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14 Comments (+add yours?)

  1. ritu
    Oct 07, 2011 @ 14:47:30

    Your site is very helpful.
    Please let me know if i can talk to you for some information.
    Ritu

    Reply

  2. Kari
    Oct 28, 2011 @ 18:30:19

    Hello, I would love to chat with you! My daughter, Ella (Gabriella) has very similar symptoms. I love your daughters description “sparkling arm” My Ella has “sizzles” in her cheek. If you have a minute I would love to ask a few questions? Thank You Kari

    Reply

  3. Jc
    Oct 14, 2012 @ 18:49:59

    I am surprised that u would put our dtr on keppra for this. Unless the child has frequent rolandic sz, they are considered benign. The meds have lots of side effects.

    Reply

    • brendasw
      Oct 16, 2012 @ 01:02:27

      Ella was put on the meds after much thought, consideration and a second and third opinion. The medication was brought on board more because her EEG’s were SO abnormal all the time (day and night). She was spiking all night long and Dr Devinsky at NYU said long term they really do not know if all that spiking would affect her learning/rest, etc, etc. We had only one dr (out of 4) tell us he did not feel we needed to medicate. We went w/ the majority. The side effects were not bad for her at all (we were very lucky) and now she is off and we hope to NEVER have to go back on.

      Reply

  4. Kathy
    May 18, 2013 @ 23:17:04

    I have copied your blog and am taking it to my neuro appointment on Tuesday. My 8 year old son has BRE and Cincinnati Children’s Hospital has been very dismissive about symptoms and concerns. He has had small infrequent seizures on AEDs and all they do is say “take more”. In almost 2 years, he’s had only 1 EEG, and I had to fight for that. Even more frustrating is that after your initial visit, they schedule you with a nurse practitioner. It’s so unfortunate that they have the monopoly in our area.

    Reply

  5. Sasha lindblom
    Nov 21, 2013 @ 13:27:49

    I would love to talk to you!

    Reply

  6. Rosanna
    Jun 08, 2016 @ 18:07:03

    Hello,

    I happened to stumble upon your blog and have found much comfort and hope reading each one of your entries. My son, Xavier, had his first nocturnal seizure at the age of 5 July 6th, 2015 about 30 minutes after falling asleep. After three opinions with three different neurologists, we decided to not medicated because it was his first episode. Unfortunately, nearly 11 months later, he had two occurrences this past week end, both 30 minutes after falling asleep. We have an appointment with our neurologist next Tuesday who will conduct an EEG. I am completely torn as I feel that he is going to want to medicate.

    Thanks you for taking the time to post your experience. Your daughter is a beautiful little girl.

    Hope all has been well. I would love to read a current update.

    Thanks again.

    Reply

    • brendasw
      Jun 12, 2016 @ 00:30:07

      Hi Rosanna,
      Thank You for taking the time to read and to comment. I will be thinking about you and Xavier as you go for your next follow up appt. Do your research and go with your gut. It is such a hard decision whether or not to medicate. Listen to your neuro and then go for a 2nd and maybe even a 3rd opinion. That will help. Let me know if I can answer any questions or if you need to talk. I hope this cluster of seizures is his last. Good Luck.

      Reply

  7. Janice
    Sep 14, 2016 @ 23:39:42

    How long was her first seizure?

    Reply

    • brendasw
      Sep 15, 2016 @ 00:07:57

      We are not really sure. We don’t know exactly when it started. From the time we realized what was going on until the time the actual ‘seizing’ stopped was several minutes…..but she suffered what we thought was after effects for several hours. At a much later date our neuro told us that seizure actually was considered active for couple hours since that’s how long it took for her to fully come out of it.

      Reply

  8. Rosanna
    Sep 16, 2016 @ 17:58:50

    Hello Brenda…I wrote a few months back about my son Xavier. We have decided to medicate. The neurologist started him on 1/2 a tablet of Tegretol to be taken in the evening. On August 7th, he had another two seizures but they were VERY mild (only lasting 15 seconds and only involved facial twitches and drooling). The doctor suggested increasing the meds to 1 tablet and so we did. It is still only 1/2 of the recommended dose for someone Xavier’s weight/age. My question to you is did you allow Ella to sleep on her own? Did you sleep with her? I am so nervous and anxious that I am sleeping with him. I feel like they are so mild and quiet that if I don’t sleep with him, we may miss them. If we do miss them, how would I know if we have gone a long period of time with no episodes. How did you choose to deal with it? I am torn because I know it can’t be healthy sleeping with your child. Any advise is greatly appreciated.

    Reply

    • brenda
      Sep 28, 2016 @ 14:13:07

      Hi Rosanna,
      We did sleep in Ella’s room for a while. We set up air mattress on her floor. We did not want to be in bed w/ her as we did not want to cause any disturbances to her routine, sleep position, etc. A few mos after we started Keppra we gradually tapered off and went back to sleeping in our own room. It is so hard to imagine that they are happening and then you are not there…so you do not know if things are better or not. We had follow up ambulatory EEG’s every 6 mos and that helped give us peace of mind that she was not spiking or seizing during those. If she was having a rough week, sick, waking alot, etc then we went back into her room for a week or two or three!!. You have to do what is comfortable for you and your son, so you both get the rest you need. Did your dr. give you any guidance?
      GOOD LUCK…hang in there!
      Brenda

      Reply

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