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Absence seizures in children

my name is janelle and i noticed my daughter having these staring episodes, after a couple of months noticed they where getting more and more frequent, spoke to her teacher and was told that shes noticed her having them in class, it hit me so hard, confirmation its not just in my mind, shes had all the tests with the wires on her head and was confirmed she has peti mal with tendencys for grand mal, the meds are really taking there toll, my once happy energetic daughter is now tired and angry, its killing me to see her like this, im left wondering whats worse the seizures or this stranger that is now my middle daughter? any insight would be much appreciated i feel so lost.

Comments

Re: Absence seizures in children

While it is true many people can have side effects from AEDs, lots of people don't.  The goal is to get the best seizure control with the least (or preferrably no) side effects.  How long has she been on medication?  Some people take a while to get used to the medication (weeks or even months) and in time the side effects can taper off.  Or, it may be that the dose is too high, or perhaps a different medication is more suited for your daughter.

Re: Absence seizures in children

hey thankyou for you feedback, interesting,,,,,, i hadnt even thought about that as we are pretty new to this whole thing, so its not a one size fits all kind of deal? is it possible she could be better on some other meds? I will be bringing this up with her specialist next visit, she has been on meds since april so about 5 weeks, in the beginning she was very tired and I must admit she isnt tired any more just very iritable, as she is one of three daughters we are all adjusting and the dynamics of the whole house have had to change, I dont want to over compensate for her as I still have the other two to think about, I just dont know how to react when she does flare up, I have told her when she is feeling anxious to tell me this secret word and at the drop of a hat we will give her space un till she is feeling less frustrated, It sounds great in theory but its the in betweens the growing her sisters and pushing the
" I didnt" when I saw her do it, she has taken on this blatent dis respect for her father and I when she is in these zones, she will answer us back and not do what she has been asked to do, which is not how I raised my kids, its such a shock to the system, in regards to her dose she was still having seizures on 5ml twice a day, the specialts recommended 10ml twice a day but I was reluctent to up it that much as she was getting so tired, we eventually agreed on 7.5 twice a day and havent gone up since, then, I know this is random but do you know of what foods could benifit her?

Thankyou so much for your insight,

Re: Absence seizures in children

Hi

Five weeks really isn't very long. It is not a one size fits all deal with the medication, and there are others that can be tried.  It might be worth hanging in there a while longer, if you can, since she is showing some signs of accomodating to the medication already.  Definitely bring it up with specialist, though, and he/she can give you an idea if you should stick it out, or if a change is in order.

She should be treated just as any of your other children do if they talk back, become angry, etc. - in other words, being held accountable.  Pehaps not in a punishment sort of way, but in a way that will help her learn acceptable ways to take out this frustration (running around the house,skipping, etc. - usually something physical works off the pent up energy).  Some kids are good at talking things out and some aren't.  Good luck!!

 

 

Re: Absence seizures in children

I understand exactly what you are going through. I had to go to the EMU and found out that I had simple partial seizures and they don't seem to be getting any better as the days go on. I wonder how long has she been on the epilepsy medication? It might take a while for your daughter to get used to her medication and to find the right dosage to keep her seizures under control. Keep a positive mindset. She didn't ask fo this to happen to her. All you can do is be your daughter's role model and cheer her on to pursue bigger and better things in life.

Re: Absence seizures in children

hey cheers for your feedback,. I must admit she isnt tired as much any more but that seems to be replaced by her temper, its taking so long to adjust to and just kills me to see her this way, its changed the whole dynamics of the family as she is one of three daughters, we are all having to adjust, I do appreciate this wasnt how we had it planned, we have all made allowences for her but in the same breath I dont wont to let her get away with things that her sisters dont just because she flares up at the drop of a hat, Im still trying to mantain some kind of structure, she isnt like this all the time, just an hour or so after the meds shes cranky for about 2hours then gradually gets better, shes been on the meds since early april, thankyou for your words of encourgment, it is alot to get your head around but in saying that it could of been so much worse and for that i am truley greatful,

Re: Absence seizures in children

Hi Janelle.  I also have an 8 year old daughter that was just diagnosed with epilepsy in March of this year.  Out of the blue she had a tonic clonic seizure at school and subsequent testing showed that she was having lots of absence seizures (although we had never noticed her having one before that).  She started taking just Keppra in mid-March and we added Zarontin to that about 3 weeks ago (as the Keppra alone wasn't stopping the absence seizures). So far she really hasn't had any side effects at all, except for a little tiredness initially that has since gone away.  If the side effects don't improve soon, you should definitely talk to her neurologist about possibly switching medications. 

Re: Absence seizures in children

Hi Auz Mom!!!

I read your post and it sounds like something I could have written a year ago! your daughters diagnosis and effects from the meds sound exactly similar to mine.

Emily is 8 and has absence epilepsy. We tried many different drugs and combinations of them. None stopped her seizures (which reached upwards of 300 a day at their worst) and the side effects were too much to handle (specifically the temper and moodiness...oh my who stole my daughter!)

I would love to help you! One of the silver linings from Emily`s experience is that i have shifted my life coaching from business to helping other parents just like me! I offer a free 45-minute coaching session (can be done over telephone or skype). Please visit my webiste www.parentpower.ca

You should also consider the ketogenic diet (which has not been very popular so far for absence epilepsy but which proved helpful for Emily). On June 1, 2013 I will be releasing my eBook which is a survival guide for parents with Epileptic children who use the keto diet to help with seizure control.

I hope to hear from you!!!

Chantal

Re: Absence seizures in children

I completely understand what you are going through. My son whom is 3 years old was just recently diagnosed. He was not having the staring episodes initially. It first started with his eyes rolling in the back of his head, and now he is having the staring episode. And as of right now the meds (Depakote) do not seen to be working so his Dr. keeps upping the dosage. My son gets so mad at me when trying to give his meds, its very exhausting, but I know that everything will all work out and that's all I keep telling myself. Things will get better!

Re: Absence seizures in children

Hi janelle

I read you post and I have a view from th side your daughter is on. I was diagnosed with epilepsy when I was 13. I had had seizures from age 12. However they could have been earlier. I have pettie mal,grande mal and focal motor epilepsy. Absence seizure land in there along with other types of seizures. I can say I had seizures before becasue I was constantly being written up for day dreaming in class. I had some of the highest scores on thests or even the quizes. Those day dreams may have been seizures considering in most of the seizures I have I can see hear and understand everything going on around me.

Those wires to her head well that test is an EEG and those tests will let the doctors know where any abnormalities (seizure activity) come from, with that information they can locate the area and with a MRI they can look closer at that area and make determinations on procedures or medications that can help control the seizures.

As for medications. Well what one person takes my not work on others. Medications are being made to help control different types of seizures and side effects can be troublesome. It took me some time to get used to the medications I was put on and during that time frame I wasn't nice to everybody considering I didn't like having to take medicine and wanted to be like everybody else.

I would say give her a little time she may come around and it may take a different dosage or even a different medication.

As for her seizures. Believe me you would not really want to see her have a grande mall seizure. I know been there done that. They are not easy to watch and they can really take a toll. I personally would rather be taking medications then wearing out the energy a seizure takes out of you. Even those absence seizures use a lot of energy.  tendencys for grand mal means there is a possiabilty for her to have a grande mal seizure and believe me those are not nice to those in the seizure or those who see them. Mothers are wonderful but I also know what my mother went thru considering the first seizure deffinately know I had was a grande mal. It is really confussing comming to while seniors are carrying you into the nurses office I had 4 carrying me while 2 coaches were with them one at each end head and foot. I fell asleep and woke up around 2 in the afternoon when Mom got there and she took me to a doctor.

I might suggest is use the My Epilepsy Diary which you can get on this site. Enter the type of seizures she has along with her medications. Once entered keep a daily track of she takes her meds then go to that area and check the times. If she misses a dose then enter that.If she has a seizure enter that. Moods can also be checked. There is a note pad which you can enter information in. I enter the length of time I am in a seizure and the length of time it takes me to focus (get back to normal). The diary can be sent to her doctor or you can give your doctor permission to look at it or even send it to yourself and print it our. The information entered will also help her doctor because it gives him more information so he can look at procedures or dosage changes or even medication changes. I use mine and started because I was having more seizures than I normally had, My doc added another medication to my keppra and now the seizures are down to what they were and we have upped the dosage and it looks like they are fewer than what they were.

By all means let her dream of being what others want to be and do not stop her dreaming. I was a dreamer and I had some wonderful dreams. I had to change some but then if I hadn't I might not have becoma a manager of a company who with a friend bought a branch of that company. I still have dreams and many have come true.

I hope this helps and I hope she gets her seizures under control and she gets back to being energetic and happy again. I know that can be done because I did it. 

Joe