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SN children

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Original poster

I feel like the crapest mum in the world

19 replies

buzylizy · 20/01/2006 09:06

DD had a fit this morning as I was getting her ready for school. It wasn't a major one but after she didn't want to go to school. She had one the other day and I kept her of only to find after about an hour she was fine. So today I sent her. I must admit part of it was she missed a respite night last time and it's respite tonight(don't often have 2 in a week extra one due to her missing one when ill) now I just feel so guilty. I just think if I keep her home every time what kind of life will she have.
Sorry I just needed to talk to someone

OP posts:

mummytosteven · 20/01/2006 09:15

I've not got any useful knowledge or experience of this, but didn't want to leave you unanswered. Don't feel bad - I am sure it's very hard to know what to do for the best. Noone can judge whether if their kid has been poorly early in the morning, they will be OK or not an hour or so later.

tensing · 20/01/2006 09:36

My daughter is Diabetic and has found that having a Hypo in the morning is a good way way to get at a day at home.

You know your daughter and if you know that an hour after a fit she is fine then send her to school. From my limited experience with epilepsy, most are fine an hour or so later.

getbakainyourjimjams · 20/01/2006 09:38

A lot of the children at ds1's school have epilepsy. All the mum's say they carry on around it, and if they stopped everything every time their child had a seizure, they'd never go out. You did the right thing. xxxx

LoonyMum · 20/01/2006 10:03

Exactly, you know your daughter would have completely recovered, don't worry, why not phone the school to ask how she is? I'm sure they will help. If you are ever not sure, just keep her back till she's recovered - then send her to school with a note for lateness.... I'm sure the school will be supportive too.

I have a daughter (2.5yrs) with non-typical febrile convulsions, with epileptic tendencies. Basically when she gets a temperature, she has focal fits as opposed to the 'normal' convulsions, though she can have those too - the episodes don't stop without sestolid(sp?) and shes got some damage to the occipital lobe, the cause or the result of her first non-stop 50 minute fit, who knows - though shes fine - epilim is GREAT stuff!

Hope alls well.

Original poster

buzylizy · 20/01/2006 10:11

Sorry but what are focal fits?
I haveb't heard anything yet so fingers crossed she is ok.

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Christie · 20/01/2006 10:15

This reply has been deleted

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Lacrimosa · 20/01/2006 10:17

IMO you did the right thing as another person said it would not be much of a life for you or dd if you did nothing around fits, I hope she is well and please dont put yourself down XXXX

Bethron · 20/01/2006 10:17

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Bethron · 20/01/2006 10:20

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heartinthecountry · 20/01/2006 12:40

buzylizy - my dd has epilepsy and I am always just carrying on and doing things while she has them (shopping etc). I've even been known to feed her breakfast in the middle of one (she doesn't have typical seizures but intermittent spasms)so that she won't be late for school . As bethron says about her ds, usually she is fine and not even aware she is having it, so I don't see the point of putting her life on hold.

I think sending her to school was the best thing. She'll be fine.

dizzy34 · 20/01/2006 13:56

I agree with the others. We often get funny looks of people when we are out shopping or in a restaraunt, because we deal with the seizure and any complications it brings and then get back to what we are doing. Not because we dont care about ds, but just that he can have up to 150 per day and we would never do anything else.infact, about a 2 wks ago he began to have
really bad seizures every 4 mins, dh was dealing with them, i was on the phone and kids were playing and my cousin who was there at the time was in tears and wondered how we carried on. Dont beat yourself up, i would have done the same

Original poster

buzylizy · 20/01/2006 14:10

Thanks for all your support. it is so good to know that there are people out there who understand I phoned the school and she is fine. Just being naughty but as I said to her teacher whats new :0
She doesn't have that many fits. but is going through one of her phases at the moment 5 in the last week.
It didn't help that she thought she was going to stay home and cried when I said she was going
Does anyone else have to use paraldahyde for long fits?

OP posts:

Bethron · 20/01/2006 14:33

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Original poster

buzylizy · 20/01/2006 16:47

she is on 410mg lamotrogine a day.

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dizzy34 · 20/01/2006 18:32

My ds has medazolam 10mg which is drawn up into a syringe and squited in the buccle space in the mouth, and diazapam rectal 10mg, both of them are for rescue meds. Buzylizy, why is she on paraldhyde? our hosp tend to use buccle medazalam or rectal diaz first. it has recently been proven that buccle works quickest and for the longest in children but it doesnt always work in ds. Daily he is on stiripentol 500mg twice per day, keppra 5mls twice per day. we will shortly be reducing his meds and withdrawing them because none of them have worked for him and he still has the same amount of seizures.

dizzy34 · 20/01/2006 18:42

sorry buzylizy, should have said, only asked why you have paraldahyde because buccle is more dignified to give if you are out and about, not cos i think anything bad about paraldahyde.

Original poster

buzylizy · 20/01/2006 18:50

She has paraldahyde as when she first had a fit. I wasn't there it was at school right in front of her consultant! she was given rectal diazapan. She had a bad reaction to it and stopped breathing. so she was prescribed paraldahyde. It is fine now and works every time.Does stink though. I don't think I would ever be able to put anything in her mouth as she dribble very badly when fitting(i haven't heard of the medicen you mentioned and haven't heard of it being used at her school)I know a lot of nurse ar a bit anti paraldahyde as we have a lot of problems at her school getting staff to train to use it because of what they have heard. Makes me mad as I do it after ten mins "training" and it'e a doddle.

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dizzy34 · 21/01/2006 11:16

weve never had to use paraldahyde, but some of our friends do. At lease it works for you and that is the main thing isnt it? We have found that depending how bad the seizures are, the meds only work for 1-2hrs at the most and sometimes diazapam only dulls the seizures. One little girl with ds condition is 17mths old and it takes lorazapam, paraldahyde, and chloral hydrate to stop her seizures, she is currently on HDU.

Original poster

buzylizy · 21/01/2006 23:19

lucky for us the paraldahyde works, It takes sometimes up to 6 minuits but then she stops fitting, After that though you have lost the day as she just goes to sleep. Another draw back is that it stinks it is like it comes out of their pores and the smell lasts for ages. I got her back toningt and by all accounts she was fine at respite and had a great time.
I must add when she is at home I try not to use it and go by gut instinct once I let her go for 10 mins as she was so aware of whet was going on. she screamed as I got her emergency box. she was fine.

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