18 month old with Abscence Seizures

[Sadie]

Hi everyone.
Was just wondering if there were any other parents out there with a baby who has abscence seizures? My son was about 9 months old when i first noticed it and was diagnosed with Abscence Seisures after and EEg about a month later. However, the doctors are very concerned that it may be something more as almost all cases of CAS begin at around age 4 (or so i believe from what the doc has said).
Its very worrying for us as they are always asking about his development and so far he is doing great in every way. they have done an MRI and all is well. When i asked the doctor if he had ever heard of any other babies as young as mine having this and he said no. I live in Scotland, was wondered if there were anymore cases of this elsewhere.
He is also on Keppra (3ml per day) - it worry's me that he is on this med and is so young, i pray that it is safe and not doing him any harm. Have noticed an improvement in the seizures. He can still do between 10 and 15 per day - was previously about 25 per day with at least 1 or 2 falls leading to him bumping his head poor thing.
Any comments would be great - kinda out on a limb with this, hope im doing the best by my wee boy.x.

 

[Nakamova]

Hi Sadie, welcome to CWE!

We do have many parents as CWE members, and I hope they will chime in soon. You can also search for threads about absence seizures using the "Search" tab near the upper right. This link might help too: http://www.circleofmoms.com/moms-of...diagnosis-frustration-absence-seizures-175780

Best,
Nakamova

 

[Taylor's_mom]

My daughter was diagnosed at 13 months with the same thing and when she got to about 3 they changed their minds and say that she has complex partial seizures. It's so hard to tell on a small baby what is really going on since they can't express how they feel. We a on keppra and love love love keppra. It is the only med that hasn't given so many side effects she is miserable. For us it works perfectly, the only side effect Taylor has is dry mouth a little so she drinks a lot, to us to that's no big deal. If you have any questions feel free to ask.


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[Sadie]

Hi Taylors mom,
thank you so much for your comment, it makes such a difference to here that we are not alone with this. Our doctors have given him this 'working diagnosis' but i feel there is something more to it and may well reveal itself when he's a lttle older like your daughter. Its the not knowing thats difficult. One of the nurses that supports us is always heavily hinting that he has something more sinister and is pushing to get him tested for Dravet Syndrom. This is an extremely rare and punishing form of epilepsy with a very unfavourable outlook. He hasn't had an Colonic type seizure (thankfully) and I believe this is a key symptom of this so i'm holing on to that for now.
My son has started Keppra and like you we are having no problems with it so far. he's only on 3ml per day at the moment. His absences have reduced slightly and he has stopped falling over when he has one. We are still gradually building up to the correct dose for him so hopefully the seizures will get under control. Can I ask does your daughter have any absences anymore? Also, does your daughters eyes look up to the left during the absence? My son used to just stare off into the distance for about 4 seconds but now his eyes go up slightly to the left and sometimes flicker a bit.
Sorry for the rambling, thanks again.x.

 

[KellyD]

Hi Sadie

My son Aiden was also diagnosed with epilepsy at 9 months of age and his first seizures were very much like absent seizures but our dr was skeptical of them being absent ones due to his age and also diagnosed complex partial seizures. He also said they don't normally have those before age 4. He had never seen them though so was only going by my description. Aiden also had an MRI that was all clear and the only medication in the end that worked was Keppra. At one point he was on Tegretol, Lamictal and Keppra but was taken off lamictal soon after starting the Keppra as it made no difference to his seizures. The keppra kept him seizure free and as far as we can tell he didn't feel any side effects but considering he was so little we didn't really know what his personality would be without them. The tegretol did make him quite sleepy though. His development was always advanced for his age so at least the seizures and medication never hurt him in that way. Aiden is 4 in a couple of weeks and he has been seizure free since December 2008 and has been medication free since June this year. As far as doing the right thing by your boy I think you are doing everything you can. It's hard to know what to do with medication but I think he is responding to the medicine with the reduction in his seizures so that is definitely a good thing. You can also ask me any questions, I'm more than happy to share our experiences. I hope things get better for you guys soon.

 

[Sadie]

Thanks KellyD,
It sounds like your son has had a similar experience of epilepsy as my son Edward. Im so very glad to hear that he is doing so well, it's great to hear some good stories as all my husband and I seem to be able to concentrate on at the moment are the worst case scenarios. You must be so pleased with how he's doing.
You say that Aiden is taking Keppra - can I ask you how long it took for your son to become seizure free and at what dosage this happened. My boy has 2ml in morning and 1ml at night just now. They have been gradually building it up to 4ml per day. Would love to think that it may be possible for him to have a day without any but still grateful that they seem to have reduced a little. The docs are running a test for Dravet Syndrome but Im thinking positive about that now and Im pretty sure it will come back negative as he has never had a Clonic seizure that god he's not photosensitive. Still major worry tho, we though with him being our third child(2 older, over-protective sisters) we would breeze through with this one, just goes to show you never know.
Thanks again for your comment, can't tell you how much it helps us.

 

[KellyD]

I'm glad my reply has helped, I remember the feeling of what you guys are going through and I know hearing other people's stories were very helpful. It took about 4 or 5 months to get him seizure free and he was on 7.5ml tegretol and 1.5ml of keppra both twice per day. After 2 years seizure free we slowly took him off the tegretol and then a few months later slowly reduced the keppra to nothing. Dr said he would have done it sooner but given his age and how long it took to get them controlled he didn't want to mess around too soon. I'm glad you are staying positive about the Dravet's and hopefully that will be something you won't have to worry about. Take each day as it comes and hopefully things will get easier for you all.

 

[Taylor's_mom]

The looking to one side is a huge thing make sure you tell his dr that. It helped with our diagnosis a lot. We started on 3ml of keppra also. She does still have absence seizures now but not as often, but she is on two meds now to combine and give us more coverage.


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