Kid with Febrile Seizures

Are you seeing a pediatric neurologist? If you aren’t, you need to be. Is there a children’s hospital within driving distance? If there is, I would start there. Have all the previous scans, test results and doctors’ notes sent prior to your appointment, along with a list of dates, times, and length of seizures. Also provide a sample of your child’s daily schedule for the doctor to look at in order to see if he or she can ascertain if there are any triggers.

This will take some time and effort on your part, but it’s worth it. If this doctor isn’t close enough to take to in case of an emergency, at least you can give findings and treatment plans to your ER, and work with your current ped to manage her care. Get working on this right away. It can take months to get an appointment with these specialists.

I don't have experience in exactly what you describe, but we have inherited medical condition in our family and are followed. We have had conflicting diagnoses and really unhelpful doctors along the way - some misdiagnoses as well. So I can understand your frustration.

From what I know, if his MRI was clear (meaning no tumors that could be causing the seizures, etc.) and it was determined he was indeed having seizures (guessing from the EEG), then I can't imagine why he'd need more testing. There really isn't any more testing he'd need.

Someone in my family was tested for epilepsy and that's the process they followed - MRI to rule out the biggies (tumor, etc.) and then EEG to make sure it was seizures.

Then medication to control the seizures.

So to me .. it sounds 'right'. However, you want to be sure he's seeing a neurologist who specializes in seizures. They come in all specialities - and some are just general. If you want to be clear he's getting the best care, I'd seek one who is specialized in epilepsy/seizures.

Best to you.

It's awful not to trust your doctor.

I would contact the neurology department at Stony Brook Pediatric Hospital in Setauket. I think that's the closest for you if you are in Sound Beach. There are several offices so chck on the departments at each one so you go to the best place. You can tell your doctor you want a second opinion and workup. If the doctor doesn't immediately agree, you can find another pediatrician, but it's every decent physician would agree to this. Get records sent, and get a hard copy for yourself. Get the images from any testing, not just the report about them. Get this on a disk. Send these ahead (sign what you have to so that everything is forwarded to whatever doctor will be seeing your son) but also take copies of everything to the appointment. My husband sought a 2nd opinion at a major Boston hospital after being seeing in another major trauma center, and you wouldn't believe the nonsense with records being transferred - couldn't open the disk, fax machine wasn't working, primary care physician's office left records for me to pick up during lunch hour but they put them where the interoffice courier picks up to carry documents from one office to the main hospital, and so on. (This was 4 years ago, and I still don't know where those records are - somewhere in the interoffice mail - believe me, I raised a huge stink. But that's another story. My point is, you paid for these tests and MRI and blood work etc., so you own them. Demand them and hand carry them even if they are supposedly sent ahead of time.

Get a 3-ring binder and insert everything in there, along with some plain paper so you can jot down your thoughts and take notes during the exam. If you have a friend or relative who can go with you to either help with your child or be an extra set of ears or the note-taker, great.

You can do this, Mom. It's stressful and it's hard if you're single, but you can do it. Your child has no better advocate than you. Do not apologize to your doctor - it makes you weaken and not stand strong. You are entitled to this. Remember that. Say in a business-like way, "We don't seem to be getting the answers I would like, and I want a second opinion. Please take care of a referral to X hospital, to the first available neurologist."

There is nothing wrong with a 2nd opinion. However, I'd like to at least mention that in our case, your doctor was right. Our daughter had them literally right up to her 6th birthday and then - bam - she never had another. Hers started at 6 months.

Trusting your doctor is important, and if you don't trust yours, find a new one. However, it is important to stay off the internet and 2nd guess EVERY doctor you find until you find one that agrees with you.

Good luck!

it would help a lot to know the age of your child.

not that it would miraculously turn me into a doctor.

i strongly, strongly suggest that if you don't have confidence in this doctor's advice, that you get a second and third and fourth opinion. even if you DO have confidence, it's still a good idea.

know what's NOT a good idea? reading 'other moms' statements on here' and making medical decisions about your child who has a critical issue based on what strangers without medical degrees on the internet have to say about it.

get help from doctors.

do not get help from google. or mamapedia.

khairete
S.

I would get a second opinion.

M.

You need to take your son to a pediatric neurologist. Or a Children's Hospital.

https://childrenshospital.northwell.edu/

My daughter suffered from febrile seizures when she was an infant/toddler. We did all of the testing because they were coming frequently. All test were negative for what they were testing. The doctor told me she would outgrow them by 3. She did. She is now 15 and a straight A student who plays music and is involved in sports. No damage at all. There is a portion of the infant population that has febrile seizures, and rarely, does it indicate a life time of epilepsy. If you are still worried, keep asking questions of your doctors.

Find a new Dr. if you feel the current one is not doing enough. I would suggest maybe taking him to a children's hospital near you. And get a referral from them!

Good luck!

"He has had an EEG with over night video recording no blood work and one MRI " and "I’m beginning to wonder if the dr I have for my child is doing enough".
If you don't trust your doctor then get a 2nd opinion.

From Merck Manual:
"Febrile seizures occur in about 2 to 5% of children younger than 6 years of age but most often occur in children aged 6 months to 3 years. A seizure that occurs in a child who has a fever and is 6 years old or older is not considered a febrile seizure."

If your son is now older than 6 yrs old then he might have something else.

You have a family history of febrile seizure and partial seizure disorder so this isn't totally new for you even if you are a first time mom.
Your mom and relatives can tell you their experiences and which doctors they have seen.
Most kids do outgrow febrile seizures sooner or later.

There's no harm in seeking a 2nd opinion.
If you are worried about epilepsy then see an epilepsy specialist and go forward from there.