Need some advice

[Rac123]

Good evening all firstly my grandson was diagnosed T1d 5 weeks when he was told by Gp who had test results back to go urgently to hospital he was put on insulin And when discharged he went to diabete clinic and we was given a antibodie test and C-peptide well today my daughter called to speak dn and in the conversation my daughter asked if his antibodie test back to be told they can’t see it on system and to call again next week but they have said today there nothing on system he had the test so if gp and dn don’t know we had letter confirming the tests but I don’t think they have had anyone got advice how we find out of has or not please tia

 

[rebrascora]

I can't remember which of those 2 tests it is but one takes about 6 weeks for the results to come back and usually the 2 results need to be looked at together to form an opinion on diagnosis as the results of the individual tests can be inconclusive. It is also best for a consultant rather than a GP or nurse to assess the results because they are not always clear cut and consultants have far more experience of these things to make a judgement and diagnosis. Sometimes if the tests are done by the hospital, they don't show up on the GP system until the consultant writes to the GP to advise them of results/diagnosis and treatment plan.

How is your grandson managing in the meantime? Presumably they have already started him on insulin? If so, is he able to inject himself and do the necessary finger pricks. How is he coping emotionally with the diagnosis? It can be a lot to take in.

 

[trophywench]

Sympathies.
Firstly let me try and reassure you that whatever those test results are, the hospital diabetes team normally know exactly how to deal with them and will be able to explain them to whoever has the day to day responsibility of caring for your grandson and his health - if he isn't a kiddie, but an older teenager or adult, then they'll explain to him.
Next some of the 'further tests' have to be sent away, not just done in the local pathology lab - some hospitals are able to do them and some aren't. Especially if they do have to be sent away, this always takes longer, and in any case these tests usually take weeks rather than hours or days. The results are very unlikely to change his diagnosis of T1 - but could well give the hospital more info on what doses and/or timing of doses, of insulin, he'd do well with - and perhaps other finer details.
It's rare to get any medical tests direct to the patient, always normally delivered by a medical professional equipped by knowledge and training, to give information and answer any questions the patient may wish to ask.

 

[Rac123]

I can't remember which of those 2 tests it is but one takes about 6 weeks for the results to come back and usually the 2 results need to be looked at together to form an opinion on diagnosis as the results of the individual tests can be inconclusive. It is also best for a consultant rather than a GP or nurse to assess the results because they are not always clear cut and consultants have far more experience of these things to make a judgement and diagnosis. Sometimes if the tests are done by the hospital, they don't show up on the GP system until the consultant writes to the GP to advise them of results/diagnosis and treatment plan.

How is your grandson managing in the meantime? Presumably they have already started him on insulin? If so, is he able to inject himself and do the necessary finger pricks. How is he coping emotionally with the diagnosis? It can be a lot to take

 

[Rac123]

My daughter said the dn spoke to someone(consultant) and then said they haven’t got results on system so they saying he might not could of has when she has a letter confirming test so we worried they didn’t do and my grandson doing great he has autism too and adhd but he so chilled and he coping very he started form day one in hospital so insulin injection him and he got Libre 2 his mom and dad are do calorie count on every meal he has a cheat day other day and his level went up but they came down on own she been told reduce his morning/night insulin he been on 500mg metafram and to increase next week he it was diabetic team she spoke to and they can’t find in his notes him having the tests but the letter states he having test and an said they should of been back by now but the insure whether he has or not so we insure how to find out because an and consultant don’t knoq

 

[Rac123]

Hi my daughter spoke to dn at hospital who went and spoke to consultation I assume and she said they should of been back results for test by now and they insure and if they insure who can’t we get in touch with to find out my grandson ha been amazing he started on insulin Injecting himself and had done lol time I think he had the odd bad but not to much he taken to it so well he calorie counts and been on metoforam but the letter from consultant at diabetic clinic wanted this test has she said she in dilemma if 1/2 diabetes and we need the antibodies just to rule out I do think he DT1 but we got find out about test results somebody must know

 

[rebrascora]

You must be so proud of him doing his own injections etc. It is a lot for a youngster to cope with. It may be that the test has been delayed (I know it took 6 or 7 weeks for mine to come back) or perhaps there has been some misunderstanding about which tests needed to be done. If necessary, it can be repeated, but the important thing is to learn to manage his levels on a day by day basis and try to get them as stable as possible.
It is great that he has the Libre 2. I imagine he will take all the tech stuff in his stride whereas us dinosaurs have to crank the cogs in our brains into gear to try to get our heads around it all. It is a fantastic bit of kit though and must be real peace of mind for your daughter, particularly at night.
Hopefully the test results will come through next week.

 

[Rac123]

You must be so proud of him doing his own injections etc. It is a lot for a youngster to cope with. It may be that the test has been delayed (I know it took 6 or 7 weeks for mine to come back) or perhaps there has been some misunderstanding about which tests needed to be done. If necessary, it can be repeated, but the important thing is to learn to manage his levels on a day by day basis and try to get them as stable as possible.
It is great that he has the Libre 2. I imagine he will take all the tech stuff in his stride whereas us dinosaurs have to crank the cogs in our brains into gear to try to get our heads around it all. It is a fantastic bit of kit though and must be real peace of mind for your daughter, particularly at night.
Hopefully the test results will come through next week.

His mom Nd dad have been so strong it broke our hearts and my daughter it crumbled her and I’m so proud of them all how they coping with this it me who finding hard I don’t understand calorie control he has all Mel’s and of have a snacked weighed but I think my head fog and I can’t seem to take things in my grandson my world but so far so good just hope they can find result because that why we went appoit for these 2 test and nobody from diabetic clinic can say thwthwe tha have done them thankyou for replying take car xx

 

[Rac123]

I can't remember which of those 2 tests it is but one takes about 6 weeks for the results to come back and usually the 2 results need to be looked at together to form an opinion on diagnosis as the results of the individual tests can be inconclusive. It is also best for a consultant rather than a GP or nurse to assess the results because they are not always clear cut and consultants have far more experience of these things to make a judgement and diagnosis. Sometimes if the tests are done by the hospital, they don't show up on the GP system until the consultant writes to the GP to advise them of results/diagnosis and treatment plan.

How is your grandson managing in the meantime? Presumably they have already started him on insulin? If so, is he able to inject himself and do the necessary finger pricks. How is he coping emotionally with the diagnosis? It can be a lot to take in.

He does inject himself from day one and has done since he doing well his foods have change and he calori counting and weighed food and he ok with it he has. Libre 2 but he also ok thing finger pricking do I think he like injection no he suffers with autism and he so clever so he has come up against struggle and he doing ok my daughter and his dad are brilliant with him has he can’t cook so they do but hospital can not dine rests or request for these particular twat but they mad appointment at hospital for these to be done so if they can’t find I do t know who we can talk to to see if they have or haven’t thankyou for reply hope your ok

 

[Rac123]

You must be so proud of him doing his own injections etc. It is a lot for a youngster to cope with. It may be that the test has been delayed (I know it took 6 or 7 weeks for mine to come back) or perhaps there has been some misunderstanding about which tests needed to be done. If necessary, it can be repeated, but the important thing is to learn to manage his levels on a day by day basis and try to get them as stable as possible.
It is great that he has the Libre 2. I imagine he will take all the tech stuff in his stride whereas us dinosaurs have to crank the cogs in our brains into gear to try to get our heads around it all. It is a fantastic bit of kit though and must be real peace of mind for your daughter, particularly at night.
Hopefully the test results will come through next week.

I’m so proud of him and his mom and dad they truly amazing my daughter she has good and bad days but she sound brighter today but just puzzled has they said they was doing test and when called today dn said she speak to consultant I think and came back in phone nd said other bloods back but not those 2test and can’t see in system they were and the test result should of been back so I think they didn’t do even though that what appointment is for but I will call hospital tomorrow and explain what my daughter said and see if they can throw some light on this thankyou for Davis x

 

[Rac123]

Thankyou all for advice has I’m unsure whether I replied to you all individually Fairly new to all this take care all xx

 

[everydayupsanddowns]

Thankyou all for advice has I’m unsure whether I replied to you all individually Fairly new to all this take care all xx

Don’t worry about replying individually @Rac123 - members generally read all the messages in a thread, so will get the information you post without you having to type it twice 🙂