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Son with Down Syndrome newly diagnosed.

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
W

Wickwoo

New Member
Relationship to Diabetes
Parent of person with diabetes
Hello I am new to writing in forums. My son has Down Syndrome and has been diagnosed with Type 1 diabetes. Is anyone in a similar situation?
 
Hi and welcome

So sorry to hear about your son's diagnosis. It is hard enough learning to deal with Type 1 as an adult so my heart goes out to parents who must find it 100x more difficult and even more so in your situation. I can't recall anyone with a Down Syndrome child in the 2.5 years I have been here but there are plenty of parents who can offer support and tips and tricks to help with any specific difficulties you have.

How long has your son been diagnosed and which insulins is he on?
.... and probably more importantly...
How are you all coping?
It is massively overwhelming in the early days so do know that it takes time to learn all you need to know but it does get easier. Do you have any tech like Freestyle Libre sensors to help you check his levels and alarm if he is going high or low?

Let us know if there is anything you need support or advice with. I will tag some of our regular parents @Thebearcametoo and @Bronco Billy, who will no doubt be along in due course to welcome you.
 
Wickwoo said:
Hello I am new to writing in forums. My son has Down Syndrome and has been diagnosed with Type 1 diabetes. Is anyone in a similar situation?
Click to expand...

Welcome @Wickwoo 🙂 Sorry to hear that your son has been diagnosed with Type 1. Can I ask how old he is? I don’t remember anyone recently with Down Syndrome and Type 1, but that doesn’t mean there isn’t anyone. I presume you’ve already got some information from the Down Syndrome charity?

Even though we might not be able to help with your exact situation, we can still offer advice and support regarding the Type 1.

Whatever age your son is, there’s a great book about Type 1:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (despite its title, it’s good for all ages and is popular with adults here too).
 
Hi and welcome. Here to support you as well as give info.
 
rebrascora said:
Hi and welcome

So sorry to hear about your son's diagnosis. It is hard enough learning to deal with Type 1 as an adult so my heart goes out to parents who must find it 100x more difficult and even more so in your situation. I can't recall anyone with a Down Syndrome child in the 2.5 years I have been here but there are plenty of parents who can offer support and tips and tricks to help with any specific difficulties you have.

How long has your son been diagnosed and which insulins is he on?
.... and probably more importantly...
How are you all coping?
It is massively overwhelming in the early days so do know that it takes time to learn all you need to know but it does get easier. Do you have any tech like Freestyle Libre sensors to help you check his levels and alarm if he is going high or low?

Let us know if there is anything you need support or advice with. I will tag some of our regular parents @Thebearcametoo and @Bronco Billy, who will no doubt be along in due course to welcome you.
Click to expand...
Hello rebrascora and thank you for your reply

Our son was diagnosed at the end of September. He has been prescribed NovoRapid and Lantus. We use an Accu chek machine to monitor his blood glucose levels. He has coped well with the finger pricks and injections, considering he doesn't understand. He just knows he needs his checks and medicine before he can eat.

We are getting there as the diagnosis was a shock. We seem to be working around the diabetes at the moment rather than it working around us. He is going back to school next week so we are a bit apprehensive.

It is nice to know there are people happy to offer support and advice. ☺️
 
Inka said:
Welcome @Wickwoo 🙂 Sorry to hear that your son has been diagnosed with Type 1. Can I ask how old he is? I don’t remember anyone recently with Down Syndrome and Type 1, but that doesn’t mean there isn’t anyone. I presume you’ve already got some information from the Down Syndrome charity?

Even though we might not be able to help with your exact situation, we can still offer advice and support regarding the Type 1.

Whatever age your son is, there’s a great book about Type 1:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (despite its title, it’s good for all ages and is popular with adults here too).
Click to expand...
Hello Inka thank you for your reply

Our son is 10. I have a looked at the Down Syndrome Society website regarding diabetes but have not had a chance to contact any one yet. I wanted to check on this forum first.

I will check out the book you recommended. Thank you ☺️
 
Hi @Wickwoo, sorry to hear about the diagnosis. Do you kn
ow if the school staff have been trained by the DSN and if a care plan has been written?
 
Hi @Wickwoo and welcome to the forum 🙂

I know someone on another forum who cares for a brother with both Down Syndrome and type 1 diabetes. I'm not sure whether I can get in touch with him as he hasn't posted there for a while but I'll message him for you and see.
 
Hi @Wickwoo. My brother Myles has Down Syndrome and Type 1 diabetes. He will be 65 in February, and was first diagnosed at the age of 18, so he has lived with diabetes for most of his life. My mum was his primary carer until she had the first of a series of TIA strokes at the age of 84. I then took over as his primary carer, and looked after him for 15 years. He is now living with our sister and her partner. It's difficult looking after a diabetic with DS, and something for which you need a lot of support, which I didn't have for most of the time, as others in the family just didn't want to know. I think the biggest mistake that my mum made was not teaching him how to test his blood sugar levels, which made him totally dependent on others to keep him alive. I think he could also have been taught how to draw up his insulin and inject himself (under supervision initially), but this wasn't done. On many occasions I have literally saved his life when he went into a hypo. After a long campaign, he was finally passed for a Libre glucometer which can be strapped to his arm, but because of covid, we have been reluctant to bring him to the hospital to get him fitted with it. This will be a great help to him whenever he has it fitted because he will be able to check his blood sugar levels without the need for finger pricks. The problem with his particular type of diabetes is that his blood sugar levels can go down very rapidly, and he doesn't let anyone know until drastic action is required. I have sometimes had to inject him with glucose using a GlucoGen Hypokit (you should always keep one in the fridge) as he refuses oral glucose when his brain becomes foggy during a hypo. It will be too late for Myles, but I hope that over the course of your son's lifetime there will be major improvements in the treatment of diabetes. If you have any particular problem, please let me know and I will try to help you as best I can. It's a challenging road ahead, but with the right support, you can do it.
 
Bronco Billy said:
Hi @Wickwoo, sorry to hear about the diagnosis. Do you kn
ow if the school staff have been trained by the DSN and if a care plan has been written?
Click to expand...
Hello Bronco Billy

The school have been trained and a Health Care Plan has been written up. He went back to school today which I was very nervous about. He coped really well and had good contact with his school. small teething trouble using machine but nothing major. Thanks Vicky 🙂
 
Joe K said:
Hi @Wickwoo. My brother Myles has Down Syndrome and Type 1 diabetes. He will be 65 in February, and was first diagnosed at the age of 18, so he has lived with diabetes for most of his life. My mum was his primary carer until she had the first of a series of TIA strokes at the age of 84. I then took over as his primary carer, and looked after him for 15 years. He is now living with our sister and her partner. It's difficult looking after a diabetic with DS, and something for which you need a lot of support, which I didn't have for most of the time, as others in the family just didn't want to know. I think the biggest mistake that my mum made was not teaching him how to test his blood sugar levels, which made him totally dependent on others to keep him alive. I think he could also have been taught how to draw up his insulin and inject himself (under supervision initially), but this wasn't done. On many occasions I have literally saved his life when he went into a hypo. After a long campaign, he was finally passed for a Libre glucometer which can be strapped to his arm, but because of covid, we have been reluctant to bring him to the hospital to get him fitted with it. This will be a great help to him whenever he has it fitted because he will be able to check his blood sugar levels without the need for finger pricks. The problem with his particular type of diabetes is that his blood sugar levels can go down very rapidly, and he doesn't let anyone know until drastic action is required. I have sometimes had to inject him with glucose using a GlucoGen Hypokit (you should always keep one in the fridge) as he refuses oral glucose when his brain becomes foggy during a hypo. It will be too late for Myles, but I hope that over the course of your son's lifetime there will be major improvements in the treatment of diabetes. If you have any particular problem, please let me know and I will try to help you as best I can. It's a challenging road ahead, but with the right support, you can do it.
Click to expand...
Hello Joe
Thank you very much for taking the time to reply. It is so lovely your brother has caring family members to look after him. It sounds like it was very hard at times. This is all still very new to us, we are learning a lot quite quickly. My son has older brothers and sisters who have been supportive and I'm sure would take care of him in the future if needs be. The hypo's do seem bit scary but we have our emergency kit and injection in the fridge. The potential health problems related to diabetes are very worrying for us but we can only do our best to keep him safe. It is comforting to know I can speak to people have experienced what lies ahead for us.

Best wishes to you and your brother.

Vicky🙂
 
Hi Vicky,
Glad to be of help. I'm sure your son has a dietician who will give you good advice regarding his diet. Myles has also developed coeliac disease in later life. There is a strong link between diabetes and coeliac. You should ask his dietician about this. Myself can only take gluten free food. It is extremely difficult to get food that is both sugar-free and gluten-free. Ask the dietician if there is some way that your son can avoid coeliac disease (e.g. foods to avoid, etc). Myles takes gf porridge for breakfast. Porridge is a good food for stabilising blood sugar. Don't forget to wash your son's feet every day with a mild soap, and apply an emulsifying cream afterwards. It is very important for diabetics to look after their feet.
Take care,
Joe
 
Wickwoo said:
Hello Joe
Thank you very much for taking the time to reply. It is so lovely your brother has caring family members to look after him. It sounds like it was very hard at times. This is all still very new to us, we are learning a lot quite quickly. My son has older brothers and sisters who have been supportive and I'm sure would take care of him in the future if needs be. The hypo's do seem bit scary but we have our emergency kit and injection in the fridge. The potential health problems related to diabetes are very worrying for us but we can only do our best to keep him safe. It is comforting to know I can speak to people have experienced what lies ahead for us.

Best wishes to you and your brother.

Vicky🙂
Click to expand...
Wickwoo said:
Hello Joe
Thank you very much for taking the time to reply. It is so lovely your brother has caring family members to look after him. It sounds like it was very hard at times. This is all still very new to us, we are learning a lot quite quickly. My son has older brothers and sisters who have been supportive and I'm sure would take care of him in the future if needs be. The hypo's do seem bit scary but we have our emergency kit and injection in the fridge. The potential health problems related to diabetes are very worrying for us but we can only do our best to keep him safe. It is comforting to know I can speak to people have experienced what lies ahead for us.

Best wishes to you and your brother.

Vicky🙂
Click to expand...
Sorry that should read "Myles can only take gluten free food"
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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