# EEG and MRI for seizures - Update!!



## RebeccaG

My gorgeous baby started having seizures last week and was admitted to hospital and put on phenobarbital (sp?) which stopped him from seizuring as they were becoming very frequent. I'm not sure what type of seizure they were but he was lip smacking, staring, his face would go very red and then blue, his breathing becomes very shallow and stops, and his body would be quite still but not rigid. Any ideas?
He had so many blood tests and a lumbar puncture which have all come back clear which is a relief and he never had a temperature. They have also put him on domperidone (sp) and ranitidine (again sp?) as they wonder whether he could have silent reflux which are causing the seizures. He has never been a refluxy or coliccy baby so I'm not sure about this - anyone experience silent reflux and seizures?
I'm so worried about the scans and what they will find - the MRI is on 10th November. 
Is there anyone else that has had something similar? I have been an emotional wreck the past few days and never thought anything like this would happen to my baby :cry:


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## Marleysgirl

Different kind of seizures, but I do know what you might be going through - our little boy Andrew was rushed into hospital when he was 8m because he started having "infantile spasms", which are a body-cramping style of seizure.

They didn't start treatment until after an EEG which confirmed epileptic traces, he was then started on strong steroids (prednisolone). Fortunately he responded well and was discharged a few days later, having not had another episode since starting treatment. He stayed on the steroids for two weeks at high level, then weaned off over two weeks. And again, fortunately, they've never recurred.

(He also had an MRI earlier this summer, but that was for something else!)

:hugs: It is very distressing watching your baby go through this, and I just hope that your boy continues to respond to the drug combination that he is being given.


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## RebeccaG

Thanks for replying and not doing a R&R!! We had to go back in to hospital as he started seizuring again and they were clustering. He is now on a higher dose of phenobarb so I'm hoping that now sorts it. He has the EEG on Monday at 10am - do they give you results straight away? I just want to know what is causing them - it's a nightmare the waiting and not knowing. 
That's great that your son's seizures never returned. I'm hoping that Benjamin will grow out of them or that they find it is something that is completely manageable and not something awful.
Thank you again for replying! xxxx


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## Marleysgirl

When Andrew had the EEG at the start of the seizures, we didn't get the results "immediately" but we did get them only a couple of hours later - EEG in the morning, Neurologist came round to the ward in the afternoon to give us the result, discuss treatment (as we had a choice) and then prescribe (so the nurses could start administering as soon as poss).

He had two follow-up EEG, and at both of those the Neuro team watched the traces on screen as they took the EEG and could tell us immediately that there were no typical traces for epilepsy.

Good luck for Monday :hugs:


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## RaisingMiniMe

So let me first start by saying I will think of you OFTEN! 

When my DD was 3 months old she was going through the same thing! We quickly got the diagnosis of seizures. What I am about to say is not here to scare you or anything bad literally is the WORST case scenario! and is just my story.

Anyways my daughter is now 2 we have had almost 2 years of non stop seizure activity including plenty of hospitalizations and medicines she has failed. If there is one piece of advice and only one I can offer you without a shadow of a doubt that I wish someone would have told me. GO TO A SPECIALIST! Get him off of Phenobarbital yes it might be "slowing" his seizures but it is also "slowing him" my daughter (sorry your story is like filling my heart up. It's like something i wrote two years ago) I remember being scared of the lumbar puncters the MRIS everything! Then genetic testing! OMG Sorry if im overwhelming you! My daughters became so uncontrolled I moved to Mayo Clinic in Minnesota *left everything I have known my whole life* 

Sorry... Anyways i know im rambling probably doesn't makes sense but i just I can relate I would be willing to give you my phone number if you private message me! My daughters never had a relation to fevers and there was never a seizure traced in my whole family. Just never give up trying to find a answer and its amazing how now it seems scary and one day it will just be life. 

Really BTW im soo serious about messaging me!


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## RebeccaG

Thank you for your replies. I'm pleased that we should get the results tomorrow - will hopefully get some answers or reassurance at least. 
Why do you say come off phenobarb? What kind of seizures is your daughter having? Yes will definitely hunt down a speicalist if we need to. We are quite lucky that we live fairly close to London where I'm sure there will be good neuro specialists. I'm just really worrying about tomorrow's scan... xx


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## RaisingMiniMe

My daughter has seen 7+ specalist just in the nuero field she has Complex partial seizure disorder with Generalized episodes. Phenobarb even though a amazing drug is not made for children and causes stunt in development. 
check this link out:)
https://professionals.epilepsy.com/medications/p_phenobarbital_children.html


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## RaisingMiniMe

And the only reason I have such a concern for the drug is how far behind my daughter is, we now have occupational therapist and pyhiscal therapist and shes behind on her speech also. I know short term its fine, but its def not a long term drug.


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## RebeccaG

Thanks for info on phenobarb - Will ask consultant about it. 

Didn't find anything out today as have to wait for report to be done :( Going to phone up on wed and should hear then. He was very good and slept through it all! X


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## Marleysgirl

Any news today?


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## Hangin_On_AGS

Good Luck!!! The kenogetic diet is a really good option for kids too and i know they make a formula that stays in the diets regulations. No drugs for the younger the child the better. raisingminime is very right most anti-epileptic drugs are not made for children under the age of 3-5 and can stunt development. But Regardless I hope you get positive results back and your ds has a happy and healthy life!


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## RebeccaG

Yes got the results back from the EEG confirming focal seizures in right side of his brain - have been really upset and not on the internet much. He is having an MRI next Thursday and I pray and pray that it is clear.


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## Marleysgirl

Oh hun, that was the kind of news you were hoping not to hear. However, at least you are now on the way to a diagnosis.

https://i306.photobucket.com/albums/nn274/Tigsteroonie/hug.jpg


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## RebeccaG

Well we had the MRI yesterday and it has been 3 weeks since his last seizure!! :) Will be a long 2 week wait for the results of the MRI... Can't stop worrying about it all!!


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## Marleysgirl

Three weeks? Wow, that's passed quickly :happydance: Is he still on any drugs? Andrew was on really strong steroids for two weeks, and then was slowly weaned off them. Are they going to repeat the EEG to see if the traces have gone?


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## RebeccaG

He is still on phenobarb but the the dose hasnt been increased and he has put on so much weight! The doctors said that was one way of weaning him off it as the dose would become so small as he grows. We have to wait for our appointment with the consultant and see what he says about the MRI etc. Hopefully we won't have to put him through anymore tests and scans etc. x


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## Marleysgirl

I remember the Neuro warning us that Andrew would eat like mad and put on loads of weight with the steroids ... then she looked at him and said "Mind you, that might not be a bad thing!" He was so small for his age. I look back at the photos from the holiday we took during the last week he was on steroids, and he's got chubby cheeks, I think that's the only time he did!


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## RebeccaG

Still no seizures! Is 5 weeks today :) 

Had MRI results yesterday. Had to persuade consultants secretary to tell me as consultant had gone home and not called. He is on a course today so won't get to speak to him until Monday!!!
Anyway, he has a 4mmx4mm cyst on caudate nucleus. Don't really know too much about it and google has been hopeless! If anyone knows anything positive I would love to hear from you! x


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## BabyBoo36

I don't have any experience, but wanted to say Google is not your friend in cases like this! I nearly drove myself crazy on google when Pud was diagnosed with SB. You'll get more accurate info from your consultant or a neurologist. Hugs to you xx


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## Marleysgirl

Ooooh ... they've found something :D I consider that good news. They've found something, now they can work out how to deal with it. Far worse would have been if they hadn't found anything and he had to undergo more tests. :hugs:


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## 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.


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## 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


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## sun

So glad to hear this great news! :hugs:


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## Marleysgirl

I am really pleased to hear the good news, Rebecca :hugs:


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## 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


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## 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?


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## 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!


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## 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.


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## 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.


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## 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


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## 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.


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## 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...


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## NDH

Yeah that was my thought too... :shrug:

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.


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## 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!


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## 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.


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## RebeccaG

That's great you have your appointment!!! :) 

What do you mean ambulance cover? xx


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## 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.


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## 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


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## 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.


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## 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.


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## clara123

Hi Rebecca. Would you be able to tell me what happens in an EEG please? My boy has had a few seizures and has an EEG booked in a few weeks, 2 days before his second birthday. How long will it take? What happens if he doesn't stay still for them to put the things on? Thanks xx


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## RebeccaG

Ah sorry just seen your post! Haven't been on for a while! Have you now had the EEG? How was it? It looks pretty scary but it isn't painful at all. Feel free to PM me as I will get the messages then. Sorry hun! xxx


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