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Our Son (first child) had his first seizure on day 2 of life, it included apnea (labored breathing and his skin turned dusky). Doctors gave him every test, and never found anything out of the normal: clear MRI, no infections, no defects in any way of his brain, heart, lungs, etc. Originally they thought his apnea was due to reflux or breath holding spells, because they could not catch an event on the EEG. It took 3 weeks for them to catch an event while he was on the EEG before they were able to say it was a seizure and diagnose him with right temporal lobe epilepsy. He averages around 3-4 seizures per week and is now 8 weeks old. When he has an event, he has difficulty breathing and becomes gray/blue around his mouth, his arms go up by his face and his fists are clinched. Afterword, he is extremely tired and sleeps for 30 minutes before waking to his normal self. His early seizures (non-medicated) lasted as long as 3-5 minutes, but since medication, are down to less than 1 minute. The doctors have him on Keppra (currently 0.7 ML, every 8 hours). The seizures have become more mild, but he is still having them at the same frequency. We continue to have hope that we can find the right medication to stop the seizures, and of course, that he will outgrow it. The disappointment when he has a seizure is hard because it feels like we are not getting closer to answers. Is there anyone out there with a similar story that they would like to share? Did Keppra ever stop the seizures?

Comments

Welcome CalvinVery

Submitted by just_joe on Thu, 2017-04-13 - 21:00

Welcome CalvinVery interesting and hard of your family. My story would be longer in some ways and I was about 13 y/o. The doctors looked at what was there and were battling to find an answer to what was happening with your son. They did tests as you pointed out. Clean brain nothing wrong. Everything else looked and worked like it was supposed to. They just had something happening and not much time to see it and nothing was showing up on tests. Depending on where you were in the country would also tell you how many different specialists were involved. Lungs, Brain, Sleep, gastroenterologists and many others, If something was on the brain or in the lungs they could start there. But nothing breathing was looked at. they probably looked at the different EEG's because many different ailments can be located in the central nervous system. Only ONE is epilepsy. The EEG is a test showing the electrical output coming from the brain. Neurologists search it for abnormalities. Spikes, Waves, epileptiform or seizure activity (not a seizure). Are the ones that are seen with a person with epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain. When they see abnormalities they know where in the brain they came from. By seeing them they would have looked closer in that area of the brain on the MRI of find out if ANYTHING was different. For me the left lobes had scared brain tissue which showed up when I was between 6-8 yoa. But your sons was clear. The medication is working and has been for the short period of time he has been on it. By getting the seizures milder it is showing it is working. But you may not have see some of his seizures. Absence seizures are short periods of time. The person in them look like they are daydreaming. A focal seizures is the same and they will look like that too but then some move and do things without you knowing they are or were in a seizure.I have been using keppra for a little about 15 years. By working with doc and changing to keppra my seizures have been reduced. The length in them has also been reduced. A seizure that used to last 2-8 minutes now lasts 3-8 seconds.. The time to get back to normal was 15-45 minutes and at times longer does no exist now. I A seizure is an electrical impulse hitting wrong in the brain which causes a chain reaction. Your body runs on electricity. What happens when you have something drain your electricity? A power drain and you have to recharge it. Think of you cell phone... The more you use it the more power it needs and you have to charge it more often. A seizure is a power drain so your son going to sleep is getting recharged. He wakes up and he is his same self happy laughing and wanting milk. For all we know he may grow out of it. Also understand that what you are looking for is very hard to find. That golden point. The right medication with the right dosage at the right time. Each person is different. As a person changes the dosage needs to change. Generally they are set with weight and size. So keep an eye or at least think about that if he starts having a few more seizures then his dosage may need changing. If he is to take meds 2 times a day then ask the neurologist how far apart do those dosages need to be. Always have all his doctors know all the different meds he is taking. One medication can counter another. Over the counter meds can to so always check with the pharmacists when it come down to them too.Research this site you can learn a lot. Find the diary and use it...For me I worked with Doc and found that Golden point since I will never be completely seizure free I Hope this helps and your son gets seizure freeJoe

Welcome CalvinVery interesting and hard of your family. My story would be longer in some ways and I was about 13 y/o. The doctors looked at what was there and were battling to find an answer to what was happening with your son. They did tests as you pointed out. Clean brain nothing wrong. Everything else looked and worked like it was supposed to. They just had something happening and not much time to see it and nothing was showing up on tests.  Depending on where you were in the country would also tell you how many different specialists were involved. Lungs, Brain, Sleep, gastroenterologists and many others, If something was on the brain or in the lungs they could start there. But nothing breathing was looked at. they probably looked at the different EEG's because many different ailments can be located in the central nervous system. Only ONE is epilepsy. The EEG is a test showing the electrical output coming from the brain. Neurologists search it for abnormalities. Spikes, Waves, epileptiform or seizure activity (not a seizure). Are the ones that are seen with a person with epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain. When they see abnormalities they know where in the brain they came from. By seeing them they would have looked closer in that area of the brain on the MRI of find out if ANYTHING was different. For me the left lobes had scared brain tissue which showed up when I was between 6-8 yoa. But your sons was clear. The medication is working and has been for the short period of time he has been on it. By getting the seizures milder it is showing it is working. But you may not have see some of his seizures. Absence seizures are short periods of time. The person in them look like they are daydreaming. A focal seizures is the same and they will look like that too but then some move and do things without you knowing they are or were in a seizure.I have been using keppra for a little about 15 years. By working with doc and changing to keppra my seizures have been reduced. The length in them has also been reduced. A seizure that used to last 2-8 minutes now lasts 3-8 seconds.. The time to get back to normal was 15-45 minutes and at times longer  does no exist now. I A seizure is an electrical impulse hitting wrong in the brain which causes a chain reaction.  Your body runs on electricity. What happens when you have something drain your electricity? A power drain and you have to recharge it. Think of you cell phone... The more you use it the more power it needs and you have to charge it more often. A seizure is a power drain so your son going to sleep is getting recharged. He wakes up and he is his same self happy laughing and wanting milk. For all we know he may grow out of it. Also understand that what you are looking for is very hard to find. That golden point. The right medication with the right dosage at the right time. Each person is different. As a person changes the dosage needs to change. Generally they are set with weight and size. So keep an eye or at least think about that if he starts having a few more seizures then his dosage may need changing. If he is to take meds 2 times a day then ask the neurologist how far apart do those dosages need to be. Always have all his doctors know all the different meds he is taking. One medication can counter another. Over the counter meds can to so always check with the pharmacists when it come down to them too.Research this site you can learn a lot. Find the diary and use it...For me I worked with Doc and found that Golden point since I will never be completely seizure free I Hope this helps and your son gets seizure freeJoe

Welcome CalvinVery interesting and hard of your family. My story would be longer in some ways and I was about 13 y/o. The doctors looked at what was there and were battling to find an answer to what was happening with your son. They did tests as you pointed out. Clean brain nothing wrong. Everything else looked and worked like it was supposed to. They just had something happening and not much time to see it and nothing was showing up on tests. Depending on where you were in the country would also tell you how many different specialists were involved. Lungs, Brain, Sleep, gastroenterologists and many others, If something was on the brain or in the lungs they could start there. But nothing breathing was looked at. they probably looked at the different EEG's because many different ailments can be located in the central nervous system. Only ONE is epilepsy. The EEG is a test showing the electrical output coming from the brain. Neurologists search it for abnormalities. Spikes, Waves, epileptiform or seizure activity (not a seizure). Are the ones that are seen with a person with epilepsy. What starts a seizure is an electrical impulse hitting wrong in the brain. When they see abnormalities they know where in the brain they came from. By seeing them they would have looked closer in that area of the brain on the MRI of find out if ANYTHING was different. For me the left lobes had scared brain tissue which showed up when I was between 6-8 yoa. But your sons was clear. The medication is working and has been for the short period of time he has been on it. By getting the seizures milder it is showing it is working. But you may not have see some of his seizures. Absence seizures are short periods of time. The person in them look like they are daydreaming. A focal seizures is the same and they will look like that too but then some move and do things without you knowing they are or were in a seizure.I have been using keppra for a little about 15 years. By working with doc and changing to keppra my seizures have been reduced. The length in them has also been reduced. A seizure that used to last 2-8 minutes now lasts 3-8 seconds.. The time to get back to normal was 15-45 minutes and at times longer does no exist now. I A seizure is an electrical impulse hitting wrong in the brain which causes a chain reaction. Your body runs on electricity. What happens when you have something drain your electricity? A power drain and you have to recharge it. Think of you cell phone... The more you use it the more power it needs and you have to charge it more often. A seizure is a power drain so your son going to sleep is getting recharged. He wakes up and he is his same self happy laughing and wanting milk. For all we know he may grow out of it. Also understand that what you are looking for is very hard to find. That golden point. The right medication with the right dosage at the right time. Each person is different. As a person changes the dosage needs to change. Generally they are set with weight and size. So keep an eye or at least think about that if he starts having a few more seizures then his dosage may need changing. If he is to take meds 2 times a day then ask the neurologist how far apart do those dosages need to be. Always have all his doctors know all the different meds he is taking. One medication can counter another. Over the counter meds can to so always check with the pharmacists when it come down to them too.Research this site you can learn a lot. Find the diary and use it...For me I worked with Doc and found that Golden point since I will never be completely seizure free I Hope this helps and your son gets seizure freeJoe

Every case is different, so

Submitted by mereloaded on Fri, 2017-04-14 - 09:21

Every case is different, so gauging from other people's experiences and with so many Epileosy syndrome and severity levels it is hard to tell.Your baby is very young and treatment options extremely limited because of it. As your child grows, other treatmement options will become available. Keppra is a good, wide spectrum medication with the fewest side effects. It is a good first aed to start treatment with.Only your doctor can tell you about prognosis and treatment.

And yes, keppra did stop my

Submitted by mereloaded on Fri, 2017-04-14 - 09:23

And yes, keppra did stop my son's seizures, but he started having them when he was 15 and his condition is considered mild an stable.