just a rant

[joan]

Shes one week past her cycle. Im sooo on her cycle looking for a pattern but everytime I think I have one it freaking morphs into something else. We will figure it all..

The folks know. JEnnifer just turned 16 and the kids just love her. The kids are 10 & 8 and know what to do. Plus we are less than 6 houses away. Im realllllly fast these days lol* Im also loaded to the gills with meds. SOoooo... we all figured to leave things as :normal: as possible, to try and see how it went. Naturally, if it goes badly, she will have to cancel until she has better control.

SHe did get her permit today which made her happy but we arent going to let her drive yet as she mentioned having an absence seizure today ughhh.... SHes running the gamut.

Im probably a worrier to begin with. Just my nature to be a natural fixer. Its a good thing and a bad thing lol

Thank you for your thoughts and your concern. I hope all well in your home tonight *
joan*

[brain]

Are her cycles predictable or irregular?

I am very irregular, and the longer I go
without a cycle, the higher my seizure
threshold would be! But of course now,
I've got this menopause here to deal with.



If you would click on the Epilepsy Foundation
Logo below, and call the number, and inquire
about info on Catamenial Epilepsy, and let them
know regarding your daughter's age - they might
be able to be more specific further assistance,
especially as far as how to confront these to
the Doctors more properly and how to monitor,
and so on. Hope all of this helps, as they are
far more defined in this area.

[joan]

Dear Sharon, thank you * I just wanted to say you are an inspiration. You are always so kind and generous in sharing your knowledge. Thank you *

Her time of the month definitly plays into this. SO far I know that week THE WORST after that, each week seems to get a little better till the 4 week and then its starts all over. She says shes not regular. But I think she wants it the same date and time each month lol I think shes really pretty regular for a 16 yo. Around the 5 to the 7th, it seems. And yup.. that the worst time. Im going to look into Catamenial Epilepsy. Hormones have to play a large role in this with my kids or else why would it only show up in puberty? Thanks for helping me add another piece to this 1,000,000,000 piece puzzle.

I hope you and yours enjoy your day
joan*

[BuckeyeFan]

My son found my daughter last night. Actually we heard her and knew there was a problem. He got to her about 30 seconds before I did. HE did great. Got her on the floor, made sure her air passage was clear and just told her it was ok. Then I watched my 19 yo cry like a baby. I swear I cant remember him ever crying like this. You almost dont know who to tend to first.

Seeing a seizure is not easy for anyone and we here have discussed in the past what it is like to witness one versus being passed out. Many do not ever want to see themselves seizing. In your sons case, it may have been even worse, seeing his little sister going through one.

I used to be an EMT and though I never had trouble treating patients with seizures, I always had that extra empathy for them and would think about it more afterwards.

This is a tough time and you have all of our support here. Please make your time here at CWE a time to recharge as well. YOU need to take care of YOU so a little laughter and relaxing has to be included.

[KellyD]

It is hard to watch someone you love having a seizure knowing someone who loves you watches you do the same thing. After my son's first seizure I apologised to my husband because I suddenly understood what he would have been feeling when I had my grand mal. I know I have nothing to be sorry for but I felt bad that I put him through that kind of worry.

[joan]

ok everyone put on your thinking caps I need help figuring this out.

My son only has grand mals, that I know of. They last 5 - 15 minutes. You can tell when hes had one as he sleeps 24 hrs and is still kinda slow on recovery. After 48 hr hours hes back to regular.

2-3 times in the last few months when I go to give him his morning meds. Ive found him asleep and that he has throw up on the side of the bed (sorry) when I woke him he seems ok and says hes fine and just got sick. This from a kid whose never missed the bucket or the bowl before. I find this odd. I found this this morning and hes slept the whole day. He doesnt seem as out of it as he normally does when he has a grand mal, BUT he doesnt seem right? Anyone have any clue?

joan*

PS Kelly I just want to hug and squeeze your son What a sweetie!! I LOVE BABIES!!

[KellyD]

Maybe he is having shorter ones in his sleep which is why the recovery time seems less?

I will give him a big hug and squeeze for you!

[joan]

Ive been suspious of him sleeping recently as some mornings he seems wayyy too tired after sleeping 10 - 15 hrs... I know better than to rush him in the mornings. Do night time grand mals tend to be mildier? Is he morphing too? The next few weeks we have OT evalution, allergy testing and the Therapy from the nuero... Im calling the DR tomo to alert him and maybe he will have some idea..

Good news... he was getting a new rug but now me thinks Ill wait a bit and see how it goes : ) oh and Ive added a "special" bucket to "that" side of the bed, just in case!!!

Thanks
joan*

[RobinN]

Has he changed his diet in any way, Joan? I see that you have allergy testing on your list, but do you have any intuitive feeling that what he has consumed could be aggravating his system?

[joan]

No. His diet hasnt been great as hes never hungry anymore and I have to remind him to eat. Phillip?? Its 2:00. Have you eaten today? No Mom, Im not hungry. I make a sandwich, add a yogart maybe an applesauce, glass of milk and he eats it all. I think it may have to do with the lamictal.. or maybe just from the E? Im trying to teach him to watch a clock. ANd to know the times he has to eat.
Hes not a junk food eater so when he eats he eats well. The only clue I have or had was 5 years ago I was told he "may be" gluten intolerant. Thats why I figured to just test to cut to the chase, deal with it and move on. Im so confused these days, I write myself notes! lol..

We did have alot of laughs today. SOoo many I cried. The 16 yo got her permit and reminded us she now had 6 hours of driving!!! so we thought to let her drive us around a bit after she bragged how good she did and what a natural she was. That the instructor said she did much better than most. we went around the block and back in the driveway... she S*CKED!!! Im getting too old for this* lol*

joan*

[RobinN]

I might have mentioned this to you before so ignore if that is so.
You can test for celiac and the test can be negative and yet you can be sensitive which would cause issues. For me the best test has been to remove it from the diet.

I can not admit that Rebecca has eliminated gluten and casein 100%. Her dad does not buy the "idea". Continues the mantra all in moderation. So this sets up a tug of war of sorts. Luckily I monitor most of the meals so she is certainly eating a lot better than she was before.

It doesn't have to be junk food. It is wheat products...even good organic whole wheat. It is dairy... all those yummy healthy cheeses. Soy products, which ruled out most chinese food, unless I make it, and then no soy sauce. You can go healthy, and still find genetically modified corn in the ingredients. It can say natural flavorings, and that is a huge red flag for MSG.

I have learned that some of these products can actually cause the hormonal imbalances that we are seeing in our teens.

Both my boys waited until they were 18 before they got their license. Rebecca is hoping she will be able to next year too. I am ready to put a down payment on a Segway though.

[joan]

Thanks, the celiac is what made me curious. Ive been doing a little research and from what I can gather allergies rated a 0 - 4. I plan on removing anything above a 1 then after time start re-introducing the 2s. Avoiding the 3s and 4s. I think thats how it goes. I dont think he has celiac but I do think he has issues I can solve.

Theres a thing called syndrome X. Its when a body cant breakdown carbs in the proper way. I have a sneaky feeling that may be his issue along with whatever allergies we find.

Thanks again
joan*

[RobinN]

Have you considered looking into the modified atkins diet?
I just joined the yahoo group... (we have one here too), but there is a lot of information on the yahoo pages that are new to me. I am still trying to digest the info.

[joan]

Once I get the allergy results Ill be better able to make a good decision but I was looking at that Low Glycemic Index Treatment (LGIT) as well as the modified atkins.

My son seems fine tonight. He looks a bit tired but is eating well and seems ok.

joan*

[alivenwell]

Does your son's appetite depend upon when he smells food? My appetite isn't always stimulated until I smell food. Just curious.

[joan]

Good question, I will have to ask him. Ill get back to you tomorrow.

joan*

[brain]

I'm watching this thread and keeping
everyone in my thoughts!

[joan]

hiya * He said IF he smells food, something he likes, he gets hungry then. Its what makes him think of it. Hes said he thinks this started with the lamictal, slowly, and he didnt notice it before.

My daughter had a tiny lil myoclonic today. I guess the shot wearing off. We move upto 175 mg lamictal Thursday and Im keeping my fingers, eyes, toes crossed.

Ohhh good news, my son got medical alert dog tags. SO im very happy about that BUT he put his cell number on it ughhhh..... little by little...

Hope everyone had a good day today
joan*

[joan]

Rather than start new vents, I thought to stay with the one : ) Maybe it will seem like I complain less lol

My xhusband has a very small family and is not close to his family. The only other E folk I know is his first cousin. I ask the sperm donor to call his cousin to see where, how his cousin got E, to see if it has any bearing on our kids, aka HIS KIDS : ) He thinks it a better idea I call his cousin. Naturally, he would, less for him to do. grrrrr Either way I spoke to the cousin and it really doesn't help us. He got E after surgery as a kid where something happened with the anesthesia. sooo... no luck there. He did tell me one of his grandmas side of the family had some kind of E but no one alive that knows which one. SO 50/50 chance its the grandma they share. I guess it really doesn't matter as nothing changes for my kids but I had hoped to solve the mystery. I have resigned to the fact that I will never know how or where they got this and I guess, in reality, it doesn't matter. Its here and we'd better all deal with it.

On the bright side, I got in touch with a few Drs from that Phenome/Genome Project. Because my daughters EEGs and MRI come back normal we can not participate in the study but I figured, this would be the group who may be best suited for my kids. 2 have gotten back to me and said they'd be happy to see my kids and see if there is anything else we can figure out or do to help my kids. So, I'm very hopeful to be headed in the direction of an epileptologist who is upto date and researching genetic E. Its a step in the right direction.

I do think, at least with genetic E, probably with most E, the whole body has to be dealt with, not just the brain. That's such a limited thought. Drs have to expand their minds to understand how other body parts working well hurt/help those with E.

In 2006 when my son was diagnosed, I just thought ok Ill get him to take the meds 2x a day and life will continue as "normal" for us. We tried to minimize his E and continue to push him to do his best. When my daughter started having issues in 2008, it really just took the wind out of my sails. I couldn't ignore the fact that this was going to make a bigger impact than I was giving it credit for. Then other things started making sense, other lil nuances were acknowledged. I was semi cationic for 2 weeks (not a normal state for me at all) before I could move to go forward. Since then I've decided to pull up my boots, grab the bull by the horns and dig deep.

I've changed the last few years and I'm hopeful for 2009* Along the way I've also met folks, I probably would never have run into otherwise. They have all made the journey, easier, less scary and helped me make sense of all this, thank you all *

joan*

[RobinN]

Could be something as "simple" as celiac. Remove all gluten for 6 months and you will have your answer. Personally I would also remove casein too.

Just a suggestion.
I know you want to wait for test results, but many times that does not show the results needed.