Cortical Dysplasia

Monique - posted on 03/28/2009 ( 23 moms have responded )

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Anyone with a child with cortical dysplasia? My daughter's seizures are drug resistant and she already had surgery. Nothing seem to work. There was great improvement after surgery, but she still has several events per day. The next step is VNS. Any suggestions.

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Jodi - posted on 01/10/2014

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I know this is old - but seeing if anyone is still around.... my daughter is six just had the second MRI that confirmed CD - no known seizures to this point - but nonverbal, severely delayed with behavior and aggression issues.
I have so many questions. They are scheduling a 48 hr eeg and mri combo.

Is the surgery to prevent seizures, or improve prognosis of behaviors or both?

hoping someone is still out there:).

Marcie - posted on 02/19/2013

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I know this is an old post but it is SO hard to come by people who know of cortical dysplasia or had a positive biopsy for cortical dysplasia! I have a 24 month old son who's seizures visibly began at 12 months. He was in constant seizure....literally...at first I thought he had SIDS but that was just his visible seizures. Anyway, he was life flighted to Mayo hospital...they are AMAZING. He was intubated for a month there, which his stubborn brain still seized over. After many doctors telling us it was idiopathic Mayo saved his life by decideding to do an emergency brain surgery since they suspected an abnormality. They were right, and his front right lobe tested positive for cortical dysplasia. They are now saying that the dysplasia is running through out his brain. He is currently on clonazepam, trileptil, keppra, topamax, and Dilantin three times a day. None of which work. We just finished trying the keto diet which also didn't work. He has about one seizure a day...but they come in waves...he will have a good weekish and then a bad one. We are now waiting testing to see about possibly doing another brain resection....scarrrry :I. He doesn't talk and he has a problem with weakness in his left side...he seems to drag his toes on the left foot when he walks. He also is a little slow cognitively in certain specific areas....it's weird something's he gets great and others not so much...that could be the meds though that we are working getting him off of them. To all the families affected by CD my heart goes out to you....it isn't easy and it isn't fun but somebody has got to do it and we were chosen for a reason. I am comforted in knowing this isn't genetic and it is a "fluke" deal and not common. We have some special children :)

Worried - posted on 06/07/2014

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Hi,

My son, who is 3.5 years old, has been getting seizures from the age of 5 months. They are brief episodes which lasts from 5 seconds to max of 30 seconds. We have encountered max of 6 episodes per day till date. While he was initially diagnosed with Idiopathic Generalize Epilepsy (when he was 1 year old), we got his MRI very recently done (about a week ago) owing to his seizure frequency increasing (2 a day). The neurologist feels that Cortical Dysplasia is the issue while it has not correlated with his Video EEG results (10 hrs Video EEG, with 4 episodes and no waves concerning cortical dysplasia!!).

While he use to make gruntling sound during sleep and then flicker his eyes (occasional one-or-two jerks of hand or leg on one side), the recent seizures have changed their symptoms. They occur when he is awake and active. He suddenly gives that awry smile (as if his face muscles are not in his control) and then he bends (not falling exactly) as he feels week. Then, he tries to talk but his words are so heavy that he hardly can talk. This continues for a minute post which he is back to normalcy. While his neurologist thinks its FCD, all other feel the MRI is absolutely normal. We are very much confused and dont know what to do. Presently, he is on meds for next 6 months before any conclusion can be done. However, his dribbling has increased recently and my spouse feels that whenever there is dribbling, it follows with an episode. Any one faced this? He is doing very well on milestones and schooling. Can there be any chances of autism at this stage or is it epilepsy? Will it go as the child grows?

Worried a lot really :-(

Louise - posted on 04/10/2009

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hi im very well thank you



my son has had a brilliant week as started a new drug two weeks ago first week was still bad but this week he managed 3 days of no seizures which very rarely happens he ended up going down with a bang this evening but still cant complain as its school hols and its nice to see him just being a child again even if it is only for a couple of days



at first he seemed to be quite a bright child but at about 6 yrs old there seemed to be a few learning difficulties appear it wasnt until he was 8 yrs old that the seizures began and the learning difficulties became more and more noticable he now attends a special needs school which has helped with he's learning but through tests they have proved there is a understanding problem we are currently waiting for a screening for autism as there is mild behaviour problem and he's quite axious alot of the time



he does have mild speech problems slight slurring of words and he dribbles quite a bit but he now wears patches which has help this



i havent managed to find anyone else whose has a child with this condition on any other sites so was quite relieved to see your post here as most people dont understand what i go through day to day i live in hope that maybe one day he can live withoutb seizures or at least less its difficult to watch over him everyday all day especially now he is wanting he's own independence

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Christine - posted on 07/10/2014

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This is for Katie-you could been writing about my daughter. She is 8, dx with add, anxiety and a learning disorder. today we got her MRI results back-cortical displasia, but never a seizure, nor headaches. I am still I'm shock. Everyday seems like so much work for all of us-some days I lose my patience and get very angry with myself. No do handle it all?

Katiebroth1981 - posted on 03/26/2014

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I'm in a dilemma, I have adha/add combined, bad! And am now medicated,my daughter has shown signs from 3 she's 8 now and has been diagnosed so to try meds,but 8 months ago my life fell apart when she out of the blue had a seizure,and then a week later another,she had scan and have said she has left front lobe cortical dyspasia and is now on meds for that,no seizure since its been a good few month,they have said ADHD meds will be tricky cause f her seizure till get right one! But I have read it can CD can be mistaken,but with me having it bad,could she have both,she's all over the place, emotional,low self estem,really forgetful,clumsy,behind at school,no concertation,struggles with piers, hyper and impulsive and always has headaches!!! Help me pls.

Dana - posted on 01/10/2014

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I have a daughter with CD. Seizures started at age 2. Have tried several different medications nothing seems to work. Has been trough numerous EEG's and MRIs. Finally decided to go with surgery!!!! Scheduled for Feb. 2013. Scared out of my mind!!! Anyone out there who has had surgery, please let me know of results. Thank you to those who post and good luck to all. This has been a hell of a ride for us.
Keep strong.

Kim - posted on 01/01/2013

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My daughter is 23, we have had seizures for 13 years, also nothing seems to work. She had a VNS put in 2005. I didn't think it helped that much until our last doctor's visit. About 9 months ago after a great honeymoon stage of a new medication. We had a gran mal seizure that scared me senseless. We have continued to have them often (weekly). Found the battery is dead in the VNS. I am now a bigger fan.

Karina - posted on 09/07/2011

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my child is 3 and has no seisures with this and our dr has sugested surgery in the next couple of weeks and i said yes and now i am scared and unsure ... my biggest question is that besides weakness and speech slurring or sounding toungue tied and his hearing problems .. he is so smart and funny and talented ... but what if .... what will happen if we dont remove it ? will it eventually begin to happen then will we kick ourselves ? what if we do and it causes problems and it may have never done anything what do we do ? i have no idea and noone can tell me dr says up to us but our biggest thing is he needs and implant of a BAHA to hear .. so after that he can t have MRI's anymore to monitor we just dont know what to do . his is in the left frontal and temporal lobes 2.5 cm so large enough . any one had this for years without seisures? is the better question . sorry could not help you more i am at a loss too also his brother is 4 and seems to have autism asburgers do we get him checked for cd as well what if this is what he has ? becuse he has bad behavior and outburst ...

Azure - posted on 10/11/2010

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My son was diagnosed at the age of 3 and he is now 5. He does not have the seizures associated with CD but all the other problems that go with it. He has left sided weakness, slurred speech, behavior problems, memory function abnormal. He has had speech therapy almost a year now and PT and OT off and on since he was 3. Does anyone else have a child with CD minus the seizures? And what problems do they show.

I did believe he had autism too at one point but I found an article stating that CD is usually misdiagnosed at first with autism and ADHD.

Lisa - posted on 04/15/2009

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Hi Lou, That's great news!! i understand what you mean about the waiting and the doubts.... i was like that when they told me that Morgan need to have the G-Tube!



Fingers crossed that is all worth while..



Keep ya chin up hun



Lisa x 

Louise - posted on 04/15/2009

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hi



well i recieved a letter from the hospital today



they have a bed booked for him for he's vns op on the 27th of this month talk about give me some notice in a way im glad as i wont have weeks of worry as its already hit me and had doubts already to am i doing the right thing



i hate this part its like  the reality kicks in and all your fears flood in and yet you gotta sit and be normal for your childs sake



lou

Lisa - posted on 04/14/2009

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That's Great Lou I wish you all the luck i the world......



Keep us posted as to how he gets on!



Lisa

Louise - posted on 04/14/2009

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hi u all



hope all is going as well as can be expected my son wears a helmet he has two a thinner one which he wears when mobile but also has a thicker one for sports



he took him to break he's jaw before he was issued one not that it would stop him from doing it again but hey it does help



i have heard of a few children that have had the vns and have had pretty good results from it there is actually a child at my sons school who has already had it and has had a big improvement but still has seizures but better control would still be great



i have been told is will be within the next couple of months that my son will have he's op has had mri in january and funding is all there and in place just waiting on date now



although its scary i also cant wait as my sons consultant is gr8 but im pretty sure he is getting to the point of running out of options with drugs



lou

Lisa - posted on 04/11/2009

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Hi Louise, 



Yes, we have the same problem with Clobazam, he can only stay on it for a short while and then it stops working! which is the same as all the rest of the Meds he has been on.... i think we have had about 4 weeks seizure free in the last 6 yrs,



Morgan has been having upto 100 seizures a day (peti-mals) and 2-4 (grand-mals) He is known to go over 10 minutes with his "Big" seizures so we have Buccal midazolam to stop them, I no longer wait the required 5 minutes before i give it to him because he always goes over..and the Buccal takes 5 minutes to work anyway! 



Yes i have foud that my son has lots of different seizures. and i have founf certain drugs can make certain ones worse!! or even bring them on...  He is currently having Partials, Drop Attacks, Absences, Complex Partials aswell as his Sleep triggered Tonic Clonic! He has a helmet to try and stop to much Damage but this is no longer good enough and has got to have a new one,  this is a bit like a American Footballers Helmet. Horrible! lol 



but he has had so much injury to his face you just have to make the most of a bad thing!! 



It's really good that your Son can feel a seizure coming on and is able to mostly put himself on the floor!!  My son only seems to "feel" the Major Seizures and comes into to me, but most the time he has already started Fitting before he can get to me and ends up injuring himself!



If you would like to talk more please feel free to add me!! 



Love Light and Strenght!



Lisa x



 



 

Louise - posted on 04/11/2009

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hi  everyone



my son currently is taking clobazam too along with keppra epilim and is almost of lamotrigine and just introduced tiagabine



over the last couple of years he has tried many different combinations but have never been able to reduce clobazam successfully although he does get amuned to this drug and has to come off it occassionally for about two weeks which always results in a terrible time



do u all find u have a good few weeks as you start new drugs with the odd exception to some then as they tend to settle the drugs stop working?



i think the longest good spell we had was about 7 weeks where he was only having one seizure a day with the odd day here or there with none



do any of you have to administer emergency medication to stop seizures ?



my son tends not to have very long ones but comes in and out of small ones we have had times when they go on all day and its almost impossible for him  to eat or even drink and we have had to have him hospitalised and put on a drip to stop these seizures



do the seizures your children have vary? i found that my son has all different typesof seizures i have found certain drugs induce drop seizures without any warning



those normally he does get a warning and can call out for help and can mostly get himself to the floor b4 falling

Lisa - posted on 04/11/2009

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Hi again I just wanted to add that my Son is also on Clobazam... He is only able to go on it for a few weeks at a time (just to try and stablize him) When he was on the Full dose i also noticed some  "Behavior  issues"!!  can you tell me if the Banzel comes under any other name please?



Lisa 

Lisa - posted on 04/11/2009

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Hi Monique, Our next step is also the VNS, very scarey!! although my son does not have the same disorder as your Daughter, his epilepsy is also Drug resistant...



Let me know how you get on and good luck 



Lisa

Monique - posted on 04/10/2009

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Hello again. Well, next week my daughter will start a new medicine called Banzel. It is really new and I hate the thought of giving her a drug that has not been on the market long, but my husband and I have decided to try it. We were told to try it for a month. Currently, she is on Trileptal, Clobazam (we have to order it from a pharmacy in Canada), and something for sleep. The clobazam does good, but I can't give her the full dose because it causes behavior problems. However, it may work for others. The name of it is Clobazam and I think the brand name is Frisium. The pills are small and scored and will dissolve in water. Two boxes cost about $60 (including shipping). I will keep everyone posted about the Banzel.

Nicola - posted on 04/09/2009

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hi my daughter has cortical dysplasia among other things. we have tried various drug combinations and nothing working yet. she is 8yrs old and have been told they cant remove damaged areas. she is going to have surgery to split 2/3rds of brain in june but she already has weakness down right side and this may get worse, but at moment she averages 13 drop seizures a day and 2 tonic clonics per day so we im just doing the best i can, with every finger and toe crossed, good luck to you all, nikki x

Monique - posted on 04/08/2009

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Hi. How are you. I'm sorry that your son has to go through so much. My daughter is 4. Her surgeon also told us that he could not remove all of the damage without causing other problems. Her seizures caused some damage to her brain and now she goes to speech and occupational therapy. Her problems started mild and escalated. She was an advanced child until the seizures got so bad they were happening when we didn't know it. Even in her sleep. Now she has problems with speech and other things. We can't be sure what caused it since it all seemed to happen at once. Now some doctors think that she has mild PDDNOS while others do not and we are just so confused and we feel so helpless. Did your son have any learning difficulties associated with the dysplasia? What about autism, ADHD, or any other problems. I wish you all much luck with the VNS. I pray it works for your son because I know what you are going through. It is nice to be able to talk to someone who understands.

Louise - posted on 04/04/2009

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hi



my son has cortical dysplasia were in same situtation here he was diagnosed just b4 he's 9th birthday he is now 12 yrs old and has tried most drug combinations now



two yrs ago he was put in for operation to remove the damaged parts but during this they discovered he had right arm and leg movement in this area so would be left with a weakness on that side of he's body so at that point we opted to leave it and not have thoses parts removed but since then things only have got worse he had another mri scan in january this year and they have got funding for vns so he is just waiting for a date we have been told it should be within the next couple of months as he is really quite unwell at present  we managed a day out with him today but as soon as he came home he went straight to bed at 4.30pm where he was just so drained



how old is ur daughter ?

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