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paula's Discussions

Progressive myoclonic Epilepsy

Started Mar 1, 2013 0 Replies

I just found out through a genetic test that my daughter has this.  It's been almost a year since I have posted on this site because we thought something else might have been wrong with her.  She…Continue

Had ARD-denied the para professional

Started this discussion. Last reply by Rachel D Schaefer Sep 25, 2012. 8 Replies

I don't get it.  The diagnostician asked me about last week and offered one. I have a doctor's note stating that she needs one at recess and PE.  I get to the meeting and was told by the AP-NO! Her…Continue

Has anyone had a para professional in school for their child?

Started this discussion. Last reply by dmom3005 Aug 22, 2012. 6 Replies

Did you meet them before school started?Did they have to be CPR certified or trained?My daughter's new school has agreed to hire someone for her during recess and PE. Any other suggestions I should…Continue

School doesn't want to do the evaluation for my DD IEP

Started this discussion. Last reply by paula Feb 28, 2012. 6 Replies

My dd IEP is expiring this year and she was supposed to have a re evaluation before she starts 1st grade. They have done a vision test which I know she failed.  I got a call on Friday saying that…Continue

 

paula's Page

Latest Activity

paula shared Jenny Levine's discussion on Facebook
Jan 23
Jessie Gray replied to paula's discussion Anyone else been told not to have children?
"I was told earlier this year not to have children, because there was an increased risk of a baby being born with the same birth defect as me (spastic paraparesis).  Not only that, but my gastroenterologist told me that due to my gastroparesis…"
Oct 12, 2013
Julie replied to paula's discussion Anyone else been told not to have children?
"Kristin,  After becoming a mother 17 years ago, I realized the only thing I regret is not beeing well informed by my doctors about consecuences of the medication I took for that in that time. Perhaps it caused her depression. That affected her…"
Jul 1, 2013
paula replied to Ashley Semelroth's discussion Development and epilepsy
"I am sorry you are going through this and do not know how much I can help. I have a 7 year old and wish I hadn't waited until she was 3 to get her speech therapy.  She is on year 4 and now only requires it through the school but I wonder…"
Jun 22, 2013
paula replied to Seberina's discussion Can you get an IEP for Dyslexia and Epilepsy?
"Depending on where you are from, most school districts have special programs for children with dyslexia. If a child has dyslexia, it prompts a 504-not IEP. In Texas, my daughter has an IEP for epilepsy but is on a watch list for dyslexia.  If…"
Jun 9, 2013
paula replied to paula's discussion Anyone else been told not to have children?
"My DH and I have decided not to try to have children.  It turns out my sister, me and my daughter have a genetic illness-just at varying degrees.  She also has PME so we do not know what the future holds.  I was told 6mos ago that it…"
Apr 7, 2013
Ingrid Mondragon replied to paula's discussion Anyone else been told not to have children?
"Hi! I'm new to all this but, I wanted to say that I was told never to have children. At age 27 though, I became pregnant with my daughter and was told by two doctors clinics not to go through with my pregnancy. I didn't want to have an…"
Apr 7, 2013
paula replied to Marilyn's discussion Panayiotopoulos syndrome?
"Sorry...I don;t want to hi jack this post but by EDS do you mean Ehlers Danlos? my dd was diagnosed with this.  She has some of the issues mentioned in the other posts also but has been diagnosed with PME.  It is so hard to tell what is…"
Apr 4, 2013
Ashley Crawford replied to paula's discussion Anyone else been told not to have children?
"My son has been tested since birth for genetic disorders specifically Costello's but that was ruled out and at four months diagnosed with epilepsy. He is 7 months old now and has only been out of the hospital a month. We are in the same boat we…"
Apr 1, 2013
paula replied to Courtney's discussion Marriage and Epilepsy in the group Parents Talking w/Parents
"My ex actually left after my dd got sick.  She is 7 and he hasn't seen her in 3 1/2 years.  I met a wonderful man that takes care and loves both of us.  We have our issues-he is only her step dad in the eyes of the medical…"
Mar 29, 2013
Courtney liked paula's discussion Not another name...
Mar 29, 2013
donald burger replied to paula's discussion Not another name... in the group Parents Talking w/Parents
"We have gone through many doctors, some made us feel like a number, other we could never get when we need them, and we had one that just did not know what to do with our dd Don't settle find the right doctor for u they are out there but take…"
Mar 28, 2013
Debra Hanson replied to paula's discussion Not another name... in the group Parents Talking w/Parents
"I think doctors do need to recognize that they are treating a HUMAN BEING, not just a case of epilepsy.  That is part of the reason why we have stayed with our neurologist throughout this whole journey.  That is also the reason we have…"
Mar 28, 2013
Lisa Barry replied to paula's discussion Not another name... in the group Parents Talking w/Parents
"Unfortunately, too many of us know exactly how you feel! I think I have learned more from other parents than I have from the epileptologists. "
Mar 27, 2013
Carla Lech replied to paula's discussion Not another name... in the group Parents Talking w/Parents
"I know exactly how you feel.  My daughter has recently been diagnosed with epilepsy.  I get no real answers, I was told that what we thought were dizzy spells, and possible painc attacks were seizures after doing a 24hr EEG.  I did…"
Mar 25, 2013
Scott Y replied to paula's discussion Not another name... in the group Parents Talking w/Parents
"It is critical to feel heard and cared for by your doctors.  I strongly believe you needed to switch if you didn't feel cared for.  Specialists MUST have a warmer side to them especially with our issues.  Best of luck to you and…"
Mar 24, 2013

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At 12:13pm on March 15, 2011, I&R Group said…

Paula,

Please contact The Epilepsy Foundation at legalrights@efa.org.

 

Mary Ann Thornton

The Epilepsy Resource Center 

At 4:58pm on September 28, 2010, Todd Matthew Kozuszek said…
Welcome to the Epilepsy Foundation's creation of conversations! I hope
you find the Communities as constructive and positive as I have. If you
are interested in talking with someone who has a seizure disorder, I'm
letting you know that I'm here!
You have a wonderful day,

Todd Matthew Kozuszek
 
 
 

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