just a rant

[joan]

I was afraid to post this anywhere as Id like my words not to come back to bite me but...
Why are some adults such losers? Why would any adult in their right mind fight with a child? Why would you knowingly fight with someone on meds, breaking down in tears and sobbing? WHY??

I dont expect any anwsers but murder still illegal here so.. UGHHHHHHHhhh

I hope everyone else having a great night*

joan*

[skillefer]

Sometimes adults get sucked into the power struggle...the need to be right...especially where a child is involved.

[joan]

My daughter had her first grand mal tonight... ughhhh.. I had so hoped the myoclonics would be the end of it but I knew it was a strong possibility. Always the optimist I had hoped... She is very upset. We went to the ER as it was her first and I wanted to be sure she was ok. SHe did much better than her brother does. SHe did mention to me that she has woken on her floor 2 times in the past few months. Im now wondering if they were grand mals... Im so numb tonight. We will be on contact her Dr on Monday and I will sleeping in her room JUST to be sure.
What a freakin winning week...

I hope everyone else had a good week..

joan*

[Bernard]

I hope the sun shines brighter tomorrow.

[brain]

((((((( HUGS )))))))))

You need it! Hope tomorrow is a better day!

[joan]

Morning and thanks * SHe slept thru the night uneventful and her floor? wasnt too bad.
I am good at so many thing but Im not good at everything. I had just gotten myself back on kilter and wham...I know it will all work out, its just getting there that takes times. It just seems that as soon as we adjust.. something new rears its ugly head. 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. I really hate to complain as I know many have it worse than we do. BUT while its happening.. it is the worst.
Last night we were making nachos, chili and quesdillas. My daughter, Jennifer had a little male friend coming to watch a movie. I know she was excited. Now shes petified he wont "like" her anymore. Good news is, he seems like a decent kid and will be coming over tonight. Bad news is HE will be eating dinner from last night lol
Again, thank you for giving me a place to vent.
Enjoy the day
joan*

[josieb]

Joan, I'm sorry to hear about your daughter's experience. It always seems like when we start to think things are going okay, something else comes along. I wish you and your family well. Sincerely, Josie

[joan]

ok, its monday. We made it thru the weekend uneventful. Actually we havent had any myoclonics since they gave her that shot on friday. She left for school at 6:45am and IM A WRECK!!! I keep telling myself she will be ok but Im so afraid. Im using cleaning as therapy but without having a "good" idea of what tiggers her Im just feeling fearful. I told her IF her myoclonocs start to please call and I will come get her. Its not so much having the grand mal at school that worries me so much, its WHERE will she have it? Walking down the stairs? at her metal desk? I cant wait for the Dr to call... We're going to invest in video sleep moniters? for both kids. AT least for a little while till we can be sure they are REALLY sleeping at night and not having issues. ANyone use them? This is some puzzle grrr....

The worst part is we recently purchased a new home we plan on retiring in. We had a new Master suite put on the first floor so we could kinda use the house as a ranch when we got older. SO the kids are now in upstairs bedrooms and we are on the first floor. Ive been sleeping on my daughter floor but Im thinking it just might pay to move back upstairs till things settle down here.


joan*

[joan]

Spoke to the nurse. She will speak to the Dr and get back to me. SHe said they will probably put Jennifer on another med as well as it will take her a while to get to 300 mg on the lamictal. Ohhh boyyy.. more fun to come*

joan*

[brain]

Will keep her in my thoughts and prayers that
things will turn around!

(((((( hugs )))))))

[stilldancing_98]

I don't get it. The arguing part. It makes me so angry. I don't get it. Alex, with his myoclonics, and being in a behavior class. The teachers, and kids constantly arguing with each other, it causes Alex to have more seizures.The roller coaster. I will pray hard for you. You are a good person. Teresa

[joan]

Thanks Guys **
Dr has decided not to put her on any other med. Said she should be upto speed with 300 mg of lamictal by mid Jan. He did give me clonazepam. He told me, in the meanwhile, IF her myoclonic got bad again, to give her one of those. If that didnt work an hour later try another. We're hoping that its only a few times till we upto speed with L. If I have to give her one of those pills, Ill keep her home to be safe.

She takes her 6 hrs behind wheel on fri and sat. Shes sooo excited just to even apply for her permit. (This is all deja vu as I went thru the same timing with my son) IF she doesnt have any myoclonics before then, were going to let her go. If her myoclonics start again? we will have to cancel. After that shot on Friday, she has had no myoclonics. This is the longest time without since they started. Im sure shes going to have to wait 6 mos extra for her license but I want her to know, at least, its on its way and its a possibility.

Her school is supportive and thank God she has a very nice circle of friends. SHe wants to join cross country and we are looking into it. Her father fought with her. Hes lacking in the empathy catagory. I did send him certified mail, stating if he didnt stop, I'd tar and feather him.. or something like that lol* All in all I guess its the best scenerio but.... her MRI came back normal. so.. EEGs normal, video EEG unclear and or inconclusive. Yet myoclonics for 2 years and now grand mals... She said shes not supposed to have grand mals phillip is.. UGHHHHHHH,,,,,

joan*

[stilldancing_98]

I hear you Joan. lol Big hugs to you all.

[tinasmom]

Joan - my prayers are with you and your family. Here are some things that we have done to put our minds at ease with our granddaughter. We bought a video baby monitor so we can hear and see her at night. We have a safety pillow also for her. We put a baby gate up at the top of the stairs. We decided to put up the gate after I found her one morning sleeping on the top landing, this was before we bought the monitor also. My granddaughter is 7 which makes it easier for us to have the monitor on her. It may seem like an invasion of privacy with your daughter because she is older. Maybe you could discuss these options with her and see what she says. It sure has put us at ease especially knowing that my daughter died in her sleep.

[stilldancing_98]

Noise is a factor in Alex's myo's.I was watching him at a B-day party. I was watching thru a window and he started crying. My neice started rubbing his back. I went in to see what was going on , he said he was twitching, that the noise was bothering him. I understand when it comes to looking for triggers. I'm just finding those out now. We had only a one bedroom apt. and so I watched him all the time for years. Plus Alex had breathing problems so it was a must.We have to do what we have to do. We brought these children into the world , I can't afford home monotoring devices so if Alex is clustering. He sleeps in my room. The docs know that.

[stilldancing_98]

Joan, I am praying for you. It is so hard. You are a strong person with so much love in you. Just be sure not to beat yourself up over this.There are so many days I just want to keep Alex home with me. I'm scared to send him to school. There must be a lot of angels with you. Teresa

[joan]

I am so sorry for your loss and so grateful for your kindness in sharing.

We've all discussed the cameras and were supposed to go to radio shack this weekend to look at a security camera we can watch/listen thru our PC. I want to watch/listen to them both to be sure they both sleeping soundly as we think. I told them they would only turn it on when they went to sleep and nope they arent thrilled but they are warming up to the idea.

When they were babies they always slept well and thru the night but I also had a ritual with them that I think settled them. We are working on them getting a ritual to help unwind and to make going to sleep easier. Turning on easy music, shower, reading and bed. No TV, phone or PC after 8pm. My son did take a sleep aide 2x and he hated it. Said it made him feel like he was never going to wake up. We also changed his mattress. He seems to be sleeping better now.

What is that pillow? Does it help?

Thanks again
joan*

[tinasmom]

We actually bought a video baby monitor at Wal-Mart. The site for the safety pillow is http://www.sleep-safe.co.uk/index.htm

We gives us peace of mind as Nicole throws up as she is coming out of her seizures.

[joan]

The video moniters from Walmart does the trick, thanks * we bought 2 so I can watch both. Now lets see if they turn them on : )

,,, so come take a ride on my roller coaster..

today my daughter tells me shes had an absence seizure. Yes, she did vaguely mention them along with the myclonics earlier on. Well tonight she says shes had another one. No myoclonic since the shot last Friday after the grand mal. Now an absence... this freaking thing seems like it keeps morphing... oiy...... Can absence seizure lead to a grand mal? Ive now learned that a grand mal doesnt mean its over as her myoclonic continued after the grand mal finished. What the heck is going on with my daughter???

She's babysitting down the block tonight from 6 - midnight :::shivers::: I asked her if she wanted to cancel and she said shes fine... Im a wreck...I figure Ill just call her every 15 minutes with some mudane chatter.

joan*

[tinasmom]

Is your daughter in her menstrual cycle right now? This can trigger seizures. I've read where people can start with one type of seizure and progress into another type. It's so hard being a mom and not worrying. I was always worried about my daughter when she moved out on her own. There were times when she didn't have a phone and I really worried that something would happen. We only lived about 6 blocks apart, but it still didn't stop me from worrying about her.

Do the people she babysits for know that she has seizures? If so, is there a child old enough to call for help if needed? You could possibly sit down with these people and come up with a plan in case she has a seizure. I know that some people have a huge fear regarding people that have seizures, this might be a good time for some education.