Author Topic: Slow/Onset?? Please help.  (Read 1563 times)

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Offline clairexxx25

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Slow/Onset?? Please help.
« on: 01 September 2013, 02:09:41 AM »
Hi, Please could i have some advice, my son is 7 and a half, Weighs 19kg. For the last year or so hes been having episodes, He will be perfectly fine, then all of a sudden he cant move, hes crying in pain that his head hurts so bad, after about half an hour the stomach pain will join him, He will start throwing up. This last anything from 3 hours to 6hours then hes fine. And can happen once a month or 7 times a month.

I took him to A&e Oct 12, He had BS of 11.6 ketones 3+ i took him to a n e a further few times same again high bs n ketones, but levels would go down when his episode had finished. they did a blood test and referd him to a ped, Who did a OGTT, Negative. His 1st A1C was 4 something(about a year ago), He lost weight in January 2013. and they did another A1C Which was 5.9 but again his random readings were ok,

My ped is rubbish and has discharged us (may i add he diagnosed my son with so many things and had to take them back as he didnt actually know what was going on)

Anyway my GUT is telling me somethings wrong, so i brought another BS monitor, These are the sort of readings i got..

Random test after i brought machine 11:30am, 11.3mmol
Before meal at 3pm 6.7mmol
and 6pm 8.2mmol
9:30pm (son had been asleep for 3 hours) 8.8mmol

Fasting 5.4mmol
2 hours after meal 12mmol
1 hour later 8.3mmol

next day.. 6.5 before meal
2 hours later.. 15.1mmol
few hours more 8.7mmol
11:30pm (asleep for 3 and half hours) 9.6mmol

A few random reading throughout the day.. the numbers i got are..
6.9... 7.0... 9.6.. 7.6... 8.5...9.0..8.7..6.9...10.7..6.9...7.6...15.1..6.5..8.9..7.9...12.6

Last fasting was 5.6 which i assume is ok? Are the rest ok? I went to my doctors to ask, but she wasnt helpful at all. and asked me if i wanted some help to get over the feeling somethings wrong :(
I really dont know what to do anymore. any advice please?

Offline nytquill17

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Re: Slow/Onset?? Please help.
« Reply #1 on: 01 September 2013, 02:52:05 AM »
Oh dear, it does sound like you are right to be worried.

No doctor should be ignoring BG readings of 8 or over in a non-diagonsed person, particularly if also positive for ketones. To say nothing of a level of 15! I can see where they would be a bit confused if OGTT showed nothing and A1c is ok. But he is clearly not well.

I hate to say to let it happen again, but next time he has one of these episodes, test his blood and call an ambulance. If they come out and see the state he's in, and you can show them his blood sugar is high, that ought to get their attention.

Given that his A1c is rising, I wouldn't be surprised to hear that a year later, an OGTT gives a very different result. In the early stages the body can still deal with glucose normally at least some of the time, but as it goes on this gets less and less.  In my case it took several months to go from "feeling vaguely odd" to "being clearly ill." It sounds like you may have spotted this very early on due to your son's feeling it so intensely, unfortunately too early for him to officially make any diagnosis criteria, but he may well make them now if he were tested again.

Keep pushing. Don't let this go. You're not crazy, the people who are trying to tell you nothing is wrong when your son is having readings that are clearly out of range are.

Others may be along soon with more practical suggestions. Hang in there.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Pattidevans

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Re: Slow/Onset?? Please help.
« Reply #2 on: 01 September 2013, 11:18:34 AM »
Hi Claire

Like Nytquill I don't think you are worrying about nothing.  No child should have BG readings of over 8mmol.  Can I suggest that you test your son when he wakes, before and at 1 and 2 hours after each meal and, most importantly, keep a diary, writing down the numbers together with a note of what he ate.  Each time he has an "episode" test his BG and ketones and write it down.  Incidentally have you got ketone strips?  The paper (urine testing)  strips can be got without a prescription for about £5 for 50 from the chemist.  Keep this up for a few weeks - 2 or 3 and you will build up a picture that you can actually show to the Dr.  FWIW in a way I can understand why your GP may think you have Munchausen's syndrome, but she's not paying attention and I'd be inclined to try to see someone else.  I hope she has not put anything on your medical notes which may lead to other Drs within the practice dismissing you without listening.  You can ask to see your notes.

What I think might be happening is that your son's pancreas hasn't altogether given up the struggle yet and that when he gets one of the "episodes" which are indeed the symptoms of diabetic Ketoacidosis, his pancreas kicks in and gives him a spurt of insulin to bring him down.  Also it looks like an extended (honeymoon period).  Please note, that's only my theory and I am not medically trained.

You will find a downloadable diary here http://www.diabetes-support.org.uk/info/?page_id=122http://
You may have to write his food down on a separate sheet.

Please keep talking to us.  I do so feel for you!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline kellyahayes

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Re: Slow/Onset?? Please help.
« Reply #3 on: 01 September 2013, 12:41:22 PM »
Hi my daughter was dx aged 3 but her onset was very sudden. To me if this was my other children I would be very concerned and would probably brace yourself that he is actuallt very probably going to be diagnosed. I completely agree with patti in that ur sons pancreas has not completely given up yet. Do not let the docs fob you off. Please keep us informed as to how you get on
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline Moby

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Re: Slow/Onset?? Please help.
« Reply #4 on: 01 September 2013, 09:47:41 PM »
hi claire, the advice you have is spot on. just to nail it  though.

tomorrow morning test his bg before breakfast, give him what he normally has for brekky, test him one hour after he eats then after another hour. write down what he has eaten and the results.

When he is high make sure he gets plenty of water down. read this link too.

http://www.diabetes-support.org.uk/info/?page_id=797

as a parent do what you have to do to look after your child. plead, beg shout stamp your feet whatever!dial 999 as mentioned before.

hope you get it sorted. If the worst does happen, please come back and let us know, we will try and help you cope with it all.

good luck!
bw
Moby

T2 since 2002.
metformin 2000mg. humalin I and humalog
Xpert graduate & Xpert Insulin Graduate. (for what it's worth)


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Offline everydayupsanddowns

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Re: Slow/Onset?? Please help.
« Reply #5 on: 01 September 2013, 11:48:30 PM »
Hi Claire

I share others concern... But just to point out that home-BG meters are not intended to provide readings by which a diagnosis can be made - they are simply not accurate enough.

It would be good to mention the readings you have observed to your Drs though as they might provide useful clues to back up the lab results.
Mike

Type 1 since: 1991 Last HBA1c: 45 (6.3%)  Total Chol 5.0 (1.9HDL / 2.8LDL / Trigs 0.7)
Pumping NovoRapid in a MiniMed 640G
Blogging at: www.everydayupsanddowns.co.uk

Offline nytquill17

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Re: Slow/Onset?? Please help.
« Reply #6 on: 02 September 2013, 05:51:26 AM »
Just to clarify, unless the meter you're using is faulty and displaying false readings, some of the readings you are seeing (10+) are clearly signs of a problem, lab accurate or no.  Accuracy could be a question if you were seeing the occasional 7 or 8, but when his readings are that far out of range, you don't really need hair's breadth precision (again, barring the possibility of defect).  But the point about accuracy is a good one in that it is unlikely that you can get someone to diagnose him based solely on your home readings; they will want to do their own lab tests to confirm officially what you're seeing at home.

All the same, any reasonable person, when presented with the readings you have and the symptoms, should sit up and take notice. I second Moby - do a detailed, structured set of records to take in to show what his blood sugars are, when (particularly in relation to his last meal) and in relation to what foods. That'll be lots of useful information for them to go on, and it will show diligence and presence of mind on your part, which makes them less likely to write you off as "overly worried mum".
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline clairexxx25

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Re: Slow/Onset?? Please help.
« Reply #7 on: 02 September 2013, 09:13:30 PM »
Thank you all so much for your replies, Help, and support. Its great to have people understand and to talk to.

I havnt got no ketone strips. But i will definatly go and buy some. And do the diary of levels and what his intake was. I tested him before i went to bed last night, around midnight he was 10.1. But i think my best bet is too do what you all have advised, being a diary and readings.

Hes always had a behaviour issues, but since his readings have been above normal his mood swings are all over the place this last week or so!.

I keep and eye on his weight due to previous weight loss, he either looses, gains a little or stays at the same, He was 19.4kg hes now 18.5kg so not a big amount,

Im just not sure how to approach the doctors, There 1st question is 'Why are you home testing your child' Which makes me feel a little silly, and question myself as to why. but with how strong my feelings are, i cant help it, Watching him have these episodes and for him to be in so much pain, as a mother its the hardest thing to watch.

Can i mention tho, ive read, Thirsty.. toilet alot, But he doesnt do that? Am i correct in saying that he would be? Or is that when/if the pancreas completley give up? And levels rise ALOT higher?

I really hope he hasnt, or it isnt the start of diabetes, But i just cant stop worrying, His a1c had a reading of 5.9 In january, when he was ONLY getting high readings during an episode. Now hes had a week of nothing below 6.7 during the day highest being 15.1, I just have this feeling if they was to just do another hba1c he would show above 5.9??

Please dont take all this as i want him to have this, I really dont.. Each night i go to bed worrying, what if he has an episode while im asleep.. what if this, what if that... Im just worried and scared, And with the high readings etc, this is all i can think. I just dont know how to get the doctor to trust and listen to me.

Offline Libra

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Re: Slow/Onset?? Please help.
« Reply #8 on: 02 September 2013, 10:13:05 PM »
Claire before I was dx T2 I used to have a dry mouth (not overly thirsty) and drink small amounts quite a lot, I didn't go to the toilet often maybe 2 or 3 times a day but i did pass loads of urine when I did go, I never got up in the night to go either.
Jenny
Dx Type 2 in October 2004

Meds currently - Ramipril (10mg), Lantus, Novorapid, Forxiga & Fenofibrate



HbA1c @ Dx 12.3 - lowest it has been 5.4 - most recent 80 (9.3)

Offline nytquill17

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Re: Slow/Onset?? Please help.
« Reply #9 on: 03 September 2013, 04:18:02 AM »
When I was going through getting my thyroid diagnosed, I said: "It's not that I hope to have something wrong with me. It's that I already KNOW something is wrong with me and I'd like to have an idea what it is - and even better if that is something manageable with treatment."  Same is true for diabetes, you don't hope for it, certainly, but when you are already feeling so ill, it's a relief to know that there really IS a reason for it, and what's more, that feeling better is possible.

I don't hope your son has it either, but I do hope a reason to his feeling so ill can be found so he can start to feel better. And you too.

As to the thirst, for me it grew and grew overtime. At first it wasn't that noticeable, just an extra trip to the water fountain here and there at school. To the point that I don't actually know when it started, no one really noticed. By the time I was diagnosed I couldn't go more than a half hour without having something to drink. But it took me a few months to get there. I found it to be sort of a "snowball" experience - slow to start, but picking up speed as it went. Thing is, nobody really knows how far ahead of diagnosis the diabetes symptoms actually start. In T1s, we can track the symptoms over weeks or months, in T2s sometimes for years. But there really isn't a lot that's known about those early stages, and yet we're getting to a point where it's easier and easier to detect problems in blood tests almost before they start. So there aren't a lot of medical guidelines how to approach something that is definitely there but hasn't reached a clinical level yet, and that seems to be where you and your son currently fall.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline sedge

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Re: Slow/Onset?? Please help.
« Reply #10 on: 03 September 2013, 10:47:36 AM »
Claire
 
There's a bit of your post that seems to have been ignored in the rush.
 
Diabetes does not cause pain.
 
I'd actually be more worried about that myself.   
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline nytquill17

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Re: Slow/Onset?? Please help.
« Reply #11 on: 03 September 2013, 11:32:55 AM »
Not to be a naysayer but I can get throbbing headaches with BGs that are either shooting up or dropping. And when I had DKA I had kidney pains so sharp I couldn't take a proper breath, I had to breathe shallow enough that my chest didn't expand or I'd have been doubled over, had to be given oxygen to compensate.

But Sedge makes a very good point that I'd lost sight of, these episodes he is having of pain and not being able to move are not in among the typical symptoms of diabetes. They may be among his personal symptoms; many of us have odd or atypical little things that we get when BGs are high that you'd never find in the literature or know about at all unless you were talking with actual diabetics. And high BGs can do strange and unexpected things to a body (hot feet, kidney pains) but don't lose sight of his original pain episodes in case they are a sign of something else.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Pattidevans

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Re: Slow/Onset?? Please help.
« Reply #12 on: 03 September 2013, 12:04:41 PM »
Quote
Can i mention tho, ive read, Thirsty.. toilet alot, But he doesnt do that? Am i correct in saying that he would be? Or is that when/if the pancreas completley give up? And levels rise ALOT higher?
There is a level called the renal threshold, which is around about 11mmol in most people, and it's only if levels are above that for any length of time that you'll get the thirst because the kidneys will be flushing themselves out to remove the glucose in the blood.  So people can have levels below that, but still above normal and not have those symptoms.

Under normal circumstances diabetes isn't painful, but as Nytquill says, it could be his personal symptoms.  I also had kidney pains right after diagnosis but my BGs were in the 30s then.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans