Parents - Newly Diagonosed 1yr 10mth Boy

[MumAndDadPinkerton]

Hi All,

Our little boy was just diagnosed with type 1 diabetes and we really want to get as much good and practical information as possible so we can support him during these initial difficult stages. We currently live oversea's due to my work and so although the health care and doctors have been great when we first realised something was seriously wrong, we feel we are not getting enough information. I feel they are happy just to control it and sort of keep his head above water but we need detailed info on insulin, giving shots, meals, schedules, glueclose levels. We need to be there for him. Its frustrating and we are heartbroken for our little champion.

It's been 4 days since he was diagnosed and he spent two days in intensive care due to dydration, very high gluclose and acetone levels. He was very weak and couldn't even move his head which has caused blisters on one of ears. We can't help feel we should've realised sooner that something was wrong. How many of us have heard about diabetes, knew people at school or work that had it but never even had a glue that thirst was a key sympton??!??!

We have read all we can and bought our own glueclose meter and pen injection but we really need your help for more info.

I have made some question below as I have asked the doctor to sit down with us tomorrow so she can give us more info!!! She has only gave passing info so far and already been 4days. Please help with answering what you can and any support you can offer.

- He is experiencing erratic blood sugar levels - from 27 to 7 but mostly +15. I have read it can be difficult to stabilise toddlers in the early stages but is this damaging his body??? Any advice to stabilise?

- What times during the day are blood gluclose naturally high?

- Any advice on insulin? Quantities, frequency, times to inject before meals?

- Where is the best areas to inject? Is it a good idea to rotate the areas?

- Any advice on the different types of insulin?

- What about too much insulin?

- What periods before and after meals should inject insulin? Eating/Insulin Schedule.

- How long does it take to insulin to act?

- Getting a toddler to eat heathy. Recipes, hiding vitamins 🙂, making sure he enjoys his food but also eats the correct things in correct quantities.

- We are thing of making the break in next week to UK to get the bes possible care for our son. Any advice on travelling with newly diagnosed toddler??

Hope to hear from you.

Paul, Zhanar and Eidan

 

[margie]

Hello and welcome to the forums. Sorry to hear that your son has been so poorly. There are many parents who frequent this forum and they may be able to help.

You may find the children with diabetes website useful in finding out what support is available.

http://www.childrenwithdiabetesuk.org/

We can't give you specific medical advice but can only speak from our own experiences. One of the problems with diabetes is that it can be very individual the amount of insulin one person needs can vary from one person to the next - but your Dr should be able to help you work out what your little boy needs.

Have a read of this thread it should provide you with some useful information

http://www.diabetessupport.co.uk/boards/showthread.php?t=10406

This page from diabetesuk - could be useful to you

http://www.diabetes.org.uk/Guide-to-diabetes/Introduction-to-diabetes/

I am sure one of the parents will be along to provide some advice for you.

 

[everydayupsanddowns]

Hi there

Sorry to hear about your son's diagnosis. Must be a very tough time for you all. As Margie says, we can't really offer any advice, only share our own experiences.

Don't be hard on yourselves for 'not spotting it sooner'. Type 1 usually comes on quite rapidly, and it took me (aged 21) several months of gradually getting more and more unwell before I really realised something was up and I ought to see a doctor.

Erratic blood glucose levels are not unexpected at the start. Just try to improve them gradually over the coming months and I'd expect no long term problems.

Yes rotating sites is a good idea.

Different insulins have different activity profiles. You'll probably find info in the box. Someone here might have a general idea too, what insulin(s) is he on?

Speak to your doctors/diabetic nurse about doses and timings, but I have seen parent comment that it can help with small children to inject immediately after eating so that you dont inject too much insulin only to find that they won't eat anything! Ask your team about 'carb counting' to make sure the food matches the doses of insulin.

Oh, and welcome to the forum 🙂

 

[grahams mum]

hi i am so sorry that your son has been diagnosed so young my boy was 3 years old and even now he has erratic reading and because they are growing we will always have this problem until they are 21 years old (i think)and about travelling back to the uk so soon i can say you are very courageous(we did not go on holiday the first year because we were still in shock about the other question i think you have to ask really more to the doctor and then we can help you more every body has different insuline and different needs so see you soon here and let us know good luck

 

[MumAndDadPinkerton]

All many thanks for quick replies,

Please keep your tips and experiences coming. Does anyone know of any good treatment and care clinics in Scotland? I thank all the doctors and nurses for their care so far but the country and city they do not have the facilities.

Many Thanks,
Mum and Dad

 

[Ruth Goode]

Carly was dx last June aged 23 months old, just remember you are not alone there are always support, advice, etc on this forum and from your DSN, I don't know what I do without them but we managed well since and everything became a routine surround Carly and her diabetes because she is only 2 now I had to give up my jobs to look after her full time.

Carly eat normally as long as they are low sugar with good carbs - She was on twice injections a day, after 3 months she is now on 4 a day with carb counting its give her more freedom with food, etc. I have got used to it all so any questions you need to know just ask the forum, they are a great group

Good luck and hope your little boy will bounce back again 🙂

 

[Gemma444]

Hi All,

Our little boy was just diagnosed with type 1 diabetes and we really want to get as much good and practical information as possible so we can support him during these initial difficult stages. We currently live oversea's due to my work and so although the health care and doctors have been great when we first realised something was seriously wrong, we feel we are not getting enough information. I feel they are happy just to control it and sort of keep his head above water but we need detailed info on insulin, giving shots, meals, schedules, glueclose levels. We need to be there for him. Its frustrating and we are heartbroken for our little champion.

It's been 4 days since he was diagnosed and he spent two days in intensive care due to dydration, very high gluclose and acetone levels. He was very weak and couldn't even move his head which has caused blisters on one of ears. We can't help feel we should've realised sooner that something was wrong. How many of us have heard about diabetes, knew people at school or work that had it but never even had a glue that thirst was a key sympton??!??!

We have read all we can and bought our own glueclose meter and pen injection but we really need your help for more info.

I have made some question below as I have asked the doctor to sit down with us tomorrow so she can give us more info!!! She has only gave passing info so far and already been 4days. Please help with answering what you can and any support you can offer.

- He is experiencing erratic blood sugar levels - from 27 to 7 but mostly +15. I have read it can be difficult to stabilise toddlers in the early stages but is this damaging his body??? Any advice to stabilise?

- What times during the day are blood gluclose naturally high?

- Any advice on insulin? Quantities, frequency, times to inject before meals?

- Where is the best areas to inject? Is it a good idea to rotate the areas?

- Any advice on the different types of insulin?

- What about too much insulin?

- What periods before and after meals should inject insulin? Eating/Insulin Schedule.

- How long does it take to insulin to act?

- Getting a toddler to eat heathy. Recipes, hiding vitamins 🙂, making sure he enjoys his food but also eats the correct things in correct quantities.

- We are thing of making the break in next week to UK to get the bes possible care for our son. Any advice on travelling with newly diagnosed toddler??

Hope to hear from you.

Paul, Zhanar and Eidan

Hi welcome to the forum, my son is 9 and was dx almost 2 years ago now. What regime has your son been up on. Things in the beginning are very confusing and your lad is alot younger than my son. My son was put onto 2 injections a day but this did not work for us and Jack regime got changed to MDI or basal/bolus are the names for it. this is 4 injections of fast acting usualy novorapid and one injection of long lasting of lantus etc. Some children are also on insulin pumps and my opinion is they are the best option but everyone is different and here in the UK its a bit of a postcode lottery if we can get a pump or not and alot of mums and dads travel quite far to get the best for their kids.

When on MDI you need to learn how to carb count and give insulin as as per differnt ratios. Jack is one 1 unit of novorapid for every 15g carbs for breakfast (1:15 as its written) and 1:25 for dinner and 1:15 for tea.

Jack injections before meals as I know he usually eats all his food but as your son is so young and he is on MDI you could inject after eating and reduce insulin accordling.

Hope this has answered some of your questions, i dont want to over load you with info lol.

As for travelling I would carry all insulin in hand luggage as it will freeze with all the rest of the baggage. Get a letter from your team that states to the air line that you will be carrying medical supplies. Also plenty of it haha.
Good luck x

 

[Alba37]

Hi Paul and Zhanar

Sorry to hear about your son's diagnosis. All your questions are natural and I am sure your team will explain more as time passes, it's normal to give info little by little as it is a lot to take in. Every person with diabetes is different so it is impossible to know what Eidan's doses should be. Also things will change until he is through puberty and grown up.

Where are you living? Are you coming back to Scotland, and if so where will you be based?

I would advise you to join CWD UK Parents email list (support for parents) There are over 400 parents on this list and they will help, support and advise you based on experience.

http://www.childrenwithdiabetesuk.o...email-and-mailing-lists/mailing-list-england/

I also think a pump is the best treatment for a young child, it would be worth asking if it's a possibility where you are, as depending on where you would be in Scotland it could be very difficult to get here.

Best wishes

Aileen

 

[Adrienne]

Hiya

Firstly welcome but so sorry you have to be here. There are some marvellous people here to help. However if you want specific answers, which I think you do for children then you should look at the website someone has posted already www.childrenwithdiabetesuk.org and join the email list. It is an extremely busy list with lots of emails rather than a forum but the advice and help you will get will be spot on.

Sorry I couldn't reply before but I organise a holiday for families with children with type 1 from that cwd email group and it was this last weekend and have been away since Thursday night and got back last night.

My daughter had her first insulin injection at 5 weeks old and she is now 11 years old. We have been through all regimes and lots of different insulins and she now is on an insulin pump (which if you can get your hands on one may be a great start for you - there are lots of young ones with pumps on the email list so they could help you with that).

I'll try and answer your questions as best I can but you have to remember I'm not a medical professional and can only go on my experience and knowledge that I too have learnt over the years.

- He is experiencing erratic blood sugar levels - from 27 to 7 but mostly +15. I have read it can be difficult to stabilise toddlers in the early stages but is this damaging his body??? Any advice to stabilise? It is extremely hard to stabalise a toddler, this is absolutely correct. I don't know what regime you are on. If you are on twice daily mixed insulins you will not get any sort of control and levels will swing. If you are on MDI you can get relative control but again for a youngster is can be very very erratic. The best start you can give him is a pump so I would recommend you look into those, if you want help on that just ask and I'll point you in the right direction. If you are on MDi, you should be carbohydrate counting and matching the quick acting insulin to the carbs he eats. That is the only way you will get half decent control on MDI (multiple daily injections which will be Lantus glagene or levemir once a day and then Novorapid or Humalog with carbs)

- What times during the day are blood gluclose naturally high? This is a hard one. People generally find they are insulin resistent in the morning and insulin sensitive in evening/night. This is in general so more insulin is needed in the morning than at night so the ratio of insulin to carb will generally be higher in the morning ie 1 unit of novorapid to every 10 carbs and in the evening 1 unit of novorapid to every 20 carbs. Many people especially children find they have the mid morning or post breakfast spike. It is very hard to get rid of and a pump is the easiest way to deal with that as there is then generally a knock on effect of a hypo by lunch !

- Any advice on insulin? Quantities, frequency, times to inject before meals?
In order of my preference and of many parents :

1. Pumping
2. MDI

And that is it. A few hospitals still use twice daily mixed insulins which many, including myself, think its a cop out. They do it so it is easy for schools so no injection at lunch time and it is always a money issue somewhere. - Where is the best areas to inject? Is it a good idea to rotate the areas?

Yep always rotate sites. You can use bottom, upper thighs, tummy. Some hospitals say no to arms for little ones but we did when Jessica was about 3 when MDI started. We used arms for NR and legs for Lantus. When she was on mixed twice daily as that was the only insulin around on offer we used thighs.- Any advice on the different types of insulin?

- What about too much insulin? You would have a hypo and it would need to be dealt with. We all make mistakes so don't ever beat yourself up about this. Even the most experienced will give too much or the wrong one or something, you just go with the numbers and do what you have to do.

- What periods before and after meals should inject insulin? Eating/Insulin Schedule. Always before however it depends on what insulin. If on mixed insulins you should probably be injecting about 30 mins before eating so that the food doesn't start working before the insulin as the insulin will play catch up and it never will catch up ! If on MDi then you are talking about novorapid or humalog or similar quick acting ie in the body for around 3 to 5 hours. Studies have shown that the ultimate time to give that is 20 minutes before eating however it is very much dependant on the food being eaten as some starts working quicker than others, or on the child as each child is so very different and it is trial and error unfortunately or whether very low etc. Lots of different scenarios.

- How long does it take to insulin to act? It hugely depends on what insulin, they are all different.

- Getting a toddler to eat heathy. Recipes, hiding vitamins , making sure he enjoys his food but also eats the correct things in correct quantities. The diet of a diabetic, a type 1 child, is just a healthy diet. There is no special diet. If on mixed insulins then you spend the day being very rigid with food times and you feed the insulin. With MDi you give the right amount of insulin to match the carbs you eat. With a pump the settings are in the pump (you set them with your medical team and they do need tweaking periodically) and you put in the carbs eating and blood sugar test and the pump works out how much insulin to match that food). You will learn over time what different food does. If you are under a good hospital with a great dietician they should help you. For example for most people pasta can be a nightmare in as much as you eat it and levels go up, then they may flatten out but about 4 to 6 hours later you will have a spike which is from the pasta. With rice, what I find is Jessica goes very low after eating it quite quickly and then spikes up later. All of this can be controlled on a pump and to a degree on MDI ie you can split the novorapid injection when eating pasta. You need to experiment and find out when the pasta spike is after eating it and then you can give some insulin up front, then eat and then say 2 hours later give the rest of the insulin. That works for some people.

- We are thing of making the break in next week to UK to get the bes possible care for our son. Any advice on travelling with newly diagnosed toddler?? Just go with the numbers (the blood sugar numbers. They will dictate what you do. Where are you coming from? How long is the journey? We've done USA and then shorter in Europe so would help to know where you are and what regime.


I hope that helps a bit and not confused you even more.

You will be living in the diabetes bubble at the moment I imagine, we have all been there but things get easier, not with the diabetes as such but with the knowledge you acquire, you can manage it easier and it becomes just part of your life and second nature. It will come up an bite you on the butt occasionally but again with the knowledge and support out there you get through these things.

🙂

 

[ruthelliot]

Hi there,
I couldn't add anything practical over the advice Adrienne has given as her experience/knowledge is way beyond mine but thought I'd chip in on the question about care in Scotland. The level of knowledge and funding issues can vary quite significantly. Our son was initially treated in north Lanarkshire and has since moved to Yorkhill hospital in Glasgow. I felt the some of the team at Lanarkshire were not nearly proactive enough in his care and also could not offer insulin pump therapy - something I was keen to pursue and have now embarked on. The care at Yorkhill has been fantastic I really couldn't fault both the level of expertise and the support. I believe Dundee is also supposed to be excellent regarding paediatric diabetes. I think one of the key things here is to make sure whatever hospital you attend at least has a paediatric endocrinologists and he won't be treated by a general paediatrician whose knowledge in diabetes may not be extensive enough. I have a friend who is a endocrinologist who specialises in diabetes so if you want to find out about any specific hospitals just ask and I can find out.
I know how tough things will be just now but doing what your doing and arming yourself with as much knowledge as possibly is a great way to deal with things.
Ruth

 

[Alba37]

Hi there,
I couldn't add anything practical over the advice Adrienne has given as her experience/knowledge is way beyond mine but thought I'd chip in on the question about care in Scotland. The level of knowledge and funding issues can vary quite significantly. Our son was initially treated in north Lanarkshire and has since moved to Yorkhill hospital in Glasgow. I felt the some of the team at Lanarkshire were not nearly proactive enough in his care and also could not offer insulin pump therapy - something I was keen to pursue and have now embarked on. The care at Yorkhill has been fantastic I really couldn't fault both the level of expertise and the support. I believe Dundee is also supposed to be excellent regarding paediatric diabetes. I think one of the key things here is to make sure whatever hospital you attend at least has a paediatric endocrinologists and he won't be treated by a general paediatrician whose knowledge in diabetes may not be extensive enough. I have a friend who is a endocrinologist who specialises in diabetes so if you want to find out about any specific hospitals just ask and I can find out.
I know how tough things will be just now but doing what your doing and arming yourself with as much knowledge as possibly is a great way to deal with things.
Ruth

Ruth, did Karen Whitefield fight for you to attend Yorkhill?

 

[ruthelliot]

We did get in touch with her and she sent a few letters to north Lanarkshire health board regarding pump funding but we got standard replies and it was left at that . It was only when I went to my gp and told him how bad things were that he asked for an urgent referral to Yorkhill - although I'm in north Lanarkshire, in my area you can be sent to either hospital it just so happened we choose the nearest on the day of diagnosis because he was so ill. What hospital are you with if you don't mind me asking?

 

[Copepod]

Please can posters be careful about naming hospitals / clinics etc. There haven't been any problems so far on this thread, but just wanted to warn rather than have to edit. The details are in the Announcement: General couresy guidelines and Website Terms and Condition at the topic of each section of this messageboard. In particular, please don't name any individual health professionals.
Private messages are just that - private, so you can exchange details through them.

 

[Hanmillmum]

Sorry to hear about your son, our daughter was diagnosed at 20 months, ( now 2 yrs 6 months) went into ketoacidosis and was severley dehydrated. Sounds very similar to your experience, we can appreciate what you must be going through. Our initial response to the diagnosis was "fine we can manage" we were so relieved she had survived after being in intensive care, and being warned about possible brain damage when they were rapidly rehydrating her. That was perhaps a little naive as it's such a complex illness we were ignorant to prior to this.
She too had high readings for a couple of weeks after diagnosis (we left hospital with highs of 20-30 mmols), these gradually came down and we then approached a honeymoon period where we had to cut right back on the insulin as her body began to use up the last of it's own reserves. She needed nothing during the night for a couple of months and was only on 2 injections a day (at breakfast novamix and teatime novarapid) .
We then began on the pump and she again was unstable in the early weeks and I hated it, felt out of control and worried we had made the wrong choice. We persevered and although there are periods when our daughter is unstable i.e with colds, growth spurts, even cutting teeth, it has given us much more flexibility and control with her diet and lifestyle.
She has a review with the consultant in out-patients every 3 months where they check her hb1ac bloods, this indicates whether we are achieving good control over her blood glucose levels in general. We have a community diabetic nurse we can phone or text with any concerns. There will be periods of highs and lows, some of which you just don't know what has caused it - so many variables. Some foods cause great spikes, others fine, it is a huge learning curve.
Our daughter runs higher on a morning and needs more insulin with her breakfast than any other meal.
To reassure you though she is a very active, bubbly and healthy child. She is growing well and has achieved all developmental milestones, next step is pre school nursery when she is 3. There are no issues with testing her BGs, it doesn't hurt her. She has one needle every 3 days approx when we change the canula on the pump. She has a normal well balanced diet, we count her carbs and the pump works out how much insulin she requires for any meals/snacks. She is on a tiny basal or background rate throughout the day/night.
I would invest in some literature and web sites such as this. Our daughter diabetic nurse gave us a lot of written info and books that we can keep referring to as needed as just too much info to take in at once.

 

[Alba37]

We did get in touch with her and she sent a few letters to north Lanarkshire health board regarding pump funding but we got standard replies and it was left at that . It was only when I went to my gp and told him how bad things were that he asked for an urgent referral to Yorkhill - although I'm in north Lanarkshire, in my area you can be sent to either hospital it just so happened we choose the nearest on the day of diagnosis because he was so ill. What hospital are you with if you don't mind me asking?

Hi Ruth,

Karen told me she fought for a constituent to get a referral to Yorkhill for a pump so when I read your post I thought it was you. Maybe it was someone else. My son was too old for Yorkhill when he was diagnosed. He had just turned 13, so he has always attended adult services : ( (Gartnavel then the RAH) Hope the pump is going well?

 

[ruthelliot]

That may well have been us she was talking about as she did meet us but unfortunately there was so much red tape and protocol it didn't go far and
so we had to go down other routes but got there in the end!! It was RAH we did our pump training and started Ben on his pump there so poss the same diabetic nurse as you?