The Twilight Zone

[CJR]

Let me start by saying, "I'm SORRY!" No, I haven't fallen off the face of the earth...I've just fallen into the Twilight Zone! LOL. I guess I didn't realize how long it's been since I've popped in for a visit here. But now, I realize how much I've missed it!

I'll try to catch up on Shan's story some. She was diagnosed in Feb of '08. We spent the day after her 1 year anniversary at the ER yet again. I think this was our 5th trip with her. Before E she had NEVER been to the ER. Now, unfortunately, it doesn't even faze her. We have started Keppra XR and then reduced it due to severe agitation and then added Depakote ER back on. That is her current cocktail.

However, the Neuro told us that she is not controlled with this level of drugs. So my nearly 12 year old daughter said this to the Neuro, "I've been living with seizures all of my life without knowing it. What I did know was that I was flakey and different but that I was happy. I don't want to take higher doses of these meds because then I can't be happy. What is the point of full and total seizure control now, anyways? I can't drive a car...I'm a kid. Besides, with my hormones all out of whack because of puberty we aren't gonna get control right now, are we?" (proud mama moment::rock The Neuro took a look at me and said, "How do you fight with her?" I answered, "I don't! I listen to her...She makes good points and she knows what she can handle better than I do." So the Neuro was convinced to let Shan call the shots...for now.

Now, if only I could convince the school that Shan and I know more about what she needs to be successful than they do. She has yet another 504 meeting tomorrow in which their personal physician consultant will give us a classroom evaluation of Shan's needs. I would like to believe that this will lead to better management of Shan's case (after all, it can't get much worse) but I have a sneaky suspicion that they're going to use this consultant to reduce their responsibility and/or the services that they offer Shan.

 

[epileric]

"I've been living with seizures all of my life without knowing it. What I did know was that I was flakey and different but that I was happy. I don't want to take higher doses of these meds because then I can't be happy. What is the point of full and total seizure control now, anyways? I can't drive a car...I'm a kid. Besides, with my hormones all out of whack because of puberty we aren't gonna get control right now, are we?" (proud mama moment::rock The Neuro took a look at me and said, "How do you fight with her?" I answered, "I don't! I listen to her...She makes good points and she knows what she can handle better than I do." So the Neuro was convinced to let Shan call the shots...for now.

You go girl.:rock: I wish I'd said that to my neurologist when I was her age! It's so great that her happiness doesn't depend on seizures or no seizures but on quality of life.

 

[flinnigan]

What a great kid, you're right to be so proud. I agree why live all drugged up, I can't wait to get off them. I like what she said about being different :rock:, I always liked that too.

 

[RobinN]

Wonderful response. I am very proud of her.
Now to convince the school. You go in there with the same confidence. Not with the aim to bully. They are experts in their field, but you are the expert when it comes to your daughter and her needs. Remember you have rights where your daughters education is concerned. This is only one "expert" and only observing on one day in a life. Not very convincing to me. Three months is a long time in a childs life, and in the life of E.

As I have worked to heal my daughter from the inside out, her life it improving each week. Keep up the fight.

 

[CJR]

I'm just back from the meeting with the school. The Physician consultant observed Shan and then spoke with her privately for a few minutes before the start of the meeting. I was fully prepared to "fight" the consultant every step of the way. If they tried to remove any of the services they offered to Shan I had a practiced response at the ready..."It was my impression that this consultant had been brought in to help optimize the services offered to Shan not to remove any of those services. Since that seems to be the case I would like a full Psycho-Educational Evaluation." Boy, was I ready...Until...

The Dr. was fantastic!!! Completely on our side, saying that she does not believe that more or different medication would control Shan's seizures during her academic career because of puberty/hormones/etc. Repeating often that Shan's inability to stay organized is NOT a shortcoming that can be rectified with continous "teaching". That all efforts by the school to reduce stress to Shan by e-mailing me re: late homework is not only preferred but mandatory! (I think I'm in LOVE with this Doctor!) She also suggested that the school mail copies of all upcoming events/notices home instead of relying on Shan to act as a courier. Something I had never even thought of. She even said that they begin preparing for a seizure/assist dog because Shan may require that assistance before the end of high school! She was FANTASTIC!!!

I'm so happy I can't stop smiling. Boy, did that Doc really give it to them. :wave:

Robin~Every time I face the school I try to remember that I'm not just doing it for Shan but for several other younger students who have Epilepsy/Seizure Disorders and I know that they will need this type of assistance too. It keeps me sane when I want to go off the deep end.

Flinnigan & Epileric~You won't find a Mom more proud of their kid than I am. She astounds me with her outlook sometimes.

 

[flinnigan]

Isn't it sad when we're so shocked when a Dr or school does the right thing. We've all become used to not getting what we need. Congrats.

 

[skillefer]

Congratulations! See, miracles dooo happen...

 

[RobinN]

Wonderful news!
Shan is also old enough to read some of the books on aternatives for seizure control.

 

[CJR]

Flinnigan~It is SAD but true that most times the school and/or doctors don't actually meet our most basic needs much less anything more. That's why I was so surprised that both happened on the same day!

Skillefer~You said it! It's a School Day MIRACLE!

Robin~Shan is planning on doing some reading over the summer. She told the doc today that school is about studying for grades. Summer is about studying for life. (Sorry...another proud Mama moment: :rock

 

[Bernard]

:woot:

 

[Kansas Educator]

That is awesome and you should be proud of your daughter! She's not my daughter and I'm even proud of her! And, as an educator, I'm proud of the school system for doing the right thing because, unfortunately, I have to agree with many of you that it doesn't always happen. I think that taking charge of our own health is something we all need to do.

 

[darcness]

This was a very uplifting read. So glad that your daughter is such a wonderful and strong person already. Maybe sometimes we're so busy hating E that we don't realize it can bring out some good things. I'm sure you taught your daughter well and that's why she is such a strong person, so give yourself credit too. Sounds like things went great for you at the docs and at the school. So happy for you.

You should take your daughter out for a nice lunch or to something she wants to do. Just the two of you. Then tell her how proud you are of her. Sounds like she deserves it.

:rock:

 

[CJR]

Thank you so much! I feel very blessed to have her for a daughter. She keeps us all sane sometimes. Not to say that she doesn't have angry days...they are rare but they do come around occassionally. Usually her bad days involve an hour or so of "this isn't fair" followed by and hour or two of "leave me alone so I can watch a movie" then the popcorn and the chocolate milkshake kick in and she's back to "it could be worse". I don't know where she gets it from but I couldn't be more proud!

My E hating days usually are more like, "how can the insurance company say no?" followed by "don't the docs know that we're 55 minutes from the hospital?" with a few minutes of, "of course, she's behind on her school work, she was out for two days because of her seizures!" Once all that passes...popcorn and a chocolate milkshake usually gets me back on track too!op:

 

[flinnigan]

Chocolate anything fixes all things in life now doesn't it.