# Fits etc



## morgans-mummy (Mar 24, 2010)

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?


----------



## gewatts (Mar 24, 2010)

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.


----------



## Adrienne (Mar 24, 2010)

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.


----------



## am64 (Mar 24, 2010)

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


----------



## morgans-mummy (Mar 24, 2010)

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.
> 
> ...



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!!!


----------



## Tezzz (Mar 24, 2010)

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!!!



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.


----------



## morgans-mummy (Mar 24, 2010)

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?


----------



## bev (Mar 24, 2010)

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
> ...



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


----------



## morgans-mummy (Mar 24, 2010)

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!!!!


----------



## bev (Mar 24, 2010)

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!!!!



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


----------



## sasha1 (Mar 24, 2010)

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


----------



## Kei (Mar 24, 2010)

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!


----------



## morgans-mummy (Mar 25, 2010)

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!!!


----------



## Adrienne (Mar 25, 2010)

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


----------



## morgans-mummy (Mar 29, 2010)

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


----------



## am64 (Mar 29, 2010)

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



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


----------



## bev (Mar 29, 2010)

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



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


----------



## morgans-mummy (Mar 30, 2010)

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


----------



## morgans-mummy (Mar 30, 2010)

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!!!!


----------



## pinkpig (Mar 30, 2010)

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


----------



## bev (Mar 30, 2010)

morgans-mummy said:


> 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!
> 
> ...




Hi,
Have they told you what the delay is? Surely its just a matter of ordering the sensors for the CGMS? It really shouldnt take long! Do they normally use their CGMS for other children at the clinic? They must know how to get hold of the sensors? This isnt good enough as your little girl is suffering for no reason.

What is their reasoning for dithering about the pump? Your daughter has tried injections - dont work for her - if they got their act together you would know whether its hypos causing the fits or whether there is another problem. 

To be honest, I would be livid about this, and if you cant get her on a pump then you must ask for MDI as mixed insulins just dont work - they are phasing them out as they cause hypos late morning and highs late afternoon! You need to tell them what you want for you daughter - not the other way round. At the very least, they need to get the CGMS NOW - and also get her onto MDI - NOW! They are there to support you and advise you. They dont sound as if they are doing that. Do your clinic have many pumpers there? Perhaps they arent pump trained?

I cant help with the MRI as i dont know enough about them or how long you should be waiting - but it does seem a stupid amount of time to leave a child having fits! Are you going through the GP for this MRI or the clinic? Perhaps you could ring your GP and tell him whats happening?

I dont blame you at all for being angry - you have every right to be. You are a great mum just trying to get the best care for your child and dont let anybody put obstacles in your way. Could you ring them back and ask why there is a delay or do you have email contact?Bev x


----------



## Adrienne (Mar 30, 2010)

morgans-mummy said:


> 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!
> 
> ...



Well I'm p***********d off as well for you.

Sorry I didn't reply yesterday have only just looked here.   

Ok the pump -  Your consultant is wrong.   It is not up to you to secure funding.  The pump is about that much and the consumables (canulas, insulin reservoirs etc) are about ?1000 to ?1500 per year ish.   However lots of hospitals do it differently.  Some hospitals buy the pumps themselves and the PCT fund consumables.  Some hospitals get the PCT to fund the lot.  Either way is ok.

However if your child's HbA1c is over 8.5 you automatically qualify.  If she is having unpredicted hypos which are hard to control or if she is scared of hypos etc etc, she qualifies, this is all under the NICE guidelines.

If a consultant writes to a PCT telling (not asking) them that their patient is going on a pump then the PCT HAVE to fund the pump and consumables (or just comsumables, whatever is being asked for).  They CANNOT say no.

You are 100% within your rights to tell your DSN this.  I hope I have got in before she rings you.   This is totally right, I'm not making it up.    

I hope that helps.   Ask anything and I'll see if I can help with pump questions.


----------



## Adrienne (Mar 30, 2010)

Ring your nurse back or consultant and tell them about the NICE and PCT and funding etc etc.


----------



## morgans-mummy (Mar 30, 2010)

the clinic is at Barnsley District Hospital where she sees the diabetiic nurses and the consultant - the consultant is aware how long we have been waiting for the MRI as he was the one who requested it.

He has basically said that he wants to see what the cgms shows before he goes any further on the pump! so i now have to wait until they get there arses in gear for these probes to come so she can go onto this monitoring.

the nurse said well i will tell the the doctor that you are expressing concerns regarding this- so that was it i went off on one- my words been " I am NOT expressing concerns I AM tellig you that I am very annoyed with how the situation is been handled"

im lost as to where else to turn or what else to do! i feel like just managing the diabetes myself as i seem to do a beter job than them - i feel like not getting back in contact with them now and just going to the MRI scan and attending the EEG when it eventually comes back through for a second date going back for the results so wound up!


----------



## Adrienne (Mar 30, 2010)

Yep I would be wound up too.    

You do know you can change hospital don't you?   You can easily transfer to a better one.   You may have to travel but lots of us do.   I do a 6 hour round trip in a day to get to our brilliant hospital, 3 three and three back, worth it all the way and Jessica thinks so too.   There are now 14 from my area who do this same trip.   There are loads of people in the Children with Diabetes email group who have now transferred to get better care.

Just say the word and I'll do my best to find you the best hospital nearest to you, who don't bother with mixes, MDI and pumping all the way.  No pressure if I find out, its your call, your family, I'll just help if you want me to.


----------



## morgans-mummy (Mar 31, 2010)

well it appears that one diabetic nurse does not know what the other diabetic nurse is doing!!!
they have said about the cgms that they have recieved the probes but would prefer not to start it until after next wednesday as they are on holiday!!! what a joke told them its not good enough and that i want it doing sooner
waiting for a call back now!


----------



## bev (Mar 31, 2010)

morgans-mummy said:


> well it appears that one diabetic nurse does not know what the other diabetic nurse is doing!!!
> they have said about the cgms that they have recieved the probes but would prefer not to start it until after next wednesday as they are on holiday!!! what a joke told them its not good enough and that i want it doing sooner
> waiting for a call back now!



Well done for ringing them back! If you dont ask you dont get. Lets hope they can get your little girl on the CGMS sooner than next week - after all diabetes and fits dont take a holiday. Let us know what they say.Bev


----------



## morgans-mummy (Mar 31, 2010)

well i have emailed john davis and within 1 minute of the email been sent he rang me!! hes made me feel loads better and told me to be reffered to Leeds Hospital to see a great pedatric doctor 
made me feel much better after having a chat with him


----------



## Adrienne (Mar 31, 2010)

Excellent.  John Davis is an absolute star and comes through rain or shine.  He is right Dr Fiona Campbell at Leeds is second to none.   The Leeds clinic and UCLH (London Prof Hindmarsh - where we go) are the top clinics for paediatrics in the UK.  We have found none better than them.   I have met Fiona Campbell last year and I heard her talk at the Friends for Life Conference.  She is lovely.  She is kind and gentle and softly spoken but boy she does not pull any punches when it comes to the kids and diabetes.  You would be much better off at Leeds.  

If you don't want to ask your consultant for a referral, you can ask your GP to do it for you.  

Good luck and I hope you get an answer about the CGMS.


----------



## morgans-mummy (Mar 31, 2010)

i am going to make an appointment with my GP and ask to be referred to Leeds and it is Fiona Campbell that he wants me to go and see - i feel strangly reliefed that someone has finally listened to me!!! 
i know you guy have on here but it dont seem the same as when you here someone actually tell you that your not failing your daughter and that the nurses should be giving you more attention!!


----------



## bev (Mar 31, 2010)

morgans-mummy said:


> i am going to make an appointment with my GP and ask to be referred to Leeds and it is Fiona Campbell that he wants me to go and see - i feel strangly reliefed that someone has finally listened to me!!!
> i know you guy have on here but it dont seem the same as when you here someone actually tell you that your not failing your daughter and that the nurses should be giving you more attention!!



Wooopeeee! So glad you are getting somewhere now - this situation could not have gone on. Hopefully your GP will do the referral ASAP and you can get your little girl the help she needs. Do let us know how it goes.Bev


----------



## Adrienne (Mar 31, 2010)

I should have added that whilst Leeds and UCLH are the greatest, there are other hospital who are great and aspire to be like the other two.  Bev's hospital for instance seems ok.  They were a bit hard to persaude to start with but our Bev worked her magic and the consultant and nurse now work with Bev and in my eyes that makes a great team.  They are learning.   I know they asked Bev what makes a good pump start, so they clearly want to learn and get it right. 

I just wish that all the other hospitals out there stop mucking around and get clued up as well.

Morgans-mummy, you are a great mummy, you have sought to find help and better care for your child, what gets better than that eh  !


----------



## am64 (Mar 31, 2010)

good luck with Leeds Morgans Mum xxxx


----------



## Gemma444 (Mar 31, 2010)

Hya Morgan Mum 

Sorry to read that your little one is not well and good on you for fighting it all the way. Getting off mixes is best and getting a pump is fantastic and I hope you win the battle. Im trying to get my son off mixes. fingers crossed in a weeks time he will be on MDI. 

Have you got the date for the MRI brough forward? they should not make you wait that long for a scan for a little one having these sort of problem. I can't offer any advice really and i see adrienne and bev are helping ( like they are for me, they are a great help to many and i don't think they realise how great they both are) but just wanted to say your a fantastic mum and keep fighting...

Gem xxx


----------

