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piratesmate
01-18-2008, 05:12 PM
I haven't been online for a few days because my computer was unplugged. Can you say WITHDRAWAL?!?!? :rotfl2:

I'm in the midst of attempting to pack up my desk and scrap area so the landlord can fix a wall, paint & replace our carpet. Our living room opens into the dining room so both rooms must be done at the same time. The neighbor who shares the house is moving out & we have to pack up both rooms & move them to the other side. (This is an old farmhouse with doors between the 2 sides that we just keep locked.)

Anyway I've gotten far enough now that I can at least plug the computer back in for a few days.

But I'll be gone again the beginning of next week. DD will be at the hospital all day trying a new (to her) treatment for these migraines. (She's had the current one since Sept '06!)

We'll be home at night, but I don't know if I'll get here or not. We have to be at the hospital by 8am, which means leaving here by 6 due to rush hour traffic. Then she'll be sent home around 3:30 or 4, which puts us in rush hour again. I'm thinking we'll all be pretty shot by the time we get back here.

So have fun while I'm gone! :teeth:

TPCShauna
01-18-2008, 05:30 PM
Good luck with DD's treatment. I hope they are finally successful for her!

PrincessNancy96
01-18-2008, 05:47 PM
Good luck with DD's treatments.. I hope they go well and she gets some relieve!!!

We'll behave... Buffy has that naughty mat ready to go at a moments notice and you know we don't let anything collect cob-webs around here! LOL

Lisa
01-18-2008, 08:08 PM
Your poor daughter. Hopefully her procedure will ease the pain.

Our thoughts will be with you both.:hug:

rlovew
01-18-2008, 08:15 PM
I hope the procedure works!!

Rebecca

aroyer
01-18-2008, 08:31 PM
I hope your DD finds relief. And as PN96 said, BAMB will keep us in line with the naughty mat!

mommy2mrb
01-18-2008, 11:42 PM
:hug: :wizard: coming your way, hope they can finally help your DD.

AlexWyattMommy
01-19-2008, 10:53 AM
:pixiedust: for your DD's treatments.

Twigs
01-19-2008, 12:50 PM
Good Luck with your DD, She deserves some relief, hopefully this time will help!!

lewdyan1
01-19-2008, 01:12 PM
Deb, we do miss you!:goodvibes

:wizard: :wizard: I hope they find the right treatment for her!:wizard: :wizard:

party of 3
01-19-2008, 07:41 PM
good luck with everything deb. we will be thinking about all of you.
:grouphug: :flower3:

New England Eeyore
01-19-2008, 08:49 PM
Prayers and pixie dust that the treatment is a success! :wizard: :grouphug:

piratesmate
01-21-2008, 08:03 PM
Thanks everyone! Today was a real killer. :(

The short version is:
- up at 5:45 (OMG! :rolleyes:)
- sat in horrendous traffic (accident 2 hrs earlier closed the road)
- waited a REALLY long time for the doctor (meeting) in a room with new carpets (I'm allergic to carpet dyes & glue)
- had DD crying because they used DHE (had it before & it did nothing but makes her feel AWFUL!) & they wouldn't let me in with her but gave her no warning - went over like a lead balloon
- froze in the waiting room, sitting in the most uncomfortable chairs ever!
- sat through another traffic jam on the way home
- got home at 6, did dinner, stopped in here & now am ready for bed

All of that & poor DD got no relief whatsoever despite a cocktail of at least 4 different drugs. Tomorrow AM they'll review what she had & tweak it. She's already told me she's going to tell him "No DHE!" but I can't imagine that's going to fly with him. :headache:

And the best part is we get to do it all again Tues & Weds! And joy of joys, traffic will be worse because it won't be a holiday. *sigh* :rolleyes:

Lisa
01-22-2008, 06:09 PM
Deb, I am sorry to hear that. Your poor daughter, and poor you. As a mom, I know you would rather be going thru what she is going thru instead of it being her.

How did today go?:hug:

piratesmate
01-22-2008, 07:17 PM
Hi - we just got back about 15 minutes ago.

The good news is:
- At one point today DD's pain level was only a 2 out of 10! :teeth:
- They skipped the DHE today after she burst into tears & told the doctor "I can't do it again. It hits me too hard. Isn't there ANY thing else you can use?" The doctor looked nonplussed for a second & went to talk to his supervisor. They replaced it with a steroid & Depacote.

The bad news:
- She had a reaction to something, but they don't know what. We're so late getting home because her blood pressure dropped, her heart rate went up & she was severely dizzy...of course this was only AFTER they'd removed the IV line. After talking to the doctor, the had to reset the line & gave her fluids. So we had to wait until they'd pushed through another bag of fluid - she was NOT a happy camped! She was desparate to leave by that time.

And all of that made the pain go back up to a 5 again. Of course that's better than the 10 it was at yesterday.

So we got back one more time and hopefully they can make some adjustments to the meds & have the relief last! :thumbsup2

rlovew
01-22-2008, 07:30 PM
I hope they can make the final adjustments. I know what it is like to have a child with severe headaches and it is not easy for anyone.

Rebecca

aroyer
01-22-2008, 08:04 PM
My heart goes out to you and your DD! It is not fun having a child in pain! I pray they can find relief for her.

party of 3
01-23-2008, 07:22 AM
i'm so sorry she has to go through all this. it's just not fair. here's hoping they figure out how to take her out of pain soon.
sending lots of love,hugs, prayers and pixie dust right your way.
:love: :hug: :grouphug: :wizard:

TPCShauna
01-23-2008, 10:19 AM
So glad to hear that they sound closer to finding something that will work but so sorry about the reaction. I so hope that they will be able to figure out what to do for her pain. I am praying for both of you for resolution. :hug:

Lisa
01-23-2008, 05:16 PM
Oh, Deb, what an ordeal for both of you. I wish we could ease your stress some. Unfortunately, I can only send more cyberhugs.:hug:

piratesmate
01-23-2008, 07:36 PM
Thanks everyone! :grouphug: Your kind thoughts & cyberhugs have really helped get us through a rough couple days here.

Today really was the best day so far - at least as far as the drugs & traffic were concerned. For some reason they didn't give her the Depakote, but I didn't realize it in time to ask the doctor why. He did give her some caffeine just to see if it would help. She had no reactions to anything today and no nausea. She was even able to eat the tuna sandwich they brought her.

The best her pain was today was a 3, but it's already crept back up to a 5. Even when they're able to knock it back, the relief doesn't seem to last. :confused3

They wanted to see her again in 3 weeks, but that puts us right at the beginning of 2 weeks of mandatory state testing so we won't go back now for 5 weeks.

AlexWyattMommy
01-23-2008, 07:49 PM
I can not imagine living with that kind of pain everyday.
I can not imagine watching someone live with that kind of pain.

Prayers and Pixie Dust they find her some relief that lasts soon.

party of 3
01-23-2008, 08:00 PM
good grief. it must be awful for her to live with that pain day in and day out. i really wish they would find her some relief soon. i'll keep praying for all of you deb.
:hug: :flower3:

piratesmate
01-24-2008, 09:19 AM
The first 4 months of this I did an awful lot of cyring - between watching my baby in so much pain & not being able to help and fighting with doctors to get them to actually do something and fighting with the school to get her work, my frustration level was more than I could cope with.

After she had that 6 week grace period over the summer, things changed. The pain level started out at a 4 or 5 instead of a 9 or 10, the school was much more helpful & we had a new set of doctors. I'd told DH that I couldn't deal with the school again & he had to do it. I was never really sure if it was the change from JR to SR high or having DH talk to them, but didn't much care either. It seemed to work.

The doctors were better for a while - until they decided that she'd just need to learn to live with the pain & attend school regardless. Through all of that DD did seem to learn to cope with the pain much better, but was still only barely functional. Finally after a year, CHOP basically washed their hands of her - actually refused to even make another appointment! They said we might want to try Jefferson because they'd accept 16 yo's at the headache center. That's been really helpful because they're at least trying to do something!

And in talking to the other people who were being treated at the infusion center, I was really encouraged. One woman said she'd been coming there for 15 years. When on med stops working or the side effects get too severe, they just move on to something else. No one ever gets impatient or insists that she should just give up. (My phrasing not the doctors.)

So despite the fact that DD has a look around the eyes that you often see on children on chemo, I'm at least somewhat encouraged. I will confess that I'd hoped this would completely knock out the pain - even for a few hours - so they could start fresh...it just seems that all the preventatives they've given her never have a chance to work because she already has the pain.

Thanks for all your thoughts, prayers & pixie dust! DD & I both appreciate it. :thumbsup2 And our thoughts & prayers go out to all of you who have shared that you or your children suffer from migraines as well. :grouphug:

ddavis860
01-24-2008, 06:31 PM
:grouphug:

Big hug for you and your poor DD!!!