Cortical Dyplasia Type 2B

Lara - posted on 06/20/2012 ( 6 moms have responded )

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My son had his first seizure at at 2/1/2. He just turned four this month. He was seizure free for 13 months on Trileptal, and now the seizures have returned, 5 or 6 a week since April. We just added Keppra this week. He has already had one seizure on it. How do you get a 4 year old to swallow the liquid keppra? He gags, spits it out, won't take it with juice, milk...we have begged, pleaded, screamed, bribed...we can't get him to take it. Any suggestions? Our Neuro didn't mention anything about the difficulty of getting this down.
My son's epilepsy (about 10 seconds of partial seizures each episode) is caused by his Cortical Dysplasia on his left parietal lobe. Has anyone had a child undergo surgery to remove a dysplasia? Or in particular left parietal lobe surgery? The MRI reports says my son has type 2B (Taylors), which includes abnormal balloon cells on the dyplasia. We live in Dallas but are searching for the best team of doctors in the country - any referrals anyone?? Does anyone have a child in a similar situation, I feel lost most of the time and wonder if there is anything else I can do for my son. I am shocked that so many others have children with seizures, breaks my heart. I would love to connect with anyone going through a similar situation, or knows more about this type of Dysplasia.

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Chris - posted on 08/19/2013

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Hi Lara,

My daughter had type 2 cortical dysplasia. She had her first seizure at age 11. We went to UCLA when she was about 13. She just had brain surgery one month ago and has been seizure free since. Up until that time she was having about anywhere from 10-15 seizures a day.

Her seizures were based in her frontal lobe, part of the supplemental motor complex. After numerous hospital stays, MRI's, a MEG scan, the team at UCLA was able to find the area. Dr. Gary Mathern performed her surgery. UCLA pediatric neurology department is pretty amazing. Our neurologist is Dr. Joyce Matsumoto. I am so grateful for their expertise.

I hope you have found a doctor to help. It is a really difficult thing to go through.

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Kelli - posted on 12/11/2013

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My son was diagnosed with epilepsy at age 4. After years of uncontrolled seizures it was suggested for him to have surgery. While the surgery stopped the large seizures he still has small seizures daily. He is now 16 and we are having a difficult time with his transition into adulthood due to learning issues as well as helping him to be more independent. Anyone having the same issues and/or having any suggestions on help?

Lara - posted on 08/20/2013

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Thank you to all of you amazing parents for sharing your child's story with me. It is truly overwhelming and although breaks my heart as I read each of your stories; I understand the fight that each of you obviously have inside of you in order to find the cure for your child.

Since my last post, we too decided to skip town and see as many doctors as we could for 5th, 6th, 7th opinions.....we found one Neurologist and one neurosurgeon in Houston at Texas children's who told us in our first appointment that our son who was then 4 would be cured if we removed his dysplasia. We were thrilled to find Dr's who wanted to cure our son, just not treat him with more meds which 95pc of the Dr's we visited wanted to. We began surgery evaluations immediately and everything proved Cole to be a candidate. Most of his left parietal lobe was removed and he has been seizure free for the first time for the past 10 months and we are currently tapering off all medications and almost med free with no physical/mental deficits at age 5.

I am so excited to hear that each of you have wonderful Dr's tht have changed your lives. Makes me want to shout Dr Daniel Curry's and Dr Angus Wilfong's names out to the world:) as I am sure you do too with your success.

Goodluck to you all and your fight against epilepsy-I hope and pray my son's and your child's do not return or for those still searching for a cure that you keep being an advocate for your child. Don't stop! Don't give up-dont be afraid to see different Dr's.

Bless you all!

Lara

Marcie - posted on 02/20/2013

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Yes, mayo clinic in Rochester MN. Dr.kiesil (epilitoligist) and dr. Wetjin (neurosurgeon). They saved my sons life. at one years old exactly he had his first episode. He looked like he was dying, we thought it was SIDS but later after his second episode found out it was seizures. Many doctors saw him only to say it was idiopathic. After a six hour long seizure and discovering he was also constantly sub clinically seizing he was intubated at Mayo in hopes of finding a reason and a way to save him he continued to seize over the coma. After a long month they found a very small abnormality and his month long EEG showed seizures coming from that area they went in for emergency brain surgery. They did inter cranial monitoring on the OR table and found the area to be larger then they thought and his front right lobe was resected. It tested positive for Taylor type 2B. His seizures stopped for six weeks and on Mother's Day of 2012 he started seizing again. He has been diagnosed with dysplasia through out his brain. Possibly different types of dysplasia besides just Taylor type 2B. Sadly we were told children of school age or so typically start showing signs and the younger typically the worse the condition is. They also told us it is hard to see/find dysplasia on younger children then on older people. Our son is on five seizure meds three times a day all of which offer no relief and also tried the keto diet with no stopping of his seizures. He no longer has super long episodes but does have a drop seizure a day that we administer oxygen with to try and keep oxygen going to the brain. We are currently going through lots of test to try and see if we can remove more bad brain. He functions so well...no one would ever know by looking at him as to what he is fighting. He walks, plays, runs, going through the typical terrible twos just like any other kid. He does have problems speaking and to the trained eye weakness can be seen on the left side. As far as liquid keppra...my son liked it but he is on all pills now that we crush and syringe with juice. Sorry I can't give advice there. My kid does spit what he can out though...he hates all his meds lol. As far as surgery....I was told the brain that is dysplasied is no good and has no real purpose but to seize so removing it should not have a real big effect on your child and the younger the surgery is done the easier the recovery. My son did not seem to have any real problems after except for giggling and crying and being mad...he had to relearn all that but every kid is different and my child was on a TON of drugs, intubated, and had a month of basically non stop seizure activity so that could have had a lot to do with it. CD is scary and I wish I could say it gets easier but I don't think it does you just learn to accept it as normal. Stay strong and if you ever need to vent about what your going through I will listen.....and vent with you :). Good luck!

Linda - posted on 12/03/2012

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Hi Lara,

I have son with cortical dysplasia type 2b. He was diagnosed 26 years ago with intractable seizures. We were always told he had a bad case of epilepsy! Finally after 100's of seizures and many doctor evaluations a Dallas doctor( Dr Agostini) discovered they were focal coming from the right frontal lobe. Dr Gary Mathern a UCLA pediatric neurosurgeon performed surgery

and the pathology showed CD type 2b. The outcome his seizures were decreased by 75%.

A year later Matern performed a second surgery. Jeff now has 6 seizures a month. Before the surgeries he was having 4 to 6 seizures a night! I too live in Dallas and highly recommend the UCLA team to be the best. I just wish they would have discovered this when he was 4 the seizures has taken a toll on his cognitive abilities. PLEASE look towards the surgery, cd type 2b is DRUG resistant at this time. I am looking for research for a drug that will help our little boys! God bless,

Alecia - posted on 08/16/2012

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Hi Lara- I too have a n almost 4 year old with Crtical Dysplasia of sorts (increased sucal/gyral folding), Epilepsy and ASD secondary to is all. We love in Hawaii, but flew to Houston to see Dr. Gretchen Van Allman and her team at Memorial Hermann Hospital. They have a great EMU and we were able to get our diagnosis there.

We have no trouble getting the Keppra in Mae, but now that we are maxed out, we are still having seizures and now seeing the return of what appears to be loss of motor control. We are still awaiting genetic panels to rule out other disorders that could cause this, but it is very frustrating. Just as soon as I think she is stable, something else comes up.

It seems difficult to find info regarding Left Parietal lobe issues since they are seen less than say Frontal Lobe issues. We are very new to this diagnosis and frankly, everyone was willing to just treat the ASD and ignore what I knew were absent, parietal and partial complex seizures. I forced everyone's hand to get us into MHH, otherwise we wouldn;t have found this at all! I look forward to hearing your experiences. . . .Alecia

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