9 month old son newly diagnosed

[mcpound]

Hello, our 9 month old son fell ill on the plane out to Turkey last week. Two docs examined him but thought it was an infection and told us they thought it would clear up in a day or two. He deterioated overnight so took him to hospital but they also treated it as an infection when it was infact diabetic ketoacidosis. We were so distraught as we could see he was getting worse but the doctor would not listen. I insisted they moved him to a bigger hospital where thankgod they recognised the symptoms and started appropriate treatment but he eventually slipped into a coma and stayed in ITU. The good news is he has made a fantastic recovery and we are so proud of him. There was some concern he may have brain damage but he is almost back to his normal smiley self. We are still at the hosp in Turkey untill his blood sugars have stabilized enough to let us fly home maybe next week.Yesterday they were very low but today they are very high. Thankgoodness we have access to the internet as the language barrier has proven difficult and at least we have been able to research our sons condition.
I feel so guilty as now i have read about about it I realise Henry was displaying some symptoms such as very wet nappies and increasing thirst but I just didnt think anything was wrong. I assumed that it was getting warmer so he would need more water.
I just want to come home and some expert advice. We are distraught that our beautiful baby son has developed diabetes and are dtermined to do all we can to keep him healthy. The more I read about the complications of becoming diabetic so young the more frightened I feel. It is just heartbreaking. Sorry to go on a bit. I suppose I am just coming to terms with it all. Now when I look at my baby boy I feel so sad but then feel guilty for feeling that way. He is still the same happy smiley boy even after all he has been through. Im so relieved there are places like this one to get real advice from parents with experience of the condition. x

 

[cugila]

Hi mcpound.
Welcome to the site.

I am sorry to hear of your little boys problems and of your obvious concerns.
There are a number of parent of young children here who have been dignaosed as Diabetic and are on Insulin. I am sure some of them will be along to help and advise.

If you just need some support or need to ask questions we will be here for you and your family.

Ken.

 

[totsy]

hya and welcome,
as already said we have lots of parents of type 1s and lots of older members who have had diabetes for many a year, try not to worry altho i know its hard when u have children but diabetics do not always get complications,
when u get back onto home ground im sure that will help ,ask as many questions on here as u need ,however silly they may seem, one thing is fore certain you have come to the right place,
stay in touch and give that little one a big hug

 

[diabetesmum]

Hi there,
Thank goodness the 2nd hospital realised what was wrong with your son and he is okay! You will need time to come to terms with the diagnosis, it is a huge shock and a steep learning curve. Try to take it one day at a time, and be kind to yourselves. Parental guilt and hindsight are weird and wonderful things, but it is not your fault that he has diabetes, and looking back with your newfound knowledge of the symptoms will just upset you, really you were not to know.

If you have any questions, please ask, everyone here will do their best to help.
Best wishes to you and your son. Let us know how you get on.
Sue
(Mum to 2 Type 1 daughters)

 

[mcpound]

Thanks so much for the relpys. It is definitely a comfort to read all the advice and posts on the website. They have increased my sons Humulin NPH tonight as he blood glucose has swung from hypos to very high today, over 24mmols today at one point. When do these huge swings even out? Doesnt look hopefull for coming home early next week but Im just sitting tight and trying to keep my head together. The last thing I want to do is take Henry on a plane untill he is more stable. Anyway I dont reckon I will be getting much sleep as on a hypo look out. Sometimes cant work out if he is clammy or just sweaty because it is over 24 degrees here. Ive done way too many blood glucose tests but terrified he will have a hypo and Ill miss it. We are currently on a regime where he eats every 3 hours from 6am till 12am so we are exhusted. Does that sound right for a newly diagnosed baby? It does not help that the nurses come and wake him up at 3am to do a temp even though he has not had a single fever in 10 days and then they come in at 4 am to change the water cylinder that we are not using. He is getting about 4-5 hours sleep at night. Pretty fed up but from what Ive read so far it can only get better. xx

 

[diabetesmum]

Hi,
I'm sorry I can't give you any advice on the 3 hourly feeding regime Henry is on as my younger daughter was 2 when diagnosed, and so past that regular feeding phase. It is probably a good idea though as most fast acting insulins peak at around 2 hrs and then tail off over the next couple of hours or a bit longer. But I think perhaps Humalin NPH is an insulin mixture (of both slow and fast acting insulins)? If so it is even more important that he feeds regularly.

As for the huge swings in BG - it may take a while to settle down. Really only trial and error will teach you how his carbohydrate intake and his insulin doses match, there's a lot of readjusting to do. And tbh even now (5 and 6 years on from diagnosis) we still get huge swings at times. It seems to me that some children are more easily controlled (BG wise!) than others. A regular routine of eating and insulin helps, as a family we are a bit chaotic which is not helpful! Perhaps it will be easier for you as your son is still so young and you can set up good habits from now about regular mealtimes and so on.

As for hypos. Yes they are a worry. When my daughter was diagnosed at two we found it very difficult at first to know, and tested a lot. I used to feel sorry for her tiny little fingers (still do!). After a while we got better at 'reading the signs' and could relax a bit, but even now I still get up often at night to check them both (and the older is 14 now!). All I can suggest is taking it in turns with your partner, so that at least some nights either one or the other of you is getting some unbroken sleep. It is really important that you do this and don't let yourselves become utterly exhausted.

You are bound to be distraught. I felt that in a way I was grieving for the healthy child I'd had before diagnosis, but as you say they are still the same little people really, and you will become used to a new 'normal' more quickly than you anticipate, probably. I think once you are home, and have been taken under the wing of a paediatric diabetes team you will feel less anxious and less alone. So hang in there, the next few days will pass, you will know what to do by the time you leave hospital, and gradually things will look brighter.
Sue

 

[Jen&Khaleb]

Hi there,

My son was 8 months old diagnosed T1. It all happened over three days. One day thirsty, another day he seemed unwell and the next morning I took him to hospital. He had a blood sugar of 86 so spent some time in intensive care.

Don't be shocked by your son having blood sugars in the 20's now and again. It happens fairly often but shouldn't stay that high for long periods. You cannot aim to have a childs blood sugar stay between 4 and 8 like adults or you will be risking some very serious hypos. As your son gets older you will find better control.

My son goes to bed with a blood sugar between 14 and 18 and I am generally checking him once in the small hours of the morning. He wakes up with a blood sugar of 5 or 6 generally, unless I have had to top him up in the night. During the day he stays under 10 but it has taken me a fair while to get that sort of control.

I am sure you will get a lot more assistance once you get home. I can tell you that I was completely overwhelemed at first and struggled to do day to day stuff worrying about blood sugars but it is a fairly normal part of our day now. I cancel everything if he gets sick and make huge allowances of time for car trips or appointments.

Take it slowly. It is very hard with a young diabetic child. Even half units of insulin make massive drops and small amounts of food make massive rises. The one good point is that your child wont remember any other life and will find it quite normal to get his finger pricked before food and have needles.

I am trying to wean Khaleb off bottles of milk at the moment so this is a fairly challenging time but I am determined to get this sorted out. Having him on a bottle has made life really easy with his diabetes. It was a low carb option to keep him in safe zones between meals and was an easy way to top him up if he was low in the night. I could also add castor sugar to the milk to treat mild hypos although I think fruit juice is better (Khaleb wont drink fruit juice).

Wishing you all the best and sorry your holiday wasn't all it was supposed to be. Not even too many medical professionals see kids as young as ours with diabetes. I have not met anyone diagnosed younger than Khaleb yet. He also has Down syndrome and this is apparently the reason for his young onset.

Take care, Jen x

 

[mcpound]

Thanks for your advice Jen.You must have so much to deal with coping with diabetes and downs syndrome but it sounds like youve got it sussed. It does seem pretty rare for babies to be diagnosed with diabetes hence the difficulty I have found with finding age specific advice. Henry has had another 2 nasty hypos since yeaterday so i rang my local diabetic specialist childrens nurse. She was fantastic and basically said that she thinks Henry is on too much insulin which I knew anyway and gave me some sound advice of how to deal with hypos. His bs was just over 1 today and the nurse just walked off to phone the doc and wouldnt do anything till she got a call back. I gave him orange juice myself. Every day I have a run in with docs and have at times refused to allow them to give some dosages of insulin because I know it is too high. Anyway moaning aside i shold be home this week. Take care.xx

 

[Mary Cook]

Hi,
This happened to my grandson Mason when he was 7 months old. He also went into a coma but he's now 3 years old and perfectly normal. When your son's blood sugar levels vary he may feel grumpy and tired and not seem like his old self.
Something for you to consider once your little boy is back in the UK: No-one else in our family has type 1 so Mason was tested for a genetic mutation of the beta cells - Kir 6.2. This means that his pancreas does produce insulin but he needs medication twice a day to assist the process - no insulin shots required. Before this diagnosis he was fitted with an insulin pump, which kept his highs and lows under good control. Ask for one of these when you return to the UK. There is also a matching feedback device that can be fitted, it measures the blood sugar level every five minutes. Mason was treated at Papworth Hospital in Cambridge. Exeter Hospital are also authorities on treatment of diabetes in the young and very helpful.
I recently bought Mason a Pelican Sun lancing device which is much less painful. It's digital, and has a cartridge of 50 needles inside it.
Best wishes
Mary

 

[hanadr]

mcpound
i don't know what life is like for you. I've never been through it, but I do know that mother's instinct is strong and reliable. and fighting for your baby is right. My friend spent months telling doctors she wasn't a "fussy mother", before they investigated properly and found her daughter's serious heart condition. My friend saved her daughter by insisting something was badly wrong. The daughter is now 19 and just had her most recent heart surgery. She was months old when they found the problem
When you know you're right, YOU ARE!

 

[Jen&Khaleb]

Hello again,
I also know what you mean about having to tell the hospital to lower insulin doses. I had to really press my case that I felt I was over-feeding him to compensate for the insulin doses they thought were appropriate. They were a little offended but with the backup of the diabetic educator everything was sorted out. It wont be long before you don't rely on the advice of professionals to adjust doses yourself as he grows and his diet changes.

I find in Khaleb that when his long acting insulin (Levemir) first kicks in a few hours after it is given I need to make sure morning tea is ready to avoid a hypo and supper also needs to be fairly well timed also. I can't lower the dose though or by the end of the day he will be above 15 continuously so I just plan his meals around this. There is a bit of an overlap with his long acting insulin and also the effects of the breakfast novorapid. There is a mental balancing act going on in my head all the time and I never ignore odd behaviour.

As I've been weaning Khaleb off the bottle I've had a low of 2.3. He suddenly just stopped and screamed. We have managed to balance out the lower carb diet without all the milk now and although I might still have to do a bit of tweaking we are back on track again.

To Mary Cook, Your Grandson is the youngest I've heard. What a shock to his parents. Glad he is doing well. It is surprising what kids can withstand and come out unscathed.

Anyway, your insticts do tell you what to do but it is good to have medical professionals on your side when times get tough. I have a really good relationship with Khaleb's diabetic team who also keep track of his delayed development. You eventually find out how well you are doing by what hba1c's you get on a regular basis and hopefully not too many hypos. I try to make sure food/diabetic issues don't take over our lives (I have a 14 year old son also) but I do find I have to attend to those things as a priority. I carry a large bag that is packed all the time with a complete kit of insulin, meter, hypo kit and plenty of food with plastic spoons.

It'll all work out in the end.

When do you look like getting home?

Love Jen

 

[mcpound]

Thanks again for the good advice. It really is invaluable.I really have got so much to learn but I am feeling more confident. The good news is finally our flight has been sorted. Getting back Fri afternoon. Ive been in close contact with the DSN in our local hosp and she and a consultant our going to come and meet him on the ward. He will get a check up then if all is well we will spend the weekend at home on the same regime then start a new one next week. There has been one positive thing that my little family has been holed up in this hospital for a few weeks. We have really got a feel for which dosage of insulin is right at the time and we are learning fast what changes in behaviour to watch for. If we had been at home my husband would prob had to carry on going to work and not had such intense training. Actually make that two...Henry is perhaps the happiest Ive ive seen him and he was a pretty happy chappy before. He has had the uninterrupted attention of both his Mum and Dad for 24hrs a day and has thrived on it even after all he has been through. xx

 

[totsy]

glad u have your flights home sorted,
give likkle one lots of hugs and keep popping in the forum for advice or just virtual hugs

 

[diabetesmum]

Thanks for letting us know how you all are. I'm glad you'll soon be home. Keep in touch.
Best wishes
Sue

 

[flojos mum]

We keep thinking of you, hope it is all going ok and that the flight home tomorrow goes well, you are very brave to deal with it so well, my daughter was diagnosed at 10 so I could explain things to her, must be very difficult for you all. Good luck with getting things sorted.

 

[cm1976]

hi there - I'm new here and jst wanted to say I really feel for you with such a little one being diagnosed with type1

My son was diagnosed at 4yrs and we struggled in the beginning to get our head around the whole thing but can't imagine how scarey your time has been getting ur little one diagnosed! thank goodness you got the right treatment in the end!!!

We really struggle to stabilise our little man's bm's and like someone else said in the very beginning my boy's fingers were very battered frm blood testing - over the years i have come to the conclusion that there are soooo many factors affecting blood sugar in children that I dont get so hung up over it and am more accepting that its something i can't have complete control over - which really bugs me!!!

anyway all the best with ur lo

x

 

[Dillinger]

Hello,

My son is 6 months old and seems very happy and well. As a Type 1 I am a sensitive to the possibility of him developing Type 1 diabetes as well; I would like once every few months to test his blood to make sure everything is ok.

My question is; how do you actually go about getting a blood sample from a baby. A heel prick seems to be so painful and unpleasant; his fingers are obviously tiny so where do you mums get the blood to test your babies? Can you do a 'finger' prick on the bottom? If it has to be a heel prick then so be it, but I'd rather not...

Thanks a lot

Dillinger.

 

[Jen&Khaleb]

I use fingers and toes. I never used his heel but the nurses sometimes did in the hospital when he was a baby. Now he is walking I really only use the odd toe in the middle of the night. Sadly, you just have to keep using the fingers and rotate around and up and down as far as possible. I certainly try to miss a few tests when he has periods of stability.

I realise your concern about testing your baby but my experience with very young children is that it happens very suddenly rather than over a period of time. Khaleb would have only had blood sugar issues for a couple of weeks before and I could say that I noticed something was wrong about 4-5 days before taking him to hospital. The thirst was apparent but kids change so much it was easy to put it down to a virus or warmer weather. I think older children show symptoms for weeks or months.

Anyway, I probably find the injection sites more concerning than fingers (except when he is sick)that heal very quickly. I use Khaleb's hip fat, butt and front of thigh. If I wanted to use his tummy I'd have to get somebody to pin him to the floor. The areas I use I can get to with Khaleb laying face down over my lap and his hands don't get involved.

Jen.

 

[sophsmam]

iv'e tested our baby boy on his finger on about 1 he didn't even know,i'd noticed he was having a lot of wet nappies but was fine. im glad all the babies are doing ok.

 

[Dillinger]

Thanks!

The heel seems such a painful place to get blood - I'll definitely not do that; and I'll do my best not to obsess about this; I just wanted to know what to do if I was worried.

I really feel for you with your lovely babies having to go through all of this; I guess one consolation is that as a juvenile onset diabetic it never really bothered me at all it just was what it was; I know it broke my mother's heart though.

All the best

Dillinger