Childhood Epilepsy

Comment

Comment by Stacy F on August 24, 2009 at 8:36am

Thanks Marcey and Karin. I feel like I am in limbo here. I hate to medicate my daughter if she is not having seizures but it seems like the only option and a trial and error type of issue. I just wish they would have caught something on the EEG so I could know for sure and move on from here. Now we are just still left guessing. It is so frustrating. Thank you for your advise. I am documenting daily what is going on with her so the neuros can just look at it and I don't have to recall or miss anything when speaking to them.
One thing that I had no idea about was the smell issue. It was almost an AHA! moment when they asked is she said things smelled funny. She has commented several times saying "Do you smell that?" I had no idea what she was talking about b/c I didn't smell anything, however we live by a farm so I just contributed it to maybe her nose being more sensitive than mine (which could be the case still)

Comment by Marcey Chapman on August 23, 2009 at 12:44am

It does sound like it could be seizures. There is one thing I've learned through Hannah's ordeal is that seizures can present themselves in a variety of ways. Hannah's has changed and developed through the years. I think an MRI would be a good idea.

We were on Keppra and it was not a good one for us. Hannah was a very happy child and while she was on keppra she was miserable. She was an emotional mess and cried constantly. I thought we'd lost our happy girl forever. It didn't help her seizures either. I do know that some people take it and do fine however so do not judge the drug by our experience. It could work wonderfully for y'all and you may not see the behavioral side effects we experienced. Some people are even able to add B6 and it helps with the side effects. It did help us some but not enough.

I hope it works for you and that things settle down.

Comment by Karin Wells-Kilpatrick on August 23, 2009 at 12:24am

It does sound like it could be seizures. It is common for my daughter Kira to wet herself during a seizure or even lose bowel control, but we also lost the potty training we had gained when she had seizures back in February, so it has been again a problem during the day. Kira's seizures went quickly into terrible uncontrollable clusters from the beginning, so it was pretty obvious that she was having tonic clonic seizures and stopped breathing. So we were put on medications right away. So since we use rescue meds and often are hospitalized and put on IV loading doses of meds when clusters start, it's hard to say if the haze, speech and balance issues are residual from the seizure or from the meds.

We have been on Keppra, but I don't recall that it had major side-effects, but it also didn't help Kira's seizures. I know others have had behavioral issues, and lots of crying on Keppra. Since our seizures and after-effect weren't quite of this pattern, it is possible that Keppra is a good match for your daughter. I don't know that I would be ready to believe that it couldn't be seizures if this continues on Keppra, since Keppra doesn't work for all kids, but getting the MRI to rule out other possibilities isn't a bad idea.

Comment by Stacy F on August 22, 2009 at 9:15pm

My daughter just underwent 48 hr monitoring at the hospital due to a second episode this summer. The EEG showed no activity suspicious for seizures but the neuros think that seizure is the only explanation for her "episodes." She has woken up 2xs this summer (last week being the second time) unable to walk normally in her walker and hazed. She had issues with forming sentences and wet herself at night as well as fall out of bed and wake up several times the next night crying. Does this sound like seizures to you all? They want to start her on Keppra to prevent other episodes from occuring and figure if she has another on the Keppra then something else is going on and an MRI is warranted but they do not think it is something else. What are you all's experience with this med and has anyone had seizures like this? Thanks

Comment by Susan (Sears) Fish on May 26, 2009 at 9:40am

We did 2 separte weeks of epilepsy monitoring in the Peds unit at Cleveland Clinic in 2006. That was before our SD Liese. I was very stressed, as both times we did ICU for satius. When you see the Dr. Praying at the bed side...well you guys know.

Liese is wonderful with Nick, but I think she would have been a great for my stress during the visits. The stress of not knowing & then the thought of brain surgery was more than I could handle & I got hives. Good luck & lots of prayers

Comment by Marcia Kirchhofer on May 22, 2009 at 8:04pm

We just got word today that Hannah will be admitted to the epilepsy monitoring unit on Tuesday. We will be there at least a week if not two. We have been off meds and are trying to induce them to capture on EEG. This is the last part we need for the neuro team to determine whether partial lobectomy is a possiblity. Her seizures have definitely been picking up and poor Blitzen is on overtime!! Her complex partials have been daily and her tonic clonics are becoming regular at night. I know he has to be exhausted!! He has done so well though. I couldn't be a more proud mama of him!! Keep us in your prayers. I feel like I can deal with whatever the answer is, I just want to be out of limbo! Either yes, or no.....

Comment by Marcey Chapman on May 22, 2009 at 5:46pm

Well, It's been foreve rsince I posted to this group. We're in the waiting mode again. Hannah's testing was put off until July. They are going to test for a new gene mutation deletion PCDH-19 that is found in girls who do not have the SCN1A deltion/mutation but are considered clinical for DRAVET. Amazing and Crazy stuff! Anything new with anyone?