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5 weeks old baby with seizures

Tue, 12/18/2018 - 20:07
Hi my 2 months old baby was diagnosed with epilepsy at 5 weeks. She is being in Keppra since then and she is doing fine 0.8ml twice a day she weight 9 pounds. MRI was fine, they are doing a series of genetic exams to determine if she has anything on her genes. Is anybody with the same situation!!??????

Comments

Sorry to hear about that

Submitted by Jazz101 on Wed, 2018-12-19 - 20:32
Sorry to hear about that Maylin. Let me first say I am not a mother, nor am I a parent so, as my sister always told me; "Being a parent is a unique something that only parents really do get." As a result, well, I  can only imagine how this has been for you. My sister is a mother. I am sure it's probable that after the neurologist mentioned the genetic exams, well, that probably has you and others questioning yourselves.My suggestion to you is wait on the results. Try not to guess. Guessing only takes us places; makes us question who we are etc. As a result, I hope you, and whomever else might be guessing, can find a way to minimize the guessing, if you are. Just wait on the results. I say wait because a person can have Epilepsy and it not be genetic. Not just that, but a regular MRI is just that; a regular MRI. Like an EEG, they can both come back normal for many with Epilepsy. I spent years trying to get the mapping done because, again, MRIs and EEGs didn't display specifics unless a seizure takes place at the same time. In some patients, the MRIs and EEGs can be more conclusive early. But a host of us went years and years trying to gather where the focal point of seizures really were. Luckily, neurology has advance significantly today. And even so, sometimes it still takes time to gather specifics because of how unique the brain is.Given your son/daughter is just 2 months old, I would recommend finding a hospital with good ratings in "pediatric" neurology and neurosurgery. If you are in the United States, well, may I suggest US News and World Report's hospital ratings? I used them prior to surgery to make sure my hospital of choice does a pretty good job in neurology and neurosurgery; that they have a good back up in their department that deals with Epilepsy. I'm not suggesting that you change hospitals. I just wanted to make sure you have a back up just in case you are in a hospital that deals more with adults who have Epilepsy. They do categorize hospitals under adults and pediatrics. And in your case, pediatrics is a good start. Below is the link to the pediatric ratings in neurology and neurosurgery. You'll see "Boston's Children Hospital" as number one. Scroll down from there and see what hospital is in your state. Again, pediatrics. https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgeryBest Regards

The genetics testing is a

Submitted by Amy Jo on Thu, 2018-12-20 - 13:15
The genetics testing is a moving target, they are adding to their understanding all the time; epilepsy genetics can involve multiple gene issues so testing in 5 or 10 years will show very different things. If your daughter does have a genetic epilepsy, that doesn't mean it is a form that is passed down, there are changes that just happen sometimes (aka de novo). If they find an issue during testing, can't be sure that will help guide treatment. Know that testing results do not define your child, those tests do not know everything about your child's abilities and capacities. You might find one epilepsy genetics blog of interest - epilepsygenetics.net Our child is thought to have a genetic epilepsy but since the testing would not result in any treatment change, that's something insurance would not cover. Our child does have a seizure type that usually associated with a disabling form of epilepsy (encephalopathy) so the genetic assumption is fairly certain. Thing is, we didn't know that for year because those seizures didn't show up at first. Epilepsy is not cut and dried or static.

Glad to know she is in good

Submitted by Jazz101 on Thu, 2018-12-20 - 19:25
Glad to know she is in good medical hands Maylin. And clearly she is in the hands of great parents. This is brand new to you guys so I can imagine the concerns that cross your mind. That said, neurology has advanced significantly. Just don't be afraid to ask questions of your neurologist. Don't stop looking for answers. Just make sure you don't try to guess the outcome prior to any actual result. That is the guessing I was referring to.That is how my neurosurgical team operated. They just followed the evidence. And from there we made a collective decision.  Best Regards

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