• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • Screening for type 1 diabetes: We now have a new forum section which is for parents who, after having their child screened for type 1, have received a positive result that at some stage their child will be diagnosed with type 1 diabetes. Where possible, please do offer your support and experiences of having a child diagnosed. https://forum.diabetes.org.uk/boards/forums/screening-for-type-1-community-chat.59/
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Fits etc

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

morgans-mummy

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi all
I ma new to the site , thought I would sign up after my mum had spotted it!!

I have a 5yr old daughter Morgan who was diagnosed with Diabetes in Nov 2007. Morgans bloods have never fully settled and was swapped not long after she was diagnosed from Mixtard 30 to Novomix 30.
Morgan has had a few hypo's but nothing uncontrolable.

My main reason for posting really is to see if anyone else has a child who does the following :

1st episdoe
wakes after been in bed around 2 hours screaming that someone was in her bedroom & would not calm down, took her down stairs and she was screaming the same man was in the living room (scared the hell out of the rest of the household) - after about 2 hours of trying to calm her down she eventually calms down and goes back to bed. blood levels are fine throughout.

2nd episode
wakes up screaming- i go upstairs to find her cornered in her bedroom and wont let me near her, scared to death - took me around 45 min to calm her down again blood levels are fine

i spoke to the doctors who told me she was probably having a night terror until:

morgan wakes crying - she tries to tell me whats wrong but cant speak, i get her a drink shes still crying but everytime she tries to speak to me her words come out all jumbled up and i cant make no sense - i check her bloods there fine - then i realise that morgan can not lift her left arm this goes on for quite a few hours and all i can do is comfort her!

about a month later the same thing happens again although this time morgan tries to walk but her left arm or left leg wont work and she cant speak- she fell over into the door and blacked her eye.

the whole time her bloods have been fine- this has happened no end of times and all the nurses say is to monitor her every half an hour and keep testing her blood - which have never been low.

the "episodes" have become more frequent. Morgan was told that she would need an MRI scan to find out what has been going on in her head, that was after trying to convince the nurses that it wan't in my head!!!

so we were put on a waiting list for an MRI scan...... we waited.... and waited,.... and waited....the episodes continued....

then in janurary morgan had a fit.- her eyes were rolling into the back of her head- her jaw locked - foaming at the mouth - and shaking uncontolably... 999 were called and a trip to the hospital - morgan received an EEG scan later that day which picked up something but they dont know what.! her blood levels again fine

2 week ago morgan was in bed with me when she woke me by saying she needed a wee "but couldn't move" i had to carry her to the toilet her bloods were again fine.

last week a friedn was looking after morgan and she just stood and wee'd & then on monday of this week she did it in front of her class at school and got uite upset about it. I called the nurse who asked me to go to hospital we did this and after her been checked we were sent on our way

the doctor spoke about her needing the MRI scan as they thought she could have some kind of cist growing on her brain. The earliest we can have a scan is 26th April (still a month away)!! until then i just have to keep an eye on her

Has anyone had anything like this before?
 
My goodness - you are having a rough time. Sounds very scary. Our non-diabetic daughter is epileptic and when she was first diagnosed it was horrific. We didn't know what was happening to her. I can't believe that you've got to wait so long for the scan. I hope it all goes ok and that you can find a reason for the "episodes". Bigs hugs to you.
 
Gosh poor Morgan is going through the mill, I hope that she doesn't have any more episodes before the MRI and I hope they sort it out.

I can say that when Jessica has had fits, she can see someone in the room behind me. That is quite common apparently. She looks right past me, really freaky actually but even though she can't remember the fits, she can remember seeing someone.

Also she had had a fit where she has foamed at the mouth and jerked her arms and legs in funny positions. She was 1.7 and I gave the glucagon injection.

Fits are not always jerky movement though. Jessica used to have fits which took the form of just starting and not moving. She would also spout rubbish sometimes and other times just collapse or her head would loll as if going to pass out.

But each time her levels have been low.

How often do you test her? I say this because it has been known that people can go low and be on their way up again whilst fitting. This could be a possibility here perhaps.

Also have you ever had a CGMS fitted onto Morgan?

We also started on Mixtard but that was rubbish and we moved onto novomix 30. We had a CGMS fitted for a few days and it clearly shows that Jessica was going hypo in between the times that I tested her at night. We changed back to Mixtard and the same things happened. We went onto MDI immediately it became available and did not look back. She now pumps.

Have you thought about testing lots and lots for a while, hourly or hour and a halfly? I would ask for a CGMS to be fitted and see what happens.

I hope you get to the bottom of it.
 
i cant really help you but had to send a big hug to you both and welcome to the forum xxx hope this gets sorted out xxx
 
Adrienne said:
Gosh poor Morgan is going through the mill, I hope that she doesn't have any more episodes before the MRI and I hope they sort it out.

I can say that when Jessica has had fits, she can see someone in the room behind me. That is quite common apparently. She looks right past me, really freaky actually but even though she can't remember the fits, she can remember seeing someone.

Also she had had a fit where she has foamed at the mouth and jerked her arms and legs in funny positions. She was 1.7 and I gave the glucagon injection.

Fits are not always jerky movement though. Jessica used to have fits which took the form of just starting and not moving. She would also spout rubbish sometimes and other times just collapse or her head would loll as if going to pass out.

But each time her levels have been low.

How often do you test her? I say this because it has been known that people can go low and be on their way up again whilst fitting. This could be a possibility here perhaps.

Also have you ever had a CGMS fitted onto Morgan?

We also started on Mixtard but that was rubbish and we moved onto novomix 30. We had a CGMS fitted for a few days and it clearly shows that Jessica was going hypo in between the times that I tested her at night. We changed back to Mixtard and the same things happened. We went onto MDI immediately it became available and did not look back. She now pumps.

Have you thought about testing lots and lots for a while, hourly or hour and a halfly? I would ask for a CGMS to be fitted and see what happens.

I hope you get to the bottom of it.
Click to expand...

Hi sounds like you've had a rough time too!! morgan is at school so her bloods can't be monitored more than what i do already through the day and ive had weeks of 12am and 3am testings but i am a single mum with a 3yr old too so getting up so many times each night becomes exhausting
i have never heard of a CGMS????
and also what is MDI???? and what do you mean she pumps? sorry for all the questions!!!
 
morgans-mummy said:
Hi sounds like you've had a rough time too!! morgan is at school so her bloods can't be monitored more than what i do already through the day and ive had weeks of 12am and 3am testings but i am a single mum with a 3yr old too so getting up so many times each night becomes exhausting
i have never heard of a CGMS????
and also what is MDI???? and what do you mean she pumps? sorry for all the questions!!!
Click to expand...

CGMS is a continuous glucose monitoring system takes readings at regular intervals to show trends.

Pumps means using an insulin pump. The size of a pager. It trickles insulin into the body throughout the day and night at different steady preset rates.

MDI is multiple daily injections. (Usually) One basal (background) injection and bolus injections (usually) before eating.
 
Last edited:
morgan is now on novo rapid before each meal 1 unit of insulin to 30 carbs
then she has lanus on an evening around 7pm each day

i forgot to add that to my first post

so if i ask my diabetic nurse she should be able to get me th cgms?
 
morgans-mummy said:
morgan is now on novo rapid before each meal 1 unit of insulin to 30 carbs
then she has lanus on an evening around 7pm each day

i forgot to add that to my first post

so if i ask my diabetic nurse she should be able to get me th cgms?
Click to expand...

They should have one at clinic for you to use for 1 week to test overnight levels. My son is on an insulin pump and we have much better control than when he was on injections. His hba1c has gone down from 9.6 to 7.1 in 6 months on the pump!

Given what is happening to your daughter - your hospital should be offering you a cgms asap. You really do need to know what is happening when she is fitting, like Adrienne said, it could be that she is very low and the fit and her liver dump brings her up so by the time your testing her its higher - but its a false reading if you see what i mean. A cgms would tell you all this information.🙂Bev
 
i will def be in contact with them tomorrow - i am trying to do as much research on different things so that i can ring them and im armed with information and they cant just fob me off as like i said before i think they think half of it is in my head!
just had tea her blood was 6.4 around at 4pm all she has had is small snack - 1 piece of french toast, and a small yoghurt and her blood has shot to 20.4!!

seriously fed up with diabetes!!!!
 
morgans-mummy said:
i will def be in contact with them tomorrow - i am trying to do as much research on different things so that i can ring them and im armed with information and they cant just fob me off as like i said before i think they think half of it is in my head!
just had tea her blood was 6.4 around at 4pm all she has had is small snack - 1 piece of french toast, and a small yoghurt and her blood has shot to 20.4!!

seriously fed up with diabetes!!!!
Click to expand...

I hope you get some answers for you and your little girl - this really cant go on and they should be offering the CGMS. Let us know what they say and if we can help we will.🙂Bev
 
Hi Morgans-mammy

I'm sorry to hear your little girl is going through so much ... and yourself ..

Although Nathan (my son) is type1 diabetic ... It is me who is epileptic .. diagnosed 7years ago .. in my early 30's .. although my consultant seems to think I had been epileptic for much longer .. and the fits had been missed.

If I can answer any of your questions regarding epilepsy I will .. so please feel free to pm me anytime or post up on here.

Heidi
xx🙂
 
No advice to offer, but just wanted to send big hugs to you and Morgan. It sounds as if you're both having a scary and upsetting time of it. I hope the scan clarifies things when she finally has it, and that the clinic can lend you a CGMS for a while to help work out what's going on.

BIG hugs to both of you!
 
well just phoned my diabetic team , there going to get back to me today about the different types of insulin & the cgms 🙂 thanks for that information guys! she did seem shocked that i knew all this!!!
 
Hiya

That is great news. If they don't get back to you, bug them, it works, ring again tomorrow.

I have found from my many friends that the more you know, the more that some hospitals actually start listening, so keep asking, we'll all keep trying to help and hey presto you should get sorted somehow.

Take care
 
well we went for our appointment on friday, the doctor spent sometime looking at her and talking to me
he has said he wants the cgms fitted so were waiting for the probes he has also said that he would like her to go for another eeg scan as he thinks there could be some kind of epilepsy
and in regards to the pump we have to see if we can get funding for it as the machine that she would need is ?3000 and about ?130 per month maintenance
 
morgans-mummy said:
well we went for our appointment on friday, the doctor spent sometime looking at her and talking to me
he has said he wants the cgms fitted so were waiting for the probes he has also said that he would like her to go for another eeg scan as he thinks there could be some kind of epilepsy
and in regards to the pump we have to see if we can get funding for it as the machine that she would need is ?3000 and about ?130 per month maintenance
Click to expand...

dear morgans mum success !🙂 lets hope you can get to the bottom of all this so at least you will know what you are dealing with xx good luck xx adrienne is very knowledgable about the pump situation im sure she be able to assist you xxx I hope thats ok Adrienne !! 😉
amx
 
morgans-mummy said:
well we went for our appointment on friday, the doctor spent sometime looking at her and talking to me
he has said he wants the cgms fitted so were waiting for the probes he has also said that he would like her to go for another eeg scan as he thinks there could be some kind of epilepsy
and in regards to the pump we have to see if we can get funding for it as the machine that she would need is ?3000 and about ?130 per month maintenance
Click to expand...

I think thats great to get her on the CGMS - as soon as possible if they can. This will give you so much information which might help decided whats really going on.
As regards getting a pump - your PCT is NOT allowed to use funding as an excuse - this is in the NICE guidelines - so dont accept this as a reason. If your consultant thinks your daughter will benefit from a pump and you have tried injections - then you fit all the criteria for a pump - this is clearly set out in the NICE guidelines. If they mess you around - contact John Davis at INPUT website and he will give you the information you need to get the pump. The is what i did and our team applied for a pump 6 weeks after my email to them. Basically they cannot say no.🙂Bev
 
thanks Bev that is very interesting to know!!

as soon as i have any more information il post but up to now im prettty much still in the dark!
diabetic nurse is spposed to be calling me this afternoon as she is meeting morgans consultant this morning
 
well am p****d off to put it politely!!!!

just spoke to nurse & they have still not arranged the cgms!! STILL waiting for probes apparently!

and as for the pump they cant decide weather they think she should go on it or not

as for morgans hypo that she has had yesterday night they want me to reduce her tea time insulin by half a unit! myself i think this is pointless effort as most of the time she runs high!!! its an absolute joke- just gone off on a flyer with one of nurses and told her to stop fobbing me off

4 and a half months for an MRI scan we've been waiting this is after the first EEG scan showed something up!
still waiting to be told about another EEG scan which she has apparently been forwarded for
sick of it to be fair!!!!
 
Hi Morgan's mummy, sorry I cant help you as am new to this myself, but wanted to give u a big virtual hug(((((((((((((((((((((hug)))))))))))))))))))) and hope that u & Morgan get something sorted out very soon, from reading the other posts I am sure that the more experienced can help xxx
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top