My daughter is 5 months old (born Dec 2013) and was just diagnosed with epilepsy after having 21 tonic clonic seizures in 3 days and spending 8 days in the PICU at a SF children's hospital. This is all very scary and I'm trying to navigate it all as best I can and learn as much as possible to be my daughters advocate. She is currently on Keppra and Trileptol and B6 with Diastat as our rescue. My main question is this...does it ever get less scary? Right now I am terrified of nighttime (when most of them happen), seizures, my child's future, and what's to come. It all feels really overwhelming. TIA for your help <3
Mother of 5 mo infant just diagnosed
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arnie
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Hello and welcome,
I have 3 kids so I can sort of imagine how scary this must be for you. One of my daughters has epilepsy, but she was an adult (about 23) when she had her first seizure, and I had had epilepsy for over 20 years at the time, so for me it wasn't all that hard to deal with. I used to be a medical social worker, however, and I dealt with a number of people whose babies and young children had serious diseases or conditions. I can tell you from those experiences that things definitely do get less scary. Try to get support and information now from a hospital social worker or from a parent support group, if one is available. Of course you can meet people here, and communicate with us, but right now you certainly need face-to-face assistance as well. OK? As worrying about the future, that's a very natural thing to do, but the best thing you can do right now is take things a day at a time. You don't know how this is going to play out so you will only be worrying about a bunch of possible futures, only one of which will happen, so try to stay focused on what's going on now. That's more than enough to deal with. Get good support and try to take care of yourself, especially now while you have lots of other people to be taking care of your baby. I wish I could be there in person to talk with you, so I hope you can find a good social worker at the hospital who can be there with you and help you navigate all of this.
Keep in touch, all right?
I have 3 kids so I can sort of imagine how scary this must be for you. One of my daughters has epilepsy, but she was an adult (about 23) when she had her first seizure, and I had had epilepsy for over 20 years at the time, so for me it wasn't all that hard to deal with. I used to be a medical social worker, however, and I dealt with a number of people whose babies and young children had serious diseases or conditions. I can tell you from those experiences that things definitely do get less scary. Try to get support and information now from a hospital social worker or from a parent support group, if one is available. Of course you can meet people here, and communicate with us, but right now you certainly need face-to-face assistance as well. OK? As worrying about the future, that's a very natural thing to do, but the best thing you can do right now is take things a day at a time. You don't know how this is going to play out so you will only be worrying about a bunch of possible futures, only one of which will happen, so try to stay focused on what's going on now. That's more than enough to deal with. Get good support and try to take care of yourself, especially now while you have lots of other people to be taking care of your baby. I wish I could be there in person to talk with you, so I hope you can find a good social worker at the hospital who can be there with you and help you navigate all of this.
Keep in touch, all right?
Hi, and welcome to the forums. There are a lot of great people here, and perhaps some from your area of residence who can direct you to specific people or organizations that can assist you. The Children's Hospital will have social workers and other counselors available to help guide you in caring for your daughter; don't hesitate to ask your child's neurologist or nurse about what kind of support services are available to you to help you through this.
One thing that goes through my mind is acquiring a seizure monitor for your baby that can alert you when she has a seizure at night or during nap time. Sometimes just an ordinary baby monitor with audio is enough, but if you are concerned you may not hear her if she has a seizure, you may be able to sleep more soundly yourself with an actual seizure monitor for your child's crib. The hospital may also be able to give you guidance in this area as well.
As arnie says, keep in touch!
One thing that goes through my mind is acquiring a seizure monitor for your baby that can alert you when she has a seizure at night or during nap time. Sometimes just an ordinary baby monitor with audio is enough, but if you are concerned you may not hear her if she has a seizure, you may be able to sleep more soundly yourself with an actual seizure monitor for your child's crib. The hospital may also be able to give you guidance in this area as well.
As arnie says, keep in touch!
Sorry to hear about your daughter.
One fact is PICU/SF is one of the best, in terms of care, Dr, nurses (know someone who had worked there). For epileptologist, I went to Dr Fisher @ Stanford and he is just awesome. However, you may need more pediatric neurologist support now. Ask your ped/neuro about all the precautions to take against SUDEP/SIDS. I do not want to cause you alarm but just to identify good/bad practices that any parent would take with an infant.
Take one day at a time. The baby's brain is amazingly plastic and adapts significantly to the sensory inputs you give her.
One fact is PICU/SF is one of the best, in terms of care, Dr, nurses (know someone who had worked there). For epileptologist, I went to Dr Fisher @ Stanford and he is just awesome. However, you may need more pediatric neurologist support now. Ask your ped/neuro about all the precautions to take against SUDEP/SIDS. I do not want to cause you alarm but just to identify good/bad practices that any parent would take with an infant.
Take one day at a time. The baby's brain is amazingly plastic and adapts significantly to the sensory inputs you give her.
CurlyGirl43
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So sorry to hear about your daughter. I'm getting teary just reading your post since you are where I was in 2010 when my daughter had her first seizure at 8 months. You are lucky to have found this forum so quickly to help you and to reach out for support/advice. I only just found this site today. It does get less scary over time...knowledge is power...so you are doing the right thing. Keep in mind when things calm down and depending on how things play out, to reach out to your county Infant & Toddler Program if you are concerned with any delays in the future due to her seizures. They have guided me well with information and testing. Another good resource is your local ARC chapter if you should need info, they are great as well. We were lucky enough to have a doctor that had the knowledge/experience to get us tested for the SCN1A gene and that's how we found the diagnosis of Dravet and also that I was the carrier of the gene that was passed on to my daughter. If they can't figure out her epilepsy make them run this test. Its not the "go to" test for most doctors so you may have to push it. But if you can't find an answer its worth taking the test to rule it out. I've heard of families that have gone thru so much trying to figure out their child's condition and it took month/years for their doctors to finally run the SCN1A test.....then to find out they have Dravet. The sooner you can find out/rule out conditions, the better. Best of luck!