Update on Shan

[CJR]

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.

[Bernard]

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.

There are some non-medication alternatives. Perhaps when Shan gets older they can be explored.

[CJR]

I've been giving those options a lot of research. And indeed, we may end up doing that very thing but like you said...when she's a bit older.

[skillefer]

Oh CJR, I'm so sorry to hear about the runaround you've been going through. It's amazing how insurance companies love taking our money, but can't seem to pay it out correctly. I hope you and Shan are doing alright, and that the glasses help. I've heard that the blue lenses can actually cut seizure activity by up to 50%. One can hope.

[CJR]

That would be lovely! Especially since we're getting yet another day of thunder and lightning. Lightning is turning out to be her nemesis! We've closed all our curtains and still she has issues. I don't know what the school is going to do with her when a storm comes up and she's in class. So much to worry about...So little time.

[Loudmouth]

I have a big problem with both lightening and ambulance lights ( yeah, get the irony there!), and I live on a road that is the 5 min strethc between the main road in our county and the hospital. Have you tried putting blackout roller blinds up, or makign curtains from blackout material. You can buy it and it's been a godsend for me, I have the blinds in every room insted of nets.

[CJR]

I've purchased black out curtains for her room but not the entire house (they're sooo expensive that I'll have to buy them a little at a time). We were in Lowes the other day...the lights in there are awful to begin with but then the security system near the doors went off with noise and a strobe light. She had a seizure and her comprehension stayed low for the rest of the day. It's the same strobe light that they use during fire drills at her school which worries me night and day. We've noticed that some video games bother her (games with gunfire) but things like MarioKart, Spyro, etc. don't seem to. We're still learning what her triggers are.

[Loudmouth]

I know that in England, you can buy the material from the shops much cheaper, and run up the curtains on the machine yourself, or we have roller blinds made of blackout material VERY cheaply available? £10, don't know what the equivalent is, I got mine from Argos!

[skillefer]

If the strobelights at school can trigger it, then make sure that the school will allow her to wear her sunglasses at all times. And make sure that ALL of her teachers know that the strobelights can have that effect on her.

I can sympathize. I haven't been to any clubs, concerts, or anything with lighting effects since I found out I was photosensitive. There was an overhead light that was flickering in the hallway outside my classroom. The day after I had a grand mal in the hallway, I came back to find the light had been fixed.

[CJR]

Luckily, Shan hasn't had any tonic clonic/grand mal seizures due to photosensitivity. Her seizures tend to be myoclonic jerks and a severe drop in (how do I say this?) Mental Capacity? Often she is left in a "wandering, unable to comprehend" pattern for hours. Even if she manages to not wander away from class she certainly won't be learning anything in that state.

I have made the school very aware of her situation and will meet with the 504 team and all of her teachers on August 27th. They are saying all the right things to reassure me BUT I've seen how they "miss" her symptoms and tell me that everything is fine. So I don't feel that I can really trust them...yet. Maybe the middle school will handle this situation better than the elementary school did.

[tinasmom]

I would get a letter from the neurologist that states she has to wear her glasses at school. Since these glasses are medically necessary, they should not have a problem with it (I hope). I hope your meeting with the 504 team goes well on the 27th. The one thing that I found out about our middle and high schools is that they tend to let kids fall through the cracks. When my youngest daughter, who had an IEP, entered middle school, they let her fall through the cracks. I went to the school board to appeal her expulsion, that was a waste of my time. I even told them that they had let her fall through the cracks and one woman said to me that ever since she entered middle school, her grades starting going done. I told her that this was my worst fear and in my opinion they failed her and her needs.

[Meetz1064]

do begin to seriously affect her ability to learn, then the 504 plan can be changed to an IEP. This of course means that she would have access to special services, and that she would have to have the doctors involved, too. It is something to consider. You might ask for your doctor's input before you go into the meeting...

Take care,

Meetz

[RobinN]

Yes this happened to us as well. I finally after 4 months, decided to homeschool Rebecca through Middle School. I used an excellent accredited program with: www.LaurelSprings.com

How very frustrating that you can't get the seizures under control. I will pray that this month they are reduced in number.

[CJR]

Laura~Our neurologist is drafting that letter for me already. Great Minds... The letter will also include her seizure symptoms and how they might effect her education. Our neurologist is a bit of a bulldog when it comes to making sure the schools treat "her kids" fairly. Ain't that great!?! I love this doc!

Meetz~She is extremely bright so her grades really haven't shown any change since her seizures began. What's showed the biggest effect is how long it takes her to complete homework and her organizational abilities. The 504 we are setting up will be re-evaluated in 3 months to see if it needs to be upgraded to an IEP.

Robin~It is very frustrating that we can't get better seizure control. What is even more frustrating is the misconception that if you don't fall down with your seizures that they're not as serious. Someone actually said to me "After all, she looks normal so what's the problem?" UUUGGGHHH! I responded calmly by saying, "Think of it as having jumper cables attached to your brain. After the shock is over...how much learning do you think you'll be capable of?" I'm very leary of the whole middle school thing. I'll let you know how things go.

Thanks everyone for your help and your insights.

[Loudmouth]

What age would middle school be? My daughter is falling through the cracks in the education system, she has been on IEP for 6 years with no progress. I am considering Home Ed, I will be sending her to school for the first half term so that I can apply for secondary school, and to give the school one final chance to help her properly. If nothing reasonable is done, I will take her out of school for at least this next year and Home Ed her. She is 10 1/2.

[CJR]

My daughter is 11 and is heading into 6th grade. Middle school here consists of 6th, 7th, and 8th grades. It's also the time when the students stop having one main teacher and start rotating to seperate classrooms for each of their subjects.

It sounds like they are not enforcing her IEP properly. Do you have a copy of her IEP? If so, give it a good review and see if there are changes that you feel need to be made. Request a IEP review meeting and if you're the polite type (I feel your pain) then bring along another person to help bolster your position and your confidence. Ask Laura (Tinasmom), she can tell you that sometimes these schools really need a wake up call otherwise it's easier to ignore an issue than to deal with it. Good luck to you.

[tinasmom]

Loudmouth -
It definitely sounds like you need to set up a meeting to review the IEP and take an advocate with you. The IEP should be changed if she is not making progress. I don't know what the laws are in England, but here you can file a complaint against the school for not carrying through with the IEP. You definitely need to be outspoken and don't let them bully you.

[CJR]

Shan has had 3 days of really high seizure activity. The seizures are leaving her in a lowered state of awareness for hours! Her "wandering" has increased. So has her "Auto Pilot" when she's doing something without realizing what she's doing. It's really making me worry about her going back to school soon.

However, one of her absence seizures yesterday was actually a bit comical (that's an odd thing to say, isn't it!?!) Anyway, she was in the bathroom. When she came out I asked her if she was okay. "Yeah, Mom." Are you finished? "Yeah, Mom." Are you sure? "YEAH, MOM!" Then You might want to pull up your pants! She looked at me like I was nuts but when she checked she realized that her pants were not fully up, or buttoned, or zipped. Like I said it was kinda comical...because she was home. If this happened at school well...Not funny at all!

I've got a call into the neurologist's office. Hopefully, we can adjust something so that she gets some measure of control again. ~Sigh~

[Bernard]

She sounds like a teenager!

[speber]

I've heard that SO many times in my years. I think many times it was the case of doctors just taking an easy way out.

New drugs come around (this is of course a mixed bag of blessings and curses....but it is better than nothing for those who wish to continue drug therapy!).

Alternative therapies are gaining recognition as bonafide treatments for epilepsy everyday! This site is a GREAT wealth of knowledge for them.

I myself am going on 2 years seizure-free...
...and I give much credit to a change in lifestyle that concentrated on reducing stress and focusing on specific music that 'helped' me feel better.......but that's me!

Good luck!
Speber