Drat!

[RobinN]

I can almost be certain it isn't the school environment.

I am going to ask for a glucose tolerance test TT. I was just going by the blood test in the required comprehesive test they give occasionally. It was fine after the fasting test she took in Sept. It has been in 80 - 98 range. Though I was just looking over an old test, taken a year ago. About two weeks after her first seizure, and it was Low at 40. That one was done fasting as well, though no one suggested that this might be looked into further. After another seizure, a test came through at 104. I just presumed that seizures had a way of changing those results, and that was to be expected)

I think she does graze most of the day. I don't eat red meat, don't cook red meat, so she has it sparingly. If she has a problem at all, it would be too many carbs, too many sugars (although now natural), and not enough veggies nor a variety of fruits.

We are working on her drinking water. So perhaps the build up of her supplements that she takes prior to going to school is too much for her system, without enough liquid....?
Zoe mention, maybe not enough stomach acid.. how does one know ?

 

[brain]

Robin:

My son has Chron's Disease, but he
also suffers from Absence. Is it possible
Rebecca may be suffering from Chron's?
It's a lot more common than you think!

 

[Bee91]

Allow me to throw this at you.


Is it about the same time of day?

A lot of mine happen the same time of day not all of the time, but some times that is the case....I have always been wondering why...? Could you possibly explain why people have them at around the same time...? Around 1 PM I have mine about 2 hours after lunch(but I usually don't eat and haven't eaten anything all day--that could be my problem right there..) And I take my meds about 7 AM...could it also be a drop in medication levels or something like that...?

 

[brain]

And I take my meds about 7 AM...could it also be a drop in medication levels or something like that...?

Yes you are correct; Some medications have
"humps" ~ where there are highs and lows
(think of high tides and low tides), so they are
not "leveled" straight through - and the newer
"extended release" formula capsules are supposed
to eliminate those "humps" to make the medication
more leveled.

So that is a possibility factor right there. Thanks
for bringing that up, I didn't think about that.

 

[RobinN]

Dog gone it! (is that how you say it?) tryin' not to swear here folks...

She had another one tonight. 2 minutes @ the ice rink. Luckily she got off the ice and sat down. Told someone she didn't feel well. So there is a "feeling" before hand.

Back at square one...

 

[Bernard]

Robin, a little over ten years ago, Stacy was able to achieve complete seizure control with just diet, regular sleep and EEG neurofeedback.

However, her seizure activity returned and got worse with each successive pregnancy. She was not able to stabilize herself or achieve seizure control with just diet or EEG neurofeedback alone after that (well, we didn't get the chance to really test the neurofeedback the second time as the certified practitioner left to pursue a Master's degree). At any rate, it took an AED (Dilantin) to finally get her stabilized and stop the seizures.

I'm about as gung-ho as you will find when it comes to trying alternatives, but I do believe that AEDs are sometimes a necessary evil.

 

[RobinN]

I hear what you are saying Bernard, and many times I am right there with you. However, the side effects.... I just don't know if they are something that either she or I can live with.

When I have raised this recent one by even 75mg, I see an increase in seizures (six the month that we started this last med and increased it twice. No other month has ever had that many), and she is so tired she is sleeping through class. It is hard enough to keep her grades up as it is. The low mood swings are another. The thought that you own child would even think that life wasn't worth it is heart wrenching, and difficult to monitor as a parent. The muscle pain of another one, kept her from even being able to raise her head.

How do you even have a logical conversation with a neuro about this unless you have some personal stats from month to month to bear witness on the fact that you are seeing what you are seeing. So then you go from month to month, experimenting with what works and what obviously doesn't.

I then hear of bone fractures due to these drugs, and here is a child that is relying on her body to be there for her. Her passion since she was a toddler was to be able to express herself through movement. Do I allow it all to be taken it away from her with a drug?

I attempted to make a chart last night to see how the activity has played out over the year. Her one month seizure free, was not on any medication. I had increased her magnesium to 1000mg to see if that would help a chronic constipation problem she has had her whole life. It did the trick.... However I backed down and went back to the RDA and her problems have returned. I gather that I perhaps should take her to see a gastroenterologist, to help me sort out why her body is having difficulty in this regard.
I have read that it can cause symptoms such as hers....

I am trying to monitor a child, that from time to time just truly doesn't care any more. I guess that would be a good thing to add to my chart... emotional health.

Sorry... it is hard to stay positive.

After the holidays I am going to make a move toward neurofeedback. I hope my other half won't fight this choice.

 

[angel]

Robin,

maybe, you need to take a break.... try to relax... I'm quite sure she can feel your stress.. WE ALL get moody from time to time and feel like giving up I think at least i do.... maybe back off on experimenting so much with her diet... just have her eat healthy... she may need an emotional break from thinking about her epilepsy every day..... hell, if i sit here everyday thinking about it it drives me batty .... its just my opinion... I see how much you love her.... your going to drive yourself nuts trying to figure out something the doctors even have trouble figuring out.... im not saying stop what your doing to help her Im saying take a break.... it sounds like you both need one....

ps you can slap me if you want to " cringes "

I almost died when i was little and had a dad like you my mom was also until she just gave up..... life still went on.... all the bills all the stress my parents have gone through still effects me to this day because i had to watch them and was dealing with health problems at the same time...... its hard for me to explain i guess..... I started feeling my parents fighting over my health and bills etc was all my fault... which caused me a lot more stress that was never talked about.....

love and hugs to your family

angel

 

[RobinN]

Thanks Angel... I appreciate the hugs.
I doubt the school would appreciate it if I were to take a break from it.
I understand what you are saying, and I really don't let on to her what I am actually feeling. I only do it in silence here. I keep all my positives for her. Except when she is being a bratty teen. Which is rare.

I do hear you on the mom/dad issues and will run a check to make sure that this isn't causing more problems. Always good to monitor that side of the coin. Thanks
She is back to having therapy which is a good balance for her. Insurance threw a wrench in that one.

Well off to take her to school and me to volunteer....

 

[speber]

You're awesome Robin.....

Rebecca is in great hands...none better....don't forget that.
However, even with that said I can say epilepsy is such an enigmatic affliction that you must just be ready for times like this.
My guess is your efforts have kept Rebecca from having a MUCH WORSE time of it so far....and you should take much solace in that.
Consider this another day, next chapter, whatever you want to call it, and plod on.......you can do it.

You're a very strong person with a kind soul and a good head on your shoulders....remember to take care of yourself as well.

Sending good thoughts to you and yours!
:flowers:

 

[angel]

Thanks Angel... I appreciate the hugs.
I doubt the school would appreciate it if I were to take a break from it.
I understand what you are saying, and I really don't let on to her what I am actually feeling. I only do it in silence here. I keep all my positives for her. Except when she is being a bratty teen. Which is rare.

I do hear you on the mom/dad issues and will run a check to make sure that this isn't causing more problems. Always good to monitor that side of the coin. Thanks
She is back to having therapy which is a good balance for her. Insurance threw a wrench in that one.

Well off to take her to school and me to volunteer....

Good therapy is always a good idea.... I wasnt in therapy for depression with e when i was 13 I took a whole bottle of phenobarbital.... at the time i dont remember much other than my dad carrying me over his shoulder then everything went dark ... woke up in hospital they did something i cant remember and also i had to drink this black stuff after i woke up that made me sick.... the problem was i felt like i was causing all my parents problems they would talk in the room and being a teen i was sneaky and could hear them crying and arguing and hurting because of money and my health problems..... after that i went to counseling which helped..... I over heard one of my parents saying out of frustration If it wasn't for all her medical bills we wouldn't be losing everything i took it the wrong way..."being only 13" never talked to anyone about it and just tried to kill myself..... im 38 now... but as a teen felt every problem my parents had was my fault.. even though now i know it wasn't...." kids can hear every thing you talk about they are sneaky"
so it good to have your kids with epilepsy in some sort of talk therapy as sometimes they hear parents and take it the wrong way..... not saying all would react like i did just stating a fact of life.....

love angel

 

[angel]

Rebecca is in great hands...none better....don't forget that.
However, even with that said I can say epilepsy is such an enigmatic affliction that you must just be ready for times like this.
My guess is your efforts have kept Rebecca from having a MUCH WORSE time of it so far....and you should take much solace in that.
Consider this another day, next chapter, whatever you want to call it, and plod on.......you can do it.

You're a very strong person with a kind soul and a good head on your shoulders....remember to take care of yourself as well.

Sending good thoughts to you and yours!
:flowers:

:agree:

 

[RobinN]

Thanks you two... I needed that cuz I just got an earful at her school.
When I asked for compassion instead of hostility, I was told they didn't have time for that.
Brother!

 

[speber]

Ouch!...sorry to hear that one Robin.....

...let it roll off as much as you can I guess. Sounds like they aren't worth too much of you and Rebecca's time to me. Be strong.

Hopefully tomorrow's a better day!
:rock:

 

[brain]

 

[RobinN]

...let it roll off as much as you can I guess. Sounds like they aren't worth too much of you and Rebecca's time to me. Be strong.

Problem is they are considering putting an aid with her again.
Guess she ran out of her dance class to go get her leotard in her locker. Told some of her classmates where she was going, but the teacher wasn't around.. and she was found in the hallway. Got everybody worked up. I was more put off by their hostility than anything else.

Hopefully tomorrow's a better day!
:rock:

Yes it was... we shopped... and she is at the Winter Formal tonight.... looking gorgeous.

 

[speber]

Good deal!......

....out with the bad vibes......in with the good vibes!

corny--but it works sometimes!
:rock:

 

[RobinN]

That it does Spencer.

After talking with her neuro today, she wants Rebecca off this fourth med.
She didn't even know about the increased risk of rash, fever, etc put out by the FDA.
She has had a fever and a sore throat the past few days, after itching spell last week.

Told her the one month without seizures I noticed that magnesium was up at 1000mg.
She said she would recommend that I do that again. That's easy to try.

 

[RobinN]

We were doing well, and today Rebecca woke up with a headache. She was just feeling rather punky in the morning, but she will not stay home if at all possible. So I dropped her off and it wasn't even 30 min she had a seizure in her homeroom. I think I heard it lasted about 2 min. She went to tell the teacher that she didn't feel good, and went down.

The police officer on the campus ordered the EMT's to come. The office manager that I work with and I trust her with Rebecca's care, couldn't talk the officer out of calling 911.
LIABILITY.... oh well, these guy are great. I know what to say, they know me, and that I am not a flaky parent. But they are required to call the hospital and get an okay, and then you have to sign your life away... "Including DEATH" .... I understand guys.

She got some oxygen, a great look over, a bit of a rest, and the kids that were suppose to be in the Class learning Calculus had a nice break for the period.

Diet: hmmm sherbet on a cone last night with dad (not a big supporter), and a banana for breakfast. You know.. I also snuck some regular soy sauce in my stirfry dish last night. MSG again.. and what was in that ice cream. Not sure if there is an allergic reaction to this stuff, but it seems to pop up each and every time she has a seizure.
Trying to make connections that fit here.

 

[Bernard]

When is it that teenagers learn they aren't invincible?