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Seizures changing does that happen???

Sat, 09/30/2006 - 23:05
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

Hi Kari.. I had seizures

Submitted by solis on Sun, 2006-10-01 - 00:42
Hi Kari.. I had seizures since I was three (that was long ago and there were very few meds back then) so let me try and share some of the info I learned through the decades. The first thing I'd ask (politely) is if you take your daughter to a neurologist or an epileptologist. There is a huge difference.. epileptologists are neurologists that focus directly on (and have advanced education in) epilepsy whereas neurologists treat all brain and spinal cord problems. I saw neurologists all my life, but it wasn't until I was sent to an epileptologist that I got controlled (with meds that had been on the market for years). Had I known such a thing as epileptologists existed, I'd have wanted one decades before. My guess is you are seeing a neurologist: "Diazepam was first used in the United States in 1968. The pill form (best known by the brand name Valium, but also available in many generic forms) is too slowly absorbed when taken by mouth to be used to stop a seizure, and is only moderately effective against epilepsy." http://www.epilepsy.com/medications/i_diastat_intro.html "An important concern when people with epilepsy take benzodiazepines regularly is the risk that seizures will become more frequent or more severe if the medicine is reduced or stopped. Tolerance, the need for higher doses to achieve the same effect, is also a common problem. But since Diastat is not used regularly, issues of withdrawal and tolerance are much less likely to arise than with medications that are used every day." http://www.epilepsy.com/medications/i_diastat_serious.htm Note.. Diastat (Valium) is not intened for use every day. (epilepsy.com is made by physicians so the info there is accurate) Friend, if your Dr is 'content', despite what is happening to your daughter, I'd (politely) suggest you find a new one. Since I was 20, I went through over 12 physicians before I met the epileptologist and got controlled. I wish you and your daughter the very best.. ~sol

Re: Seizures changing does that happen???

Submitted by DJsMom on Tue, 2006-10-03 - 21:36
Hi Kari - Seriously, you need to get your daughter to a new doctor pronto. It sounds to me like she should be in the hospital. Where do you live? You may email me if you need help. DjsMom

Re: Seizures changing does that happen???

Submitted by txrhb1 on Tue, 2006-10-03 - 23:25

Hi Kari, Like you, I would be very concerned if this was happening to Jessie. I would suggest either finding a new doctor, or insisting that the current one run some blood level tests and take a look at her himself. He needs to provide you with more of an answer than "oh, it's ok, it will get better" ! Not an acceptable answer to a worried parent. ((( hugs ))), Barbie _________________________________________________________________ Raise money for your favorite charity or school just by searching the Internet with GoodSearch- www.goodsearch.com - powered by Yahoo

Hi Kari, Like you, I would be very concerned if this was happening to Jessie. I would suggest either finding a new doctor, or insisting that the current one run some blood level tests and take a look at her himself. He needs to provide you with more of an answer than "oh, it's ok, it will get better" ! Not an acceptable answer to a worried parent. ((( hugs ))), Barbie _________________________________________________________________ Raise money for your favorite charity or school just by searching the Internet with GoodSearch- www.goodsearch.com - powered by Yahoo

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