Concerned about my son

[Sarah_1_2_3]

Hi,

My 2 1/2 year old son has been showing worrying symptoms and I am looking for some advice please.

His symptoms
- frequent urination (25+ times daily)
- constant drinking (2-3 litres)
- tiredness (can have a 4hr nap, then go to bed from 8 til 8)
- quite alot of behavious issues
- glazed/vacant look regularly through the day

His dad is type 1 and to be honest we have always wondered about him for the last 6-8m. It wasnt until recently I had him to a doc with what I though was a urine infection for it to be clear, and the dc to mention he wanted to do a glucose test. He was clear at the time but he wanted a morning sample again in 2wks (which would be about now actually). Getting more concerned about him, my husband checked his sugar level and it was at 17.9, which was about 5hrs after a meal, just before his supper. Although he did have 3 starburst sweets about 2hrs before.

Should I be concerned or am I just overreacting as there is rather alot of family history of type 1 including his dad.

Thankyou
Sarah x

 

[totsy]

hya sarah,
i personally would go to a&e as 17 even after food and sweets is quite probably diabetes and if he has ketones he could turn seriously ill, if u dont want to do the hospital first route plz ring nhs24 ,
it is something u really cant afford to wait for :?
plz let us know how u get on

 

[suzi]

Hi Sarah,
I would go to A&E straight away, your son is showing all the signs, we can't diagnose on this web site, but i can say from personnal experience, having an 11 yr old son, diagnosed almost 4yrs ago, that your sons symptons do sound like diabetes. Let us know how you get on, i do hope its something else, but if not, please return to the forum for big hugs and support.
Take care,
Suzi x

 

[Shazza]

Hi I agree with the others I would go to a&e much better to get him sorted asap, hospital is the best place for help and advice.


take care

 

[Sarah_1_2_3]

Hi guys,
Thankyou so much for the support. I have phoned my diabetic family in search of urine test strips but to no avail. I have concluded after talking with my MIL, that I have a plan. We have, about 1/2 hr ago, given him some chocolate. With the idea that he will fall asleep within the next hr. We will then test his BS again and see what its at. Then I'm thinking if need be call NHS 24

After taking his BS 2day I have kept an eye on him. He has been to the toilet 8 times in the last 2hrs, and had drunk 2 cups of juice about 3/4 of a litre by my guess of a ready diltuied bottle of squash. Which also is sugar free due to his dad.

i'll let you know how it goes
Thankyou again for being so supportive, my instincts are telling me its probably diabetes. I just hope not x

 

[totsy]

your welcome,
just be careful asd ketoacidosis can come on so quickly, i ended up in a really bad way extremely fast :?

 

[Sarah_1_2_3]

Thats us finally managed to get a BS off him, its like gettin blood from a stone! It was 7.9, thats about 3hrs after having a little chocolate and his supper 2hrs previous to that.

I'm not quite so concerned now. But I will still go to doc 2moro morning. I'll get a 1st morning sample off him and go first thing.

Thanks agian everyone x

 

[Sarah_1_2_3]

Hi,
I took him to the doc this am. She didnt do any test etc, just sent us in to hospital. We got there to discover his BS was at 4.9. Which really confused me. How could it be so high then again so low? After a while they came to us saying they suspected he had what they called pre-diabetes. From my understanding its the early warning signs of diabetes. He shows all the symptoms of it, but his sugar levels aren't continually high.They said they could be high, hence the days when he is totally knocked out and really grumpy. Then the next time it could be low. Just that it was temperamental not totally broken.
Am I right in thinking this? Does anyone else know more about this? Any advice would be so greatfully recieved. I'm a little confused now, especially when they say he is highly likely to get diabetes coz of this.
S x

 

[diabetesmum]

Hi Sarah,
As I understand it, the beta cells (that produce insulin) in the pancreas usually die off gradually over a long period of time (months or even longer). During this time I imagine that insulin production can be erratic which is why your son's blood glucose is sometimes high and sometimes not. I would say, though, that I don't think a reading of 17 is likely in someone with a fully functioning pancreas.

My younger daughter (now 8) was diagnosed at two and a half. Her symptoms were as you have described for your son, plus really bad constipation, caused by the dehydration effects of high BG's.

What you need to be very careful about is ketoacidosis. In very young children it can be very dangerous. They can go from being well to critically ill in a matter of hours. I would suggest you get some ketostix if your hubby doesn't already have some and test little one's wee regularly. If he shows more than a trace and especially if his BG is up, get medical help immediately.

I hope this helps. What treatment has the hospital advised?
Best wishes
Sue

 

[leggott]

Hi, I have to agree with Sue. This happened to my son just before he was diagnosed. He had all the classic signs, wetting bed, drinking and eating lots and getting thinner. My husband also has type 1 so we knew the signs. We did a urine test which showed sugar, so my husband immediately took him to A&E. He phoned me a few hours later saying they'd done a blood test and it was fine. They reckoned he had a cold and just sent him home! Needless to say, a week later we were back in A&E when they did diagnose diabetes and he was put on insulin.

Like Sue says, they go through a period called the honeymoon phase. This is when the pancreas is still producing some insulin, so the blood sugar will evenutally come down after several hours of eating, but the blood sugar levels are still rising too high. I'm suprised that the hosptial didn't give you more information. My son had only very small doses of insulin at the start as his pancreas was still producing insulin. Getting readings as high as 17mmol even if it does come down after several hours is not good and it has been affecting him if he has been drinking and weeing as much as you say. His little body as been trying to get rid of the excess sugar in his blood. It may be worth getting a second opinion. As I said earlier, we had two trips to A&E before my son was diagnosed. On our second visit the hospital said we should of been offered a follow up check the first time. Work on your intuition, as a Mother we know when something isn't right. I know a diagnosis of diabetes can be daunting, but it is controllable with the right medication. Leggott.

 

[Sarah_1_2_3]

Hi, thankyou

I have only a short time to reply just now so it will be quick. I have since been back yesterday morning a whole hrs drive for a dipstick test! When they said, yes its fine, then had the idea they were sending us off home. I was not fo rit and wanted an explaination. To discover that one doc says one thing another something else. One said he might have had this other life threating thing diabetes pro something or another. But he was pretty sure it wasnt this. Its something thats to do with brain function and ADH production. Its serious so I made them tell me for sure its not this. And demanded a second oppinion. Which was backed-up by the senior consultant.

When on the diabetes subject, they say no, he def doesnt have diabetes. I shouldnt test his blood sugar. Apparently my doc was wrong to say its ok to do this if he allows us to do it. Violating human rights or some **** like that. She then said we must not let the kids see my husband doing his insulin and BS monitor regieme. I went off my head, asking what right she had to tell us this. She backtracked very quickly with a 5min excuse about what they dont see they dont want. In the end I told her to stop digging the hole coz its was now sounding like she was questioning my parenting ability. Especially when she said I was obviously forcing him to get it done. The next consultant said, he was under the impression that he could very well have pre-diabetes. Which he believes was entirely possible for T1 as well as T2. But its not a common diagnosis coz its not recognised by many docs. Although this is what our diabetic specialist GP said about 2m ago.

Its all so conflicting. Its one thing or another, black and white then someone puts doubt in your head. He did have A BS of 4.5 when we were in but he hadent eaten for 4 hrs. So I instantly thought great hes ok, but the other doc said it was entirely poss for this to happen. I will get some dipsticks and keep an eye on it. Is it when I see glucose its an issue? As he already had traces of Ketones and they pass it off as nothing.

Thankyou agsain, you ahve all been great and helped my worrying considerably
Sx

 

[diabetesmum]

Hi Sarah,
Wow, how confusing for you. And worrying.

Okay, I have 2 diabetic (Type 1) daughters, and what I say now is based on years of experience with them, but I must stress that I am not a medical professional.

1. Ketones: anyone, child or adult can have ketones, especially when they are on a diet, are low carbing, or haven't eaten for hours eg overnight. It is very common for children (esp young ones) to have a trace of ketones first thing in the morning. This does not usually indicate Type 1.

The problem arises when there is more than a trace of ketones, combined with a relative lack of insulin, which is normally reflected in high blood glucose levels. This leads to the blood turning acidic (diabetic ketoacidosis or DKA). According to what I've been told this usually happens when a person's insulin production falls to 20% or below of what their body needs to function. IF your son is developing Type 1, he may not yet have reached that critical 20% level, so he seems relatively well. However, if his beta cells are failing, at some point he will drop below this level and develop DKA. This is an extremely dangerous situation for anyone, but especially a young child. My daughters' consultant told us that they could go from being well to fighting for their lives in intensive care in as little as 6 hours from the onset of DKA. I do not mean to frighten you, but you really cannot afford to ignore this possibilty.

2. Blood glucose: Our consultant has also told us that in people whose pancreases are working fully, BG is tightly controlled between 6 & 8. It may very briefly rise above this after a carb heavy meal, but should quickly come down again to below 8, certainly by 2 hrs after eating. The problem with developing Type 1 is that insulin production surges and falls so that sometimes you may get a good reading eg 4.9 and feel reassured, when in reality all may not be well.


Please keep testing his wee and his BG. As for violating his human rights - what rubbish. Doesn't he have a human right not to be left to become very ill when that could be avoided. I am so glad you did not allow that comment to go unchallenged.

Let us know how you get on.
Best wishes
Sue

 

[Sarah_1_2_3]

Hi Sue,

Thankyou so very much for that information. It is more than the hospital gave us. I made an app 2day for him with an very highly rated and experienced doc at our practice, who was full of information and was disapointed that we were treated as we were and confused as to why we were not given more information.

I have gotten ketosix and tested him just before his supper. It was at 3mmol (by my estimate of the range of colour - it only shows 4 and 0.5, but was very close to the colour of 4). When I tested his bro, myself and my T1 husband we all showed 0. Is this normal?

He seems well enough, not himself, as being a mother you will know when your child 'isn't right'. He is drinking as usual, and weeing, although maybe not quite so much as usual. He is also eating more than normal 2day if this is relevant.

My idea after that test being that I will keep an eye on his levels of ketone over the next day or 2 and see what they are like. I'm confused to say the least. Concerned about him and the chance that we might miss something. I dont want to be neurotic about it either. But its ever so tempting to check him thro the night. One minute he seems fine the next he is sleepy and doesnt want to do anything other than sit there.

Thankyou again for your advice and experience. Its so nice to know there are others out ther who have been in similar situations

Sarah x

 

[Jen&Khaleb]

My ketosticks might test differently to yours but I would think that having anything but trace amounts would mean a need for more doctors visits and continued monitoring. My sticks test both for glucose and ketones. If he was showing ketones I would be very concerned. Other than when Khaleb is sick his blood ketone level would be 0 or 0.2. I doubt this would register as anything on a wee stick. I wouldn't stress yourself by getting up and checking him in the night. It would be after food and sugary drinks that his bsl's would be high if he were developing diabetes. Glucose and ketones can turn up in urine for other reasons than diabetes and can be signs of general illness like colds/flus etc..

If your instincts are telling you something is wrong you should trust them. I'm sure there are blood tests available and if he would cope with a glucose tolerence test that would give a good picture of how he copes with a sugar load.

 

[Sarah_1_2_3]

Hi,
Thanks jen for your post. I really dont know what to think. Our strips only show ketones. And showed a trace last time and I just checked his BG which was at 9. Ok thats on the higher end of the range but he'd had a lolipop an hour or so before that.

When you say a glucose tolerance test it reminded me, I asked about one at the hosp and got told that its ridiculous they wouldnt do one for him coz its not something thats very indicative of diabetes. I feel like I'm banging my head against a brick wall......what else can I do? I'm tempted to keep an eye on it myself until I think its moving too far. I know the signs of ketoacidosis and what to look for if his levels are high so I think if I keep an eye on him all the time and keep testing his urine and when I get to, his BG reading and monitor them all. I should write them down too. The GP seemed content on me keeping a close eye on him. What do you think? What readings should i be seeing as a problem?
x

 

[diabetesmum]

Hi Sarah,
I think my ketostix may be different from yours. They show 'Negative' which is a pale beige colour, 'trace' which is a very pale pink, and then + , ++, +++ which get darker and darker till the +++ is deep purple. Like Jen said I too would be concerned with anything more than 'trace', particularly if the BG was up. The listlessness, lethargy, grumpiness, thirst and weeing are all symptoms both my girls showed prior to diagnosis.

Readings consistently outside the normal range would worry me. It's a good idea to write them down. As Jen said, trust your instincts - you know about ketoacidosis and what to look out for, just bear in mind how fast it can happen. Personally if I was worried that something might be brewing at bedtime, I would get up in the night to check, but it's a personal decision really.

Being especially hungry might be a sign - when the glucose is 'trapped' in the bloodstream, the body thinks it is starving and hence the hunger. Many Type 1's lose weight before diagnosis, although they may in fact be eating more.
Best wishes,
Sue

 

[hanadr]

Sarah
I'm an "elderly" T2, so not walking in your shoes. I have been reading this thread and picked up one point. the Oral Glucose Tolerance Test is the ONLY correct diagnostic for diabetes. If your doctor says it's not, something isn't right. They don't always do one nowadays, but it is the Diagnostic test for diabetes.
Keep at them It's your baby's health in the balance.
Sounds like they don't know what they are doing

 

[diabetesmum]

Just before I go off to bed, another thought. In my experience, very few GP's are 'up with the play' when it comes to Type 1, esp in children. They tend to 'think Type 2' which is at best not very helpful and at worst dangerous. Likewise staff in A+E/casualty dept's might not be very familiar with it. A while ago I had a Dr in A+E tell me not to test my daughter more than once a day and to reduce her insulin if she was unwell and not eating - that is dangerous advice as usually they need more insulin when unwell, not less!! You need to get a paediatrician with a special interest in diabetes, who runs the paediatric diabetes clinic to advise you, or if you could get a name from somewhere (maybe your hubby's adult clinic would know), of one of the specialist paediatric diabetes nurses.
BW
Sue

 

[Shazza]

Hi I have been reading this thread but dont like to give advice as im still learning, however I agree with everyone and the advice Sue says about contacting your husbands DN is excellent. Also is there any way you can get your hands on keytone kit that tests bloods instead of the urine sticks? blood tests are much more accurate and easy to read. In my experience gps dont know about diabetes I went back and forth for 2 weeks with my son who showed all the symptoms of diabetes, we ended up with a doctor at the door at 11pm after bloods were taken that day and Son woken and into hospital with bs 26. hope all goes well for you, sounds liek you know what to look for but so far havent had any help from docs xx

 

[Sarah_1_2_3]

Thanks again everyone,

I dont have access to a blood and ketone machine, only my husbands. But i will ask a friend who I think has a machine too so will find out.

Sue - I cant believe someon in A&E told you that. Like you say they obviously dont know anything! But it makes a valid point. We have a diabeitc specialist GP, but hes off for an operation. The GP I saw was very good, he gave me lots of information, what to look for and what will happen if and when. How careful i should be of ketoacidosis and the diff between that and ketosis. He recommended keeping track of him which is more than the consultant suggested. They said if and when, not at least 6 montly.

Hanadr - I was under the impression Glucose tolerance wasnt used anymore. But my husband had one, as did the T2s that I know and my T1 relative. It was the consultant that said no to the glucose tolerance test, which you would assume to be more knowledgable. The doc I saw yesterday said its a possibility if we think it progresses, but that cant do one at the surgery, only hosp have facilities.

As for the stix - mine read a few readings. They have 0 (neg), 0.5 ( +/-, traces) 1.5 (+, faible), 4 (++, Moyen) 8 (+++), 16 (++++) both of which read as Fort.

Sue - how long did you notice the symptoms for, prior to diagnosis. Compaired to the hosp tests and when we have checked, they are on the up. Maybe its just a matter of time. I'm going to keep a diary of his levels etc. At least then I have evidence to show them if we come away from hospital with the same conclusions as last time. I checked him last night and he was fine. I checked about 12.30 so at least able to sleep afterwards.

This morning he is ok, still the usual grumpy, sleepy and drinking. But he usually picks up later in the day. He has a peak as such, and then sleepy again. Its this constant whining that gets your brain tho!

I will let you know how it goes 2day. How often should i check his urine, a couple of time in the day to see if there are any differences? Or more when I see the symptoms and a little afterwards?

Sarah x