"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…"
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Progressive myoclonic Epilepsy
Started Mar 1 0 Replies 0 Likes
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 0 Likes
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 0 Likes
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 0 Likes
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
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Latest Activity
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…"
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…"
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…"
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…"
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…"
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…"
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…"
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. "
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…"
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…"
paula added a discussion to the group Parents Talking w/Parents
Not another name...
I recently switched my daughter to a neurologist that was not part of her children's hospital. I went to her GI this last week and he went into a rage and started lecturing b/c I went away from this hospital. I was stunned. At the big hospital, my dd was just a name on the screen. They would forget her history, I would repeat myself over and over. After 3 1/2 years, I still had no answers. The final straw was knowing she has PME and not talling me.OUr kids aren't just names on paper or a…See More
paula replied to Elizabeth Baron's discussion Abdominal Epilepsy? in the group Parents Talking w/Parents"Could they be migraines? A lot of our kids have migraines along with epilepsy and they can cause abdominal pain.
My dd has autonomic seizures as well as PME. She is completely out of it while she vomits. It comes suddenly and…"
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Comment Wall (2 comments)
- 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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