Another Newbie Mum

Status
Not open for further replies.

MeanMom

Well-Known Member
Relationship to Diabetes
Parent
Hi - my 11 year old daughter was dx in March this year. with an HbA1c of 16.7.😱
She first started loosing weight in the summer of 2008, but as we do not possess scales i did not know what she had weighed before so could not prove this to the doctor. First went to the doctor October 2008 and was told it was her age and not to worry. Unfortunately as she had never been a great drinker we looked upon her increased thirst as a good thing. Went back to the doctor in the spring of 2009 as she was still slowly loosing weight and had not grown since the October. Still told it was her age but to ' keep an eye on her' - :confused:
By the summer she had grown 2cm but had lost another kilo. All this time she was eating like a horse BTW. Went back to doctor in October of 2009 to be told she had grown so why was I worried? Broke down and begged them to do something as she felt so rotten all the time and the school was on back about her attendance. Doctor agreed to do a blood test, which came back with some slight Vitamin deficiency so they recommended multi vitamins. She did begin to feel a bit better but did not put on any weight or grow and continued to eat everything in sight and/or be really thirsty.
Just after Christmas she started complaining that she couldnt see the TV, so we were going to make an appointment with the optitian. Then my Dad was suddenly taken into hospital, very ill, and optitians were the last thing we were thinking off. My Dad died of pancreatic cancer on 26th February 2010
After the funeral i took K to the optitian, and it was the optitian who finally diagnosed her. We were referred back to our GP - who it turned out had not tested her for D when the previous blood tests were done (i assumed she had been tested then) Immediately sent to hospital and the rest as they say is history!
K has cateracts which i know is due to long term high blood sugar but of course no one will actually come out and say that but with an HbA1c of over 16 at dx she had to have been diabetic for at least three months - and I think it was closer to 18 months.
Day to day we are managing quite well and after feeling rotten for so long it is good to feel (mostly) well again. It is the long term problems that scare me, especially as my Dad died of pancreatic cancer, had type 2 diabeties and lost most of his sight. Everyone says it is a coincidence, but the more i find out about D the more i find out that there are no answers and who says there isnt a genetic link there somewhere?
Sorry for the long post - needed to get it of my chest 😱
 
Hi and a warm welcome to the forum carolyn firstly so sorry to hear about your father how traumatic for you as well as the diagnosis of your daughters diabetes, must of been the worse time in your life hun.I cant offer any advice as im a type 2 , but we do have some amazing parents on here with a great wealth of knowledge and the parent section on here is great to.

Welcome onboard

Steff
 
Hi Carolyn, welcome to the forum 🙂 It's a sad fact that some of the doctors we trust to do the right thing or recognise symptoms and do the appropriate testing sometimes fail in their duty. Thank goodness she got diagnosed eventually and is now getting the treatment she needs. Please feel free to ask any questions you may have, nothing is considered 'silly' and I'm sure many people here will try their best to help.
 
Welcome - any length of post is fine - write away!
 
Hello Carolyn.

I was sad to hear such a sorry tale, but at least your daughter is now getting the right treatment. Is she on insulin or some other medication?

The thing is, now that she is being treated, it is reasonable to assume that the long term implications of diabetes will be much reduced if not completely irradicated.

Andy 🙂
 
Hi Carolyn, welcome to the forum.
 
Hi Carolyn
Wow! What a long drawn out diagnosis! I am so sorry you had that awful experience and that your daughter has suffered as a result.
Hopefully a period of good and tight control for her before she gets to her puberty will help to abate any long term damage which might have been done. It sounds as if she had residual islet cells still fighting for a long time, thank goodness. Those little cells more than likely saved her life.
I have heard from several other parents who have had children they believe were displaying definite signs of Type 1 many years before the event which led to their diagnosis. I haven't experienced this myself as I either didn't notice other symptoms in my then 18 months old or then 8 year old sons or they only had a fast destruction of their islet cells; my youngest was misdiagnosed and went into full DKA coma with his brain swelling etc within a week of not getting the right treatment and was blue lighted to London, intubated etc etc and my eldest was diagnosed by us when we saw obvious signs and asked him to do a BG test.
Hopefully we are soon to introduce far better training for young doctors on Diabetes. At the moment they have the equivalent to 3 days on Diabetes in a medical degree. If this reflected the amount of D they actually had to deal with in their careers it would be more like 6 months worth of training!
You have had a very tough time and I am hoping you now have a supportive team who are helping you to get the very best care for your daughter. My two boys have insulin pumps - which has helped us immensly - and we now travel to a team we feel are on our wave length and support our efforts to keep our children healthy, happy and growing well.
Any help I can offer would be gladly given. If I could recommend the Ragnar Hannas book, Insulin-Dependent Diabetes in Children, Adolescents and Adults, it will give you a good grounding in all things Type 1 as you start on this new phase of your families and daughters life. Might I also suggest looking into the Children with Diabetes Uk support group, where you will find hundreds of parents using all regimes and happy to support and share their experience and time.
We are now 10 years in to Type 1, though you could say 15 years if I put the two boys end to end instead of over-lapping lol (in fact we just had Joe's diagnosis anniversary without noticing so it is now 16 years lol), and can say it will become second nature and less emotionally raw as time passes but it is never easy which is why the team around you all is so very very important (including school).
I wish you all the best and can safely say no question is too small or silly with a child with D and no moan or complaint is worth holding back on. Ask away and let out all the sadness, pain and frustration you feel as you need to keep yourself happy and healthy and able to motivate yourself for the long journey you are all on.
 
Thanks everyone x
 
Hi Carolyn

I'm glad you took my advice and joined here😉. I hope you will find it useful.
 
Status
Not open for further replies.
Back
Top