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Newly diagnosed daughter

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rebecca904

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Hi. My name is Rebecca and I recently found out my 3 year old daughter has Type 1 Diabetes. It was a huge shock for us all (and still is) and I wanted to find parents in the same situation to talk to.

I'll tell you our story and then hopefully some of you may reply with tips, advice or maybe even your own story as parents in the same boat.

Two months ago my daughter, my fiance and I all caught an awful flu virus and barking cough. Within a few days my fiance and I were back to our normal selves, but our 3 year old daughter just couldn't seem to shift this terrible bug! I noticed she had lost weight which really concerned me so I took her to the doctors, only to be told the weight loss would be due to the virus and to continue giving calpol and plenty of fluids. I also explained the constant thirst she was having, tiredness, waking up to go to the toilet, all of which the doctor said was part of the virus. Looking back I feel guilty for not picking up on the signs myself, although I was no Diabetes expert, infact I knew very little about it, but the fact that the doctor didn't even pick up the signs is rather worrying.
A few days later, after seeing no improvement, I decided to take her to the out of hours clinic. After a long wait the nurse called us into her room. Her first words to me were "If she's going to cry like this I can't look at her". I was completely shocked by her tone and darn right rudeness. Yes my little girl was crying and upset but wouldn't you be if you were 3 years old, hyperglycemic and waiting in a waiting room for an hour? (as you can tell that really upset me). Anyway to cut a long story short the out of hours nurse was no help and gave the same advice as the doctor; plenty of fluids and calpol!
The next day I was determined to get answers and believed she must of had some sort of infection that hadn't been picked up on, so I rang the doctors again and pretty much begged them to come to the house, so they could see how poorly she was. I got her to wee on a potty so he could test the urine for infection when he arrived. Obviously when he tested the urine it was extremely high in sugar and that's when he told us he believed she may be Diabetic. My fiance and I refused to believe it and were sure there was another explanation for it. I guess we were in denial. So, after a further 3 hours in the Children's A&E it was confirmed it was Type 1 Diabetes, and of course I broke down. We were completely deverstated.
As the days went by and various nurses and doctors spoke to us we began to look on the bright side and learn all about Diabetes and that as parents our job was to be positive and make things as normal as possible. By the end of the week we were dying to get home and get back into our normal day to day routine. I'm so proud of our daughter because she has been so brave and even though she was scared of the injections and glucose tests at first (what kid isn't), she soon got use to it and it's now considered completely normal to her. I feel quite guilty that she's coping so well and I'm worrying constantly. As parents aren't we suppose to be the strong ones? I know it's still very early days but as I say, I worry a lot.

I would love to hear from parents in the same situtation as us. I worry a lot about when she starts school. She's at Nursery at the moment and all has been fine but she's only there for 2 hours a day.

Thank you for taking the time to read our story.

Rebecca
 
Well done on not giving up and finally getting a diagnosis
Sounds like your little girl is doing amazing full credit to you both
Am an adult diabetic so not going going through what you are but I just wanted to wish you all well
Good luck :-)


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Hi Rebecca. I'm sorry that your here. I relate to the devastation of T1 diagnosis. My daughter was diagnosed in Dec aged 6. It is shocking how the medical profession don't pick up on the signs. You'll find as you read more its all too common. We were almost told to go home at A&E but I knew something was wrong & made a fuss. You are not alone, there are lots of parents going through the same thing. You may find there is a local support group near you- where are you based? Certainly I read so much upon diagnosis, but it's never enough. Keep away from all the negative things.... It's textbook.... and things have moved a lot in the T1 field over the last few years and I'm confident it will improve more. Kids are amazingly resilient and she will get used to the routine, though it will obsess you as parents. I spend much of my spare time reading through forums as I learn so much more and can relate to problems. Sharing problems & asking questions is therapeutic. My one advice - everyday is a new day. Tracy x


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Hi Rebecca

What an awful thing for you both to go through. It must of been scary for you and very upsetting.

My granddaughter was diagnosed with type 1 at 2 1/2, I too blamed myself for not picking it up sooner, I was so upset and devastated and seeing her so critically ill in the HDU broke my heart. Similar story with my GD and being sent away from the hospital with a diagnosis of possible virus, during the night she became so ill, she had to be taken to the hospital straight away.

Well done though for not giving up, because you know your child very well and if some things not right, parents just know. MY GD took to diabetes straight away, no big worries or concerns, but she young and kids just get on with it, they are brave little souls :angel:

Good luck with everything, your daughter sounds wonderful.

With best wishes RRB
 
Hi Rebecca

My 10 year old daughter was diagnosed type 1 on wednesday evening, luckily i knew the signs as i am also a type 1 diabetic and have been for 30 years, but it was still a shock to us as well. My daughter was born with only 1 kidney and this also was my biggest concern when she was diagnosed but diabetic nusres and doctors have said it will not cause any problems. She started to drink alot and i decided to do a blood glucose test with my old meter and it came up HIGH so got on the phone to NHS and doctor immediatley called an ambalance. I'm glad your daughter is feeling better, i bet it must have been really scary for you both it was scary for me and my husband and we know about type 1 but when its your child its different feeling.

tracey167
 
My 3 year old daughter diagnosed in March with type 1, we seen a consultant about another issue with her and happend to mention about her constant thirst, done a urine sample phoned me that afternoon to ask to go to hospital following morning for more tests and was told within 30minutes she had diabetes. I cant praise the doctors and nurses enough they have been extremely helpful and the nurse constantly keeps in touch to make sure all is ok. However as a parent looking after a child so young with diabetes I do constantly worry if she has a hypo or a high reading I feel guilty, I tell myself ive done something wrong, it constantly plays on my mind about complications if its not under control and I too worry about school as I am trusting someone else to deal with her diabetes and It dosent sit easy with me. I hope one day i will learn to relax, as for my daughter she has been great injections dont phase her and she is even learning she cant have certain things a certain times so children to adapt much better than adults. :D
 
My son 8 year son has been diagnosed with T1D a month ago,
It was devastating for me and my husband as no one in our close family haven't got it, ... I am still going to school to inject his insulin as the teachers and first aiders havent been trained yet,... I am scared too, thinking what did i do wrong, what could have I done and what is going to happen to him in the future,... When i tell people how worried I am they seem to not understand what type 1 diabetes is and just hate when they say he will be aright, but as mums we need to stay strong and di the maximum for our kid, I hope everything goes well for you both, I know how you feel xxx


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Hi my little girl was diagnosed just over a year ago aged 2 1/2 a year on and were doing great, just normal life to her . Very accepting, nursery fully trained and now pre school. Life was scary at the beginning, but our journey so far has been one of excellent support and a very can do normal attitude. Xx best eishes
 
Dear Rebdcca,
After reading about u r daughter, I feel its similar to what we had gone through when my daughter was diagonised with T1D. Its now almost a year when my daughter was diagonised with T1D. We had to admit her. To hospital at age of 2.5 yrs as she suffered with diabetic keto acidosis(DKA). Before she had DKA we visited pediatrician complaning about her frequent urination and weting the bed during sleep from 6-7 days. He told to analyze urine. It showed +++sugar in urine. We went to doctor and he suggested some medicind which i dont remember and told not to worry and comeback after 1 week. But 2 days later we again analyzed urine and it showed same result. Thd doc again told that wait for some days and then check the blood. We were suspecting some thing is wrong as she had stopped her activities from 6-7 days. At that time we didnt had much knowledge about diabetes, particularly T1D. Also our bathroom use to smell sweet andsonewhat different after my daughter use to go for urination. But after 1day she got bedridden and then i called another pediatrician in another city who happened to be our distant relative. He suggested to go to hospital and check for blood glucose. We went to hospital next morning and her bg was 487 and she was severly dehydrated.she was immediately moved to ICU was started with insulin drip and other things to normalize her body fluid salts. It was really a nightmare for us. She re overed after 4-5 days. She was then shifted to subcute insulin through injections.
We still wonder what must have caused her T1D. We now always worry about her hypos and hyper. She attend nursery school for 3 hrs. I dont know how its going to affect her grasping power and studies.
Hoping that some cure will come for this one day.
 
Hi Rebecca
So sorry to here your news, but your story is mirror image to our daughters diagnosis last year. She was just generally poorly for a few days, but for 3 weeks prior she had started to bed wet ( she was 5 had had never done this previously). Took her to Gp he had idea that it maybe diabetes but instead of doing a straight forward finger prick test or urine test he decided to send us to local hospital for blood test, who didn't do pediatric blood tests and we had appointment for the following week for a test. In the meantime our daughter went into DKA and was hospitalised and the consultant told us that we had got her their just in time. So we then went through all the feelings you must be having now, why us? Was there anything we could have done? Subsequently 18 months on she is a lively 7 year old just about to start pump therapy and although this horrible condition seems so unfair it has opened up our world to whole new world of wonderful people and knowledge that I would never have had experienced otherwise. My little one copes very well at school and her TA assists her all day. The help is available out there. Good luck and and wishing you and yours all the best for the future.
 
My daughter was 5 when diagnosed. It was extremely difficult to begin with, I'm sure you know. However, she is nearly 11 now, is on an insulin pump and does everything her friends do. T1 doesn't stop her doing anything! X
 
Hi Rebecca
So sorry to hear about your daughter. My 15 yo daughter was dx in June following suspected glandular fever - she had a really painful throat for a couple of weeks and was incredibly tired, then the bedwetting started (I hasten to add she has a history of that) and then I noticed the sudden weight loss - she was overweight anyway and suddenly her school trousers were very loose. The weight loss was what really set the alarm bells ringing for me. Once her blood tests were back there was no hurry on my GPs part - type 2, he said, as she's overweight. 24 hours later she was in hospital with DKA. She has an ASD, dyspraxia and MLD too. We started carb counting straight away - very difficult for her. But I have to say she's been brilliant. Being autistic she's been told what to do and just does it. We've had the anger and tantrums about it - and this is a healthy sign of gradual acceptance imo. There's been issues at school with bullying - "You got diabetes because you're fat" kind of thing. Diabetic team have been great, staff at school have been great. The past couple of weeks she's been doing a powerpoint presentation on diabetes for all the forms in year 11 and has raised £75 for JDRF from teachers & pupils - we're doing the London Bridges Walk to Cure Diabetes on Sunday. We're now in competition because I'm running 10 miles for Diabetes UK in October and she wants to get more sponsorship than me lol.
I've cried. Lots. To have t1 on top of everything else seems so unfair. But I've sort of seen it as a blessing - she was heading to be a 20stone 20 year old and there was nothing I could do about it. Now we go to the gym and she's slowly shedding the pounds and her fitness has improved no end because I've been very blunt - death by 30 if she didn't do something about keeping her heart healthy. Being a teen that bluntness without diabetes just had the "yeah, whatever" response.

Someone on this forum pointed out a Facebook group to me....can't remember who it was, but thank you. I'll share again - Diabetic Mums - https://www.facebook.com/groups/158377704201794/
There's also one for Parents of type 1 Teens for those who might be interested https://www.facebook.com/groups/228837803846726/
Both are closed groups so you have to ask to join. They're run by the same mum - and her daughter runs a closed group for teenagers.

And Rebecca, and any other parents of newly diagnosed children I found in the first couple of weeks, when you're bombarded with so much information, that this was the best thing I read. It's clear and simple, with lots of scenarios. https://shop.diabetes.org.uk/store/...child-and-diabetes-what-you-need-to-know.aspx
And, Diabetes UK ship quickly!

So, no doubt your head is almost exploding with shock and information overload - it does get easier - but you're not alone and people here have a wealth of advice and experience to share :-)
 
hello there, my name is Charlotte and my daughter was also 3 when she was diagnosed with type 1. unfortunately she was severly poorley by the time she was rushed too hospital, comatosed. the dotors were useless aswell. I also felt guilty and stil do 13 years on, I feel I should have known, she was wetting the bed, crying for drinks and losing weight. I its like a bereavement, your healthy child is gone and you have too learn too live each day as it comes as no two days are the same, things have to be planned with military precision, no more spontanaetity. when i brouht her home fro the hospital on december 7th 2000 i gave her a bath and she had a hypo in the bathroom, no one had prepeared me for this, i was shocked, cried for most of the time. I know exactly what you are going through, its horrible to see your child ill but when thier ill its different from kids without diabetes, insulin, fluids ect.. My daughter is 16 now and it gets worse through the teen years, they go out, want freedom i couldnt handle this and still cant. If you need to chat Im here as none of my freinds understand, they say ooh she wil grow out of it, no. they dont. even at the clinic I feel that they dont understand, let her grow up they tell me but she is forgetful and I have had too take her blood monitor kit too her on more than one occasion. Chin up though, you sound like a great mam and reading your letter actualy made me cry, brought back so many memories. hope too hear from you soon, any questions just ask xx :D
 
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