UPDATE ON: Any advice for my 3 year old son?

[andywhybrow]

Hi All,

I am very new to this as my 3 year old son was diagnosed with Epilepsy in May 2008.
I am writing this post as I have taken so much info on board I just feel like I will burst at anytime.
Please can anyone offer advice?

My son is getting worse after diagnosis, he was rushed into hospital in May after suffering repeated seizures and had an EEG. He was immediately diagnosed as the brainwaves showed plenty of activity. He was prescribed Epilim (soduim valporate)
The consultant with whom I have every faith in and thats quite rare to say in a British NHS hospital, diagnosed him as having "absences"

Since then my son has been awaiting an MRI scan and has it tomorrow 23/10/08.

He has been getting steadily worse, here are some of the symptoms:

Drew has become an aggressive, angry young man
Drew is having seizures where his arms and fingers noticeably twitch.
Drew has seizures when standing up and just stops whilst twitching then needs to sleep immeditely afterwards.
Drew is losing the ability to communicate, others, with exception of my wife, 5 year old son, 16 year old brother, cannot understand him when communicating.
Drew has started to appear as though he is "drunk" when walking
Drew has twitching bouts during the night when asleep and has terrible night tremors.
Drew has to "fumble" or "fiddle" with things, such as buttons, action figures (he has to chew the limbs) and collars of his shirt.This appears as though he cannot stop himself.

The consultant is seeing him on the 24/10/08 as he wants to read the MRI scan and decide on a course of action etc... and the GP saw him this afternoon for approx 1hr and stated that she felt that the Epilim was not controlling the Epilepsy at all and that he does not only suffer what was first diagnosed as absences. She noted that he has difficulty focussing on simple tasks and his behaviour has changed.

I am absolutely petrified of what I will encounter tomorrow and have to face this journey with Drew alone as mum cannot cope at all. She can no longer face what the consultants are throwing at us and is as scared as me of what we may have to face.

I am a strong person, but I am terrified at what the consultants are searching for and cannot rest or sleep through fear of tomorrow.

Is it possible that what I am describing is Epilepsy and nothing more sinister/

I have not tried to research the symptoms as I know I will encounter many "horror" stories and I am determined that if my son has Epilepsy, he will live as much as a normal life as others and just make adjustments to reinforce that.

I just have no idea if what I am describing is Epilepsy and although I will have confirmation in 24 hours after his brain scan, I am so scared, I dont know what to think anymore... this is the most frightening 24 hours of my life.

 

[Crazy Monkey]

Hello Andy

Welcome to CWE, I am not in a position to be able to offer you advice but I can tell you about my own experiences.

I am an adult living with absence seizures in the UK, I was diagnosed by the neurologist at the age of 10, one thing I have learnt from CWE is how many different types of epilepsy there are and how everyone has different symptoms before, during and after their seizures.

I mostly lose consciousness during my absences, sometimes if I am having a weaker one I can still hear what is going on around me but I am unable to respond. I have certain mannerisms when I am having a seizure and I also do a lot of twitching (myoclonic jerks) during the day and night.

I was on Sodium Valporate as a child and it never worked for me, I have tried several meds, the one that has worked best for me is Lamictal it has cut my seizures by half, but I still have between 20-50 a day. Just as a suggestion -When I was taking epilim my moods changed a lot, we put it down to a side effect of the meds, maybe this is where Drew's angryness is coming from.

I hope everything goes ok for your son tomorrow, please feel free to private message me if you want to chat about absences.

Take care

Kim

 

[seizures4ever]

My thoughts and prayers go out to you. I have a 2 year old son myself; I can only imagine what you are going through. I have multiple types of seizures/epilepsy, and what you describe does sound like possible seizure behaviors and/or side-effects of the medication. I wish I could tell you for 100% sure...or at least fast-forward the next 24 hours for you and your wife. Please keep us updated as you are able. Tonight, as I lay my baby down to sleep, I'll say a special prayer for yours. -Julie

 

[brain]

:hello: Andy,

Welcome to CWE, while we are not Medical Doctors
here nor can we give out advisories, but we do give
out resources, information, or whatever is available
on the website. We do understand deeply all of your
frustrations and all that is within... for starters you
can click here EPILEPSY 101 and begin reading
and learning:and feel free to browse around in CWE!

:cheers:

 

[tinasmom]

welcome to CWE -

So sorry you are having to go through this. What you are describing sounds like my granddaughters complex partial seizures. As Brain said, we are not medical doctors, research and knowledge is helpful. Hope you get answers to calm your fears from your doctor.

 

[Meetz1064]

Right now

the best advice is the hardest advice of all.

BE CALM. Be there for your son, and MOST IMPORTANTLY, BE CALM.

Force yourself to think......and keep a clear, open mind. It won't be easy to do, by any means, I am sure. But, it's something that you're going to have to do. Drink some herbal tea to calm down......honey vanilla chamomile is great.

And then, feel free to come back here, and vent away, ask questions, whatever you need to do. We'll be here for ya.

Meetz
:rock:

PS.....BTW, Welcome to CWE!:bigmouth:

 

[Bernard]

Hi Andy, welcome to the forum. :hello:

It definitely sounds like more than just absence seizures - probably some complex partial seizures too.

Most likely, when Drew's seizure activity gets under control, his behavior, speech, etc. will improve.

 

[skillefer]

Hi Andy! Welcome to CWE. As Bernard said, it sounds as though your son is having several types of seizures. I'm glad to hear that you'll be seeing the specialist soon. The key is, not to panic. I know....it's hard. Especially when it's your child. But the thing is, Drew will pick up on the stress and panic, and it could cause him to be scared. This anxiety is not good. Many of us with seizures find that stress, as well as lack of sleep, are primary triggers for seizures. The thing to do is to try to keep Drew calm. And try to stay calm yourselves. The sodium valproate may work for Drew. And if it doesn't, then let the specialist know, and they can try another medication. Check out the library here. It has some good information. Make sure that you write down any questions you have for the doc. My best wishes go with you. I was about Drew's age when I was first diagnosed. And I know that it was stressful for my parents. Just remember, you're not alone. We're here for you.

 

[Kansas Educator]

Andy,

All good advice from people who's been walking on this road a lot longer than I have. You'll be in my prayers as you -- hopefully -- get some answers that have solutions!

 

[andywhybrow]

Drew's MRI scan update

Firstly, Thanks for all your support it got us through a very very tense 24 hours. That means a lot to me.

Drew had his MRI scan and we had a meeting with the consultant.
He is informing us of the initial report today, but stated that the Eplim is not control Drew's seizures in anyway.

Sependant on the report, the full report is to follow in 3-4 days time, he wants to change medication after consulting a neurologist and MRI result.

He has suggested that Drew may have some scar tissue that is causing activity or an Annerism (?) I should know later today and will let you all know.

We discussed complex partial seizures, yet the consultant said that the EEG only reported absence seizures. Perhaps the complex partial seizures can develop?

I will post an update as soon as I hear anything, once agagin, Thanks....

Believe it or not you are really helping me through this.

 

[Bernard]

We discussed complex partial seizures, yet the consultant said that the EEG only reported absence seizures. Perhaps the complex partial seizures can develop?

EEGs don't always capture all (or any) seizure activity. If there is one thing I've learned over the last 5 years talking to people on E forums is to trust yourself. You are seeing the big picture. The doctor is only looking through a narrow keyhole.

Drew is having seizures where his arms and fingers noticeably twitch.
Drew has seizures when standing up and just stops whilst twitching then needs to sleep immeditely afterwards.

Absence seizures do not include twitching or autonomic responses. They also don't cause post-ictal tiredness. Those symptoms are characteristic of complex partial seizures. :twocents:

 

[skillefer]

Firstly, Thanks for all your support it got us through a very very tense 24 hours. That means a lot to me.

Drew had his MRI scan and we had a meeting with the consultant.
He is informing us of the initial report today, but stated that the Eplim is not control Drew's seizures in anyway.

Sependant on the report, the full report is to follow in 3-4 days time, he wants to change medication after consulting a neurologist and MRI result.

He has suggested that Drew may have some scar tissue that is causing activity or an Annerism (?) I should know later today and will let you all know.

We discussed complex partial seizures, yet the consultant said that the EEG only reported absence seizures. Perhaps the complex partial seizures can develop?

I will post an update as soon as I hear anything, once agagin, Thanks....

Believe it or not you are really helping me through this.

Scar tissue on the brain can be a cause of seizures. Also, just because it doesn't show up on an EEG doesn't mean it isn't happening....just ask the many people here who have had perfectly normal EEG's and yet have been diagnosed with epilepsy.

 

[Kansas Educator]

My neurologist told me that, of the many many epilepsy patients he has, seizures have only been directly spotted on the eeg's of a few of them. Although I had an abnormal eeg, he told me that even if it had been normal, he still would have diagnosed me with epilepsy due to my symptoms. So, I agree with the above post that what you are seeing means the most. Hope you get some answers today.

 

[sixpack]

I just joined the group today, but I, too, have a child with seizures.

I have found that meds can change behavior for the worse. It can also make her a little stumbly etc.

I think your child is having more types of seizures. My daughter grabs at her clothes, smacks her lips, fiddles with everything within her reach during complex partial seizures.

I hope you get good results from the MRI today. I know it's scary, I've been there. It's truly a difficult time both waiting to hear and then actually hearing the news.

 

[andywhybrow]

Update

Hi everyone

I have heard from the consultant and he has informed me that Drew's initial report from MRI is clear meaning there is nothing life threatening... YIPPEEE!!!

I am estactic and now know that I am dealing with epilepsy and thats all.
Drew has an appointment with neruologist in two weeks and his meds will be changed as the Epilim is doing nothing for him.
There is no doubt that he has complex partial seizures and this needs to be recognised and addresses by consultants.

Drew has been through a tough time and we will learn together how to manage this.

The important thing at this time is to correctly manage the Epilepsy seizures frequency and severity.

He has had little sleep, for example its now 6am GMT and he went to bed at 2100 hrs and was wide awake at 0300.

Whilst asleep he was twitching and pulling on pyjamas and appeared he could not settle.
It seems as though he is having body rest but the brain activity is not resting.

I am so happy that this is not life threatening and can be managed.
I have been worrying so much, I spose how many dads would.

Will keep my new found friends informed

Andy

 

[brain]

That's good news Andy and thanks for posting the
update! And it's good that the little one is still being
monitored! That's just perfect that everyone is in
it together, working closely and being careful and not
jumping into conclusions so quickly!

:tup:

 

[alivenwell]

I can relate to Drew's 3:00AM wake up time. I'm definitely a night hawk myself.

Seriously (This is tough for me), really try to get Drew on a good regular sleep schedule.

And, stress is really a big factor for me as well. Personally, I find exercising to be a good stress buster.

I've been there with Drew. The toughest part for me was being denied access to playground equipment even though I was a pretty athletic kid. Drew needs you and a good comfort zone at home. My parents created a great environment for me at home. I'll be forever grateful to them for that one. And, like you suggested, they did not treat me any differently than my sisters (all of us could misbehave!).

 

[Kansas Educator]

Great news! Now you can concentrate on finding a solution!

 

[seizures4ever]

Great Andy!

I'm so glad to hear your update! :e: Thank you for letting us know. Drew has actually been on my mind a good bit...I suppose it's because he's so close to my own baby's age. My son is two and has a mild heart problem, and I just remember how stressful a time it was for my hubby and me until we found out what was wrong with him. Remember, your son can read your "cues" and emotions (even though he's a little one). So, if you and your wife act calm and as if everything will be o.k., then he will respond accordingly. And the lower stress around him may actually help reduce his seizures. :agree:

We look forward to hearing more from you. Let us know how the neuro visit goes!

Many hugs to your family. -Julie

 

[Meetz1064]

Yeah!!!!

Oh WOW, this is soooooo good to hear! I am happy for you that the MRI is clear. Nothing but E to deal with.

I'm sure things are going to work out well for you. :clap::clap: Just make sure he reads you and your wife as being cool, calm and collected, and things will be fine......

Take care,

Meetz
:rock: