Posted: Fri Oct 23, 2009 10:53 pm     Post subject: My Toddler is going through diagnosis

Hello,

Thom my little boy, well when he was 9 months old he had a very shocking febrile* convulsion that lasted over 20 minutes.. since then he has had 12 other convulsions, some without fever... He also has what they have termed drop attacks and absent seizures. He has these on a daily basis.

I have a brain-wave scan in York in a weeks time [ECG]. The pediatricians seem pretty certain he has epilepsy.

I really need support -- my little baby can't have epilepsy?!? Although I think perhaps the perception of diagnosis is worse than the actual situation... Although he has fallen down the stairs with it already, twice infact. Having to be abit obsessive safety-wise.....

Anyway, hello...

Posted: Sat Oct 24, 2009 5:34 am     Post subject:

Hi Fiona welcome to the forum, thinking of you & your son take care luv Juliexx
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JulieC

Posted: Sat Oct 24, 2009 4:11 pm     Post subject:

Hello Fiona, sorry to hear about your son.
I can imagine how much you worry about him.
Hopefully you will get some answers after the tests, let me know how things go

Posted: Sat Oct 24, 2009 10:59 pm     Post subject:

Thank-you.

I have been thinking about this quite abit throughout the day. I posted this last-night as we'd just come back from hospital after an odd and frightening seizure... it's strange though, you take them to a&e and a few hours later he's up and about playing, laughing, talking... and I feel like abit of a fraud for being there with a seemingly perfectly healthy little boy.



Anyway, just wanted to know what is involved in an ECG?

Posted: Sun Oct 25, 2009 9:33 am     Post subject:

Hello Fiona, how old is your little one now? I hope you are all ok.
Did you mean he is going for an EEG? That is the one for the brain where you have discs glued onto your head. They do various tests like flash lights at you then they monitor your brain's reaction to it. It takes about half an hour i think. An ECG is for your heart.

Posted: Sun Oct 25, 2009 9:30 pm     Post subject:

Sorry, Yes EEG -- Very tired, I have a newborn baby as well. Well, I saw newborn, he's 6 months.

He has just turned Two-years old. I'm more wondering what they'll do for my litte boy, will they need to sedate him?

Last edited by fiona on Sun Oct 25, 2009 9:48 pm; edited 1 time in total

Posted: Sun Oct 25, 2009 9:43 pm     Post subject:

Another thing is.

Thomas has absent seizures 10+ times a day, atonic seizures twice a week and then the cliche seizure [I apologise my knowledgy on this subject is limited and not sure on names. ] about once every 4-6 weeks... Well the latter he had on Friday. And the way he came out of it was just, well strange...

His seizure lasted sometime, he was clinging to a highchair [stood up, not sat in it] and I didn't think anything of it as my younger child was sat in it and I thought they were just interacting... anyway I came back in realised he was still clinging to it, and saw his eyes were rolled back and he was shaking... when I managed to ungrip his hands he started jerking more violently so I layed him on a duvet on the floor, he went white and his feet and hands tinged blue slightly.

This is what confuses me -- Eventually he stopped, but usually he immediately bursts into tears but he just looked at me... confused... his toes were wriggling continously and he kept putting his foot to his mouth. He was also hitting me rhytmatically. He couldn't talk, or make a noise... infact he was moving his tongue alot and making a clicking noise... He frightened me quite alot actually as lots of awful thoughts went through my head.... He did this for well over an hour, eventually he was violently sick, said a couple of words and fell asleep... About three hours later he was running around, and generally back to his normal happy self...

I know there's no normal way of coming out of a seizure. But, I just don't get what he did???

Posted: Mon Oct 26, 2009 4:37 am     Post subject:

Hi Fiona....welcome to YE.

All of this can be very shocking and nervewracking, I can imagine what you must be going through right now.

At the present it sounds like they are going to do an awake eeg so no I don't imagine that they will be sedating him as they will want his brain waves to be on the same pattern as they usually are.

At this point I had better not delve into your other post as I would hate to misinform you, hpefully someone will come along with more knowledge about that particular episode!

In the meantime come back often, ask questions, we will try to answer them all and by all means browse the rest of the site.

Posted: Mon Oct 26, 2009 3:50 pm     Post subject:

You poor thing, you are going through a really tough time at the moment. So is your little one. He is having an awful lot of seizures. One thing i suggest you do is try to video these seizures if at all convenient with a camera or mobile phone camera. You can then take these videos in as concrete evidence to show the paediatrician. It will be so handy for them to see as much as possible of what is going on. The more they see, the more they can help as it is very difficult to know what to say to them when they ask what happens.
It would help if someone else videoed whilst you made sure he was safe so that you won't be worried about that.

The hospital will then hopefully be able to put your mind at ease for a bit and the neurologist can tell you what is going on in his little head.
By doing this they know you mean business.

Lots of love to you,
Keep asking lots of questions as there are many parents on here with children with epilepsy.

Posted: Thu Dec 24, 2009 5:29 pm     Post subject:

Hi Fiona, haven't visited website for awhile. Hope things are improving for you all and especially for Thom. Has he had his EEG?

Catt9
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Hi I foster a boy with autism, recently diagnosed - Complex partial seizures. Taking lamotrigine - currently on 100mg a.m. & 125mg p.m. Has limited ability to describe what he is going through/how I can best help ... which is where you all come in!

Posted: Sun Dec 27, 2009 5:05 pm     Post subject:

Sorry for not seeing this sooner. I hope by now you son has had his EEG and you have some answers.
Take care
Sue.xxx
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