Advice please urgently on epilepsy in ds 7 months

[caitlinnjacksmummy]

Hi , I need advice.......waiting on my son being referred to paeds as he is taking seizures. These are mild, we were first told it was rflux as he just appeared to be gasping for breath to start with, now 2 mnths on as he comes out a sleep he is moving his head from side to side, his eyes are rolling and he clicks his tongue, he is then not with it, conscious, but not with it for a couple of minutes, then as he is coming out of it he gives a great big smile. Is this epilepsy? Help and advice needed. Thanku xx

Hi,

They do sound like seizures but you obviously need a medical opinion. There are so many forms of epilepsy, some are easily treated, others like my sons are not. Feel free to email me if you have any questions as i have quite alot of experience of living with a childs epilepsy and dealing with the (sometimes unhelpful) medical professionals. My email is [email protected]

It does sound like these could be seizures. Seizures can be different for different people but what they ususally have in common is a loss of or altered state of conciousness and involuntary movements. I agree that you won't know one way or another until you get a medical opinion. I'm sure the peadtrician will be a good start but really a neurologist will be the person to give a proper diagnosis. Some medical professionsal don't really know that much about seizures so better talking to the experts. Remember if you think something is odd or strange then it probably is. My ds has epilepsy. When I described some of his seizures the hospital staff felt they could be reflux but really in my heart of hearts I knew that what I was seeing looked 'wrong'. Of course as soon as they saw one they agreed. Sometimes people will try to fob you off or not believe you but stick with your instincts and get an assessment from the experts.

If your child is having seizures you will be on a steep learning curve and in for a time of a lot of uncertainty. This is quiet hard. Every child is different and epilepsy is more a symptom than an illness in itself. For a lot of children the cause of their epilepsy is unknown. A lot of children outgrow epilepsy in later life. What will be important for you to find out is 'is there a reason for my child's epilepsy and if so what does that mean'. Just a word of warning about the internet - some of the information is very scary and a lot of it may not be relevant at all to your child. I definitely have to try not go down the road of worst case scenarios. You can spend so much time worrying that you forget about the lovely baby in front of you. easier said than done.

In our case my ds is 1 now. Has had seizures from birth. We had 5 months seizure free under medication. then a pretty crap summer seizure wise with 1 week of seizures every day then maybe 2 weeks seizure free. Now they are becoming less frequent again (1 every 2/3 weeks). So we're hopefully that they will become more controlled. It's very hard with a baby because their brain is changing all the time and this can lead to changes in the type and frequency of their seizures. With ds we do not yet have a reason for his epilepsy - his MRI was clear (looks for issues to do with brain issues before and during birth) and he doesn't appear to have any meabolic disorder or syndrome that's been identified. Maybe he just has epilepsy and we'll never know the reason. He's been a little slow at some of his development but he's actually not that bad and I am hopeful he will fullfill his potential.

Our life has not been a total nightmare. DS is a lovely happy baby and attends a creche (who are all brillant and are his second mammies and have dealt with fairly scary looking seizures). However sometimes it is a nightmare - when you're waiting for results and when you're worring things won't be ok or if you're worring about your baby not reaching some of their milestones - this was a big thing for me during the summer but things have improved a lot in the last 2 months - of course that can reverse again - so much uncertainty. I've also got to ride in an ambulance to hospital more times than I would have wished. But we have definitely gotten better at coping. The seizure aren't scary anymore but they are always very upsetting (for me) and physically tough on ds. It is defintely a rollercoaster.

Best of luck in your journey.

Sounds like seizures to me. My dd started seizures at 3 months, always on waking. First they said it was reflux (ahem) but the EEG showed it was infantile spasms. There are a number of epilepstic syndromes that start in the first year and some of them can delay learning if not treated quickly. Don't want to scare you but I'd push for the neuro and an EEG. It could be infantile spasms. Hopefully it isn't.

please push for an EEG ASAP so you know what it is your dealing with, the the sooner he can get the medication should he be requiring it.

you might have to be pushy but you need answers and you need them now!!!!

Hey everyone!! Iam back, my son had his appointment at hospital, still sayin he has bloody reflux!! Jus don't buy it!! But the dr sed he would like me to video more episodes on my phone and transfer them t dvd and send them t him so he can get opinions from other dr's so OBVIOUSLY he isn't sure!! I had taped an episode on my phone and showed both my gp, who reckoned they r seizures, but wen a showed the dr at the hospital, he sed it didn't look like epilepsy then in the next breath, he sed they r very similar n hard t tell!! So i am very confused, since my son has bn back on reflux medication his episodes are more frequent and worse, now i m getting angry about it all. He is now 8 n a half months old. please advise me these always happen on waking, dr also sed usually babies lose consciousness but i no this is def not always the case!! xxxx [HMM]

Don't know why they always say 'reflux'. I get terrible reflux yet never wake doing anything that looks remotely like seizures!

hi my dd is only 22 weeks old, she started at 3 weeks they said she had reflux gave her meds and been in and out since birth hers have changed many times, but nuero says hers are not epilepsy but she had loads in hospital all nurses and docs there thought she was having fits, they even g\ave her meds to bring her out of them, her nuero is not in same hospital so he just see the videos we try and catch not usaly all the fits.
we still have no idea as shes does other things too now like posturing for about 8 hours each time. but alnight my dd is moving from side to side her head about evey hour also she pulls some funny faces any one who didnt know would think its a baby thing i asked last week our pead hes a gasro one is this reflux? he says no he still thinks they are fits, she as reflux we have done a ph probe, and she had eeg one clear one not, amd a mir scan that was clear.
i hope you find out soon . its horrible waiting seeing our children like this.

Thanks everyone, i am gonna try get appointment Again with my gp in the morning, I am sooo not happy bout the reflux diagnosis!! Anyone else who has advice for me then pls pls pls feel free to get back to me, I would really really appreciate it, thankyou again xx

I think I would just mention Infantile Spasms to get it into their heads. IS is often overlooked because many docs never see it but its extremely serious and needs treating as soon as possible.

Thanks needmorecoffee, i feel like i am wasting my time with the drs, a jus have a feeling my son is not right xx

I was told dd's weird movements were reflux, then were cos of her CP, then, I hassled and complained a exagerated so got an emergency EEG and lo, classic infantile spasms pattern. Docs didn't apologise though.

No of course they wudn't apologise! That's drs for u. I am so fed up bout it all, not a lot a can do til a see the dr xx

Hey everyone, just to let you all know, I have just called the dr's office who saw Jack at the hospital, and his secretary sed that once Jack's notes are there then they will call me with an appointment xx

good hope you dont have to wait to long

Hiya all!! Well the dr from the hospital called me and sed Jack will b gettn an eeg so waitin for that t come thru, does it take a while?Xx