Anyone's LO's have seizures???...asking for my sister

A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

Anyone's LO's have seizures???...asking for my sister

Postby MarineWife30 » Mon Nov 17, 2008 8:35 pm

My nephew Luke has been having seizures since he was 7 months old. They're getting much worse now to the point that my sister and her husband are trying to get him a seizure alert dog. Just wondering if anyone else's little ones have seizures, what they've been diagnosed with and how they're treating them. My sister wants to go to a doctor who specializes in preventative medicine but insurance doesn't cover it and she's wondering if she should bother with this. Any advice would be welcome. Here's Luke's story if you want to read more (his story is the 3rd one down right now:

http://www.4pawsforability.org/dream.html
User avatar
MarineWife30
Angel
Angel
 
Posts: 447
Joined: Mon Aug 14, 2006 12:00 am

Postby hoping4another » Tue Nov 18, 2008 8:43 am

Hello,
I am sorry that your sister has to go through this. My first LO had seizures. He had the tonic-clonic type (grand mal). He was on phenobarbital and responded pretty well to the medicine, but he had seizures every time he outgrew the dosage. The docs did several tests and could never find a reason for his seizures. It was awful and scary and he would have them several times a day when he would have them. He would stop breathing and they would last for several minutes. This all started about 2 days after he was born and gradually got worse.
I thought that he would never be "normal" and that we would be looking at developmental delays etc.
My son has not had a seizure in more than 3 years. He is a very bright and fun (and stubborn) 4 year old boy. He has been off the meds for over 2 years. Many times children have these and they are outgrown.
I know the desperation she must be feeling.
Let me know if you have any other questions anf good luck.
Image

me: 32
DH:35
DS1: 5 years old
DS2: born 10-8-08
baby BOY #3 due Aug 31, 2010!!!
User avatar
hoping4another
Angel
Angel
 
Posts: 438
Joined: Sun Feb 17, 2008 1:00 am

Postby bec_83 » Sun Jul 25, 2010 2:51 am

My daughter started having seizures at 10 months old. She wasnt doing what she should have at that age either and we took her to see a paediatrician who said straight away that she has Cerebral Palsy. She was sent for CT scan to comfirm it. She was diagnosed with mild left hemiplegia which is a type of Cerebral Palsy but we are VERY lucky she is only affected very mildly. Alot of people dont even know there is anything wrong with her when looking at her. She has abit of a limp when she walks and is slow with her speech but other then that she is fine. She developed Epilespy because of the trauma to the brain before birth. She is on Epilim morning and night which has worked wonders. She was seizure free for over 12 months and then was having one every months for 7 months but again hasnt had one for 5 months (touchwood). There are alot of medications that prevent seizures but tis just trial and error. My daughter started on Tegretol but it was bad and made her worse and alot of people say that about Tegretol but everyone is different.
bec_83
Addicted
Addicted
 
Posts: 696
Joined: Fri Jul 23, 2010 12:00 am

Postby plus1makes7 » Thu Jun 09, 2011 9:30 pm

My 4 year old had her first seizure last November. They said it was febrile and would not happen again. She had her second one on New Years day, and there was no fever. We decided to do an EEG, which showed abnormally slow brain waves. She is not developmentally slow, and this could have been her brain recovering from the seizure she had 3 days prior, but we decided to go with an MRI. Two or more seizures that are unprovoked are epilepsy, so we have been told, and she is now on Keppra(an anti-sezure med). The MRI showed a mild brain abnormailty where her brain did not completely form when she was in utero.
She has not had any since, but like the above post, we are worried that when she outgrows that dosage, she will have another. We have been told she could outgrow the seizures, that if she is seizure free for 2 years we can wean the meds, or that she may have them for the rest of her life. At this point we are glad we know what we are dealing with and are thankful the severity is not what it could be.
As far as preventative medicine, I am not sure that would be my next step? I would see a neurologist and have an MRI a CT an EEG, what ever you can to try to determine why they are so frequent and if you can pinpoint the cause. Sending prayers, its the scariest thing I have had to deal with, and to so many our situation is minor in comparison. I can only imagine your sisters heartache.
plus1makes7
Hot Mama
Hot Mama
 
Posts: 231
Joined: Mon Jun 06, 2011 12:00 am
Location: AZ


Return to Special Needs Babies

cron