Special Needs

Reflex seizures/ epilepsy anyone?

Ds #2 is 9 months old. Two weeks ago he had a low grade fever and started making movements with his arms ( both sort of tremor-ed) and his eyes would roll back. The "episodes" would last for literally 2-3 seconds and were very sporadic, having maybe 3 the first friday. Long story short, I took him to the ER and he was admitted for two nights to run two EEG's and an MRI. The 24 hour EEG showed up being abnormal, while everything else looked fine. They said he has reflex epilepsy and gave us a script for Keppra.

I feel like a crazy person since we have yet to have our first appointment with his neuro dr. In the meantime Ive probably put in 4 phone calls since we've been home to speak with their nurses. His "seizures" ( feels weird calling them that since they last two seconds) have gotten worse. They are still the same short seizures but he has upwards of 15 a day, if not more. I feel like the keppra, which is now up to 2.5 ml twice a day is doing nothing. I was told to keep it at that dosage and wait til we meet his dr in a week. I've called and asked to get an earlier appointment if something opens up, but in the meantime I feel so hopeless for my baby. The keppra has done nothing, but I am supposed to keep him on it for another week, and that seems so odd. I have a million questions that DH and I have written down over the last two weeks.. the stress of all the whys, whats, and who knows are quickly building. Top it all off with us moving in less then two weeks. 

I know I have never posted on this board, and I am sorry to through my pity party out there. Just looking for any support from other moms that have been through something similar with seizures/epilepsy.

Image and video hosting by TinyPic Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker *First RE visit 5/10 *B/W & SA Normal! 6/10 *Laprascopy - Removed septum and cyst 7/10 *50 mg Clomid 8/21 +Trigger 9/1 = BFN *50 mg Clomid 9/17 = No response *100 mg Clomid 9/29 + Trigger 10/8= BFP!! *Beta 1= 297 *Beta 2= 612! *It's a Boy! EDD July 4th 2011 *Surprise!! Natural BFP! Beta 1=306, Beta 2= 1100! EDD Aug 18th 2012! IT's a BOY!

Re: Reflex seizures/ epilepsy anyone?

  • I know it might not be what you want to hear but theyre likely going to make you stick it out for four weeks until they call it a fail. My daughter is doing awesome on keppra now even though the seizures continued in the first few weeks and she want batshit crazy. It took a full month before we saw actual improvement-it literally was one day out of the blue everything got better. Also something that helped was adding a midday dose instead of just upping the morning and evening ones. I would keep a log and if the seizure activity is around lunchtime and/or later in the afternoon see if a midday dose helps.

    i hope you find the right medication soon.  

    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • image KC_13:

    I know it might not be what you want to hear but theyre likely going to make you stick it out for four weeks until they call it a fail. My daughter is doing awesome on keppra now even though the seizures continued in the first few weeks and she want batshit crazy. It took a full month before we saw actual improvement-it literally was one day out of the blue everything got better. Also something that helped was adding a midday dose instead of just upping the morning and evening ones. I would keep a log and if the seizure activity is around lunchtime and/or later in the afternoon see if a midday dose helps.

    i hope you find the right medication soon.  

    KC thanks for your reply! They never told me how long it would take to see results, and upping it from 1ml to 2.5 in less then two weeks made me feel like results should be seen quickly. So it generally takes a month?

    Image and video hosting by TinyPic Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker *First RE visit 5/10 *B/W & SA Normal! 6/10 *Laprascopy - Removed septum and cyst 7/10 *50 mg Clomid 8/21 +Trigger 9/1 = BFN *50 mg Clomid 9/17 = No response *100 mg Clomid 9/29 + Trigger 10/8= BFP!! *Beta 1= 297 *Beta 2= 612! *It's a Boy! EDD July 4th 2011 *Surprise!! Natural BFP! Beta 1=306, Beta 2= 1100! EDD Aug 18th 2012! IT's a BOY!
  • My DS had seizures.  He had good control on Keppra for 4 years.  We are slowly weaning him off now.  It can take a bit to get the dose just right.  Hang in there.  They try to get the smallest effective dose.  do a daily tally of how many seizures.  Describe them like you've done here and try to catch one on video for the neuro.  Write all your questions down for the appointment.  best wishes.  Let me know if you have anymore questions.  My DS's seizures were a bit different.
  • image morgs8384:
    image KC_13:

    I know it might not be what you want to hear but theyre likely going to make you stick it out for four weeks until they call it a fail. My daughter is doing awesome on keppra now even though the seizures continued in the first few weeks and she want batshit crazy. It took a full month before we saw actual improvement-it literally was one day out of the blue everything got better. Also something that helped was adding a midday dose instead of just upping the morning and evening ones. I would keep a log and if the seizure activity is around lunchtime and/or later in the afternoon see if a midday dose helps.

    i hope you find the right medication soon.  

    KC thanks for your reply! They never told me how long it would take to see results, and upping it from 1ml to 2.5 in less then two weeks made me feel like results should be seen quickly. So it generally takes a month?

    from what my neuros office told me that it was generally quick acting but every kid takes to it a little differently. They always want to give meds a solid month to get in their system before they consider it a success/fail. I was really annoyed they made me stick it out but it really was worth it.

    Epilepsy can be a lot of trial and error. First there's finding the right med or combo of meds. Then there's finding the exact correct dose of med/s and this will change as your lo gets older. Keppra might not be the right drug for your child, or they may need keppra alongside another drug for effective seizure control. I can completely empathize with the process completely sucking of waiting while your child continues to seize but your experience isn't atypical of a newly diagnosed child. 

    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • My boys both have epilepsy.  They started on Trileptal initially, but had allergic reactions.  Then Keppra.  The Keppra took a long time to work.  We ended up getting a second opinion in Boston.  That neurologist told us to really up the Keppra to see if it was just a dosing issue... at that point we were upping it every time they had a seizure by 0.5ml, but they were still continuing.  We have a different kind of seizures so they were happening once every 3-6 weeks, but lasting up to an hour in length (non-convulsive).  It took upping the Keppra a good amount to get Nathan's under control... Joey is on a little less and has not had a seizure in almost a year... knock on wood.  I would wait until you see the Neuro, but I do know how hard it is... you just want it to go away.  I totally feel for you )c:  

    image
    image



  • Also fwiw we started on omega 3s around the same time as we upped the keppra so I can't really say for sure which one made the most difference but there is some early research that omega 3s alongside seizure meds can be helpful in avoiding seizures. If your child doesn't get omega 3s in their diet naturally it may be worth a shot. 
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • My daughter has upwards of 30 seizures each day they look like a newborn's startle reflex. Docs started her on Keppa first because it supposedly has the fewest side effects. Keppa alone did not work, so the docs added a second then a third antiepileptic drug.

    Give the meds at least a month to work. Some like Keppra take time to build up in the system. My understanding is that you may find a "silver bullet" that works one month, and a couple months later, it doesn't and you try something new.

    My daughter's seizures were not stopped with all of the meds we tried, and to go up on a more effective dose knocked her out all day. We ultimately got her started on the ketogenic diet through Children's Hospital, and it has made all the difference. She has a third of the seizures she had before, and we actually have gone down on the dose of medicines she is getting per doctor's instructions. Good luck with everything!

     

     

     

  • My DS is on Keppra and we were told that we wouldn't really be able to tell how well it worked for about the first month. If I were you, I'd stick it out until the neuro appointment and then bring up your concerns to the doctor. Don't hesitate to tell him if you think anything is wrong. Remember, you're your kid's mom and you know him best. Smile Good luck and keep us updated!
    Image and video hosting by TinyPicimageImage and video hosting by TinyPic
    Baby Birthday Ticker Ticker
  • eav2ceav2c
    250 Answers 2500 Comments Fourth Anniversary 5 Love Its
    member
    My DS's seizures only got worse on keppra. After a month or so they added zonigram into his medications and it has worked wonders. He's still on keppra 3.5ml 2x's a day in addition to the zonigram 1.7ml 2x's a day. If keppra doesn't do the job they can try something else out. Our neuro said on average it takes 3 to 4 meds before finding the right one for many people. Try not to worry too much. It's a process and keppra tends to be the "one" that works for the most paitents with the least side effects but that doesn't mean it's the perfect one for your LO. Your neuro will keep evaluating and come up with the next step. Keep tracking of the seizures, how long they lasted, when, what it looked like, do their appear to be any triggers?, etc. We found he had seizures starting around 730 every morning that came in a series of 3 every 2 hours after the first.
    Dx w/Intrahepatic Cholestasis of Pregnancy @ 33w. Induction turned c-section @ 37w. Colin Alexander - Born 3/29/12 @ 3:50pm - 5lbs 8oz 18.5"
    Lilypie First Birthday tickers

    image

Sign In or Register to comment.
Choose Another Board
Search Boards