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No Diagnosis
Mon, 08/14/2006 - 08:26Topic: Parents & Caregivers
My 22 month old son has been inpatient for seizures for more than 30 days since May 1, 2006. On May 1, Beau was 18 months old, he vommitted and then began having a complex partial seizure, mostley in his eyes, left side of his face and neck and left arm. His seizure lasted over an hour and was stopped in the emergency room. We then stayed in the PICU for two weeks looking at several reasons for the seizure. Nothing was found. Beau has had three more seizures since May 1, all lasting close to an hour except the most recent one was over two hours. We go to the emergency room every time to have the seizures stopped. We had a diagnosis of ADEM for a while and went through a steroid treatment for 5 days. Beau seemed to get better, he seemed strong and almost like his old self. We were so hopeful that we had a diagnosis, but now after this fourth seizure and some leg movements that the doctors aren't sure what to call he is back to being a mystery. My husband and I are very scared especially since we don't know what to expect. Beau will have some genetic testing done later this week, however nothing even remotely like this runs in our families. Beau is on so much medication that he can't even hold his head up. He was on zonogran, phenobarb and dilantin for a week and he barely woke up to eat. His neurologist stopped the dilantin on Friday because both the dilantin and the phenobarb levels were much higher than therapeutic. I have a call in now to see why he is so medicated. This nightmare since May 1 doesn't have an end in sight. We are told that we might not get a diagnosis other than seizure disorder. That's fine but we want our son to wake up and have some quality of life.
Any advise on medication, coping and patience is needed.
Comments
Re: No Diagnosis
Submitted by EKlairsmom on Mon, 2006-08-21 - 08:29
I am so sorry to hear that your son has had it so rough since May. My 3 year has seizures and as parent their is nothing more scary than watching this happening and wonder WHY?? We still do not know for sure why? with Emily Klair (they think trauma in womb, I had part of my placenta pull away)we have been diagnosed at 6 months when she had one at the Dr.'s office..I was there for my son who had an ear infection. I knew that she had been having something and had been to the Dr. telling him what had just happened at home and why we rushed in so scared but she was sleeping it off or was recovering fine. He set her up with an EEG which came back normal so he said he doubted it was seizures..till that day in his office I thank God everyday he saw it, he started her on Trileptal and sent us to a ped. nero. at Vanderbilt. We have been on Zonegran and I can say Emily Klair did not respond well to it and her seizures were not controlled by it either. We are now on Lamictal and Keppra, we are slowly did I say slooowly weaning her off Lamictal,because she was acting more drugged and we want the seizures undercontrol but at the same time we want her to play and have as normal a life as possible. I hate that this is happenig with your son and know that you may never know more than Seizure disorder..hang in there. Give your son Beau a hug from me and Emily Klair and Know that you are not alone and I will be praying that they find the meds that will help control the seizures but that also lets him be a rowdy little boy!!!! Good Luck and feel free to e-mail me anytime. wkrobinson@charter.net
Emily Klair's mom...Kari
Re: No Diagnosis
Submitted by ekoorb on Mon, 2006-08-21 - 09:23
Did your doctors consider Benign Occipital Childhood Epilepsy (BOCE)? My daughter was diagnosed with this in March. While she is 5 years old and the more typical onset is at 4 to 5 years old, some of the other factors you mentioned are similiar to BOCE. Typically these seizures occur at night but can be during the day and they begin with vomitting and then the child will stare off and the eyes shift to one side. The seizures can last from 2 minutes to over an hour. I am sorry you are going through this but if this form of E applies to your child, it is a very good prognosis because most kids outgrow it within a few years. The scary thing about BOCE is a lot of doctors are not familiar with it and when your child seizes for an hour, they think something else may be wrong. Our doctor gave us Diastat if she ever has one over 5 minutes. The doctor who discovered BOCE is Dr. Panayiotopolous. Please look this up with the name BOCE because it might give you info. Does your child always vomit before the seizures or make a sound as if he is going to vomit? Please write back.
Re: No Diagnosis
Submitted by kayakmom on Mon, 2006-08-21 - 04:44
seizure disorder IS a diagnosis though. I am not sure what you are looking for beyond that....70 percent of the time there is no known cause, I know that seems so vague and you want to clear up ALL answers. We often just DO NOT know why it occurs or what causes it.... seizure disorder of epilepsy is a blanket term for recurring seizures. I am so sorry that your little one has started down this awfully scary road! I hope they will find proper medications that will not overly sedate him yet give him better quality of life! Hang in there! Ginny