Some Questions

[um-adam]

Hi,
I am new here but have been reading for a while. In August, I gave birth to an otherwise healthy boy who started having convulsions during his sleep when he was about 2 or 3 days old. With each convulsion, all four of his limbs would twitch for 20-30 minutes. This was happening up to 4 times each day.

My son's MRI was fine as were all of the numerous blood tests they performed on him. His EEG, however, was abnormal, and he was prescribed phenobarbital, which he is still taking, nearly 4 months later.

The convulsions have changed over the last 4 months and now only seem to affect his hands, particularly his right hand. The convulsions only happen while he is asleep and are lighter and less frequent now (about every 1-2 weeks instead of every day). He has had some episodes of sleep apnea, which the doctor said is likely seizure activity, and he also had convulsions after his most recent vaccines.

Our doctor seems like a good one but I don't always have time to ask everything on my mind. To start with:

1. What kind of seizures might my son be having?

2. Why do we need to do an EEG each time we adjust his medication?

3. Does anyone else have a child who fits the same pattern as mine? Can you tell me about your journey?

4. Should I be concerned about future vaccines?

And a biggie:

5. Do seizures cause damage to the brain?

Thank you so much for any insights you can offer. This is all very new and confusing to me.

[epileric]

1) Here is a description of each type of seizure. This might make it easier.

2) I've never heard of needing an EEG every time you change medications but that might not be a bad thing. I'm thinking if one med doesn't work it still might change the seizures a bit and give the neurologist a better idea of what med is more likely to help so nothing wrong with having too many EEGs. I'd rather have too many than too few.

4) As for vaccines, there really had not been any proof of a connection between them & epilepsy. http://www.epilepsyresearch.org.uk/n.../pertussis.htm

In the past, children with epilepsy or a family history of epilepsy weren’t given the whooping cough vaccine. There were concerns that the whooping cough vaccine can directly cause febrile convulsions and epilepsy. Studies since then have shown there is no link. The whooping cough vaccine is now routinely given to children with epilepsy.

http://www.babycentre.co.uk/baby/hea...isationsafety/

5) The seizures themselves don't really cause big damage to the brain but a seizures is when a neuron trips or stumbles so the more seizures someone has the more likely that neuron is to remember where it tripped & repeat it.

Meanwhile, make yourself at home & look around. There's lots of people here with more info

[um-adam]

Thank you so much for taking the time to reply to my message. I really appreciate it. I took a look at the link on vaccines and read that it is sometimes recommended for infants to delay vaccinations until their condition is more stable. This is something I will ask my son's doctor about at our next appointment.

[epileric]

Sorry, I forgot to put in the link showing the types of seizures http://www.webmd.com/epilepsy/guide/...their-symptoms

Also, Good idea to ask your doc. Keep us updated how things go.

[um-adam]

Thank you for the link. I think my son might be experiencing "clonic" seizures, which WebMD defines as "repetitive, rhythmic jerks that involve both sides of the body at the same time." Can someone help me further understand how to classify the seizures when they only take place during sleep?

[AnnaM]

My journey has just begun as well...I wish I had more help to offer you. My sons seizures are nocturnal..Tonic clonic absence and I believe his neurologist said frontal. My son is 3, will be 4 mid January. Besides his neurologist, he has seen a geneticist (clean there for now) and will be seeing a pediatric endocronologist to look into a possible hypothalmic disorder, as well as seeing a sleep speciallist (consult early January)

[um-adam]

Just wanted to update everyone on the vaccine issue. As I mentioned above, my son had a seizure after a series of immunizations in November so I was concerned about the the next set, which he was supposed to do in December. Took him to the neurologist, who said that children with epilepsy are more likely to have seizures after vaccines because their seizure threshhold is lowered due to the impact on their immune system. He felt, however, that we should not delay my son's shots and recommended that we give him an extra dose of phenobarbital any time he has shots. This is what we did, and he made it through December's immunizations with no seizures.

While all of this has been taking place, my 17-year-old son suddenly became ill. From the description of how he felt, I thought he might be having seizures as well. Took him for an EEG and discovered that he, too, has epilepsy and probably has for years. I am so overwhelmed by what has happened over the last few months. Is epilepsy genetic? I can't think of anyone in either my family or in my husband's family who has this condition.

[AnnaM]

Just wanted to update everyone on the vaccine issue. As I mentioned above, my son had a seizure after a series of immunizations in November so I was concerned about the the next set, which he was supposed to do in December. Took him to the neurologist, who said that children with epilepsy are more likely to have seizures after vaccines because their seizure threshhold is lowered due to the impact on their immune system. He felt, however, that we should not delay my son's shots and recommended that we give him an extra dose of phenobarbital any time he has shots. This is what we did, and he made it through December's immunizations with no seizures.

While all of this has been taking place, my 17-year-old son suddenly became ill. From the description of how he felt, I thought he might be having seizures as well. Took him for an EEG and discovered that he, too, has epilepsy and probably has for years. I am so overwhelmed by what has happened over the last few months. Is epilepsy genetic? I can't think of anyone in either my family or in my husband's family who has this condition.

I don't know but I am curious if genetic as well...Worried about my 2 yr old C