Seizure activity increasing during Summer/ Many questions

Charity - posted on 07/26/2010 ( 11 moms have responded )

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hi i'm new to this but i have been encouraged and learnt a lot from the different topic i read. My daughter had her 1st seizure after 3days of birth and since we have been struggling with seizures but i have come to accept this doesn't stop us from living positively. I have realized that during summer her seizures tend to increase primarily from may and then she pretty much goes thru fall and winter seizure free. She is currently on 3ml of keppra 3times a day 2.5ml of valporic acid in the morning 5ml at midday and 5ml at night. This really scares me now because the doses seem to be pretty high this is the most meds she has taken and at one point did very well on little medicine now back again the last two weeks she has had 4 seizures her neuro continues to raise the meds she usually goes 3-6 months seizure free. Her development is delayed as far as speech no words yet at 2years and she seems to not pay as much attention; however we currently have her in therapy and hoping that helps a lot. We have had 2 24hr eegs so far the 1st one had no answers the second one showed abnormal discharge in the left side of her brain this is when her neuro raised the valporic acid dose she explained it might help stablize this dischrage and the only thing her MRI continues to show is a bit of scarring in the brain that might be from birth. My questions? Does the heat increase seizure activity

Does anyone know if keppra and valporic acid affect the childs delay

Do any of those meds increase weight and appetite

Any suggestions how to get her to pay attention so she can start things like potty training and be a bit more independent



with all these questions dear parents i want you to know that seeing my daughter survive/fight through her seizures it makes me stronger and gives me hope that all will be well. i m blessed because i know that they are some that experience more problems. I knidly thank you for any feedback. God bless you all dont give because our kids never give up. My daughter remains adorable, smiles and healthy despite all. Just thinking of her puts a smile on my face. Sometimes i start to think what if she never talks, is she autistic because i have no answers yet but i truly accept this gift and i cant wait for the day she talks i know she can, thank you

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11 Comments

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Colleen - posted on 08/12/2010

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My daughter is 5 1/2 years old. We were on keppra for 4 years aned weaned her off and her speech got better and her attention span. We are doing genetic testing. Did you do genetic testing? The heat can trigger seizures make sure she drinks.
Colleen

[deleted account]

Charity, everyone has a variety of triggers, my 17 yo son's are dehydration, lack of sleep and sudden unexpected exertion. Summer time is when these three things can occur on a regular basis.

A sleepover with lots of soda instead of water, up all night watch movies or playing video games and then the next day a water balloon fight...yep, seizure waiting to happen...gotta love the kids.

Just take it easy, summer time is also when there is an upset in the schedule and doses can be skipped. If you don't use a pill reminder, get one and use it. Relying on memory, especially of a child, did I or didn't I...hmmm...not sure...maybe...I don't know. Well, you can see I've heard it. Now the pill box is right where I can glance and know for sure.

Good Luck

Samantha - posted on 08/11/2010

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Hi Charity, there are a lot of triggers for seizures, heat seems to be a very common one, I have heard that you can get cooling jackets that help keep their body temp down (you will have to google that as I cant remember where I saw it! Too much researching! May have been on a Dravets Syndrome group)
My lil one has been on sodium valproate (It does increase appetite) for over 5 years (she is 7) so its really hard for me to know what her development would be like without meds! As for toilet training, dont rush, Bronte wasnt regularly dry during the day till she was about 6, and she is still in pull-ups at night. I find that her toilet training fluctuated with her seizure activity, this week she has had 2 "number 2" accidents at school, and she has had about six -seven seizures in the last few days.
I really admire your positivity and outlook, as you said, there are always others that have a different/worse set of problems, (being in hospital with Bronte always grounds me) and until you can walk in their shoes you have no idea.
Keep up the good work with your daughter, -their smiles bring so much joy!
P.S. how old is your daughter now?

Velda - posted on 07/31/2010

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hi my son is 5 and has had seizures since birth had brain surgery twice he currently takes keppra, trileptal and we have versade by injection for seizures lasting longer than 3mins or cluster seizures now he is still in diapers and he just started talking alot in the last year after a medication change. hiss eeg's show that he is more prone to them in his sleep bu the answer to your question about the heat is in my perosnal experience my son has more acitivity in the summer months or when he gets overheated than the fall and his neuro will adjust his meds if need be but we try to do all we can to keep him cool even it means getting strange looks b/c we've just stripped him to his diaper. but don't let it get you down if it seems that you can't get things like potty training down b/c i've seen that after a couple of bad episodes that he seems to have forgotten things he had already learned but i hope this helps and may GOD bless you and your family.

[deleted account]

When it is warmer out she will have increased seizures. Warmer weather does this. My daughter Brittney has Epilepsy. She has had it all her life. She is 13 now. Strobe lights are no good either. They cause seizure activity too. and a high fever can cause seizures even in children that never had any. She is on a Ketogenic Diet which she has been on since Oct 2003. She also takes Banzel, Keppra and Clonazepam for her seizures.

Kaydee - posted on 07/30/2010

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All I can say Charity is keep up the positive attitude!! That's wonderful...My daughter started having seizures at 7 months old. She has recently been diagnosed with Partial Complex Epilespy she takes 7.5 ml or Valporic Acid twice a day and Vimpat 2ml Twice a day. I feel it's way too much medicine for such a little person as well but trying to have faith the Dr's know what they are doing. Her appetite has changed very picky suppose to increase with the valporic acid. She has gained weight though. :( Very moody the behavior is definatly an issue we are trying to work through it! She is 3 1/2 now and I think I would say she is almost potty trained we have a few accidents here and there with the developmental delays with the seizures and all the meds it's really hard to know what to expect from these kids. We attend a special Ed Pre-School 3 days a week. She meets with a Speech Therapist once a week and an Occupational Therapist once a week we will be starting physical therapy next week. All and all Hailey is doing wonderful!! There is hope for these innocent angels I just feel the medicine and seizures get in the way of forward progress. Once we gain seizure control I hope things will change... I am always here to answer questions if you need support.
Kaydee

Kaydee - posted on 07/30/2010

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Very Similar My daughter was diagnosed in April with Complex Partial Epilepsy. She is on Valporic Acid 7.5 ml twice a day and Vimpat 2ml Twice a day. I completely agree.. I feel like I am learning something new everyday... I know this is alot to take in and just when you think you have it all figured out it may take a turn but these little ones need us and we can do this together!!

[deleted account]

University of Pittsburgh Medical Center has a Dr. in their Neurology Dept that does surgery on epileptics. You might try contacting him.
Bonnie Van Vliet

Nicole - posted on 07/27/2010

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you are so welcome...hope that everything goes well. The internet has lots of information that you can find...

Charity - posted on 07/27/2010

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Thank you Nicole for your response. My daughter is actually on B6 twice a day i forgot to mention that, so hopefully its helping her. I will look up more information on keppra. Thank you so much

Nicole - posted on 07/27/2010

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Hi, My daughter is only on keppra right now and she takes 3mls 2 times a day. She does good with it. I don't know if you were told about vitiman B6, but it may help with some of the keppra things you are getting. You can also look up keppra online to see the different things that it does. One of the side effects keppra can kind of give you is something like ADHD. if their is anything else I can help I am here. My daughter was just dxed last march with generalized seizures and within 5 months or so her seizures had changed into complex parial into generalized seizures. I am still learning it's a lot to take in since I already have a child with disabilty. Good luck.

Nicole

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