with food than diet alone, although you still have to be careful what you eat. I know she is a teenager, but its surprising how quickly a youngster can adjust to a new and different lifestyle. Once she is in control of her diabetes, you will feel so much more relaxed. At the moment the diabetes has control of her. Please do try the insulin as doc. said. You will be amazed and relieved that she is better. Hang in there. Loads of love to your daughter.