Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
I feel like I am going over the edge - How do Parents handle this
Wed, 07/07/2010 - 05:18I have been reading alot in the past two weeks on here and here is our story.
My daughter who is 11 suffered her first seizure on June 19th. She was playing in our pool with her best friend who is 12. Thank god our rule is you never swim alone. Dani had been in the pool for about an hour when she looked at Justyce and said "help me" her left arm went tight to her side with her hand bent up and then her head tilted to the left and she went under the water. Justyce who was ten feet away at first thought she was kidding and then realized she wasn't, she swam to her and pulled her up from under the water and held onto to her while she shook violently. Justyce started screaming for us we came out and it took my husband all he could do to pull her out of the pool. The seizure lasted about two minutes and then she fell into a deep deep I think sleep which I found out is postdactyle for about 45 minutes. It took an ambulance an hour to get here as we live in the country and our ambulance was already on a call and they had to send an ambulance from another area. Thank goodness our fire department has a rescue unit and it responded because the ambulance was delayed. Dani stopped breathing about 4 times during the deep sleep. Once the fire department got here they placed her on oxygen once on oxygen she seemed to be alot better. At the hospital once we arrived they performed many tests mri, blood and they kept us for two days. If her friend had not been in the pool our daughter would not be with us.
My real problem now is that I am scared to death to let her out of my sight, I just keep waiting for the next one to happen. They told us that she will likely have another one. How do all you parents deal with this she keeps saying mom take it easy, but I don't want to lose her. I keep feeling like when is the next shoe going to fall. I go from being really weepy to trying to explain to Dani that she can't drive her 4 wheeler right now, and she can't go down to the lake with the other kids because we just don't know. We live on a farm and have AQHA horses that the kids show and they don't want her riding them.
How do all you parents deal with this, do you all feel the same as me or am I just over reacting. Do you feel like you are going over the edge.
Thanks Kim
Comments
Re:
Submitted by jbmom on Sun, 2010-07-11 - 15:24
You aren't crazy and we are in the same shoes, the only difference is our son started w/ seizures at 22 months, he went from having 4/yr to having 30 in the last 30 wks, no one wants to look after him for us, and we don't want to leave him either, he is 7 now.
You may want to look into getting a speically trained dog that can sense when a seizure will occur and can get her to safety, it may help give her some of her freedom back and help ease your mind somewhat.
It's a constant rollar coaster ride for us all, a seizure happens you are on high alert, the more time goes by w/o one your guard goes down until the next one happens.. Hang on for the ride and get some support from your local epilepsy foundation office, they will provide you and anyone interested in seizure management which will help you feel more comfortable dealing w/ the seizures. GOOD LUCK
You aren't crazy and we are in the same shoes, the only difference is our son started w/ seizures at 22 months, he went from having 4/yr to having 30 in the last 30 wks, no one wants to look after him for us, and we don't want to leave him either, he is 7 now.
You may want to look into getting a speically trained dog that can sense when a seizure will occur and can get her to safety, it may help give her some of her freedom back and help ease your mind somewhat.
It's a constant rollar coaster ride for us all, a seizure happens you are on high alert, the more time goes by w/o one your guard goes down until the next one happens.. Hang on for the ride and get some support from your local epilepsy foundation office, they will provide you and anyone interested in seizure management which will help you feel more comfortable dealing w/ the seizures. GOOD LUCK
Kim, I feel the exact
Submitted by KellyO on Tue, 2010-09-14 - 14:52
Kim,
I feel the exact same way. Your story is incredible. My son had is first seizure at 8 mos but it was very minimal eye rolling back in the head, Had EEG done it came back fine, nothing until a few weeks ago when he was in the car he had a full seizure, turned blue, body stiff, and eye rolling in back of head. This lasted what seemed like forever and he came to and threw up violently, then fell into a sleep. He was admitted to hospital, and we saw neurologist again had another EEG done and he is on Keppra now 3 times daily. He was formally diagnosed with epilepsy but we were told he could outgrow it or may have another seizre. That is very unnerving to hear not knowing if and when another one will hit He is a very active boy who loves to run around and play a lot. How do we keep an eye on him yet at the same time let him go back to normal activities. I worry more at night when he is in bed wondering what happens if it is in his sleep. This is new to us and I feel overwhelmed my head hurts .
Kim,
I feel the exact same way. Your story is incredible. My son had is first seizure at 8 mos but it was very minimal eye rolling back in the head, Had EEG done it came back fine, nothing until a few weeks ago when he was in the car he had a full seizure, turned blue, body stiff, and eye rolling in back of head. This lasted what seemed like forever and he came to and threw up violently, then fell into a sleep. He was admitted to hospital, and we saw neurologist again had another EEG done and he is on Keppra now 3 times daily. He was formally diagnosed with epilepsy but we were told he could outgrow it or may have another seizre. That is very unnerving to hear not knowing if and when another one will hit He is a very active boy who loves to run around and play a lot. How do we keep an eye on him yet at the same time let him go back to normal activities. I worry more at night when he is in bed wondering what happens if it is in his sleep. This is new to us and I feel overwhelmed my head hurts .
Re: I feel like I am going over the edge
Submitted by phylisfjohnson on Wed, 2010-07-07 - 08:39
So sorry to hear about Dani...
As far as swimming goes, as you already know, that's a big no-no. If she wants to ride her bike or horses, you could get a helmet....
A friend of mine just introduced me to this innovative new product called the Humpty Hat. (An unfortunate name, I agree. Who wants to be reminded of Humpty Dumpty’s fall from the wall?)
As for medical IDs, the most informational ones are from medicalert.org. They have a very cute one with their "Kid Smart" program. Here's what they say on their website:"We're more than a medical ID bracelet. Our live 24-hour emergency response service links your MedicAlert medical ID to your emergency medical information record (EMIR®). In addition, we provide a live 24-hour family notification service so you're never alone in an emergency. Get the 24/7 protection you and your loved ones deserve, with MedicAlert emergency medical information and identification services."
I hope this helps! Phylis Feiner Johnson www.epilepsytalk.com
So sorry to hear about Dani...
As far as swimming goes, as you already know, that's a big no-no. If she wants to ride her bike or horses, you could get a helmet....
A friend of mine just introduced me to this innovative new product called the Humpty Hat. (An unfortunate name, I agree. Who wants to be reminded of Humpty Dumpty’s fall from the wall?)
As for medical IDs, the most informational ones are from medicalert.org. They have a very cute one with their "Kid Smart" program. Here's what they say on their website:"We're more than a medical ID bracelet. Our live 24-hour emergency response service links your MedicAlert medical ID to your emergency medical information record (EMIR®). In addition, we provide a live 24-hour family notification service so you're never alone in an emergency. Get the 24/7 protection you and your loved ones deserve, with MedicAlert emergency medical information and identification services."
I hope this helps! Phylis Feiner Johnson www.epilepsytalk.com