Hoping to find answers to my daughter's condition

[Fait]

Hi all,

I am new to this forum and my wife invited me to register here since I am more familiar regards to forum usage.

We are here to learn about seizures and how to manage it properly.

Because we have a daughter that will be turning 7 months old this August 9, 2012 and she's been having seizure for the past 3 months. Counting those, it's been 10 episodes of seizure already and jerkings and eye twitching is getting worst.

Hope people in this forum will be able to help us and find the best practice to take care of our daughter.

Thanks,
Fait

 

[jyearta]

Hi Fait,

Welcome to CWE.

Not having children of my own, I don't know where to start with a young baby.

Have your daughter seen a neur. and been diagnosed?

If not, that is the 1st. step. They will run test EEG, MRI.

There are some many medic. and we all react different to different medic.
If you don't like the Dr. or the medic. -- change there are good Neur. out there.

I would advise for you and your wife to keep a seizure diary, noting anything that could be trigging her seizure, could be foods, sleep, sensitive to lights.
It hard to say with such a young baby.

There are many mothers in this forum, I hope they will response to your post, but go ahead and look in the Nursery forum.

Ask all the questions you can think of.

 

[Fait]

@jyearta:
Hi. Thank you for the fast reply and warm welcome.

Yes, my daughter went through those tests already unfortunately all results are coming back normal, tho her last EEG test detected some wave spikes on her right occipital. I do not know if this is a good sign already since they already found something.

My daughter is seeing a Pedia Neuro already but he is not yet 100% sure what is causing the seizure. Last time I spoke with the Neuro, I was informed that it COULD be myoclonic seizure.

 

[jyearta]

Fait,
I'm so glad your daughter has been seen by a Pedia. neur. You and your wife are already doning all the right things.
It's not uncommon for these test to come back normal.
I myself went years and years of all these test, all came back normal. It was only when I went to Emory in Atlanta that they found the cause.

I have heard of Myoclinic seizures mention in this forum. But I not familiar with it. I have absense/partical seizures.

Have you tried the SEARCH option to see if any inform. comes up with this type of seizure?

Has your daughter been sick and put on an antibiotics (I don't know if babies can even take antib.) I ask this because this can be a trigger, it is for me.

Please know that you all are not alone in this.

 

[Fait]

@jyearta:
Hi, how did they find out about your seizure? Did they run different tests? Good thing Emory was able to detect it, at least from that day on, chances are great already on how to treat it.

My daughter isn't taking any antibiotics except for the one prescribed to her by the doctor when she was first discharged from the hospital due to her 2nd episode of seizure. She took that for 5 days only. Right now, she is taking Phenobarbitone only.

I have not used the search function yet of this forum about myoclonic but I started to read topics already in the "the Nursery" section. I also posted there the events that happened to my daughter.

Thanks,
Fait

 

[jyearta]

I had seizures as a child, however I was not diagnosed until I was 19 years old, had just gotten married.
My parents just couldn't deal with it, I guess. Anyway my husband got me to a Dr. the next day and that was when I was diagn.
I was put on dilantin and phenob. it has always taken 2 medic. to control my seizures. I'm now on dilantin and clonazepam (generic for Klonopin)

The test was done in 2004 at Emory, that showed something on the right side of my brain was an MRI. (I think) I asked them for a copy (it is in a disk form) I take this to every NEW neur. I have seen since that time.

Before going to Emory, I had I don't know how many EEG, MRI done and they all showed NOTHING. I requested to see a epileptologist at Emory back in 2004. I didn't like this epileptologist, so I requested to see another Neur. but as least the test there gave me the answers

Keep doing as you are, asking questions. It was here in the forum I found I was doing so many things wrong.
I was taking my medic. at the wrong times, I didn't know about triggers, a serizure diary, the list just keeps going on.

 

[Nakamova]

Hi Fait, welcome to CWE!

You're doing all the right things -- consulting with a pediatric neurologist, asking questions, getting informed. Seizure disorders are tricky -- it's not always possible to get clear test results. In the absence of a confirming EEG, doctors will try to make a diagnosis based on the actual symptoms, and then watch to see if treatment provides control.

You can help by being a close observer in journaling your daughter's symptoms and her response to the medication. By tracking her seizures/symptoms, you may be able identify patterns or triggers. By tracking her reactions to the med, you can help the doc gauge it's efficacy, and note if there are any side effects.

You'll find info here http://emedicine.medscape.com/article/1176055-overview and here http://www.epilepsy.com/EPILEPSY/EPILEPSY_JUVENILEMYOCLONIC about myoclonic seizures in children.

Best,
Nakamova

 

[Fait]

@jyearta:
Are you still having seizures right now? And if you don't mind me asking, what's your current age? Hope all gets well soon.

@Nakamova:
Hi, thanks for the welcome. I am reading through the links you provided and this will help us a lot to understand myoclonic seizure.

We just got home from the ped neur and good thing that my daughter's doctor is already back from vacation. He is 95% sure already about myoclonic since I showed him some videos of my daughter. We were advised to decrease phenobarbitone gradually then adding a new medication, which is Depakine.

 

[jyearta]

@jyearta:
Are you still having seizures right now? And if you don't mind me asking, what's your current age? Hope all gets well soon.

I'm 60 years old. I seem to be very sensiitive to almost anything added to my system, for example vit. B6, B12, folic acid, caliculm, vit. D. almost all antibiotics and more. When I take one of these I will have a seizure. Or if I lose sleep for whatever the reason.

I have had only 1 seizure since Oct. 18, 2011. I think it was because of a medic. that my neur. tried.

Thanks, I am much better with my new neur. but the fact that I joined this forum and learned more than any dr. has ever told me. I too hope that you and wife will have some answers for your daughter and you both will see her get better.

 

[Fait]

@jyearta:
That's good to hear that you haven't gotten any seizures anymore for over a year already.

For my kid, still not good. We rushed her to the hospital this morning, 330AM! We were all asleep already then good thing I suddenly woke up because I heard her like crying, then I found out that she was seizing already and awake, we gave her the diazepam, we got her back after few minutes but she was really burning. So, we rushed her to the hospital since she's having DOB already. When we reached the hospital, her temp was spiking at 40c. Doctors said that the seizure could've triggered because of the fever.

She got an x-ray too and was observed that she might have pneumonia.