RE: [IPk] severe hypo or not?
I am glad to hear that David is improving. Sasha has very obviously
seizures which look just like the seizures that my friends son who has
epilepsy has. There was also a program on television on one of the less
sensational programs about hospitals and included the case of a school boy
who was found unconscious or in a seizure by the mother and was badly
affected and was in hospital intensive care for several days before making a
complete recovery. The boy did look very ill.
Sasha during a seizure, also screams and thinks she is being attacked by
horrible creatures and is terrified. The seizures are quite violent. Later
she remembers very little and says she can't see but can hear things going
I think that with hindsight the general anaesthetic and lumber puncture were
probably not indicated, but then I guess you don't want medics to "always
blame everything on diabetes" when there could have been another cause which
needed treating. I hope that the improvement continues and that David can
come home soon
From: email @ redacted [mailto:email @ redacted] On Behalf
Of Brenda Cookson
Sent: 21 June 2011 23:32
To: email @ redacted
Subject: RE: [IPk] severe hypo or not?
I think the fits present in a virtually identical manner, whether the cause
epilepsy or hypogycaemia and they are called tonic clonic I think. My mum,
died last year, had seizures in the last years of her life. I only witnessed
one and it was nowhere near as violent as the one I witnessed in David.
was much less thrashing aboutt etc and I had to call a nurse in and ask if
what I was witnessing was, in fact, a seizure. She confirmed that it was. I
don't know whether it looked more 'gentle' because of the fact that she was
physically disabled and so frail that she was incapable of moving around as
much, if that makes any sense.
David is much better today. I got a call around 11 this morning to say that
they had ceased the sedation and removed the breathing tube. They said was
coping very well physically but was disorientated and distressed and had
for me. When I went in the first thing he said was 'wake me up, wake me up
mum' so I assume he felt as though he was having a nightmare. He also
that the male nurse was a woman and that all the staff wanted to harm him. I
told him that the nurse was a man and that their gender didnt' matter and
the staff were all there to help him. He asked me how he could believe that
because he didn't know these people. I told him that I trusted them and knew
he wouldn't hurt them and that because trusted me he also had to trust my
judgement and allow them to help them. He said that he would let them do
was necessary but that if they hurt him I would have to kill them all! I
replied that of course I would do that but that it wouldn't be necessary - I
think the nurse was quite relieved about that lol!
The EEG was normal and they have ruled out epilepsy. They have therefore now
ruled out toxins, meningitis, encaphalitis, brain tumour, brain haemmorage,
stroke and epilepsy. They have had input from the neurologists, but as far
I can gather no input from the diabetes team, which I think is a mistake.
very early on they appeared to rule out the possibility that it was 'just' a
hypo and I think they may be wrong. It is well documented that hypos can
seizures and seizures, whether they are caused by hypos, epilepsy, or indeed
any other cause can kill or cause brain damage. Why is it such a leap to
believe that they can also take days rather than hours to recover from,
especially if there is more than one seizure in fairly quick succession?
Also, I think that adding a general anaesthetic, invasive procedures and a
cocktail of drugs to the mix could also have contriibuted to the delayed
recovery. I understand why they did the things that they did and pretty much
consented on his behalf all along, and don't regret that, but I do wonder
whether the outcome would have been the same or even better if they had
treated him more conservatively ie treated the hypos and kept him in for
observation while keeeping a close eye on his bg levels. However, it doesn't
necessarily do you any good to dwelll on 'the road less travelled' too much!
David did ask me tonight if I could guarantee that this would never happen
him again. I told him that I couldn't, but also no one could guarantee that
the same thing would never happen to me or anyone else in the world for that
matter. I said that they will do their best to find out what has caused his
problems but noone can guarantee an answer.
I do wish that, in the absence of any other explanation, the medics would at
least say to him that hypoglycaemia was the most likely cause and that he
needed to be as vigilant as possible over his bgs, especially before bed. I
think he would take more notice of them than he does of me!
The strange thing is that he didn't test before bed that night. We did have
very heavy conversation a few years ago about the dangers of nighttime hypos
and he promised me he would test before bed every night. I saw him when he
came home that night and he seemed fine but I later discovered when I
his meter that he hadn't tested. I wonder whether he was hypo then, even
though he seeemed fine, and that is why he didn't test. I haven't asked him
about it yet though.
He is hopefully going to a 'normal' ward tomorrow, which no doubt will be
going from a 5 star hotel to a dingy b and b, but hopefully he won't be in
there much longer anyway!
Brenda, mum of David, 22
> Date: Tue, 21 Jun 2011 13:01:18 +0100
> From: email @ redacted
> Subject: Re: [IPk] severe hypo or not?
> To: email @ redacted
> Very interesting indeed
> This does seem to be the explination concerning a couple of hypo's Les has
> experienced, he's been functioning but his bloods at been down in the 1's,
> I got him to eat with a lot of ease then a follow up test will say he's
> high 2's, but he goes out at this point! But Jackie's explination makes
> if his spinal fluid glucose levels are lagging behind then this makes
> sense of the flow of his hypo..
> I hope that David is feeling better... Not sure if a fit while hypo would
> similar to an epiletic fit, where the body uses a lot of engery up, I know
> that epiletic even though they've come around and out of the fit it can
> quite a while to fully recover phsyically from it.. One chap I knew
> on the fit it could take another day or so for him to feel right and fully
> recovered, but as I said I don't know if a diabetic fit could be similar
> vien to the epiletic!
> From: Jackie Jacombs <email @ redacted>
> To: email @ redacted
> Sent: Tuesday, 21 June 2011, 11:26
> Subject: RE: [IPk] severe hypo or not?
> This info came from something I read some years ago, by Dr.David Schwartz
> who is a paediatric endocrinologist.
> Kind regards
> Jackie J
> -----Original Message-----
> From: email @ redacted [mailto:email @ redacted] On
> Of Diana Maynard
> Sent: 21 June 2011 10:36
> To: email @ redacted
> Subject: Re: [IPk] severe hypo or not?
> HI Jackie
> That's interesting, I never knew about the spinal fluid!
> On 21/06/11 10:27, Jackie Jacombs wrote:
> > Hi Brenda
> > Is David any better today?
> > It maybe that although the finger stick reading was 3.4 mmols several
> > minutes
> > after the seizure, the glucose level in the brain could well have been
> > previously.
> > Adrenalin released as the hypo was getting worse would also raise the BG
> > levels.
> > The first hormone released is adrenaline; this produces symptoms like a
> > pounding heart rate,
> > Feeling shaky, sick and sweaty. Adrenalin is released to enable the body
> > respond to stress.
> > The hormone glucagon would also be released to "tell" the liver to
> > store of glycogen.
> > If someone has just had a severe hypo and/or has been exercising the
> > glycogen stores maybe
> > depleted. So giving glucagon would not always work. You would need to IV
> > glucose very quickly.
> > After a hypo the BG levels should be left to run a little higher than
> > and glucose/carbs should be eaten to restock the liver stores.
> > The major fuel for energy for the brain (and the rest of the body) is
> > glucose. The glucose is carried by the various blood vessels to the
> > where it must then leave the circulation and enter into the spinal fluid
> > which "bathes" the brain. Most of the time, the spinal fluid glucose
> > concentration is really close to the glucose concentration in the blood
> > stream. But, under the right/wrong set of circumstances, there can be a
> > "delay" in the filtration and recovery/change of spinal fluid glucose
> > relative to the blood glucose level. We sort of measure the blood
> > glucose as a surrogate marker for the spinal fluid glucose because you
> > can't get spinal fluid easily or without harm!!
> > The fact that there can be a time lag between blood glucose levels and
> > spinal fluid/brain glucose is one of the reasons for sometimes finding
> > "normal" BG levels but feeling like crap and shaking from the lack of
> > glucose. This time- lag and the blood brain barrier is also the reason
> > sometimes someone can have an extremely low reading on the meter but
> > and feel fine, though quite often as you start to treat the hypo, the
> > symptoms begin to "catch up" as the spinal fluid bathing the brain is
> > getting low in glucose.
> > Kind regards
> > Jackie J
> > -----Original Message-----
> > From: email @ redacted [mailto:email @ redacted] On
> > Of email @ redacted
> > Sent: 20 June 2011 10:57
> > To: email @ redacted
> > Subject: RE: [IPk] severe hypo or not?
> > Hi Di
> > He did have a seizure when he was on holiday in Bulgaria a few years ago
> > and I have been told that it took 12-24 hours for him to be fully
> > coherent. However, the 24 hours is now up and the second seizure is
> > obviously possibly very significant.
> > The 3.4 reading was immediately after the seizure and I did think that
> > it could possibly have been lower when he seized and he had rebounded -
> > can't remember the exact terminology for all this because I'm not
> > thinking straight! The previous occasion also occurred in the morning
> > before he got up so I would really class it as a nightime hypo, although
> > not sure if that makes a difference orr not.
> > Brenda, mum of David, 22
> > .
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