Hi l posted well over a year ago after my lovely little girl suffered a 'fit', then had another 11 month later, and then had one 7.10a.m this morning :( l woke early for some reason and she happened to be sleeping with me l turned over and thought for a split second' why is she making faces at me?' poor little mite went white she was shaking badly and frothing at the mouth :( then the froth was tinged with blood! I nearly freaked and shouted for my partner to get an ambulance (hosp told us to ring for an ambulance if it happened again) lve just popped home to get cleaned up and take some things back. Im really scared her little tongue is bitten to bits and so sore my poor baby girl sob she had a eeg done after the last 1 and it was ok..... this week shes going to be given sleep deprivation and have test done then lm so scared .. what happens if shes in bed alone and it happens and l dont hear her? Its possible just before xmas she had a fit(that would make todays her fourth) we heard some noise went in her room she was vomiting in her sleep and we could not wake her very scary my partner had to climb on a chest of drawers to get her out of her high bunk you lot are amazing how do you cope? I didnt panic too much this time but l did when l took a breather out of the hospital l cried my eyes out! The docs have been great and we dont want to give her medication because these arnt regular 'fits',, sorry if lm rambling dont know where the heck l am so now it looks like l will be here alot more and share my time between the thyroid board (me /graves) and this board learning as much as l can thank you al for listening and anyone who remembers me how do you cope with this? When its your little children?

So sorry your little one had another! Hoping they can get this figured out and fine the right med for her!

Hi Kayak :) l remember you from the first time l posted lve just done a search on this topic .....2003 was the first time l posted seems like a lifetime ago thanks for your kind words and help x niecsey :wave:

I'm sorry to hear about your little girl. This can be very tough to go through, especially when it's someone so young and the seizures are the grand mals that you are talking about. The main thing I wanted to tell you is that you can't be afraid to put her on meds. I know that people try to use drugs for everything these days but when it comes to epilepsy, they are needed. Seizures tend to get more frequent and sometimes more severe when gone untreated so you could save yourself and your daughter undue stress by starting her on something while it isn't a regular occurance. Also, if gone untreated for a long time it can cause problems with brain shrinkage, memory, etc. PLEASE talk to your neurologist about getting her started on something. Good luck and remember you will get through this. :) Hang in there!
Dawn

Hi, I am so sorry to hear your daughter had another seizure. I know exactly what you are going through right now- my daughter is 16 months old and she just started having seizures last October. She has had 5 so far, each time they are further apart. The second came 2 weeks after the first, so when 2 weeks came and went after the second I felt more relaxed about it, and then she had another the thrid week. So after 3 weeks passed after the thrid week, again I relaxed a little. The the fourth came about 5 weeks after the fifth! So you get the idea. I completely lost my mind during the first seizure because we thought she chocked to death on something. With the seizures afterwards, I have managed to barely keep it together. I start shaking, turn white as a ghost, my mouth goes dry and I just hold her and cry. I, too, am wondering how everyone copes. At what point do you relax about it? Because the doctors and nurses tell me that "it's more painful to watch than it is to have one. they are not dangerous". I am so paranoid about her having seizures in her sleep because I read somewhere that she is a greater risk of SIDS due to this. She has not slept alone since her first seizure. We also did not want to put her on meds but we have had 2 different neurologists tell us that seizures beget seizures. 1 said that the brain will remember how to seize and may do it just out of memory, and so it is best to try to control them and hope her brain fogrets how to do it. We have her on Trileptal now. The doc wants to keep her on it for a year and then take her off and see what happens.

All in all, I concider my family lucky. She is a beautiful, sweet little girl. And she is helathy. I think as parents we need to find a way to come to terms with this, becaue I know if I keep freaking out about it and obsessing over it I will just make it harder on her. The only way to teach our kids that they are just like everyone else is to treat them as such.

Well, I just wanted to tell you that you aren't alone in the world and to share a little of my story/experience with you!
Emily

Hi all sorry l havnt been it ouch earlier as im unwell myself :( (graves and really bad dizziness at mo) well doc told us because there infrequent it would be best if we ddnt start any meds because of the side effects etc and the way it changes the personality.... shes very very intelligent independant gorgeous and cheeky l wouldnt want to change that lol l have not recieved the letter that l should of for her to have the sleep depriving tests yet!! I was told we would be in hosp tonight but lm still waiting in away lm glad cos l feel so ill right now with my thyroid probs ad now really bad dizziness its alot ot take in and 1 day maybe we will undertsand how everyone else copes l hope we do, lm sorry but lm really dizzy right now and cant stare at the screen its making me feel wozzy l will try and come back tommorow thinking of you all and sorry again that l havnt the energy to post all l want to say take care all xxx luv niecsey x

Hi all sorry about my last post the typos are terrible lol lm not as dizzy now :) well tonight is her first night in her own bed since the 'seizure' last Saturday morning lm exhausted as shes been sleeping with me and boy has she been restless! Normally she lies in one position and shes in the same position next morning but all this week shes been all over the place and l havnt slept much...her appointment to see the doc is Monday (not the hosp appoint. it hasnt turned up yet for the tests!) but when it does arrive she wont be happy as she hates missing school. I think shes a bit scared about been in her own room tonight so ive let her friend sleep over too :) no doubt l will be in and out of room all night...how you all doing? l will try get back on later and post somemore take care all xxx love niecsey

I sure hope the appointment goes well! Sorry you have been so sick as well!

Hang in there with it all! Hope the testing goes through soon!
Ginny

Hi all docs booking her an MRI scan sometime in the next few months and hes chasing the sleep test up (must be busy no spare slots) so l feel a lot happier somethings now been done :) last night l had a sense of 'doom' come over me and l was so anxious about what exactly lm unsure but l went in her room and brought her into my bed lol (dads going to get used to sofa hahaha) lm still feeling ill so im going to see about me this week l cant carry on like this it will prob be my meds antithyroid drugs been too strong sigh felt like this the last time the got put back up l cant seem to find my ideal level ground never mind l day at a time som they say thanks for replying hope your all well xxx l will keep you posted xx

Hi all hope your well ((((hugs)))) just a little observation lve made......... since she had the 'seizure' ive noticed when shes sleeping shes very very restless now and the other night my partner and my self witnessed her two arms moving together very fast... l dont know if this means anything but it didnt look right to me it was like fast motion drumming her arms were slightly in the air l dont know if lm noticing more because shes in my bed (l cant help it lm too worried) and ive noticed one night her 2 feet jumped at same time like when your falling asleep and you jerk and ive also noticed it with her hands once or twice do you think she is having mini seizures in her sleep? or am l been too ' mam like' lol lm shattered even though shes sleeping with me l cant help worrying another thing lm probally been paranoid about is her breathing whilst shes asleep seems at times to be really slow l cant describe it anyhow l will leave this episode for now and hope to hear from you all soon take care xx luv niecsey :wave:

Hi all the school nurse has just rang me to notify me shes been informed from the hospital and to make a careplan for school to which l suggested that as her parents we would rather go to the meeting at school than just post forms. Thats another comfort to me and she reassured me if anything happened at school they would know what to do including probally ring for an ambulance ooh gawd l hope she dont at school :( everyday is bringing more questions to my mind, im scared incase she starts getting bullied about it name called, mind if she does l would blow my stack lol ) ive told very few people to avoid her been singled out...example l was in a shop other night and l heard 2 women talking about there poor neighbour who has regular fits and refering to her as a freak!!! OMG!! These were growing up women!!! If l heard anyone calling my girl a freak ld go beserk oh sorry im running off topic here my heads all over AGAIN lol just an update take care all xx niecsey :wave: