Facing it...Like it or Not!

Tomorrow is yet another meeting with the school. This time a doctor will do a classroom evaluation of Shan...lasting all of 15 minutes if we're lucky. Supposedly to see if there are more services that the school could offer Shan. But given this very tumultuous school year I wonder if they aren't more motivated by proving that I am expecting too much of them. This meeting was supposed to be on May 3rd but was post-poned. Too bad no one called to inform me. That's the third meeting of ours this year that was changed without calling to inform me. So, I will admit that maybe my patience is wearing thin...Thank goodness, it's almost summer! LOL.

On other more enjoyable notes (yes, we do have happy news occassionally, too) we are looking forward to two really wonderful events for our local Epilepsy Foundation.

1. On June 13th we will be attending a walk for Epilepsy Awareness! The first ever in Oswego County! To be held at the Phoenix Head Start/Discovery Day Care in Phoenix, NY. I cannot wait and more importantly Shan is SOOO excited. There has even been whispers about possibly starting our own Oswego County Support Group. Fingers Crossed on that one!
2. On June18th we will be attending a "Wayne's Weather Deck Party" on WSTM Channel 3 to help honor and thank the Epilepsy Foundation for all of the work they do. Shan and I sent in a letter explaining why we thought the foundation workers and volunteers deserved a thank you party. I was thrilled when we received a phone call saying that our letter had been chosen!

Add into that all the typical end of school year drama and Shan's 12th B-Day and we're going to have a pretty busy June. And somehow, the school has managed to give me NOT one, NOT two, BUT THREE different "Last Day"(s) of school! Shan's last day will be on June 15th, Cay's is on June 23rd, and Poor Will's is on June 25th! I think he may just go nuts and start chanting, "VIVA LE REVOLUTION!" as he tries to overthrough the school powers that be! LOL.

If you can get there please join us at the Epilepsy Walk. I'd love to see you there!

Nearly a Year

It's been nearly a year since Shan's "first" seizure. Which in hindsight wasn't her first seizure at all...Just the first that we were aware of. Looking back on this year is nearly as hard as living it.

We've had many good moments this year but Epilepsy has felt like a shadow that has followed our every step. Like living in the twilight zone. Things that should've been normal...somehow weren't. The first day of school was very exciting for Shan as she was beginning middle school. But the second she returned home I could tell that something was very wrong. Hours later, after being admitted to the hospital, we finally found that Shan's Valproic Acid levels were suddenly (despite frequent testing) extremely high causing her to be "toxic". We spent three days in the hospital.

I have days were I'm so proud of how we've handled this and I have had days when I'm positive that I can't handle anymore. The constant not knowing what will happen next has left me afraid to make plans unless it includes the entire family. I find it very difficult to be away from the children especially Shan for any legnth of time. I'm positive that I can see warning signs of issues before anyone else would notice. Probably because I have seen the warning signs and discovered issues when others have not.

I know that I haven't posted in a long time but I've felt very overwhelmed by too many responsibilities and too little patience. Which brings me to today...Shan has recently started another medication and so far it seems to be working. I am cautiously hopeful. Very Cautiously. So, I am trying to get back to...well...LIFE. So please, Bear with me.

Refractory

Hi all,
Sorry I haven't been around in a while. We had a vacation (very enjoyable) and a lot of appointments (not enjoyable at all).
Shan has been doing well. She has very few unprovoked seizures. Last month she only had 3! Yeah us! The Meds (Depakote ER and Carnitor) seem to be having a good effect on the unprovoked seizures. However, they are doing nothing for the photosensitivity induced seizures. She had 10 of those last month. A majority where caused by lightning flashes. Luckily these seizures don't include falling, etc. Instead, I call them Deceive Seizures because she looks fine but her comprehension is non-exsistent. These are the seizures that cause her to wander into traffic, be unable to tie her shoes, or gives her a glazed over "high" look. Her language skills become very slow and words are often mixed up.
The neurologist has prescribed blue tinted sunglasses for Shan to wear 24/7 in the hopes that she will have less light induced seizures. I called our insurance company to see if I needed Authorization and was told no they'd be fully covered under medical not eyecare. I called a second time to double check...same answer. The eye doctor wanted to ensure that they would pay in full so they insisted on not dying the lenses until the claim was paid. I called to check on the claim and told it was being process under full medical. I called again and was told that they had indeed paid the claim in full. I excitedly called the eye doctor to tell them. They looked into it and called back saying that the company had paid $45 towards the frames, the entire cost of the lenses, and had completely denied the tinting. I called the insurance company again...OOOPS it was processed under eyecare. Now, they have to re-process the claim again. That will be another additional 2 weeks from now.
I've been fighting for these glasses since July 7th. I hate insurance companies. They also suggested that I forward documentation from the neurologist's office saying that these are medically necessary so that there won't be further delay waiting for that documentation. Talk about a run around! I'm glad I don't work because this is a full time job in itself.

On an upsetting note, The Neurologist feels that Shan is a refractory case and that we've gotten the best control over her seizures that we can without medicating her into oblivion. Ofcourse, this saddens me.

Well, that's our update. Thanks so much for all the insight and support you've all given us. I hope that I'll be able to check in a bit more often...if I can ever get off the phone with the insurance jerks...LOL.

Advocacy and Failure

I don't know what is more devestating after an Epilepsy diagnosis. Obviously, the impact on your health and your healthcare is dramatic and overwhelming. But the social impact can be immediate, profound, and just as dramatic. However, the worst part to me (as the parent of a child with JME) is the constant demands on me to negotiate my way through the never ending shoulds and shouldn'ts...

From the day she was diagnosed with Epilepsy I have heard repeatedly from every doctor, from every parent of a child with Epilepsy, from my local Epilepsy foundation educator that I need to be an advocate for my child. Even the word "ADVOCATE" requires a person to realize the importance of the job. I was confident in my ability to be an Advocate for her. I felt assured that I would find no difficulty in educating the school to her new "special" needs. I was armed with the knowledge that Open Communication is the Key to Success. Confident. Prepared. Advocate.

Failure.

It is heartbreaking to realize that you have failed your child so completely when you've been working so dilligently to ensure nothing but success for her. Yet, that is my sudden realization today.

Since her seizure on February 25, 2008 I have visited the school 12 times to speak to one or multiple staff members about Shan's condition, treatment, behavior, and class work. During each of these visits (most often with her teachers and the nurse) I would always end by saying, "Please call or e-mail me for any reason." And I was always assured that they would. However, I have never been contacted by the school except by the school nurse. I would go into her classrooms and ask about her work. Occassionally, I would be given some overdue assignment information but no matter how many times I asked to be notified when she was overdue no teacher ever contacted me. So what if she's late on a couple assignments here and there? It's not like she's a bad student. It's not like she's intentionally NOT doing her work. The fact is she usually did the work 2 or 3 times per assignment...but then she'd lose it, forget to hand it in, have some lapse of conciousness and OOOPS! And besides, I visited the school regularly, if she were in real trouble someone would've told me! Right?

Wrong! I found out over this weekend that my daughter has been sent to the "Support Room" several times during lunch to complete missing or late homework. She describes these "Support Room" visits as lunch detentions. This upset me greatly and it enraged hubby! How could any one of her teachers give her a lunch detention without contacting us first given her circumstances? Especially after 12 visits asking, BEGGING, for any information regarding her status in school.

So, hubby and I decided to visit the school yet again. Visit #13. I wrote a clear, concise letter stating what issues I had with the disciplinarian action taken against Shan. I printed multiple copies for the principle and each of her main teachers. As always, I felt prepared. Upon arriving we were able to meet with the principle immediately. (Let me clearly state here that personally, I find this woman to be a wonderful person. She has always shown a dedication and devotion to her students that has made me admire her tremendously. It is not my intention to cause harm to any staff member of my daughter's school. In fact, my only intention is to document my dealings, and MY feelings during this time period of our lives.) I briefly explained the situation to her. She checked the "Support Room" log and indeed Shan had been there on Thursday of last week. However, she stressed that the "Support Room" is not always used in a disciplinarian manner. It is often used as a space to give a child extra time with work, or to let them catch up on work. As she suspected was the case with Shan. Hubby explained that while "We" can understand the difference Shan felt that she had lunch detention. (IMO, if you're not allowed lunch privledges with everyone else then yes, you have lunch detention.) The principle agreed that Shan is such a sensitive person that she probably did feel "punished". At this point, I again, reitterated that if I had been told about late, or missing work I would've done everything I could to get her back on track. I also said that Shan was concerned about more upcoming detentions and that I assured her that I would not allow that to happen again. We were assured by the principle that she would speak to the teachers about the matter. I mentioned that I had a letter stating our concerns. She said she didn't think it was necessary at this time.

Entire meeting: Three minutes.

Hubby has confidence in the Principal's word to resolve the matter. I would like to say that I am confident but I am actually only mildly hopeful. I don't know if my feelings stem from the fact that I spent hours preparing for a 3 minute meeting. Or from the fact, that I did NOT get the chance to speak directly to the teacher who initiated these repeated "Support Room" visits. Or because I'm in the process of gearing up for a IEP/504 meeting tomorrow. But overall, I feel that my daughter was punished because of the effects Epilepsy has had on her memory and her abilities to stay organized. And what's worse is it happened when I was on guard...when I was looking out for her...when I was Advocating for her. Deep in my heart, I know I failed her yet again. It makes me so weary to continually try and to continually fail. Yet, my only other option is to not try at all and that is unacceptable to me.

Seizures in School Update

Update:Hubby and I went to school this morning. We spent an hour "catching" teachers and nurses and aides as they headed in for the day. The office had asked us to get the Nurse's okay before handing out our flyer but the nurse wasn't due to arrive until a half hour after the teachers so...We handed them out anyway.

We spoke with every 5th grade teacher. And then we spoke with the Band teacher who (in her defense) said that before she reminded Shan of what was acceptable behaviour in band she asked if Shan needed to go to the Nurse. Shan said, "No, I'm okay." And so she didn't think it was seizure related. I explained that with Shan she occassionally gets unprovoked anger about 2 hours before the onset of a larger seizure and that if the anger is unprovoked that Shan always needs to go to the Nurse despite whatever she may say.

We then spoke to the nurse who okay'd the handouts (luckily since they were half gone). However, she did ask that next year we add a line saying, "Never send Shan to the Nurse Alone." Good addition for next year.

And then we found the aides. All hundled together in the copy room. I asked them if they had a minute to hear about Shan as she had recently been diagnosed with juvenile myoclonic epilepsy. Instantly the lunch aide said, "Is that why Shan wanders around the lunch room, even after she's told to sit down. She was always such a good girl but this year..." I told them yes, that it was seizure related. Another aide spoke up and said, "Why is she so nervous all the time now? She's picking at her clothes a lot." I explained that symptom. By the time we were done they were irate that the school hadn't informed them of any of this. However, the aides where extremely helpful to me because until this week I had been told repeatedly that Shan was behaving "normally" in school. That she wasn't having any seizures while at school. The fact that the aides came up with different symptoms than I had listed on the handout was really very informative to me. Yeah, Aides!!! Because I had NOT witnessed those symptoms myself I now have to call the Neurologist and update them as well.

All in all it was both good and frustrating and time consuming. We spent over an hour wandering the halls. But we talked to everyone!

On a good note, I finally got the school to agree to a staff wide training day during a Fall '08 Superintendent's Day by our local Epilepsy Foundation Educator!!! Yeah, me!

And on a weird note, yesterday 4 students with seizure disorders/Epilepsy went home due to seizure activity. Students were varied in age, grade level, and area of the school they were in. So do you think it was a coincidence, the weather? Makes me wonder....

Seizures at School

I got a phone call from the school nurse just abour 45 minutes before dismissal today. Shan was in there with a trembling leg. Okay. I asked to speak with her. Once she was on the phone I asked what was going on. She responded, "Well, um, I....Well, um, I....Well, um....Well...."

I said "It's okay honey. Let me talk to the nurse." When the nurse returned to the line she said, "That's odd she was just speaking so clearly about what was going on." Of course, I went to the school to get her. After getting home and waiting for Shan to have a functioning brain moment I questioned her about her day.

1st period~fine

2nd period~Teacher asked her a question. She knew the answer but couldn't get the words to come out right. So she stopped and tried again. Eventually, the teacher called someone else.

3rd period~She said the teacher sounded like the teacher from Charlie Brown. Far away and fuzzy and she couldn't understand the math.

4th period~Became enraged and slammed down her flute. 20 minutes later (at the end of class) she was disciplined and given a warning. If the behaviour happened again she would no longer be allowed to attend band.

5th period~lunch~ no incidents that Shan can remember

6th period~again no incidents that Shan can remember

7th period~Leg starts trembling

8th period~Finally goes to nurse for leg tremble, and of course I realize that she is having difficulty expressing her thoughts.

Am I over reacting or did the school miss like 4 warnings that she was having seizures? I don't think I would be this upset if I hadn't gone in there repeatedly and talked to them about what her seizures look like. The band teacher is the only one who I did not tell about the attitude being a seizure. I'm not sure why we didn't speak about it other than the photosensitivity seemed to be the biggest trigger in the band environment.

Needless to say, I am going back to the school tomorrow. I have asked for a 504 meeting but no one has called to schedule one so tomorrow I am going to go to the school and meet with the principal of the middle school to get things started. One way or another...

I am also going to take a written list of Shan's seizure symptoms (see photo below). And every teacher, aide, bus driver, lunch lady who has anything to do with Shan WILL receive a copy. I can't just continue to hope she is in a room where the person in charge IS aware. I NEED to know that I've done EVERYTHING I can to get everyone informed and on the same page.

Ambulatory EEG Removal & Insurance Update

We have returned from having the EEG removed. What a quick process that is in comparison to putting them on! However, Shan's poor head is very sore and she seems extremely tired today. We've kept her home from school again. This is getting to be a habit. Besides, she desperately needs a shower and her hair needs to be washed at least twice if not three times.

I still wonder if the EEG caught any of her seizures because in our opinion she had a very good weekend. We only saw three or four events. There is a lot of uncertainty when you're the parent of a child with Epilepsy. Is that one? What about that? Is the sun too bright? Is the TV flashing too much? And on and on it goes...

Shan obviously was very happy to get the EEG removed as she "hammed" it up for the camera! This was a short lived burst of energy which was quickly followed by a deep desire to go to sleep with a little bit of "Ow, my head hurts!"

When we finally got back home (hospital is an hour and a half away) I had a phone call on my answering machine from Blue Cross Blue Shield. My heart went into my throat but for once the news was good. They retro-activated her insurance to May 1st. YEAH!