Seizures changing does that happen???

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I am trying to figure this out..my daughter Emily Klair is 3 1/2 years old and has had absence and drop seizures we just found out that they were generalized with a veeg this July. Anywho she got sick about 2 weeks ago well she had her first tonic clonic seizure and she had them all week morning and night. We just assumed that it was because she was sick and the Dr. put her on some valum morning and night and then gave us some new diastat to carry with us. Well it has been 2 weeks and we are still having these seizures. The Dr. does not seem to be to worried but I am wondering why they are changing all of a sudden and becoming more frequent. You look at her and she has big dark circles under her eyes and she does not look like my Emmy Klair..my husband and family and friends are really concerned she looks unwell. Just wondered if anybody else was going through this...thanks for the feedback... Emily Klair's mom...Kari

Comments

Re: Seizures changing does that happen???

Submitted by txrhb1 on Mon, 2006-10-16 - 02:42

Dear Kari, My heart breaks for you as I read your post. As mothers, I think we have built in knowledge of our kids, and we know that something is wrong, and unfortunately, not all doctors will listen to us. I've certainly been there with Jessie. What meds is Emily Klair taking now, what dosages? Is her energy level low? How is she eating? I went through a similar situation with Jessie, so I was just curious My thoughts and prayers are with you !! ((( hugs ))), Barbie _________________________________________________________________ Raise money for your favorite charity such as Epilepsy Therapy Development just by searching the Internet with GoodSearch- www.goodsearch.com

Re: Re: Seizures changing does that happen???

Submitted by EKlairsmom on Mon, 2006-10-16 - 12:55

Hi Barbie.. Emily Klair is on Keppra at 1.5 ml morning and night. She has very little energy, big dark circles under her eyes, one minute she is fine the next she is wiped out...very easily upset and cries all the time. I hate the way she looks( there is a difference in sick and unwell and she really looks unwell)one day she eats us out of house and home and the next she won't even touch food or drink she still has not gained weight. What happened with Jessie? was it the medicine or was it something else? Let me know please I need all the advice I can get right now. Thank-you..Kari

Re: Re: Re: Seizures changing does that happen???

Submitted by txrhb1 on Mon, 2006-10-16 - 13:54

Dear Kari, When Jessie was in her late teens, we went through an episode something like what you are describing. Jessie was wiped out most of the time, could not keep up with school work, wasn't eating, seizures increased, etc. Finally, her doctor ordered blood tests, and it ended up that her AED's were at toxic levels, causing her such major problems. I would get Emily Klair to the doc ASAP, and have them run all blood tests possible. Do not let them tell you that nothing is wrong, when you know your child better than anyone. Take control, and stand strong !! Has she seen the primary care doc yet? Has he run blood tests? Are you taking her to a neuro or an epileptologist? Reading back through your blogs, it seems like this problem started with the Keppra, and escalated when they increased the dose? You might want to go back and make a quick diary of the changes, and take them with you to the doc. Personally, (and remember, I am a mom, not a doctor) I would probably demand that they change meds. These side effects are seriously affecting the quality of life for her and for you ! I can't give you medical advice, but I can empathize with you as a parent !! If I can do anything, please let me know !!! ((( hugs ))), Barbie