so, hi, i'm new, and looking for advice

[misspiggy]

I kind of feel a bit of a fraud being on here as we've not been told Kayson actually has E, but the lovely Julie added me, and i'd be really greatful if anyone of you had any views on what happens to little man...

When he was about 5months old, he had his first 'fit' (i call them fits as i dont really know what else to call them) he closed his eyes, brought his hands to his head, shook like he was cold and then cried for about 30minutes after...we were told by NHS to 'put it down to one of those things' and he 'amy never had another one' and to be honest, that was that....

Kay turned 1 in July, Just before his first birthday he had another one...unfortunately i only saw that last of the episode (shook like he was cold, eyes closed and stiff, followed by hysterical crying for an hour after)

Seeing the tail end of that one, has lead me to believe he had one in the night at about 10months old.....

2 weeks ago, he had another one, shook like he was cold, eyes closed hands clenched then (as usually he was sitting down when having them) he tried to walk to me, and he was like a little drunk person couldnt get to me properly, then we had the hysterical crying...

and again another one yesterday..
and another today, although not as bad and the crying after only lasted about 10minutes

we are being referred to a pedeatrician (just a general) which i assume we will just get asked loads of questions and go from there...

I just hate being in the dark, the GP refuses to give me any idea what it could be and i feel so sorry for little man, he hardly ever cries, and to hear him cry like that after is worse for me, than the actual 'fit'.......

Please feel free to ask any questions...im trying to keep a diary of what happens to him to give the GP, but even a small idea would be nice to keep me out of the blue.

 

[Nakamova]

Hi misspiggy, welcome to CWE!

Don't feel like a fraud! CWE is a great place for information and support, especially when you are still trying to get a handle on what's going on.

Keeping a diary is a good idea. It will help doctors understand your son's symptoms, and gauge whether they are changing in any way. Be as detailed as possible. From your description it sounds as if the episodes are increasing in frequency, so you are right to be concerned. In your diary make note if possible of any other factors that might be playing a role -- fatigue, diet, illness, etc. -- and/or of any patterns you may have noticed.

What you describe could possibly be focal seizures with muscle spasms. If this seems likely the pediatrician will (ideally) refer you to a pediatric neurologist and schedule a variety of tests -- blood tests, EEG, MRI, CT scan, etc. I suggest you ask that the blood tests include a thorough nutritional assay to look for any deficiencies -- sometimes low amounts of things like magnesium can play a role.

IF it is some kind of a seizure disorder (and it may not be), there are all sorts of treatments, and many folks "grow out of" childhood epilepsy. But for the time being keep doing as you are doing -- ask a lot of questions, be persistent about getting them answered. And ket us know how it goes with his pediatrician.

Best,
Nakamova

 

[misspiggy]

thankyou hunni, and thanks for the friendly response...i feel terrible posting when im not sure its E lol....

And thanks, i'll have a little trawl and see what that comes up with, its just nice to have a name to something, and not just be left with nothing hoping they'll tell us something eventually lol.

Yeah they are getting more frequent, and i cant figure out why. nothing really changes, i try and keep a settled routine, so who knows lol xxx

 

[Nakamova]

It's worth being patient -- I know it would be great to know exactly what's going on, but you don't want to end up treating for epilepsy if you don't have to. Your son could be experiencing benign paroxysmal shuddering episodes -- these can can look like focal seizures but are not epileptic in nature. You can read about this kind of thing here: http://www.ncbi.nlm.nih.gov/books/NBK7302/