I have another question about my daughter with epilepsy

[MyBabyGirlAbigailFaith]

My 3 year old has now had over 25 seizures within the past 7 days. Has anyone heard of seizures getting worse instead of better over time? She had a 25 minute seizure in the middle of mcdonalds play area, which seemed to be a seizure that she would start to come out of and then go right back into it with screaming like she is in pain. Is this normal. The past 8 seizures have been an all out scream seizure where she isnt just screaming going into them anymore but all the way through. I also need to know if this is considered a disability and should we file for it? I cannot work b/c her seizures are so close together and she is having them so often. But the more important question is: When she is now screaming all the way through the seizures, is this a sign of pain? She is now on Keppra 100mg 3 ml 2x daily and topamax 15mg 1 x daily sprinkle caps. She has been on the second med. for about a week now, shouldnt they start to slow down instead of getting worse? Please let me know, Thanks so much for your help. -Jessica

 

[Bernard]

My 3 year old has now had over 25 seizures within the past 7 days. Has anyone heard of seizures getting worse instead of better over time?

Yes. Some people call it kindling.

She had a 25 minute seizure in the middle of mcdonalds play area, which seemed to be a seizure that she would start to come out of and then go right back into it with screaming like she is in pain. Is this normal.

Normal? No, I wouldn't call them that. Prolonged seizures or seizures that follow back to back uninterrupted is called status epilepticus and you should call for an ambulance if it happens. It is serious.

She is now on Keppra 100mg 3 ml 2x daily and topamax 15mg 1 x daily sprinkle caps. She has been on the second med. for about a week now, shouldnt they start to slow down instead of getting worse?

It sounds like the increase in seizures has occurred in parallel with the taking of the new drug. I'd suggest talking to the neuro ASAP. It sounds like the drug is making things worse (as it does sometimes - reactions to AEDs aren't always positive or neutral).

 

[Birdbomb]

MyBabyGirlAbigailFaith

Bernard is correct. You child needs to be re-evaluated ASAP. Call your doctor now and discuss this with him/her. Please let us know how Abigail Faith is.

Seizures are for the most part painless. They look like they hurt but for most people there is little or no sensations at all. Pain and injuries come from the falls when the seizures hit.

The screaming has to do with where the seizure originates in the brain.

 

[brain]

Bernard is right on all points.

In addition I wish to add, if your Neurologist or
Epileptologist is not being responsive, then contact
the Primary Care Doctor and get a 2nd Opinion if
you are unable to go to a Doctor.

If by any chance you are not happy with the way
she is being treated, and the Doctor agrees that
she's not being treated properly, then it's time to
find a new Neurologist or Epileptologist, whichever
she is being seen by.

 

[MyBabyGirlAbigailFaith]

One more question guys

She keeps telling me that her head is in pain. She keeps grabbing the right side behind her temple on her head and says that it hurts. This is the same place that she had a hematoma about 2 years ago. The er did nothing for her. I have told her neuro all of this and she doesnt really know what to do. Could they be missing something on the CT Scan? What else can I do? The office where she goes to her neuro is the only child nuero in east tn is what I am told, because it is childrens hospital. I thought they would be the best. Thanks for any help you can give.

 

[Bernard]

She needs expert medical attention. We are not doctors here and even if we were, we couldn't make a diagnosis over the internet. If her neuro can't figure out what's wrong or offer advice, I'd think it's time to find another doctor/second opinion whether pediatric MD or not.

 

[brain]

She keeps telling me that her head is in pain. She keeps grabbing the right side behind her temple on her head and says that it hurts. This is the same place that she had a hematoma about 2 years ago. The er did nothing for her. I have told her neuro all of this and she doesnt really know what to do. Could they be missing something on the CT Scan? What else can I do? The office where she goes to her neuro is the only child nuero in east tn is what I am told, because it is childrens hospital. I thought they would be the best. Thanks for any help you can give.

See my post below Ma'am. It is clearly
defined. We are NOT Medical Doctors.

 

[MyBabyGirlAbigailFaith]

Thanks ANYWAY!

I am so sorry to bother you people. The doctors are not helping her and I am in the ER every week. I was trying to get your point of view but you want to be hateful about it. Dont worry, I will not ask anyone on here for any type of help or opinion again. I thought someone with seizures would want to help a helpless childs mother to understand a little better. And for somone to be so sour about it must be that you are being taught a lesson that you are not learning from god. I regret ever asking for help from you people and I KNOW that you are not doctors, you are people with epilepsy with a little insight about it. I am deleting my account on here.

 

[Bernard]

I was trying to get your point of view but you want to be hateful about it.

We offer help and opinions where we can, but your daughter's case appears to be requiring medical attention. No one here is hateful at all.

I'm sorry we can't be of more help for what you have related than what we have already offered.

 

[brain]

I am sorry to see you go but we can
only offer you support and resources,
but anything beyond that - we can't
do anything else than what we've
provided to you below. And no matter
where you go; the response will be the
same. Good Luck!

 

[Birdbomb]

Your little girl needs you to think clearly.

You asked for input but when got suggestions, you became upset because we cannot give you the answers you want. Not one person on this fourn has treated you with anything other than respect.

Here is one more suggestion, drive to Knoxville and seek a second opinion for your child. I am sure there are more neurologists there than in the small community you live in.

 

[MyBabyGirlAbigailFaith]

I am very sorry that I assummed to quickly with you all. I just didnt know what else to do. She has had so many that I am extremely frustrated and angry. But her doctor at childrens seems to be trying to do something after me my mom my husband and my sister called her like 4 times yesterday. Her doctors name is Dr. Kontsenka at childrens in knoxville. If anyone has heard of her and if she is good please let me know, other than that I will ask her doc to answer any questions I have. But I have found out why she seems to be so scared and crying all the time, her doc says that it is b/c of the keppra. She also has a 23 hour eeg coming to try and get a seizure on that machine. Although, she always pulls those things off her head so its gonna be funny to watch her keep them on for 23 hours. Thanks you to everyone that has sent me private messages of support. But, anyways I will be busy with her so I will not be able to post very often. Thank you!

 

[Birdbomb]

No harm done. Being worried about your child makes anyone feel crazy! I am sorry you are going thur this. I had herad Keppra can cause behavoual problems but then so can a lot of other AEDs.

You may want to check out the side effects of medication at www.drugdigest.com This site also alllows you to compare medications to watch for interactions.

Good luck to you, I hope for the best for your little girl.

 

[Bernard]

I am very sorry that I assummed to quickly with you all.

I'm glad you stuck around. Folks here really do care.

Her doctors name is Dr. Kontsenka at childrens in knoxville. If anyone has heard of her and if she is good please let me know,

You might try contacting your local EFA affiliate and asking them about recommendations (or opinions) for doctors in your area. That is likely your best bet for finding the broadest range of opinions on your local medical care options.

But I have found out why she seems to be so scared and crying all the time, her doc says that it is b/c of the keppra.

Keppra is infamous for affecting people's moods (often referred to as Keppra Rage).

She also has a 23 hour eeg coming to try and get a seizure on that machine. ... Thanks you to everyone that has sent me private messages of support. But, anyways I will be busy with her so I will not be able to post very often. Thank you!

I'm glad the neuro is moving forward with her care quickly. Please let us know how she is doing from time to time as you can.

 

[Stacy]

Abigail Faith

I might suggest writing down everything you feed her and her reaction to it. ie... she got an ice cream cone at McDonald's. 30 minutes (or 2 days) later, she's having a seizure.

I am very sensitive to sugar and to acidic fruits. I too have sets of seizures, but because of the "notebook" of information (everything from activities, to what my #2 looked like), my seizures have decreased significantly. Also, find a mommy/daughter yoga class or teach her to de-stress. I have a 3 year old and he's all over the place. He could apply for a casting call for the "Tazmainian Devil" because of his whirlwind energy. Luckily, no epilepsy on his part. Just me.

Our prayers are with Abigail Faith. Please give her a kiss for me. If there's anything you think I could help with, let me know.

 

[MyBabyGirlAbigailFaith]

Update on Abigail & a new question

Hello guys, as most of you know my 3 year old has epilepsy and I have a few more questions on your opinions as I am opting to change doctors for my daughter. She was put on 2 seizure meds about 2 weeks ago and he seizures are now getting close to about 1 every hour and all night long.
My primary doc has put me on ambien to help me get sleep on nights that my husband can get up with our daughter when she seizes and I get up with her the other times (most of the time) when he has to work. The topamax seems to be making things way worse than they were. I have told my primary doc about wanting to change neuros and he keeps telling me that I would have to go past nashville which is about 300 miles from me so I do not know what else to do. Also has anybody heard of keppra or topamax causing a child to bite herself or other people that hasnt bit since she was a year old? I am past the point of breaking! I am very ticked that none of the people at childrens seems to want to help. Has anyone ever heard of taking someone to the ER and the ER doctor putting them in the hospital for a in stay eeg right then? She has an EEG that was scheduled for the 20th next week then it was moved to the 22nd and I really feel like I cannot wait any longer b/c I am a walking zombie and my little girl is a shaky little zombie with no desire to play or go outside, the only thing that she has done for the past week is lay on the couch and sleep or have seizures then go to sleep. She now screams a few times in the middle of the seizure and also when she goes into it. She has come up to me a few times and told me "I'm going to have a seizure" and then sure enough within a minute or 2 she goes into one. I keep getting told by her neuro that her eeg cannot come any sooner than next week. But is there anyway to get around this? I am sorry but when I called her 2 days ago for a refill on her calming med. Clonidine (which also helps keep her keep calm and helps out with the seizures b/c she is not getting overly excited) and she never called it in, I have lost all faith in her neuro. And I am p-o'd! When I went in for her last appt. she thought my 1 year old was the one having seizures and my daughter has seen her several times. She didnt even know what patient was hers. I have called around to a few neuros and they have said that she needs to be seen by a child neuro. So does anyone know if she HAS to be seen by a child neuro or can I make the decision? I am so totally over the bullcrap that I am being fed and in the meantime my once very lively 3 year old lays on the couch like a vegetable or something. Can anyone comment or recommend anything? Thank you. -Jessica

 

[Wally]

Hello Abby's Mom!

Did you get the PM I sent you about my experience with Keppra? My Neuro prescribed Keppra for me and then told me not to read the paper with the side effects, "because then you'll have them all". I think they really try to downplay the side effects, but they are real. On the bright side, they do lessen with time.

 

[Bernard]

Hi Jessica,

Keppra is known to cause Keppra rage in some people. It can definitely affect moods/behavior. Of course, this might be preferable to hourly seizures and nightly trips to the ER!

I don't blame you for being . The neuro dropped the ball and isn't putting any priority on a serious situation. I'm not a doctor, and I can't offer medical advice, but if I knew that a med was making things worse for my child, I'd drop the med and argue with the neuro later.

I have called around to a few neuros and they have said that she needs to be seen by a child neuro.

Have you tried contacting your local EFA chapter? I think they would be your best resource for finding the best alternative neuro in your area.

 

[MyBabyGirlAbigailFaith]

Thanks!!

Thanks guys, I have contacted the Epilepsy foundation and yes I got your message about the keppra. Thanks for all of your support and point of view. I will be giving you guys updates on Abigail and I swear if she has one more seizure today I am going to the ER and tell them I want her put in the hospital for an EEG. If they would just do it now they would get a ton of recorded seizures. So I am going to do everything that I can do. Thanks!

 

[Bernard]

:brock: