EEG and MRI for seizures - Update!!

[RebeccaG]

Feeling soooooo annoyed!! Our consultant said he had referred us, well I phoned up secretary to find out he hasn't done it yet!! It's been nearly 2 weeks!! What a waste of time!!! Feeling so angry!!!! ARGHHHHHHHH! Will keep phoning every day until we get our appointment. Really hoping to have it by Christmas.

 

[RebeccaG]

Had our appointment with this amazing guy! He was so pleased with how out little boy is doing and we are planning to wean him off phenobarbitone soon! The specialist said that he is doing really well, the MRI results were fine and would be classes as normal so nothing to worry about there thank god! Guess just a little worried about when we take him off the medication and also getting him vaccinated as I'm sure that triggered all this...

Thank you so much ladies for being amazing! xxx

 

[sun]

So glad to hear this great news!

 

[Marleysgirl]

I am really pleased to hear the good news, Rebecca

 

[RebeccaG]

Thank you! I just feel torn about the jabs. What would you do? I'm also looking in to the separate jabs as maybe that will be better for him... Just very concerned that the jabs triggered this and couldn't bear him to be back in hospital with seizures but then the thought of him getting an awful disease is so upsetting and worrying too. Your thoughts would be really appreciated. Options are- 1. go to doctor and get normal jabs 2. Go private and get separate jabs 3. Wait for a year or so 4. Not get vaccinated at all. Xxx

 

[sun]

Getting the jabs is a personal decision. My son had pretty obvious reactions to the jabs, but they weren't overly serious. I got them all, but delayed the MMR until he is in preschool (this september). I am not giving either LO the chicken pox vaccine unless they don't catch it on their own by 8 or so. I gave my daughter her first set of vaccinations last week and she had no side effects at all. My son was very cranky, unhappy, fever, not himself, etc - but I wouldn't have even guessed my daughter even had them done. And she had the additional rotavirus vaccine. I do believe that vaccinations are important - when I was young there were less cases of some of these diseases than there are now because people aren't vaccinating. And after seeing an infant in hospital with pertussis, I never ever want my baby to go through that.

Have you spoken to your doc about it? Does she think the vaccinations may have caused the seizures?

 

[RebeccaG]

Doctors are all saying it was coincidental. Well after thinking so so hard about it - we have booked his jabs for Thursday afternoon. He is on medication until March so I thought it was best to get them done while he is on it so that we can always increase the dose if we have to. Am also going to dose him up majorly on calpol before and after!

 

[Marleysgirl]

That's exactly what I'd have suggested - get his jabs done while he's still on medication and still being monitored.

But I know how you feel, worrying about whether the jabs were the trigger and could it recur. We've been warned to watch for Andrew developing other forms of epilepsy at various different ages (7, 11, 18) - and because of that increased risk, I don't think we'll be subjecting him to another studio photographic session just in case the flash triggers something.

 

[NDH]

Thank you Rebecca for answering my other thread and directing me here. Im hoping my journey is nothing like what your guyses experiences have been but it will be good to have support if her EEG or other tests show anything.
Man im a wreck and she just had one - i dont know how any of you coped witnessing your babies have so many.

 

[RebeccaG]

I don't know how I got through it either tbh. I had an amazing amount of support around me.
I get very emotional now though thinking back to it.
When is your EEG? x

 

[NDH]

I dont have a date yet. They.sent my referral and will chase up a date for me but the. Nearesr place qualified ti read EEGs in infants and children is an hour away and they're not known for being easy to get ahold of... the pediatrician reckoned 1-2 weeks.

 

[RebeccaG]

Yeh they are quite specialist things! Ours was carried out by a normal doctor and then it was all sent to be analysed by someone who just analyses those all day!
I found that when we became outpatients I had to keep chasing things all the time, but in the end I got appointments and answers! So keep persevering!
If the EEG is several weeks after the seizure I'm not sure if it will show up...

 

[NDH]

Yeah that was my thought too...

They do have the ability to do EEGs at my hospital, but no one who is qualified to read them for infants and children. I don't know why they couldn't just have it done there and send it off to someone else either. So confusing. She's been fine though so I'm just going to reassure myself that it's more likely to be a benign cause than anything to be concerned about and hope for the best.

 

[RebeccaG]

Yeh I don't see why they didn't do it and then send it off....

What kind of seizure did she have? Did the doctors see it?

I'm sure she is absolutely fine especially if she hasn't had anymore since!

 

[NDH]

The doctors didn't see it no. But from what I described it was a simple tonic seizure with eye deviations.

I knew there were several different types of seizures but I had no idea what they were called or how they looked until now.

Anyway, I have an EEG booked for her now. It's not as long a wait as I thought it would be - this Tuesday already. Still a week from the seizure but it had been over an hour from her seizure til I was seen at hospital anyway so not sure it would have even made much difference had they done it right away.

I've also got ambulance cover for our family now (ambulance trips are not covered by our public health care here). It's not something I'd ever thought of but is definitely an essential now.

 

[RebeccaG]

That's great you have your appointment!!!

What do you mean ambulance cover? xx

 

[NDH]

If you need a trip in the ambulance and don't have private health cover or just straight ambulance cover you get the bill for it here. Our public health care system doesn't cover ambulance trips.

 

[RebeccaG]

Oh wow! Didn't realise it was like that in Australia. I thought it was just USA.

And that's great you have ambulance cover - we needed the ambulance in the end.

How is your little girl doing? x

 

[NDH]

It's the same in canada too (where I'm originally from). Healthcare is free but ambulance is a separate coverage you have to get yourself.

Saranna is doing fine still, thanks for asking I'm able to relax a lot more as it's been so long without any more.

 

[RebeccaG]

Yes that is very true! The longer it goes without one the more relaxed you become! I still haven't fully relaxed even though he is now 29 weeks and the last one he had was 11 weeks! They have just put such a powerful memory and image in my head that is hard to forget.