Diabetes type 1

Hello

Just joined here. i was just wondering wether there is any parent out there with an autistic child that also has type 1 diabetes like my daughter. She was diagnosed last may and totally out of the blue. would be nice to share ideas or just to know there is some else who understands

Thank you

  • pretty old discussion

    But Welcome to this forum Slight smile

  • [spam removed by moderator]

  • my daughter aged 20 died this year.  She had t1 diabetes diagnosed in 2011 and A1ATD diagnosed in 2013.  She was obsessive about her  illnesses. Her father is an undiagnosed Aspergic.  I am absolutely convinced about the link between A1ATD, autoimmune disease and autism.  There is a genetic deficiency which causes autoimmune disease, of which aspergers and autism is part.  When will the government wake upto this.  The NHS treats everything as a separate issue rather than deals with the whole picture.  What a **** up it all is

  • Hi

    I noticed that your post is a few years old now but I would be very interested to see how things have panned out with your young man. Did he get to grips with his blood sugar readings In the end? If not there is a new device on the market called the 'libre patch'. It's a patch that continuously reads the blood sugars then you can scan it for the blood sugar readings as and when you need. Perfect if you don't like pricking yourself. 

  • My son is 23 with late diagnoses of ASD at age 19. He was diagnosed with T1 diabetes a year ago and we are struggling.

    I am always looking for someone in a similar situation to mine  in the hope that i might find an answer to my sons predicament.  Since the initial diagnoses die to his anxiety my son has struggled to take his insulin. Due to his anxiety levels and lack of insight the hospital started him on a twice  a day insulin regime with nurses visiting twice daily.  To cut a very long story short due to his anxiety and OCD he refused the nurses and has now stopped taking his insulin. He now waits until he goes into a state of ketoacidosis before injecting one dose of long acting insulin. Basically he only takes it when he feels unwell. His blood sugars are always up in the late 20s, He is 6ft 1 and currently weighing in at 8.5 stone. He is under safeguarding, social services and has a support worker but refuses to engage with the services or  receive treatment for his anxiety  I am at my whits end.  Any suggestions welcome.

  • Hello Squirrel.i am a mum to a wonderful daughter who is 7 diagnosed with Autism at 3 and type 1 diabetes at 5.what a journey it has being,an amazing wonder. I also live in Glasgow to be precise Govan. Daughter on injections as well because I don't think she will keep the pump on.

  • After 20 years of heart ache getting a firm diagnosis for my son, they finally agreed an autism referral after he refused life threatening treatment at a&e after a blood test shoed blood sugar levels of over 30.  (took three weeks for him to agree to blood test) He actually walked out of hospital after 24 hours once he had analysed the information and worked out how he could do things comfortably for him he agreed to go back.

    He didnt understand why all the fuss, he had felt the way he was for over a year. It was only when he could rarely stay awake he agreed to see gp.

    The problem I have now is although he's happy to count carbs and use the insulin pens himself as he knows this is medicinal.  He doesnt like the needle pricks to check his blood sugar. He doesn't get why he should have his fingers pricked draw blood just to get a reading, there is no logic to it, for him.

    Being as he's 22 and bigger than me I can't do it if he won't let me, we need 8 reading over 24 hours so the diabetic nurse can calculate the correct insulin dose.

    He also has a needle phobia.

    Any suggestions please.

  • i have read about people getting diabetes 1 after immunisation. and public is also well aware of autism development after the immunisation in children. i have got an autoimmune disease after probably the only 1 flu jab in my life, although doctors will probably never admit it. so, with reference to one post here: it is not about low immunity, it is about over-reactive immunity, which builds antibodies against our own tissues and try to destroy them as it recognises them as a pathogen. i regularly get eye inflammation, or both eyes, i also had spine problems due to inflammation... organs like pancreas do not hurt until it is too late and fully blown type 1 diabetes occurs, when it is too late to do anything about it to stop it. 

    there can be a link, or not in any of these combined cases. each of us is different and we are just a minor statistics in the overal benefitial immunisation process. we were just unlucky. other are eaten by a lion in the nature... life is life. one never knows how things will end. 

  • Hi Paul,

    Thanks for your comment. Just a reminder that one of the community rules you agreed to when you signed up to the forum was not to disclose any personal details, including email addresses. Please do not post your or your wife's email address. This is to protect your privacy. 

    Many thanks,

    Adél, NAS moderator 

  • Both my wife and myself are diagnosed autistics.  My wife is a type one diabetic.

    My wife has been using an insulin pump for a year now, and it has changed our lives.  Previously her type - 1 was so aggressive we kept Glucogen glucose syringes in our fridge.  The ambulance crews carry them.  My wife could literally keel over without warning.  I can spot a type one hypo at a distance.  I know the body language, the way ones mind goes..the lot. 

    My wife was overdosing on 0.5 relative units from a childs pen!  The smallest possible dose that can be injected from a 'stick pen'.  We discovered due to the insulin pump that she needed an average hit of 0.025.  We are both middle aged but we've kept ourselves very healthy.  Hence she did not need an 'ordinary' adult amount of insulin for daily, ordinary use.

    I would be glad to give anyone her email address?  If you have adhd syle autistic people, sugar rushes have to be dealt with in a fun way?  Off you go down that road!  It is hard to determine what is your inbuilt hyperactivity (relative to those slow minded, crawling snails that Neurotypicals are to us) and what is a product of the body.

    Bear in mind though, that hyper levels of sugar give you a headache and befuddle you.  Hypo's get you roaring drunk and on the floor.  Sounds to me like your children are just plain speedy?  The yo-yo states of physical being mean that once you are 'in the average blood-sugar zone', your children may been free and relieved and proceed to celebrate by running around, enjoying their own energies?

     

    I used to get that when I'd been sitting still for a while as a child (an amazing and perverse thing to do, and very boring) and loved to tear around.  Bear in mind also that what's natural for you guys is not so for us?  It can take a lot of getting used to, realizing that you may be trying to cessate and limit expressions of physical and mental joy.  Hyperactive is a relative term.  We are often made to fly, when Neurotypicals think that 'normal' and 'healthy' is to clip our wings, sedate us, and cultivate depression through making us inert?

    It is a fine line to tread, and only coming to know your autistic child can reward you with knowing what's good for them and what is just plain off the scale and driving you mad and best avoided.  I think its the nature of my kind that many times, parents cannot tell.  You need autistic children who can relate to themselves in a way few can.  So many of you just wont win with diabetes and autism, but as a rule I'd keep a back garden or a room clear of breakable and harmful objects, let them in and wait till they get bored flying around?  Or fall down.  As I said, both elements make for a scenario I would doubt it is able to cope with as completely as all you mums and dads want to?  Sorry.

     

    Thanks, Paul.

  • I'm so sorry you are going through all of this.  I don't know about diabetes, but I wanted to suggest you might also like to start a new thread as you might get more responses.

  • Not sure if this is still active, however I have just stumbled across it and thought I'd give it a try - esecially as the FB page is now a closed group.

    Hi there,

    I'm a proud dad of two. Aiden and Matthew

    Matthew (the youngest) was semi-like any normal child, although since birth had a problem with feeding, would scream all the time (not just a typical child - trust me) and he was very constipated, and would vomit alot. After months of battling the health professionals considered it was reflux - pipes were put inside him (poor soul) and it wasnt. A GP said on the offchance he may be lactose intollerant as I myself have some issues with milk and cream - fair enough...

    After changing milk it seemed much better - till 18 month and whilst I was at work he'd taken a turn, and was rushed into hospital with a very very high blood sugars. Apparently he'd gotten very thursty and was drinking bottle after bottle..  Anyway. He was diagnosed with Type 1.

    At about the same time we noticed some odd traits about AIden (our older child) odd wee things, like susceptable to some noises, biscuits had to be round, crisps couldnt have a crack in them - we thought he was just playing up. He was diagnosed with Asbergers in April -- although its only classed now as Autism, for our own reference (the family) we class him as having Asbergers.

    Our youngest has Always been rather odd - doing wierd and wonderful things.. As he's diabetic its been neigh-enough impossible to get his numbers stable. We do everything by the book and it has the exact opposite effect. So after a long and hard finger pointing battle the hospital have put him on the list for a 'pump' which is meant to solve all our problems.. bed wetting, his erratic blood results, his baby-like behaviour and constant moods. SO he's meant to be fitted in a few weeks. We would never have guessed anything was really wrong with our oldest - he would cover his ears and we thought it was an ear infection or something... he was diagnosed as having Asbergers though.

    AFter our eldest was diagnosed with Asbergers we noticed similar traits as our eldest as with our youngest - so he's in the middle of being assessed. He'll have a diagnoses by October - however we're already confidently reassured by numerous professionals that he will have a diagnosis of Autism.

    He has no long started school - and due to his Diabetes being so erratic he is only in a few hours a day, yes they are gradually increasing his time at the school, ut its not really fair on him.. but we can also see why.. THe hospital have sent someone to teach the school insulin training and pump therapy without taking Matthew into account. For example when he is hypo (as in less than 2) he can run a marathon. THis in't an individual case, he's always buzzing. THen the Glucagel is meant to shoot him back up again - we've been through 3 once and it brought him up .1 and then went down again and then up .1 again, then somehow after 3 he only rose to 5. Then other times he rises to 12 straight away. DOesnt really make much sense.. So the school witnessed this and theyre OF COURSE scared, so theyre taking a step back.. I can appreciate that.

    However. Why send a nurse to teach Insulin and Pump therapy without fore warning that everything they are teaching doesnt properly work in regards to Matthew and extra care must be take in regards to his care - rather than textbook teaching them to believe a simple injection of x solves the day?!?

    Next point. The Hospital have swore blindely that the 'pump' will solve our every problems. Now, we have been a bit causious of the pump and didnt really want to go with it, but as his health is at risk it's best... However, Can it really regulate the Bloods the way the claim it does - and the bed wetting - the Behaviours? Or is it going to be more hassel than its worth? I am not wanting him to be more distressed tha he needs be. THe stresses of all this have already drove me and his mum apart and we are nolonger a couple, however we're trying the best for our children.

    We have raised numerous points with the Hospital and have had no real reasoning.. So, if anyone has had an Autistic AND DIabetic Child, can you please get in touch. Does the pump help when they are that young (yes, maybe for typical children, but what about Autistic children who are more sensitive?) what about the fact that he is having a Hypo and is still running about, he never seems to get tired.. can that be due to the Autism side over-ruling the rest ? (as in, if he wants to play the narrow view he will play and his HYpo wont stop him?) and lastly, he seems to be in a world of his own, baby-time - like he hasnt, or doesnt want to grow older. He talks a bit odd to the side.. but .. well.. really the big question is, Does all this get any better?

  • Hi there Flowercat,

    Soooooo nice to hear someone has a wee understanding of a girl in this position. Eve  has been diabetic since she was 4....so six years......I inject Eve as she is unable to inject herself. We stay in Newton Mearns........just outside the Southside of Glasgow. Would love to chat to you further;-]x

     

  • I was really heartened to read your post, it really feels quite lonely not only to have a daughter with high functioning autism, but also diabetes, and whilst I wouldn't wish diabetes on anyone else, it is good to know that someone else is going through the same things. I particularly identify with the fact that your daughter is doing well academically at school, yet at home is a different person. I think Rosie's teachers would be quite shocked to see some of her performances at home! Because the school don't see any autistic behaviour, and it is not affecting her learning as such(yet), we have been told she will almost certainly won't qualify for a statement. I intend to press for  'school action' in September, as I am afraid her anxiety will limit her concentration. I have also had mornings where I have had to drag her clothes on to her to get her to school. She has quite a lot of anxieties surrounding school, to do with illness someone saying they feel sick sends her into internal turmoil all day. Thats what it is this year, last year it was lit candles (!) At home after school is the worst, she comes out and is fine, by the time we get to the car she has relaxed and let her anxieties she's had during the day out onto me and her sister. Of course she has to have an outlet but it can be v hard. Another source of conflict is snacks, when her bloods are high, and she can't have what she wants too eat after school. Not easy. Is your daughter on insulin injections or a pump? How long has she had diabetes for? Rosie was v excited to hear there was someone else just like her out there!!

  • Hi there,

    I have  a 10yr old daughter with type 1 diabetes and she is on the spectrum.....we are awaiting an official diagnosis, which we are to get in August. My daughter is extremely challenging....but she is a real Jekyll and Hyde character.....quiet at school....but soooo angry at home with constant meltdowns. I think she is going through the start of puberty and this is making everything worse. Academically she is bright, but every day is a struggle.......most days we have to hold her down to dress her for school....which is not good, but once at school nooo meltdowns. Does this sound familiar to anyone?

  • i have diabetes i have typ 2 because i dint have it as a kid i think that how it works.

  • Hi everyone  Ireally thought I was alone with this one, but im glad i've found this forum. My daughter is now 10 but was diagnosed with diabetes when she was 2 and half followed by the autism a year later. Cara uses an Insulin pump which at the moment i still do the majority of the care for her. Im just hoping one day that she will be able to be independent with it.  Ps will search for face book group really intrested thanks xx

  • HELLO ALL,

    We have a facebook group with 47 members- parents of type 1 /autistic children, adults living with autism and type 1......always happy to add more, please feel free to join. Type Autism and Type 1 Diabetes...follow the heart icon...that's us.....be well.

  • Hi there

    my daughter was 11 and a half when she was diagnosed with diabetes type 1.

    yes it was very hard at first and she still resents it now. i think diabetes and autism are linked with a low immune system.

    my daughter is a bit older and uderstands a bit more now and other times she doesnt and refuses to eat because she says her sense of smell has been enheightened greatly because of what she is taking. but nobody believes this and this is very frustrating.

    feel free to contact me here.

    i can sympathise and understand having someonelse who understands really does help.

     

  • My daughter is 7 years old. Within the last 3 months she has been diagnosed firstly with high functioning autism and more recently type 1 diabetes. It is difficult to describe how we are all feeling at the moment! As both conditions have been diagnosed so close together I was wondering if there is a link between the two. I was really interested to read Jewels post, particularly as her child is a girl. How old is your daughter? How has she come to terms with her diabetes? My daughter is really struggling at the moment, and is having meltdowns every other day. These have gotten significantly worse since her diabetes diagnosis. Getting her to school in the mornings is nigh on impossible!

    Any advice anyone? Please tell me I'm not the only one experiencing this?!?