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SN children

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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

OP posts:

dizzy34 · 04/09/2007 09:36

Sorry, that post should have said never got below 200 seizures per day, not 20.

Bethron · 04/09/2007 17:38

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needmorecoffee · 04/09/2007 19:32

Hi Bethron. My DD had infantile spasms at 11 weeks but we cured them so we were very lucky.
Dizzy - I'm so sorry. I didn't realise your son had a terminal condition

lourobert · 04/09/2007 19:45

Hi Dizzy. I too remember reading Harrys blog when my son was first dx with IS back in April 06 and Ive just gone back and re-visited now. You truely are an inspiration and Harry is adorable. the photo of him in his dtanding frame made mehuckle as my ds has the same one and also hated it at first but seems to like it now...!!

HI also to Bethron and NMC. NMC I hope that your ds is doing ok, thoughts are with you.

Original poster

trace2 · 04/09/2007 20:21

oh dizzy am so sorry i feel like i should not complain, Truly you are an inspiration and again a very brave lady!

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Original poster

trace2 · 04/09/2007 20:29

right i didnt want to tell you under same sentace as other one, that was just for dizzy.

pead came today, said chloes eeg was clear so shes not fitting{ so what the hell been happing to her? ) am sorry its jusy she as been brought out of them with meds and worked, so what happens now i just cried not because i wanted some thing to be wrong its cos we still dont have an answer, i asked if we can see dr ritty at sheffield which we are now tomorrow, but what if he says same? i just dont know where to turn, where do i go from here wait to see if she as an other big one? but yet they gave us dizapan to bring home, and we are going in our own car as not enough nurses to come with us.

i just needed to get this off my chest

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Bethron · 04/09/2007 23:34

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Bethron · 04/09/2007 23:36

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needmorecoffee · 05/09/2007 07:06

Have they caught one of those fits on an EEG? Like leave the wires on for 48 hours.

Original poster

trace2 · 05/09/2007 07:48

Bethron how did they come to decide they were sezures ( i know you know but), and are they treating with meds, and what do sezures look like?

needmorecoffee they should have a few on there as she was on for 48 hours

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Bethron · 05/09/2007 08:31

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Bethron · 05/09/2007 08:32

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Original poster

trace2 · 05/09/2007 08:35

thank you, we going now to see dr ritty hes the nuro speclist, ill see whot he says, we have it all wrote down, ill tell later if not to upset

OP posts:

Phoenix · 05/09/2007 12:26

trace, i hope u get good news from the neuro today. Ring me if you need anything.

heartinthecountry · 05/09/2007 14:01

Hi trace - I've only just picked up this thread. Will drop back in later to see what the neuro said.

My dd1 has IS - they started when she was about 3/4 months old. Your description of the nurses not recognising the seizures sounds very familiar.... I am still often the only person who notices when dd1 has a seizure, but there is no doubt that she is having them.

Pursue this. You are her mother and you know something is wrong. I know of countless parents who have been told their children are not having seizures when they are.

From what I can see, and admit I skim read, you still haven't had an MRI. Demand one.

If your dd is having IS then you need to get her on vigabatrin or ACTH asap. I don't want to scare you but it is really important.

This is a very scary time you are going through. Hold in there.

heartinthecountry · 05/09/2007 14:07

If it is helpful I can post descriptions of dd1's seizures - mild and strong.

Original poster

trace2 · 05/09/2007 19:05

hi all nuro says shes not having sezures from what he can tell, so i asked what she was having he says proberly reflux, i just burst out crying i know there is some thing wrong but dont know what, but he says he wants to see her in 6 weeks( but why if its nothing to do with her head) got back to barnsley told nurses we want to go home if thery dont think its happing , they asked pead and he said he wanted to do ph study for 24 hours to rule it out, i think this pead beleives shes having sezures, as he as seen some of them, so shes in now till friday .

ive come home i feel ill now shaking,sick, i think ive got what jack had on friday.

again ill update as soon as and again thank you all you all going through so much but still find time to reply

OP posts:

Phoenix · 05/09/2007 19:39

Oh god so you're still none the wiser

saggarmakersbottomknocker · 05/09/2007 19:51

Oh bloody hell trace. Sorry that you are no nearer to an answer. You must be so fed up with it.

sputnik · 05/09/2007 20:43

Could you maybe try and get the paed to talk to the neuro? Sounds like they're not communicating very well. You must feel so frustrated.
Don't forget to take care of yourself too. Love to you, Chloe and the family x

Original poster

trace2 · 06/09/2007 07:54

hi sorry went to bed felt so ill, dd was treated for reflux once befor it did not stop it happing, i think the nuro had made is mind up befor we enen went there he said he had been in touch with the othr pead, one of docs who brought chloe out of one of her fits saw me in lift put her arm round me told me i know its sezures, but am not big enough for them to beleive me, i have put it all in notes. and i went to my gp yesterday asked him what i should do he says vidoe main ones even though your pannicing and then we will go to an other nuro

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BigBearistheBigBear · 06/09/2007 08:03

Trace, have you asked the neuro/paed if it could be infantile spasms?

Original poster

trace2 · 06/09/2007 08:17

yes he said that they deff not he said it would have shown up on 24 eeg

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heartinthecountry · 06/09/2007 13:07

trace - so sorry you aren't getting any answers and it seems you are having to fight to be taken seriously.

I really believe that a mother knows the difference between reflux and a seizure.

I know it is hard but stay in there and keep pushing them. videoing is a good idea. Try and get those that do believe they are seizures to advocate for you too.

Original poster

trace2 · 07/09/2007 08:07

mir booked for next friday wayhay!, but she as a tube down doing ph probe pherthy for for reflux, but sister came on ward yesterday and said she carnt belive they saying its reflux again( she says its sezures) am not saying she has not got reflux but i do know its sezures. they stopping the vit b on sunday leys see if they start again, as chloe as been sezure free now for 5 days, shes so much more smiley great to see.

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