7 year old ASD just diagnosed T1

[SAMMYP1603]

Hello all,

Please forgive me as my head is all over the place at the moment and it's 6am after another night in hospital with little sleep.

My 7 year old is currently undiagnosed autistic was exhibiting symptoms of diabetes. We weren't sure if increased drinking was due to anxiety or if something else was going on. GP takes a urine sample and somehow manages to get some blood from a finger prick test. Tells me we need to go to hospital ASAP. His urine is unusual and his blood sugar is high. My world completely turned upside down.

He came in with BS at 26, ketones high but thankfully not high enough to reach ketoacidosis yet so he was being flushed with saline.

My head is just all over the place trying to take in how to manage both his emotional needs and now his medical needs. I'm scared I'm going to screw up, make him sick, do something which can cause long lasting damage.

How did you all cope with a new diagnosis?

 

[NicoleC1971]

Not a parent but you have my sympathies ad does he given acute onset type 1 is rough and in your case involves some upset to his routine too. You must be feeling pretty shattered right now so I hope you've got some good friends/family to give you a hug?
All I can say that the 2 diagnosis aren't incompatible if you think of type1 as something which really benefits from a structured regime. Forgive my ignorance if I am making as assumption about your son's autistic behaviours here.
Is it possible that having the 2 issues might get his diagnosis of autism expedited just because his needs just got more complex?
So I know it is a huge curve ball and as a type 1 myself and mum , it isn't something I'd want my kids to develop, but on the plus side the technology now available can make it easier to handle so if you are the sort of person who copes by focussing on the practical side then have a look at insulin pumps and glucose sensors (Dexcom, FreeStyle Libre) which your circumstances may allow you access to.
Diabetes UK do have a Careline which might help you understand what to expect from the NHS in your area or just to have someone to vent to perhaps?
helpline number is 0345 123 2399. It is a dedicated diabetes helpline for all people with diabetes, their family or friends, and people who are worried ...
Best of luck and this is a big forum so I hope someone with actual recent experience will be on here soon to offer hope but big virtual hugs in the meantime...

 

[Sara_J]

Hi Sammy,

My 8Y son was diagnosed with TD1 on 6th Aug 2022. He is also ASD but undiagnosed, though hospital picked up on the "social impaired interaction" as it was states on the paper work.

Iv gone through all the emotions, why him, why now, I can't handle this, I don't want this additional resonsibility, how will we cope, will he understand, how can I sleep at night knowing he can go low, how will he cope in school, what does this mean for his future list is unless.

My son was pricked hourly and it was heart breaking, bruised fingers, little undisturbed sleep put me into a state.

As mentioned the technology now advanced and improving. We were put onto the Libre2 maybe because my sons fingers were so bad and its been a life changer. Hoping he will be eligible for the pump. My son can't tell if he is high or low and seems to be having alot of hypos 1H post meal times which we are keeping an eye one.

The team will give you apps to make it all easier, but if your son is anything like mind he has the same thing for breakfast, lunch and dinner which makes things abit easier.

Good luck

Iv emailed the school and hoping someone has TD1 at the school so they have some idea! Just to put my mind at rest.

 

[Jackson91]

Hi all, my experience with a nephew who is somewhat high functioning ASD and T1D also is that they do really well with it over time. He likes his routine and has set meals for each day of the week which made establishing his baseline levels quite easy. He is very involved with his treatment he like to make sure that his meals are balanced and the ingredients are weighed and he now operates his pump on his own ( checked by his parents of course). The only thing he struggles with are hypos, few and far between they may be but when they do happen it causes him to (excuse the term) freak out so you then have to calm hi down before you can treat the hypo.

So what I am saying is try not to worry to much as it is manageable.

mod edit to remove dosing advice

 

[MommaE]

Hello all,

Please forgive me as my head is all over the place at the moment and it's 6am after another night in hospital with little sleep.

My 7 year old is currently undiagnosed autistic was exhibiting symptoms of diabetes. We weren't sure if increased drinking was due to anxiety or if something else was going on. GP takes a urine sample and somehow manages to get some blood from a finger prick test. Tells me we need to go to hospital ASAP. His urine is unusual and his blood sugar is high. My world completely turned upside down.

He came in with BS at 26, ketones high but thankfully not high enough to reach ketoacidosis yet so he was being flushed with saline.

My head is just all over the place trying to take in how to manage both his emotional needs and now his medical needs. I'm scared I'm going to screw up, make him sick, do something which can cause long lasting damage.

How did you all cope with a new diagnosis?

Hello all,

Please forgive me as my head is all over the place at the moment and it's 6am after another night in hospital with little sleep.

My 7 year old is currently undiagnosed autistic was exhibiting symptoms of diabetes. We weren't sure if increased drinking was due to anxiety or if something else was going on. GP takes a urine sample and somehow manages to get some blood from a finger prick test. Tells me we need to go to hospital ASAP. His urine is unusual and his blood sugar is high. My world completely turned upside down.

He came in with BS at 26, ketones high but thankfully not high enough to reach ketoacidosis yet so he was being flushed with saline.

My head is just all over the place trying to take in how to manage both his emotional needs and now his medical needs. I'm scared I'm going to screw up, make him sick, do something which can cause long lasting damage.

How did you all cope with a new diagnosis?

If you have internet access at the hospital you might find useful advice or support from a Facebook group called Let Me Be 83. I have noticed that many, many of the contributors there are moms trying to do the best for their type 1 child. The group is I think, based in the US but seems to have members from all over. often the blood numbers they mention are referencing a different system to what you might be hearing at the hospital but there are charts online to help you convert them if needed. I just thought you might find support there from other moms while you are in your current situation.

 

[EllieM]

Just a reminder to all that the starter of this thread hasn't been back since their first and only post in August 2022 so though your posts may be helpful to other posters in a similar postion I would not count on them being read by @SAMMYP1603. (SAMMYP1603 , if you do read this, I hope things are easier for you now.)