Infantile spasms/fits
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- Infantile spasms/fits
9/6/08 20:20
9/6/08 20:17
Thanks Sally i will let you know when i get one but you know how long appts take, i don't know what type of scan as yet i just know it is a brain scan so as soon as i find out i will let you know. I am so tired with the disturbed nights sleep, if it isn't that it is the reflux she is in pain with crying out in her sleep. Anyway hope you get your lo sorted out soon let me know the outcome when you get to hear. Sharon x
9/6/08 13:40
Eve saw her specialist this morning,he's added a new med on top of what she's already on,ordered a sleep eeg and a mri scan.Has anyone else had either of these?She was fine getting her eeg and I know she'll be asleep for the mri but how does the sleep eeg work?
8/6/08 23:19
Hi sharon
I hope you get your appnt soon we have been waiting what seems like forever but at least we are a bit further down the line.
Regards Lucys turns,she seems to have them during sleep times or sometimes just after an hour of sleeping and as she is still sleeping during the day then yes she is getting them in the day time too in fact she has had 2 episodes today but she does not stop breathing thank goodness that must be very scarey although her breathing does change in its patterns so I always know when she is in one.
It is very scarey isnt it and sometimes Lucy looks like she is awake but isnt responding to me
Good luck it helps to share with others going through the same thing
Sally xx
8/6/08 23:13
Hi Nathard
Yes its been a long old wait hasnt it and I had convinced myself it was just me being overreactive but now I am swaying towards epilepsy as she does act very odd during these spells.She has not been offered an MRI as yet only the EEG .
I dont know why the episodes have started again in fact the first one she had in ages was on friday just before the scan and it almost feels like I have 2 different babies one who is alert happy and doing very well and then Lucy who is sleepy inactive and vacant.
The only thing that gives me comfort is the fact that it does not seem to be halting her progress as I have heard some fits can so fingers crossed if it is epilepsy then it will hopefully be mild.
Thanks for asking and how is your little one doing now have you started to wean her off the meds yet?
Sally xx
8/6/08 20:14
Gosh Sally - it seems to be taking ages to get some answers on Lucy. I'm sorry the 'funny does' are creeping back again - hopefully it won't take two weeks
Ellie wasn't too bad with her EEGs - she's had three so far and been a good girl for all, but then she was only 6 - 7 months and because of everything that was wrong very placid.
What kind of scan is your little one having Sally? If it's an MRI they generally sedate or knock them out for it...
8/6/08 14:17
Hi Sally thanks for that they tried doing eeg whilst she was in hospital but she wouldn't let them i don't know how they are going to scan her brain she is 15mths and a lively one at that, they did ecg wouldn't let them do that either they managed to get a 1minuite scan of her heart which they said looked ok, i am waiting appt but it is strange watching your baby do this it doesn't seem real does Lucy have them through the day or night? Hope they sort Lucy out soon it is the not knowing what is going on that gets to you. Sharon x
8/6/08 12:38
Hi everyone and welcome Sharon what you describe is quite a lot like the episodes that Lucy has.
Lucy had her EEG and she hated the probes on her head bless her she cried throughout.The scan picked up some extra activity on the left hand rear of her brain but was not conclusive without a more detailed look at the results so we now have another 2 week wait to see what they say.
Lucy had stopped having the episodes for a while but over the last few days they are creeping back in again.
Another wait on our hands but hey this is the way its been with Lulu all along so I guess we just have to keep our fingers crossed
Sally xx
7/6/08 21:17
Just wanted to say hi to everyone and good luck this week. Look forward to hearing how you get on
*hugs*
7/6/08 20:47
Hi ladies i hope you don't mind if i join you also. My dd is due a brain scan at jimmys in leeds that is my local hospital. I have read all the posts because at the moment i don't know what to do my daughter is having seizures but it is in Rem sleep it is always after 1.00am in the morning a few times she has stopped breathing the last time i took her to hospital. They asked me what woke me up i said i don't know i just woke and knew something wasn't right. She wasn't breathing and very floppy i kept shaking her to bring her around but after a good minuite or more she breathed but then just looked at me then went back to sleep as if nothing had happened since then she has had a few of these episodes not as bad but i have also noticed a few times i have seen her spasm all her body jerking. I am going to video her tomorrow night as i am not working on Monday and can catch up on my sleep. Zoe also has severe reflux she is now 15mths old i am very sleep deprived. I have read somewhere that allergies can cause seizures......So it could be allergy i don't know i am really worried now as she is also having blank episodes in the day where she will just sit and stare i will wave my hand in front of her and she doesn't even blink or register when i am calling her name. I am sorry for waffling but i need to get it off my chest before i blow. Hope your lo's are ok now. Sharon x
7/6/08 08:49
hi ladies,hope you don't mind if I join you.My 2 year old dd has epilepsy,she had her first tonic clonic seizure on the 21st Dec last year,she's had a few more since and also has loads of absence seizures every day.Its been very hard to control as the drugs she's been on aren't working at the mo.She's off to hosp on monday to see a specialist in "difficult" epilepsy.Her EEG came back clear so she'll prob need more in depth tests done.
Its lovely to read of all the support you give each other,lifts my heart to read some of the messages.
6/6/08 16:47
hi ladies
please see the thread 'thanks nathard' for an update on my lo and a thank you to you guys for your support x
3/6/08 10:21
hi folks
well justices eeg came back as normal...which is good news
butr i still dont know wat causes the spasms??? am hoping the consultant will still see him for further investigations but she calledf and said she will let me know soon 
2/6/08 21:12
Hi, Yes Harry is on Vigabatrin, witch is doing wonders, Harry is much more settled than before and I have not seen him fit since he was put on the med's. We have to go back to hospital on Thursday as he as to have a lumber puncture and blood tests for a viitamin deficieancy so I will let you all know how he goes on. Hope every body eles is doing well Hugs to all Adele1/6/08 21:57
Hi to all of you
I am sorry i have not posted for a while but with school holidays its been hectic.
At last i have an appointment for Lucy she has her EEG on the 6th of this month.
She is still having her episodes but mostly I notice how sleepy she is.
Hi to the new mummys on here and good luck for Justices results I hope they turn out to be good news.
Sally xx
30/5/08 22:37
Hi isobel, thanks for letting us know how yo ugot on with harry. I agree sorry to have it confirmed but at least it's been picked up and can be treated. What drugs is he on * just out of interest). Eleanor needed steroids and is still on vigabatrin.
30/5/08 21:20
hi isobel, i am sorry to hear your lo has epilepsy, but at least you have a diagnosis and he is getting the right meds etc, i hope they help and he is happy, i have still not heared from the consultant about the results of justices eeg! he has had a few more spasms so i called them and they said they wold call back but they havent!! grrrr!
will have to wait till monday now i guess...having said that he has been a little angel today all smiles and gurgles, i just want to know what is causing these spasms asap
hope everyone else is ok
30/5/08 19:50
Hi All, just got back from the hospital and Harry does have epilepsy and is now on medication, got to go back next thursday for some more tests as they are testing for a vitamin deficiency. Just hoping that the med's Harry on don't send him back into hospital as they can make him very sleepy. hope every one else is doing well (hugs)29/5/08 18:41
Thanks hun, I will do next time. I didn't think it should be like this!!
28/5/08 17:11
sorry fr the rant - having a bit of a 'bad' time atm. But it's none of the receptionist darn business what oyu want to see the doctor - if they refuse to get you an appointment, then ask for their name ready for the complaint (!)
Hi Callie it sounds like they will put all the probes on whilst she is asleep if that is when she is having seizures then it will show up so they can see what type she is having. I think i am no expert, but i have seen one done before. Hope all the test go well. Sharon x