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Original poster

dd is 10weeks old having seizures, having tests to see whats causing them, but

154 replies

trace2 · 22/08/2007 17:20

how do i cope? been given diazepan to put up her bum when shes in them longer than 5 mins, waiting to see lots of specialist, what do i ask my minds all over the place at the moment! as any ones little had these since being so young? please i need to know i can talk to some one

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gess · 31/08/2007 20:52

She's absolutely gorgeous btw.

You said earlier she got worse after the 8 week set of jabs. Ask lots of questions before they give her anymore- pertussis (whooping cough) vaccination is contraindicated for those with seizures (or always was, they say the new for is safer, but I'd want proof from them). They can be given more than 4 weeks apart so don't feel that you have to rush to get the next lot.

BigBearistheBigBear · 31/08/2007 20:53

I think you and DH both need to be there when you ask for her to be transferred, so you can back each other up and not feel intimidated - I know how easy it is to just agree with medical professionals.

Is she coming round in between seizures?

This is horrendous for you, and all I can really do is send you lots of hugs. People here care about you and Chloe, and can offer you lots of support.

Original poster
trace2 · 31/08/2007 20:56

i also heard chloes staff nurse say to doc i dont even know if shes having them! thats why the pead came and he as said if we dont know any thing by middel of next week he will phone dr ritty and say what do we do now? i can not understand why they didnt do it today

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saggarmakersbottomknocker · 31/08/2007 20:58

I understand trace. You can't get them until Monday - in the meantime I think Bear is right, can you and your dh ask them, together, to transfer her to the childrens?As long as there is a bed there's no reason they can't do it over the weekend.

Original poster
trace2 · 31/08/2007 21:01

thank you but the chloe in the pictcure is changing, the most shes comes out is to strech a second them back in, then her body twists to the side,, the pead piched her up and said why she holding her self to side, i said its part of sezure

OP posts:
saggarmakersbottomknocker · 31/08/2007 21:01

If you're unhappy to wait trace then ask them to ring sooner. They'll have a neuro on-call.

Original poster
trace2 · 31/08/2007 21:03

so from 9 this morning till this afternoon she was in and out with no meds, them when she finaly came round she was wide awake looking round and isaid to nurse now can you see a diffrence? she did admit it

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Original poster
trace2 · 31/08/2007 21:05

s childrens hospial only take children on nuro from referal so we can not just take her, am going to see how shes been in night even though ill not sleep

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BigBearistheBigBear · 31/08/2007 21:10

I'm certain you can demand to see a neurologist and be given an update. There is always a paediatric neuro on duty.

My DD had seizures at birth, although not the same thing. At first you are in shock and cannot believe that this is happening to your LO, but in the end I think the pushier you are the better care your DD will get.

You need to be firm but polite and demand some answers or to be filled in on what THEY know. As Chloe will always be your DD but she is their patient for just a short period of time.

2shoes · 31/08/2007 21:10

trace2 so sorry you are going through such a terrible time. dd started having fits when she wasbout 5 and It was the scariest thing I have ever lived through(she has cp).
I can't really offer advice as dd is on paraldahyde not diazepam, but the one thing I have learnt is that I know best. sounds pompous but sometimes the staff at her school/doctors and nurses will try and do things their way. I now say NO.
so If you think your dd is still fitting. tell them they are wrong(i have heard that this happens a lot)
you dd is beautiful.

Phoenix · 31/08/2007 21:34

Awwww Trace, i've got no idea what to say. Like every one else has said just demand to get over to Sheffield. (((((((hugs))))))

Huge get well wishes to Chloe from all of us x

mymatemax · 31/08/2007 21:42

Trace, sorry you are going through this,as you & the others have said you know your dd best so you may have to be firm to get whats best for her.
It is very hard to challenge the experts when your dd's care is in their hands BUT you know your dd's history - all they have is some sometimes poorly kept notes & their observations at that time.
If they can't give you any answers, don't know the best course of treatment or can't guarantee you that delaying your dd's specialist care will not cause her any harm then they really must transfer her NOW.
I hope you get something sorted & your dd gets the care she needs, take care.

needmorecoffee · 01/09/2007 08:41

Gods Trace, I know you must be at the end of your tether. It sounds like non-convulsive status seizures and complex partials to me. Buccul medazelan (sp?) is another rescue drug if she can't have diazepan.
Every time she has a fit you must call them in by shrieking help by the door. Thats what I did. At first they wouldn't believe DD had infantile spasms and kept saying it was reflux. I was so bolshy I was afrid I'd get accused of that Munchausens thing but finally we got a decent paed who took one look and had her on steroids that evening.
Wish I could help but I'm stuck in hospital with DD who is on injected steroids for more bloody seizures.

r3dh3d · 01/09/2007 09:11

Jeez, trace, this must be driving you crazy. .

Has she been seen by a neurologist yet? Or even by a paediatrician who specialises in Epilepsy? Unless you have a simple and straightforward case, your average doctor knows sod all about Epilepsy ime. Even if it takes a while to get her transferred to somewhere with a specialist, I know locally our hospital can escalate neuro cases by doing phone consultations with the regional neurology team who really know their stuff - so just because there isn't a neuro on tap doesn't mean they should be sitting on their hands.

I'd agree with NMC about what it sounds like - all sounds horribly familiar from your descriptions - am I right in thinking you've had an EEG which came up blank? Unless she actually had one of these seizures during the EEG that proves nothing, DD1 has severe drug-resistant Epilepsy and her first 3 EEGs came up blank. So don't let them tell you that because there's nothing on EEG then there's nothing going on. Have they done a sleep EEG yet? More likely to get a result and fairly easy for them to arrange at short notice though not always fun to do.

Original poster
trace2 · 01/09/2007 21:06

again thank you all for your advice!

needmorecoffee so sorry about dd again sounds like its never ending is it, you have been a great help to me since you first saw me asking for help.

r3dh3d yes dd first eeg came up with ibconclsive! but was only on 20 mins, this last one was on 48 hours so heres hoping not got resluts till next week.

anyway to was a better day i went in first thing this morning asking to see the big pead, but he was coming to see me about some thing,anyway i told him about the nurses and how they made me feel and about dd was in and out of sezures from 9 am till 2 pm and the nurses would not beleive me untill i asked to see doc which by this time dd was just coming out of fit she was still bent like an banana to left side stiff( this happens coming in to one or coming out of big one he said he as told staff they have to listern to me, and i told anout disapan i read in notes its still to be given, then a nurse walked in an older one who knows chlo say no matter what then notes say we will give larasapan or pyr some thing shes had both both ok. i asked about moving to sheffield but he says hes in touch with dr ritty the nuro and he says hes fully booked to see her but hes the one telling them what to do.

chloes been great today alert wide awake no sezures at all that we now of, but thats the usual after big one she as a few days rest we expect them to resrat on m onday.

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Original poster
trace2 · 01/09/2007 21:12

oh thank you phonix for lending dh your psp and video camrera

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Phoenix · 01/09/2007 21:22

No problem Did dh like the games?

Original poster
trace2 · 01/09/2007 21:36

yes but dropped them and went as dh was shouting at ds as per usual

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Phoenix · 02/09/2007 18:50

lol trace, dh just read you're last post and said she better not have dropped my psp. I said don't be stupid she means dropped off

How has she been today?

Original poster
trace2 · 02/09/2007 20:14

lol, she only had a little sezure then pooed , but she still been quiet happy

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saggarmakersbottomknocker · 02/09/2007 21:48

Glad she's had a better day trace.

dizzy34 · 04/09/2007 01:15

Hi Trace,

Just wanted to let youknow that i know how you feel. My ds harry started having seizures from birth and at one point he was having well over 200 per day. We are lucky that our childrens hosp have an a& e dept and we just turned up there. we have a fantastic neurologist, one of the best epilespy specialists in the country. After numerous tests, scans, ultrasounds, eegs, chromosone tests and metabolic tests harry was diagnosed with Malignant migrating partial epilepsy of infancy, it is one of the most devastating forms of epilspsy as the children never speak, never walk, never move their arms, cant hold their heads and lose the ability to eat. The condition is resistant to medicines and boy have we tried all the medicines, we now have none left to try! Rectal diazapam, and buccle midazalam only work for 30 mins max.

I was lucky as my other children are older and i could spend all my time in hospital with harry. He went in at 13days old and never really came out for about 8mths. My best advice would be to read, read and read more about epilepsy and about the drugs and other treatments available.Harry has tried the ketogenic diet and also has a vagal nerve stimulater fitted.
Have a look at harrys website, www.harrysjourney.co.uk

I hope you get some news soon. I know you will feel at times like you cant cope, and there are days when you are so down, but you will cope and you will come out the other side. I found that i grieved, for the child i thought i was having and for all the things harry wouldnt be able to do, and i think i needed to go through them stages to reach acceptance that i have now. sorry if im rambling a bit.

needmorecoffee · 04/09/2007 07:23

Hi Dizzy. This is a 'have you tried' post that you're probably sick of! What about ACTH? And there's a new drug coming in November to treat intractable epilepsy called Inovelon.
Its on our list after ganaloxone (another new drug) if the ACTH (2nd course) doesn't shift my daughters 'possivble' lennox-gastaut syndromepattern.

Original poster
trace2 · 04/09/2007 08:16

hi dizzy! you not rammerling, my dd is not as bad as your son( well not as many sezures a day unless we miss some) but i realy think you are very brave mum ,i uderstand what you saying about looking into every thing but as yet we dont realy know what to look for, i have tried comparing dd sezures to other on website but she as so many diffrent ones. and as needmorecoffee say have you tried what she says, she been a fantasic help to me

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dizzy34 · 04/09/2007 09:35

Hi coffee and trace,

We havent tried acth as it has been shown not to work for Harrys condition. Two of the other children with it tried it and were worse after it. We are now at the point where we do not want to subject him to more side affects. We have a palliative care dr who is helping us to make him comfortable and helping us with end of life decisions. we are just sorting out his pain relief as he has unspecified pain. We have been told that harry is terminally ill and that we will prob have him till he is about 6-7yrs. He was about the 13th in the world with the condition when he was diagnosed, although there are about 30 now (only about 20 of them still alive). Two little boys of 18mths died in dec and feb. They never got below 20 seizures per day. We are lucky as harrys bad days are now about 50 seizures. we get help from claire house childrens hospice, who care for terminally ill children. To be honest, the seizures are the least of our problems. Harry gets double pneumonia about 6 times per year, and needs to be admitted for oxygen. we will poss need this at home soon. His bowels and stomache do not work properly. He has a mickey button in his tummy which we feed him through but will now have to look at a gj tube which will feed him into his lower intestine not his tummy. He has just been diagnosed with kypo scoliosis which means that his spine is twisting and moving over pushing his lungs and heart and comprimising his breathing.

But having said all that, he is an angel. He doesnt cry and so loveable and cuddly.