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Need to hear similar stories for support and hope

Thu, 04/13/2017 - 15:05
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

Every case is different, so

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

Hi, my son started having

Submitted by JJ100118 on Mon, 2019-11-11 - 11:33
Hi, my son started having seizure the second day of his life too. They did every single tests and couldn't find a reason. He was having multiple seizures a day the first week of his life. Doctor first used phenobarbital, but saw more seizures when medicine dropped to a therapeutic range. They then added Tegretol to his medicine that seems to stopped the seizure completely. He's been seizure free since 1 month of his life. My son's weened off phenobarbital at 6 months and is only on tegretol now. 

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