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New and overwhelmed
Mon, 04/09/2007 - 13:59Topic: Parents & Caregivers
Where do I start? I'm a homeschooling mom of twin 6 year olds (boy & girl), and we also have 2 girls ages 3 and 2 (almost 4 & 3--they are 15 months apart). My 3 year old, Karissa, had a seizure on 3-13. She stopped breathing, turned blue and I of course called 911. I have never witnessed anyone having a seizure, so this, as most of you know, was a life-changing, terrifying event for me. Since then she has had an abnormal EEG, and normal MRI and CT scans.
As I'm in the middle of school with my twins, I don't have time for a super long post, but hopefully can add more later.
We had a very short and unproductive meeting with our pediatric neurologist last week. He suggested Trileptal, which we have not filled because he did not address our concerns (we have many questions!). The more I read, the more hesitant I am. But he said because of her abnormal EEG and the type of seizure she had (I think partial?) with the non-breathing, she should go on the med.
We are in shock, and are grieving (I cry at the drop of a hat) and are lost in this medical world where no one except our pediatrician is giving us answers. I am pursuing second opinions, but for now the wait is at least 4 mos out with other pediatric neurologists in our area. Our wonderful pediatrician is helping us get referrals.
Does anyone have a preschooler on Trileptal? What are the side effects you've observed? Does anyone have little ones with the non-breathing type seizure? I just need some assurance that we're not alone, and what others are doing for this.
Thanks for your answers in advance.
Margie
Comments
Re: Re: New and overwhelmed
Submitted by bradysmom07 on Fri, 2007-04-13 - 11:17
Hi Margie
I'm new on this site as well and can relate to how you feel. My son,now 21 months, was diagnosed with a seizure disorder at 8 months. He has been mostly controlled on meds but when he gets sick we end up back in the ER with more seizures. The scariest are the big ones. I wanted to let you know that for us Trileptal has been great. This one was added after my son still had seizures on Keppra. So far no major side effects, Keppra caused a little bit of behavior changes, temper tantrums and agression.Good luck with everything.
Re: New and overwhelmed
Submitted by kaitlynsmom on Mon, 2007-04-09 - 18:33
I don't have any real advice for you, but I can sympathize with you! My daugther Kaitlyn will be 2 in May and just was diagnosed about 2 weeks ago. Our doctor wants to put her on Topamax, but he too didn't address any questions that we had regarding the medicine and the diagnosis, so we haven't started the medicine, I'm terrified of what its going to do to her. We had a normal EEG but we haven't had the MRI yet so I am waiting for that to come back before I start the medicine. We too are wanting to switch ped. neuro's because I want a specialist that deals with E, along with the fact that he has horrible bed side manner, we are searching for a second opinion and the wait is ridiculous...
I just wanted to let you know that your not alone, and I will be thinking of you and your family...
Emily
Re: New and overwhelmed
Submitted by Shar on Mon, 2007-04-09 - 14:35
Hi Margie, Sorry to hear about your daughter. I will never forget my daughter's first grand mal seizure three years ago. Very scary and hers happened driving home from a birthday party with my son sitting next to her. Needless to say at 10, he is a pro, since he was also there to help when she had her 2nd one last year. After her 2nd grand mal in March 2006, her neurologist put her on Trileptal. She had no problems on it at all and he was speaking to me about weaning her off of it. Then in Nov. 2006, she started complaining of "funny feelings" that made her stomach feel like she was going to be sick. At that time her neurologist said it sounds like she is having auras and increased her dosage of trileptal and at that same time she started having real behavioral issues and started becoming nasty and aggressive and having alot of problems in school. I had to pick her up several times because she was uncontrollable. Her neuro had an EEG done and it showed activity so he again increased her trileptal and said if it doesn't work then he will change her medication. We go to see him next week and her behavior has seemed to have gotten worse so I'm sure he will be changing her medication. The thing is I dont know if its from the trileptal itself or she is still having partial seizures. Very scary not knowing. Up until Nov. she was great on trileptal and I too was hesitant on putting her on something at first but in some ways it gave me peace of mind. Not that they can't have a seizure while on the medication but I felt a bit of relief. Now my concern is what is he going to put her on now and will that control the seizures and make her behavior and personality go back to what it was. Hope that helps but just remember, everyone responds to each medication differently so she may not have a single problem on it. Good luck and feel free to keep in touch. It is definitely comforting to know your not alone in this battle.