New with 17 yr old daughter

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jdragr

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Hi all!
My 17 year old daughter first began experiencing seizures 6 weeks ago. She also has dysautonomia so at first we thought she was passing out. We saw her dysautonomia dr who changed up some meds and did a Holter monitor study and an EKG. Both were normal. Saw the pediatrician for blood work - all was normal. Dysautonomia dr ordered fluids in case her blood volume was low. So we had them and nothing changed. My sister is a pharmacist and she is the one who first thought seizures. I see a neurologist for my chronic migraines. I called and they were able to see her that day. Since that time she has had an MRI (normal) and a 30 min EEG (normal). They put her on Vimpat 50 mg 2x day. Her seizures began to get worse. Where before she was sitting staring and chewing. Then she began to wet herself. Not every time she had a seizure but several times a day. They added Keppra 250 and they continued to get worse. She is now convulsing, blowing bubbles, as well as the other symptoms. She also still has her little seizures as we call them where we just know she isn't there for a minute. The neuro was able to get her admitted to UAB's epilepsy center. She goes this Thursday and will be there from 2-5 days. I really don't even know what questions to ask. I just know that this hit suddenly and nothing seems to be helping. Thank you for letting me vent!
 
Welcome to CWE jdragr!

Going to an epilepsy center is the best way to get a proper diagnosis of the seizures. It's fantastic she was able to get in so soon. Is she being admitted for round-the-clock video EEG? Even if the EEG happens to normal, sometimes just a video of the seizures can help in the diagnosis.

At this point, there are not really a lot of questions for you to ask the doctors. They are the ones the need to ask you the questions :) You may want to check into your family history to find out about anyone who has (or even might have had) seizures or similar conditions to your daughter's, and inform the doctors if there is anyone. The main question that comes to my mind is to ask why the anti-seizure medications made her seizures worse. The hospital stay should tell you and the doctors a lot.

Best of luck to you and your daughter. I hope you will keep us on CWE informed.
 
masterjen said:
Welcome to CWE jdragr!
Is she being admitted for round-the-clock video EEG? Even if the EEG happens to normal, sometimes just a video of the seizures can help in the diagnosis.

Yes, it is round the clock video EEG. Average admit of 3 days but told us to be ready to stay for 5.

At this point, there are not really a lot of questions for you to ask the doctors. They are the ones the need to ask you the questions :) You may want to check into your family history to find out about anyone who has (or even might have had) seizures or similar conditions to your daughter's, and inform the doctors if there is anyone. The main question that comes to my mind is to ask why the anti-seizure medications made her seizures worse. The hospital stay should tell you and the doctors a lot.

I have tried to check my family history. No epilepsy that I can find. Thank you for the warm welcome. Yes, we are actually looking forward to Thursday.
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! ! ! ! Welcome to CWE ! ! ! !

jdragr,

You should feel free to ask any questions that come to your mind. The fact that your daughter has only had seizures for 6 weeks is making it very difficult to deal with. I hope you and her are able to get a positive result from your experience with the neurologist!

acshuman
 
Hi jdragr,
Welcome to CWE.

I hope you get some good answers from the epilepsy center.
 
Hi jdragr,

Welcome to CWE! It's great that your daughter is going to an Epilepsy Center. If I were in your place I would ask the neuro if her medical condition she has now could possibly trigger seizure since it is related to the nervous system. Another thing you may want to ask is if the seizures are related to her hormones changing each month.
Years ago before I had brain surgery the Dr. thought I only had damage on the right temporal lobe and I went through a series of testing but when they did the surgery they found damage on both sides of my brain that not a single test showed and that's because the damage was to deep in my brain and this may be the same problem your daughter has.
Keep track of your daughters seizures write down what time they happen and a description by doing this the Dr. may see a pattern in her seizures as to what days of the month or what time of day/night the seizures happen.
I wish you and your daughter the best of luck and May God Bless the Both of You!

Sue
 
Porkette said:
Hi jdragr,

Welcome to CWE! It's great that your daughter is going to an Epilepsy Center. If I were in your place I would ask the neuro if her medical condition she has now could possibly trigger seizure since it is related to the nervous system. Another thing you may want to ask is if the seizures are related to her hormones changing each month.

I have consulted with her dysautonomia doctor and she doesn't believe this is related but I will ask the neuro as well.

Years ago before I had brain surgery the Dr. thought I only had damage on the right temporal lobe and I went through a series of testing but when they did the surgery they found damage on both sides of my brain that not a single test showed and that's because the damage was to deep in my brain and this may be the same problem your daughter has.

So I think what you are saying is just because her MRI was normal she could have damage?

Keep track of your daughters seizures write down what time they happen and a description by doing this the Dr. may see a pattern in her seizures as to what days of the month or what time of day/night the seizures happen.

She is using an app that we are tracking every day. I am so glad we started doing that because they have progressed in severity. She is having 3-12 seizures every day still even on the meds.
I wish you and your daughter the best of luck and May God Bless the Both of You!

Sue
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Thank you so much for answering!
 
Hey jdragr, welcome!

I hope the doctors at the Epilepsy Center can shed some light on what is going on with your daughter. Your migraine history may be worth mentioning to the docs -- migraines and epilepsy are close cousins.

It may also be worth asking the neuros to review your daughter's seizure meds. Sometimes seizures meds can make seizures worse, and it can be tricky to evaluate how the meds are working when she's been put on two so quickly.

Has the type/cause of your daughter's dysautonomia been determined? If it's familial you might be interested in this study https://www.ncbi.nlm.nih.gov/pubmed/15509249 which suggests that Topomax and electrolytes can help if the symptoms are refractory to other meds.

good luck, and keep us posted!
 
Our neurology group will check for infection for certain presentations but our daughter had had a check of her spinal fluid for another reason but after seizures were suspected. (Lumbar punctures are not fun but it's another thing they may check).

MRIs are not perfect but older (less powerful) machines will not get same pictures. People who have resections can have very small problems that MRIs can't see.

We spent five days in EMU because they can see how one does when taking one off meds, saw new seizures and changed treatment because of that. It is boring, bring stuff to keep one occupied in a small room.
 
Nakamova said:
Hey jdragr, welcome!

I hope the doctors at the Epilepsy Center can shed some light on what is going on with your daughter. Your migraine history may be worth mentioning to the docs -- migraines and epilepsy are close cousins.

Thanks for the advice; I didn't know that.

It may also be worth asking the neuros to review your daughter's seizure meds. Sometimes seizures meds can make seizures worse, and it can be tricky to evaluate how the meds are working when she's been put on two so quickly.

Has the type/cause of your daughter's dysautonomia been determined? If it's familial you might be interested in this study which suggests that Topomax and electrolytes can help if the symptoms are refractory to other meds.

Thanks for letting me know about the study. I did read it. She doesn't have familial.

good luck, and keep us posted!
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Thank you so much for all of your help. Thursday cannot come fast enough!
 
Wanted to update you...

We went into UAB epilepsy unit on Thursday morning. She did take her meds that morning. They did not give her any the rest of the time we were there. On a normal day she would have a couple of absence seizures during the day and start what we call her "bad" seizures early evening until the night. She was on sleep deprivation the first night. I will say I wished they would let us have a normal night before they did sleep deprivation. We were up the whole night. She had her first seizure at about 11:45. She had 3 more between then and 5 am. All were "big" seizures. She went to sleep a little after 5:15 and I tried to. The team came in around 11:30 am. The attending told us that they felt like they had recorded 4 very good spells. They asked me if I agreed it was like she had at home. I agreed. They said her EEG showed no signs of abnormal brainwave activity. Thus her seizures were not epileptic. They said she had conversion disorder. At this point my daughter started crying and the team left the room. The manager of the program came back later to talk to us. She explained that there had to be a stressor causing the seizures. I had already talked to my daughter weeks ago about this because I had a friend who had a similar experience. My daughter and I have a wonderful relationship and she actually tells me things that I would have never told my mom. Honestly neither of us can think of any stressors. They want her to see a psychologist and immediately stopped all of her anti-seizure medicine. They sent us home that day as well. So that was yesterday. We were both exhausted and came home and went straight to bed. We both slept through the night. If she had a seizure we both slept through it. I've been sleeping with her since the seizures started. She had a "twitchy" seizure this am that didn't last long. She had an absence seizure this afternoon.

I have never been more confused and frustrated. I honestly don't know where to go from here.
 
If the team is basing the diagnosis of non-epileptic seizures entirely on the fact that the EEG was normal, then I can understand why you are confused since it is not at all uncommon for EEGs to be normal in the presence of epilepsy. The team would have had the video recording as well, and perhaps there was something in this that helped in the conversion disorder diagnosis. If I were you, I would request an appointment to discuss why they diagnosed conversion disorder. Sometimes doctors do not elaborate sufficiently on why they make a particular diagnosis, and you have a right to this information.

Make sure the psychologist the team is referring you to is well experienced in dealing with patients who have epilepsy and conversion disorder. Based on his/her assessment of your daughter, a psychologist can determine if your daughter "fits" the conversion disorder diagnosis.

Good luck with everything, and I hope you will continue to keep us posted.
 
And I agree with masterjen -- I think you should be persistent in pushing for answers regarding the diagnosis your daughter received. With EEGs, it's important to remember that a positive EEG can help confirm an epilepsy diagnosis, but a negative one cannot rule an epilepsy diagnosis out. Some seizures occur too deep in the brain, or are too transient to be recorded on an EEG. Not all neurologists are aware of this, and some just assume that if there's a negative EEG, then the seizures must be psychogenic.

Also -- it can be very dangerous to stop anti-seizure medications cold turkey, regardless of whether they are treating a seizure condition. Doing so can actually cause seizures or other withdrawal symptoms. I hope that has not been the case for your daughter.
 
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