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Complex partial seizures in 6yr old
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EEM38 posted:
Hi, I am new to the site.

I have a 6yr old who was diagnosed with complex partial seizures at the age of three. After two years of control, he started having what we think are breakthrough seizures earlier this year (he is on Tegretol slow release, having been changed from the liquid in February). His dose has been changed a couple of times since he started on the tablet medication, to no avail

Is it common for this to happen? We are thinking that either he has become resistant to his meds, and perhaps needs a change either back to liquid or to another med, or that what we are seeing is in actual fact not true eliptiform seizures, and that he is displaying some form of anxiety related response to several bereavements and illnesses we have had as a family in the last couple of years.

I am trying to get to speak to someone about this, but to be honest we either have to speak to the consultant when he can gt time to call us back, or look up the internet. Support isn't great for children with epilepsy in our area, and I just wondered if anyone has a similar experience.

We are in the UK, incidentally.

Thanks

EEM38
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saxofone1 responded:
Hello EEM,

Your concerns are justified. Yes, breakthrough seizures are common. It is always possible that people become resistant to their current med(s). It is also possible that the med might not have reached its theraputic levels. It could also be that your son simply doesn't respond to the liquid form as he did the tablets.

There could be many, many reasons for the re-emergence of his seizures.

His behavior issues might be due to the meds. I have taken a few which caused me mood swings. Do check with someone about those concerns.

Think about checking google for youth ep support groups. These groups might also be posted in the resource area of this site.

I have had ep since '75. New additions, increases or decreases, or total elimination were always part of my medication therapy.

Keep calling whoever you're calling now. Don't stop until you get answers from them.

Welcome to the family,
angie, from Las Vegas
 
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hula_dancer73 responded:
think you are on the right track with getting it resolved with both a neurologist plus counsleing. The child probably needs meds for some of his other problems related to everything he has been through, not just szs.

HE probably needs to get anotehr EEG or several EEGs to determine if he really does have szs.

yes he can have break-thru szs and as he gets older his meds may need to be increased or even changed.

I was on tegretol for 2 years and was on several forms of it.

I took regular form, chewables, XR, and other types of the drug. THe drug has some thing called autoinduction where it metobolizes itself in the liver.

HE may have to switch to another drug or another form of Tegretol. ASk his doc if he can try Trileptal and see what occurrs with that drug, I have never had that drug becuase Tegretol failed for me.

HE may also have to ride the med-merry-go-round as Candi calls it to see which drug or drugs will be or can work for him to help control his szs.

He might have to go into an EMU or Epilepsy Monitoring Unit if there is a good hospital around you and be monitored for more than 24 hrs.

Counseling may help him be able to deal with all the stuff that has gone on in his life that he may need to talk to someone about that may make him feel better.

There is also a device called a VNS that may also work for him but it is not redally availe so much in the UK.

I live in Hi in Honolulu so if you want to keep in touch with me you can. apache_spirit11@hotmail.com

hula_dancer
 
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saxofone1 replied to hula_dancer73's response:
Hi hula,

thanks for the adding everything that I forgot. The EMU and a new EEG. We've all been thru this at one time or another that it simply becomes second nature to us. The med-merry-go-round for me particularly.

How's rehab coming?

Enjoy Hawaii 'cause I have extreme heat warnings out here in Vegas.

EEM, I hope our posts have helped you and your family in some way.

Everybody take care,
angie
 
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hula_dancer73 replied to saxofone1's response:
hi angie,

How hot is it there?

We have tropical weather and wind. ALOT of sun but only in the 90s. IT is very humid here due to the fact that weare on an island surrounded by water. YICK!

But I enjoy living here.

Wakiki is up the island on the east side, and EVERYONE who swims ends upp at that beach.

youshould visit the sate sometime. ALOT of histiry to it and each ilsand has its own hx.

better get going for now and talk later

hula_dancer
 
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saxofone1 replied to hula_dancer73's response:
Hey hula,

Vegas is experiencing some extreme heat right now, highs 110 . No one was expecting this weather. August is usually the hottest month.

It is at this time of year that I miss the Bay Area. I handled the falls and winters in MN better than I did this heat.

My days begin early. Out the door before 6am and on my home by 9 am. The early starts are necessary 'cause I don't drive and the nearest bus stop is about 1.5 miles away.

Well, my support group meets tonite. Oh boy, I'll be leaving when the day is getting near its high. I made it through brain surgery, I'll survive.

good day to all,
angie


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