Saturday, February 18, 2012

A Cry for help for my sister: brain damage, seizures, adhd, missing chromosomes

Meet Amy, my sister. She suffers from uncontrolled seizures that are causing brain damage and is having significant regression. She has been diagnosed with partial complex seizure which has become worse and spreading from the left side of her brain to the right, with brain damage to the left side due to uncontrolled seizures. She also has A.D.H.D., predominately inattentive type & Anxiety Disorder, A Missing Chromosome, as well as Sleep Apnea.
Hey everyone! I first want to thank you for taking the time to read this and hopefully help or give some insight. This is on behalf of my 9 year old sister who has a various amount of medical problems. We are not asking for money, but donations would be very helpful. I will explain further shortly.

 The number one thing we are interested in is finding a DOCTOR
who is able and/or willing to help. Any information, doctors, contact, etc is what we really need right now.

As far as any money goes, my parents are at $70,000 (and growing daily) in debt trying to cover medical expenses, doctors, research tests, counseling, etc. While the number one reason for this post is to hopefully draw enough attention to get information and find a doctor who can help our family, any donations to pay for these bills would mean a lot as well. They do have insurance coverage, but I'm sure as many of you know that only goes so far. Medicaid (state government insurance) denied my sister for coverage because "they make too much". Don't get me started on how the government system is.

With all that being said, here's the details of what's going on. PLEASE if you can help. Leave a comment, email me, or if you're making a monetary donation, use the paypal button and make a note that it's for my sister and I will give it directly to them. Thank you in advance to everyone who takes the time to respond/help.

In short

My sister's name is Amy. She is 9 years old. Born December 2, 2002. According to Amy's latest evaluation, her seizures are still not under control and the seizure has cause some brain damage.  Bottom line, if we cannot find a doctor that can get the seizures under control Amy's condition will worsen.  Amy's evaluation indicates an actual loss in function as compared to a failure to develop at an expected rate.

Amy's cognitive difficulties are related to her seizure disorder (and possibly her chromosomal abnormality).  Additionally, her behavioral and emotional dysregulation is likely due, at least in part, to brain injury related to her  seizure disorder (and possibly her chromosomal abnormality). Although Amy is reportedly experiencing pseudo seizures in addition to genuine seizure activity, the actual seizure activity is obviously causing significant insult to her brain.


The full information
This is from the doctors, my mom passed it along. It gives a lot of details and full evaluation of the situation. I uploaded the file and made it available on the blog (see below). If for some reason it's having issues, here's the direct link to it's post: http://www.scribd.com/fullscreen/82064578?access_key=key-1mtijcctndk8c1i8vads Please keep in mind it will take a few minutes to open.


You can use the + button at the bottom of the embedded file to enlarge it for clear reading.





Amy Eval 2012001



Right now we are in a desperate situation. Medical bills are way over their heads, but as I already stated, they are willing to do what it takes in order to find a cure or some help with the situation. My mom is working herself sick, literally, staying up all hours to try and research in hopes of finding information. Whether it's a doctor or information leading to another test to try out to medicines that can help resolve this medical illness.






 If you are a doctor, no matter your location (although we are in New Orleans, LA) please feel free to contact me at closetsamples@gmail.com or leave a comment with your contact information for me to pass along to my mom.
 
Please make a note that the donation is "for Amy" so I can be sure that it gets sent directly to her as this is my own personal Paypal account where I will with draw the money from my Paypal debit card. Please know that ALL donations of any amount are very much appreciated.


All information and comments are welcome. Thank you again for your support!
On behalf of myself and my family.

2 comments:

  1. I am so sorry to hear about your sister. I don't have a Dr's name to pass on to you, because it has been years since I was in the field as a nurse. However, I did want to suggest that your family seek a consultation at Texas Children's Hospital in Houston, TX. That shouldn't be too far from where you live and it is ranked as one of the top 10 children's hospitals in the country. Here is their link: http://www.texaschildrens.org/ Good luck and I will pray for your sister.

    ReplyDelete
  2. Thanks so much. She's been to the Childrens hospital here in New Orleans, but I will pass along your comment to my mom in case it is of any help to her or in case she hasn't looked into there.

    ReplyDelete

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