Mutterings Of A Mindless Mommy » Seizure Disorders

The H1N1 Fairy has Visited the Mindless Mommy Household

Melissa — Tue, 13 Oct 2009 21:20:37 +0000

With all her germy sparkliness, the H1N1 Fairy has visited the Mindless Mommy household – not once, but twice. While on a flight to Atlanta last weekend, I wrote about my daughter’s experience with H1N1, Asthma, and a Severe Case of Croup. Last week was relatively quiet in our house but Alexander ended up getting admitted to the hospital Friday night after the Ativan they gave him to stop his seizures caused him to have some seriously hard-core hallucinations.

Unfortunately, the pediatric floor of the hospital was full. As in no…beds..available. The new children’s hospital doesn’t open until next month so they are also working in a smaller pediatric emergency room. We ended up staying in a private room in the ER for the duration of his hospital stay. All around us were children sick with the flu. My hands are still dry from washing them so often but alas, our efforts were for naught. Alexander went from a happy kid yesterday morning to a miserable kid with a 103 fever within two hours.

So now the H1N1 fairy has bestowed her germy sparklies on Alex. He’s in the other room now hacking away but playing video games. Yes, I know, bad mommy, letting him play video games. Hey, he’s sick and so he deserves a little treat, right?

Now I’ve started coughing a bit more and my throat is starting to hurt. However, I don’t have any openings in my schedule until next summer so no H1N1 Fairy, you will not pay me a visit.

Hallucinations and Simple Partial Seizures

Melissa — Thu, 03 Sep 2009 02:22:25 +0000

Today was one of my scariest days as a mom.

At about 2:30 pm today, I received a call from the school nurse. The kids get out of school at 3:30 pm and so I was a bit surprised to be receiving a call. The nurse said that Alexander was in the office and he was having a bit of a meltdown. She then went on to explain to me that Alexander thought he saw a spider on his shoe in class and that the teacher, the Principal, and the nurse all had to work to reassure Alexander that the spider was gone. No one actually saw the spider, but Alexander was adamant.

The nurse said that Alexander was pretty traumatized by the event and asked me to come in to get him. When I got to the school just a few minutes later, Alexander was sitting on one of the beds in the nurse’s office in a fetal position with his right shoe and sock off.

While I was there talking to him, he swore he saw a spider. He was so absolutely petrified and he completely froze. The nurse quickly jumped up and turned on the overhead light so that Alex could see more clearly. I was rubbing my finger on the spot where he saw the spider to help reassure him that there was not a spider there, yet he remained adamant.

I went ahead and got Ava out of class a little early because I wasn’t sure what my evening was going to hold. I managed to convince Alexander to put his sock back on and then we all walked out to the car. At that point I was near tears and I did not have a clue what I should do.

I ended up calling the pediatrician’s office and managed to make an appointment for 3:50 (by now it was nearly 3:00 pm). After that I called my dad because Dave was out-of-reach and I just had no clue what to do. I wasn’t sure if the pediatrician would be of any help or if I should go to the children’s hospital.

Parents think about it. If your child were suddenly hallucinating, what would you do? I was petrified.

Once I got home, I decided to call the neurologist. Thankfully he was in his office and so I got to immediately speak with him. After I told him Alex’s symptoms he explained to me that they were simple partial seizures. I asked him if he was sure it was neurological as opposed to psychological because Alexander has full recollection of the events and was still absolutely petrified.

The neurologist reassured me that this is one way that simple partial seizures can manifest and that for the person experiencing the seizures, the hallucinations are most definitely real. He told me that all I can do is to reassure Alex that he is, indeed, having a seizure.

The neurologist called in a prescription for Tegretol to add to Alex’s Keppra. Alex was originally diagnosed with complex partial seizures in summer 2008 and has yet to truly have full seizure control.

When I got off the phone with the neurologist I just wanted to cry. I was so absolutely frightened that my sweet eight-year old was having a psychotic break while I watched helplessly. He had a few more episodes this evening but he is now sleeping restfully.

I can only hope that this medicine helps my little boy. I have spoken with the teachers and the nurse at the school who were all equally frightened by the event. They are glad to know that his doctor and I are on top of it and taking measures to help prevent this from happening again.

Tomorrow Alex will stay home with me. I don’t want him to have to go through another day like he did today.

Epilepsy Foundation Launches Epilepsy and My Child Website

Melissa — Tue, 16 Jun 2009 19:03:55 +0000

I just received the latest e-newsletter from the Epilepsy Foundation; the organization has announced that a new website targeted at parents of children with epilepsy has just been launched. The Epilepsy and my child website has several sections:

Just Diagnosed
About Epilepsy
Treatment
Living With Epilepsy
Raising Awareness
Resources & Connections
Letters from Parents
and much more

I wish that this information was available in such an easy to navigate format when Alexander was undergoing the diagnostic process last summer. I Googled my behind off to find this type of information and now, it is all available in one location. I’m glad that the Epilepsy Foundation created the website, though. It will still help me but I imagine it will be a tremendous research for parents just beginning the journey.

Town of Gilbert, Arizona May Cut Special Needs Services

Melissa — Tue, 05 May 2009 03:48:01 +0000

The following is posted with permission in reference to the 5/5/09 meeting:

On next Wednesday’s Town Council agenda, there is an item relating to the proposed budget for next year. On page 8 of the council communication there is a listing of services that will be considered for elimination from the budget…one of those items is the elimination of the staff that provides the special needs programming through the parks and recreation department (called Community Services here in Gilbert).

Here is the link:
http://www.ci.gilbert.az.us/boards/staffreports/council/027-05-05-09cc.pdf

If I can answer any questions, feel free to call me: 480 580-4132.
Bobbi Smith
Gilbert Parks Advisory Board

Here is a sample of what you could say or write to the Town Council:

I am writing regarding an agenda item on the Tuesday, May 5th Gilbert Town Council agenda. Item 27 recommends decimating the Community Services parks and recreation programs by eliminating teen, youth sport, special needs, outdoor, special event and ranger staffing.

Gilbert already has the leanest staff to population-served ratio in the valley. Our handful of recreation employees does an exemplary job of providing services to thousands of residents.

These services help create the “family-friendly” atmosphere that is always listed as an asset to Gilbert. Recreation services add value, safety and quality to resident’s perception of their community. They also attract businesses that are touted as economic engines for the future of Gilbert.

If they were adequately staffed, all programs could operate at a more successful level, both in terms of services provided and economic
recovery. However, the recommended staff reductions will guarantee that many programs cannot exist to serve residents. Without programming, our capital investment in pools, land and recreation facilities will be getting an even lower return on operation and maintenance costs.

Gilbert residents deserve more. Gilbert residents moved here because they expect more.

Please join me in encouraging the Town Council to consider other options to increase revenue vs. reducing our community services to the role of a maintenance department.

Phoenix Coyotes Purple Day

Melissa — Fri, 20 Mar 2009 01:01:55 +0000

I received the following email today:

In partnership with the Anita Kaufmann Foundation and the Epilepsy Foundation of Arizona, the Phoenix Coyotes host Purple Day on Thursday, March 26th.

The Phoenix Coyotes have offered to help increase epilepsy awareness and further the mission of the Epilepsy Foundation of Arizona by donating a portion of ticket sales to support the programs and services of the EFAZ.

Purple day was started by nine-year-old Cassidy Megan of Nova Scotia, Canada. Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Join the Anita Kaufmann Foundation, Phoenix Coyotes and the Epilepsy Foundation of Arizona to educate the people of the Valley on epilepsy and the issues surrounding the disorder. Please see the attached flyer for ticket purchase information. Everyone that goes to the game will receive a free Coyotes Hat!

Oh! And don’t forget the 8th Annual Arizona Epilepsy Walk next Saturday, March 28th at the Phoenix Zoo. All walk participants will receive free zoo admission for the day. Visit www.azepilepsywalk.org to pre-register today!

Instead of attaching the flyer, more information on the game can be found here: Phoenix Coyotes Purple Day.

Complementary Therapies Discussion on Epilepsy Talk Radio

Melissa — Tue, 13 Jan 2009 18:16:50 +0000

This just landed in my inbox and may be of interest to other families that deal with epilepsy.

Alternatives to Antiepileptic Drugs: What “health foods” have anti-seizure properties? How can they be used? Are they safe? Persons with chronic health problems often use alternative or complementary therapies, but the effectiveness, safety and risks of these approaches are often not fully known, especially for persons with epilepsy. Please join Dr. Steven Schachter to discuss Complementary Therapies for Epilepsy. Dr. Schachter is a Professor of Neurology and Director of Research, Department of Neurology, Harvard Medical School and Beth Israel Deaconess Medical Center and President of the American Epilepsy Society.

The program is scheduled at 8:00 pm ET tomorrow, January 14. You can listen to the live streaming content on the Epilepsy.com website.

Navigating Arizona’s Division of Developmental Disabilities – Eligibility

Melissa — Tue, 13 Jan 2009 05:18:45 +0000

I have decided to start a series of posts describing how a parent can navigate the State of Arizona’s Division of Developmental Disabilities (DDD). I am well versed in the process having been working with “the system” since 2006 when my daughter was diagnosed with autism. I am diligent about scouring the web for information on any process and immersed myself in finding out how to begin the long process of getting my daughter eligible for state services (not school-provided).

The first in the series of posts will be eligibility. In the state of Arizona, four diagnoses are used to determine DDD eligibility: epilepsy, cerebral palsy, cognitive disability* or autism. The diagnosis must be made prior to a person’s 18th birthday in order to be eligible.

For children under the age of six, an “at risk of” statement can be used for DDD referrals. The Arizona Department of Economic Security defines at risk as “a child under the age of six years may be eligible if there is a strongly demonstrated potential that the child has or will have a developmental disability as determined by appropriate tests.”

In order for a child to be found eligible for DDD services, they must show substantial functional limitations in three of seven areas in addition to having a qualifying diagnosis. The life areas assessed are self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency.

It is important to note that the state of Arizona only recognizes autistic disorder, ICD-9 299.00, as a qualifying autism diagnosis after the child’s sixth birthday. Children that have received a diagnosis of PDD-NOS or Asperger’s Syndrome may qualify prior to the age of six in the at risk category but unless an autistic disorder diagnosis is received, DDD eligibility ends on the child’s sixth birthday.

Once a child has been found DDD eligible, they are eligible for life if they have one of the four eligible diagnoses. However, DDD eligibility does not come with much in the way of services, as the funding is not there. The Arizona Long Term Care System (ALTCS) is who funds services for some of the DDD-eligible population. That is an entirely different process and another set of hoops to jump through; I will be addressing that in a future post.

For more information, visit the Arizona Division of Developmental Disabilities website.

* The state of Arizona’s Division of Developmental Disabilities has adopted the use of the phrase cognitive disability to represent what is also known as mental retardation.

The Official Diagnosis is Complex Partial Seizures

Melissa — Mon, 14 Jul 2008 22:24:32 +0000

On June 13 I explored the relationship between Autism and Epilepsy as I prepared for my son’s appointment with a neurologist. We had our official appointment with the neurologist on July 1st and the appointment went very well. The doctor was fantastic and listened to all of my concerns and then proceeded to do a basic neurological exam on Alexander.

Alexander was in one of his less-social moods. At one point during the exam, the neurologist handed my son a piece of paper and asked him to read the paper. After a bit of silence, the neurologist pointed to one of the lines on the paper and said “read that line” to which Alexander replied “I already did.” I chuckled as I realized that Alexander was reading in his head. I told Alexander that the doctor wanted to hear him read to which Alexander proclaimed “I read in my head.” He flat-out refused to read aloud. The doctor was great and didn’t push it.

The doctor said that the episodes that Alexander is having are all complex partial seizures. According to the Epilepsy Foundation website:

“During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn’t know what he or she is doing; and cannot remember afterwards what happened during the seizure.”

This helps to explain some of Alexander’s odd meltdowns. These aren’t your typical “autism tantrums” but instead a much shorter but very odd meltdown of which Alexander has no recollection. The doctor said that this might also explain his sleepwalking, night terrors and frequent nightmares. Alexander will have nightmares four or five nights a week on average. I know that nightmares are common in childhood, but four or five nights a week is just not typical.

Alexander started on a medicine called Keppra which is supposed to work very will with these types of seizures. I have only noticed two obvious seizures in the first ten days of the medicine. He is only having nightmares three or four nights a week now as well. I haven’t seen him sleepwalking (which he usually does a couple of times a week) and no night terrors.

The only downside is Keppra can come with some behavioral side effects – someone coined the term Kepprage to describe these tiresome side effects. Alexander is definitely a bit grouchier than normal but so far nothing all out rage-like. Hopefully they side effects will ramp down once he reaches his therapeutic dose in a couple of weeks.