Good, but gross news ; )

It's Friday!! I have good news, gross maybe, but good! Today I took Steff to the tanning bed, (I know, I know!) BUT the good news is..... she said she sweated really bad in the bed. To some this may be Gross ~ but to me, this is very good. At least she is sweating again. Yeah, I'm sure she will be proud to read that and share with everyone! LOL To me, though, it is just one more good thing to share. Baby steps.
I almost hate to say it, but she had another good night last night. She slept sound. Two nights in a row ~ that's the best she's done in quite a while. However, tonight is Friday, which means later hours. Hope we can make it three in a row! She had kind of a rough day with her back. I took her to the Chiro, which usually gives her some relief, today he did not. SO, I called the ped ortho to ask for anti imflammatory meds. IB s are what they recommended. That's fine, but they seem to upset her stomach. We'll try it. I also switched from heat on her low back to cold. Who knew?? I guess it depends who you are talking to about it! So, ice it is!
Her home bound teacher came today. They worked together and made a plan. This seemed to go really well. Steff was very happy with it. : )
I tried calling today about the accupuncture today, didn't have much luck. I got mostly answering machines. Will try again on Monday. I would like to find someone that takes our insurance. But will settle for one that doesn't> just feel it might help her. Okay, I'm outa here> enjoy your Saturday!! Rain and all.

Thursday.....a GOOD day.

Today was a good day. I took Steff to school during her advisory class so she could socialize with friends & teachers. That put a smile on her face. I know she misses being a part of the school day. We went from there to do the foot ionizer at the Tropical Getaway, then we went to check out the sauna Dave found at RiverMist. I was impressed with it, and we made the decision to go ahead and purchase it. Steff promised she would use it. Dr. F said 20 min. in the morning and 20 in the evening for good detoxing. Against my wishes, it will be going upstairs in the toy room. He thinks it will more available for her if it's close to her room. So, the toy room it is. When she is much better, it is easy to take apart to move downstairs. ~ That's where I want it. : ) I'm kind of excited about getting it. We had discussed this before our last ER visit and visit to Mayo. So, it was a plan in progress. I hope it helps her.
Steff slept sound last night~ very sound. I couldn't budge her over for anything. LOL I'm thankful for the quiet nights~~ it helps to keep my stress level down. ; ) Really, it does.
We had company again today. Seems the chili supper was QUITE the success! Oh My Gosh. I was shocked and amazed. Thanks very much to everyone that participated, helped and ate chili!! ; ) We live in a GREAT community and have LOTS of great support. I can't say enough, but again, Thanks SO Much for supporting our daughter. It means a lot.
We are still taking this one day at a time. Today was a good day, all the way around. I'm hoping for 2 in a row. This would be good! Steff will still be doing the home bound school plan, we are new at it, so we have a lot to learn. I am hoping next week to ease her into class, slowly. Dr. #1 said 1 hour a day until we see how she tolerates it. So, we'll try that next week. It's all about getting her better and back to ole sassy Steffanee!! Thanks again for all the support.

We are Home......

Hey! We're home! ; ) Guess that means I probably should cook or something. Steff had a good trip home, she slept most of the way, truthfully, so did I. She had a rough evening last night when we went to bed. We survived~ guess that was a message that this isn't over. You KNOW me, I"m the up and down girl! I guess Dave is going to check more into getting a sauna for the house tomorrow. Maybe if we can get her to sweat some of the toxins out, it would help. That's where my brain is. Sauna in the AM, Sauna in the PM. I'll be looking into other things tomorrow. She needs to call Lucas Photo and reschedule her outside shots> that will be fun. Hope we get to do that this week, we'll see. I'm off to spend time with the family and kitties~ THEY are really glad we are home! Have a good one.

Our Last Day in MN~revised 7:27

We will be on our way home bright and early in the morning. I really miss my kitties, friends, family, you name it. Steff and Dave are pretty much the same. Seems we haven't been home much since Jan. ~ at least it was Jan 2009!! LOL
The MRI went well for Steff, it was only 30 min, luckily. Her feet started moving toward the end of it. It's hard for her to lay for any length of time in one position. It's done. DR#1 was supposed to call with results, it's after 6, haven't heard anything. The word is prob normal ~ ah, Dave just called, it is normal. Normal. I'm beginning to wonder what that really means. I'll research that later. ; ) Frustration will be my research after that.
My little brain has been on overload all day, as many of you know. I have a 17 yr old girl whose world was turned upside down on Feb 2, for no apparent reason. I am glad to report that the twitching and jerking her body does is now limited to sleeping time. This is good.
Not sure it will stay that way, but there's another thing to hope for. She has gotten lots of rest here. We walked and talked quite a bit today about the situation. We will have to arrive at answers that work for all of us. I won't push today or tomorrow, but will continue to be open with her on our decisions. Any nurses or DRs out there with suggestions, shoot them over~ at this point I feel we have exhausted traditional medicine and will have to search other options. I am certainly OPEN to new and fresh ideas. I will follow up with Dr. F, with the hair anaylsis. Dave just wanted to check out one thing at a time, so that's what we have been doing. I'll get back to reading, researching and seeing what is working for the other girls and moms that have also found this little duck. ; )
I'm back on the loose> with a smile on my face. I do feel that Steffanee has gotten better since Feb 2. and with the biofeedback, things should improve more. I also feel that with the fight in her, we will get there it's just going to take time. Here's to her drinking tons of distilled water, doing saunas, getting plenty of rest, eating healthy and checking out that new beginner Yoga CD we borrowed. Sounds like a plan to me. ; ) See many of you tomorrow. Love Ya!!

Here's the diagnosis...the way I understand it

Okay. Here's the diagnosis as I understood it. First off, all her blood was normal. Yep, normal. Her urine was normal. Yep, normal. All testing has been normal. We get the MRI of her spine done tomorrow, they did her head today. I'm guessing it will all be.......yep, normal. They did test her blood for auto immune and it was normal. I was glad to hear that. Seems like that is a problem with the girls I have been reading about. There's that duck.

So> we have a normal girl. BUT not really. Since all testing is normal, DR#1 has decided that Steff has had inflammation & pain in her muscles and joints for so long, probably from the Gardasil (DR said it, not me!), that she is having stress (that LOVELY word) brought on by wondering what is wrong with her body and why does it hurt all the time. WHICH, in turn, brings on anxiety, which continues to accelerate b/c she doesn't know why her body continues to ache and hurt.
Okay. I'm on board, so is Dave. Steff, on the other hand, is confused. I explained to her that this is real. No one is saying she isn't having real physical problems. The good news from DR#1, this will go away in time. More good news from DR#1, we will wean her off all these meds, starting today. Steff then went for a biofeedback appointment to learn how to control the pain and muscles when they start coming on. She has the MRI tomorrow, we thought about coming home after that, but not sure how her body is going to handle her laying on her back all that time. Would hate to get on the road with her uncomfortable. SO, it looks like we will be leaving here on Wed AM. Will be in touch with some of you on Tues PM or Wed AM. ~ teachers, school, work, you know, those kind of things that we've missed out on this week. : )

My plan? I plan to stay positive with this. Don't necessarily buy stress, but get it. I do get it. I will feed her the minerals and vitamins I purchased from the holistic DR~ what can it hurt, they are all natural? We will pay close attention to what her body needs, sleep, good food, etc. I'm going to try to get her into the sauna & a couple of massages. It does seem like this trip has helped her. She's had more rest than she's had in a while. She still had quite a bit of jerking in her sleep last night. SO~~~~Do I think it's over? No, I wish I could say YES, but I can't. I'm off work for 1 month, hoping to ease her back into school, with this home bound studying. We will schedule a meeting with the school when we get home. I had really hoped they would have said "this is what's wrong" & "give her these pills for a week and it will be gone" I wish life was that easy! It's not, so, we continue to pray and wait. Maybe it's the praying that's making her better! Day by day, hour by hour. and life goes on........
One thing I forgot...AGAIN, please don't question Steff about what is going on, she is trying hard to understand it, but not sure she is ready to openly discuss it. THX

Sunday.

Hey! It's Sunday! Not much going on here. We slept in and are taking today easy. Have to be at the hospital at 8 in the morning. I'm doing wash at the hotel> that's a first.....EVER! It's washing, and I'm waiting. Mostly Dave's work out clothes> the room was smellin' bad. : )
Steff seemed to have a good night. I know it wasn't a bad night b/c I slept through the night and I was in her bed. I would say it was a mellow evening and night. They watched Harry Potter, Dave hasn't seen them. I hung out down here most of that time. Searching and reading. Planning on today being a lazy day, then back to it tomorrow early. Will keep you posted as I learn more.
Have a good Sunday!!

Saturday~ DRs day off

Hey! Nothing happening today on the medical field. Steff did have a peaceful night last night. A small, controlled episode, but then went to sleep. Of course, Dave had given her 2 benedryl in hopes of her getting lots of rest. We are thinking if that little body gets rested up that they might happen less often. Taking care of the body so it acts right is important. I'm positive this even applies to this little troopers body~ going through all this. We're feeding it> her appetite has not slowed down. She doesn't get much rest, but once she is finally "out" it's hard to get her up and around. Hope tonight is a smooth evening as well.

We did go to the Mall Of America today. Pretty impressive. They had at least ONE of every store you could imagine. We did not take a wheel chair, and did not have to carry but 2 medium bags. When I packed for Steff to come here, I was in the hospital mode. I packed all shorts, sweats, and T shirts. Today she purchased a pair of jeans and 2 shirts for the appointments next week. NOW, you all know the child needs clothing. LOL I'm sure she feels better being dresses like she normally dresses than in the lounge clothes I packed. She hasn't complained or griped at me for the packing though. She just shakes her head when she gets dressed. I just wanted her comfortable~ not fashionable! Dave was a trooper today at the mall. He's a GREAT guy ~ for those of you that don't know. And watching him with her warms my heart. They've always been close, but this is different. Sometimes I think I've lost my spot with both of them. ha

Not really, well, kinda. : ) What doesn't kill you will only make you stronger. At least that's what they say.

I did understand DR#2 to say that DR#1 will be weaning Steff off the meds she has been taking. The keppra seemed to help in the beginning, but since she's been getting worse instead of better, she wants to stop them and go from there. Will know more on Monday/Tuesday. I do have a good feeling about DR#1. But I'm still praying for someone to open the door to her healing. Hope that's her!!! : ) Enjoy your Sunday!

It's STILL Friday..

Hey> We finally were let go from the hospital. I told Dave it was feeling like a hostage situation. lol Another DR came in and talked with Steff. They chatted about ways she can help herself through these episodes. He gave her 2 CD's on relaxation. We already have 1 from Kate & Sandra. Healing Waters~ I love it. He also was teaching her about breathing from her diaphram. I'm assuming it's like "finding your center" in dance. Correct me if that is not a good comparison. She listened and I'm hoping this helps to mellow things out. I know it won't happen over night, but I hope it helps. Regardless of what is going on in that little body, coping techniques are good for anyone. I'm thinking this is a postive thing.
Not overly impressed with DR#2, guess you all picked up on that. : ) We "chatted" for quite a while today. Did I say chatted? Call it what you want. Perhaps, debated? Doubt we would be friends in real life. HA! I respect her knowledge and education, but prob not her presentation. I didn't tell her that. Personally I think she needs to work on a little bedside manner. But hey> who am I to her? LOL Wait> I'm the MOM, the one paying the bill. : )
Dave keeps reminding me that we have driven a long way for their opinion, so let them do their job. (other words..STOP TELLING THEM IT'S THE GARDASIL.) I really don't think I tell them that, I just simply throw it out there. Simply a suggestion. Simply my point of view. I really would like it to NOT be it. But at least look to see if it is. AHHHH! I said I was not going to do this. I'm done.
I want to stick with the positive things we are learning here. We are here to learn and make her better. Sorry. Guess since he doesn't want me to voice it there... I'm wanting to voice it here! LOL Did I say in my "about me" that I don't have strong opinions?? I lied. When it comes to my kids... guess I do!! HA.
We've had dinner and are planning on a nice relaxing evening. We've watched a lot of movies! I think Mr. Dave is giving into the Mall Of America for tomorrow. Here's the deal. Since it's a big mall, he wants to take a wheel chair. She balked. I said> hey girl! AGREE> that way we will have somewhere to put our packages! : ) I'm a happy woman tonight! I'm off to spend time with them in the room. Think positive thoughts and keep her on your prayer list, please.
Bocky74-shoot me an email, please. You made me smile. R0br1ch24@aol.com I'll explain to you about detox. Sounds much easier than it is, esp since she's 17 instead of 12. She was easier to boss around at 12. : ) BUT TRUST ME> I'm working on a detox plan that doesn't look like a detox plan to her!

It's Friday...

Hey! okay. We found out today that we will be here until at least Tuesday PM. Her last DR appointment will be that afternoon, not sure what time yet. She finishes her tests on Tues AM, then we follow up with the DR to get all the results. At least that's what I get. Her EEG w/video was normal naturally. Normal. I mean, it's good her brain is okay. I just hope something shows up, somewhere. She gets her MRI on Monday & Tues AM I think. We are still at the hospital, waiting for the biofeedback DR to get here. He will teach her how to handle these muscle things. How to make life easier for all of us. This in itself is important, b/c we are at a loss as to how to help her. We will be here in the hospital until the DR makes it over here to see her. It's a beautiful day outside, hope we get out to enjoy it when he's finished. If not, tomorrow is another day. Steff is begging to check out the Mall Of America> we all know that looking at stuff is not her thing> she's like me....she likes to buy. I keep reminding her she has that debit card! : )
If we make it, fine, if not, fine too. Probably the closest we will be to it though. We'll see. Dave is NOT a shopper of any kind. He runs in, grabs what he went for, and he's outa there. DEF not our kind of shopping! LOL
Hope to report more later. So far, pretty happy with this place. I was happy at the University too! I would be much happier if we could figure this out........later

Thursday

WOW! Last night was a long one. She just CANNOT lay down without this thing taking over her little body. I hate it! Today she is in the hospital, getting an EEG with video. She has had 2 episodes since they hooked her up. They took a TON of blood this morning early. She passed out. I heard her telling the lab tech that she was getting used to giving her blood, they called some code and the next thing you know, the room was full. She then went to the ER for observation, then to this private room. Busy day! We had a couple of different doctors this morning. They asked a ton of questions, naturally. I did throw in the fact that this was a very active normal teenager prior to Feb 2. She asked me if anything had changed in her life to start this> I did tell her the Gardasil shots. She said she doubts that is what this is. With attitude, I might add. As a mom, I really feel that is it. After I've read all the other moms blogs and reports, it makes me believe it more. The seizure like episodes, muscle spasms, all tests coming back normal, severe low back pain. There are a LOT of parallels with Steffanee and the other girls. I really don't know why the Drs refuse to recognize that. What difference would it make? I don't want to sue or anything like that, just fix her, bring back my active girl. The one that can lay down and take a nap anywhere, anytime. The one that used to laugh all the time and have fun without worrying about these stupid episodes. Okay. I'm done.

Seems we have more testing tomorrow. The MRI's of her head and low back. She has another appointment on Monday. So, we will be here for a bit. I just hope they find something that has been missed. Something that can be balanced out, fixed or however you want to call it.



OH! I almost forgot! I know you guys know that I will never get mother of the year.It's a joke with some of us. Sometimes I JUST don't think........okay,most of the time. Anyway, I was sure that getting her in the hot tub would be a GREAT idea. Relaxing, mellow, just sit and chat. She finally gave in, after a lot of begging. Dumbest idea ever! Are you all there yet??? Because I sure didn't think of it. If she has an episode every time she relaxes, what in the world would getting in the hot tub do to her?? You got it! A few minutes after she was in, she said her muscles felt kind of strange. (they were prob doing that dance they do - all on their own!) I convinced her to just try it a little longer. She didn't stay long, and when she got out, that walk had completely gone south. I guess relaxing in a hot tub is not a good idea! ugh. We made it back to the room, she had a little struggle, but not a full blown episode. I felt dumb, guess I should have given that more thought! Dave naturally said he thought of it. Bet not! LOL

She's still sleeping. She doesn't get much sleep at night. The child life specialist brought her in this laptop to use. She was on Facebook for quite a while. She then gave it to me, while she took a nap. A nap. You will never see her try to take a nap anywhere but in a hospital. She just won't take that chance.

We got word that Ms. Becky Turner might be her home bound teacher. This made her smile big.
I think they really bonded through the episodes she had in her room. I personally think Ms. Turner might have missed her calling. She switched to nursing in a flash, and did a fantastic job. Nursing is NOT my calling. I admire those that have that special touch!! All the nurses at the University had that touch. Of course, by our third visit, they all knew her and wanted her to get better. Okay, I'm rambling.......I'm outa here, to watch her sleep some more.

We're HERE!!

We got started later yesterday than planned. I had few things I had to wrap up before we could leave. We gave Steff 2 benedryl before we left, she slept pretty much the entire way here. Those of you that know me will be VERY proud to know that we drove all 7 1/2 hours with out ONE pit stop! I didn't want to disturb her resting, but I was full! I was running into the motel room! LOL It was a very mellow ride, we both slept, Dave sang and drove. She had a difficult night, trying to go to sleep. Motel is very nice and close to Mayo. They have a shuttle every 30 minutes. All is good.
It's Wednesday, we saw the Dr. very nice, patient, and easy to communicate with. She spoke mostly with Steffanee. (good thing for her!!) LOL She did more extensive testing with the motor skills than I've seen. Steff was fighting off an episode the entire time we were in her office. Seems she is an epilepsy specialist. Whatever...we are here, willing to see who ever it takes. She took the CD of the episodes and watched it, asked to share it with her colleagues, I told her to keep it if she thinks it can help. Steff has blood (with fasting) and urine tests scheduled at 7 AM, then a video/EEG at 9 AM, and an MRI of her brain and low back scheduled too. Not too sure of the days or times, but think we will be here until at least Monday. We also have a DR appointment scheduled with another Dr sometime in there. Dave has the schedule, you know> MR. Early man! Steff and I are trying to catch up on our sleep! Well, really, I am. After her appointment today, we had lunch at Quiznos and headed back to the room. She pretty much struggled with the fight until we chilled in the room. Her walk really went south.
That's pretty much our day and I'm happy to say they have 2 computers in this motel office! Seems like tomorrow is full, but will try to post when I get a chance. Bad news for Steffanee, they blocked facebook in here. Probably thought they would never get her out! JJ

MAYO Clinic on WED

Hey! I'm blogging at the hospital, will be short, can't leave her alone but a minute. We will be leaving in the morning some time for Mayo Clinic in Rochester Minnsota. I REALLY hope they can help her and fix her. She has been having a LOT of episodes in the hospital The trip up may be challenging, but we will get through it. Not sure if I will have access to a computer there, but will if I do, I will certainly blog> for myself and you!! : ) She is excited and scared at the same time about the trip. Keep us in your prayers ~ Thanks to all.
Road tripping again ~ music blaring ~ right down our alley!!

Round Three

We took Steff to the hospital again on Sat. evening around 2-3 AM. They kept her and we're still there. Dr. Hussein came and spoke with her on Sunday for quite a while. She passed the test, seems she isn't suppressing anything. (for the FOURTH time!) Dr. Patel will move on now for sure ~ hoping to the Gardasil side effects and figure out how to fix this, while we are waiting for the Mayo Clinic. He is calling this morning to let them know this is an emergency. And an emergency it is> I cannot keep watching her eyes roll completely back into her head. Besides, her eyes are sore and burn all the time now. NOT to mention the rest of that little body.
I just wanted to touch base, I'm off to work. Dave and I are doing the hospital stay different this time. Instead of both of us staying all the time, we are rotating. I spent the night last night ~ but didn't get much sleep, Steff had a very VERY restless night. Anyway, I'll blog again when I get a chance. Just wanted to touch base ~ no visitors please. We want her to rest and let her body get some rest ~ it has to be VERY tired. Prayers are good. : )

YET, another LONG night....

Oh my gosh. Wait! Positive things first. We had company yesterday. Sounds like a fundraiser is in progress. It sounds very organized. We appreciate all the love and concern coming Steffanee's way. Although she doesn't "get it" at this point, she will later. She's just 17, she thinks we are rich. LOL But, really, I think she does. : ) And to her, maybe we are. Gotta LOVE her. That's MY girl. Do I need to mention how spoiled she is? LOL
I just want to put it out there that (I KNOW YOU ALL KNOW!) as a parent you just do what you have to do, you don't "think" about it, you just do it. Every minute of every day is consumed with getting her better and figuring this out. Thanks to everyone, I am sure this will help on the stress level, when we get "there". Financial is the LAST thing on my mind at this point. It always works out, one way or another. We do appreciate it very much.
Okay. Yesterday was a good day for her. She ran to the mall with Laney, and yes, I wasn't too far behind her, looking for Kendell a prom dress. : ) She called and met up with us after a bit. We all laughed a lot ~ like old times. Silly girls laughing over dumb stuff, all FOUR of us. Everyone knows we have some sick kind of humor. Oops! I mean "dry". She had a good evening too, more laughing and giggling. Then came bed time. The MUCH dreaded time to relax. Seems like she has narrowed this down to the fact that she has to stop fighting it and relax. That is when it takes over. I REALLY thought we were going to be event free. I was laying there thinking - wow! just one night of rest for all of us would be good. One night that her little body didn't jerk would be good. Wrong. It was totally different and it scared me more than ever. I'm not going into it, but I will say I called Dr. Patel at 3 AM for help. Dave called him again this morning at 10. He says he can't call Mayo until Monday. I say call today! Leave a message! WHATEVER! JUST DO SOMETHING! My wheels are turning in the meantime. We have an email address to the ped neu receptionist. YEP> I'm emailing her today with all the facts that have changed. It will be there first thing Monday morning. I think I can get my point across. You KNOW I can. LOL
If she is still having problems this AM, or whenever she gets up, we will head right back over to the ER. She feels safer there anyway. Dave is so strong and good with her. I, on the other hand, have started breaking down and leaving the room. Today I will have to make the decision to stop that and be strong again. How long have we been doing this now? Feb 2-April 11, or whatever day it is. It hurts to watch your child hurt. It hurts even worse to know that this was something I made the decision to do. The duck again.
I will tell one thing that happened at Gerbes yesterday. We were standing in line to check out, I noticed her shaking (not twitching) her head and closing her eyes tightly, several times. When she opened them, her eyeballs were all over the place, she said they burned. It looked like her eyeballs were quivering. It scares me. Something is not right. Like how many times have I said that? I just want someone to help her, us. I love her SO much and this is SO hard. I know we will be stronger when we get through this~ BUT let's get there already! Okay. Pity Party over. I'll get in the shower, pray for that peaceful feeling to wash over me and be strong again. I'm not giving into this, but let me tell you.....it is very hard to watch her hurt and not hurt with her. Here's to hoping she wakes and doesn't remember much about the night. Here's to hoping today is yet another fun day. We are going to pick up her prom dress after lunch. That will put a smile on her face. I'm supposed to get a haircut, but we'll play that by ear. I NEED it, but she comes first. Keep us in your prayers. Pray for a door to open for someone to recognize this and be able to fix it. We want our little girl back. I'm off to get that warm feeling!
By the way> If you happen to see Steffanee, please don't ask how she is doing or what is going on. Just treat her like you used to ~ give her a hard time about anything you used to. She likes that. She just wants things to be normal again. Don't we all. I'm out for sure!!!

Good Friday...

~~I ended having to pick Steff up last night. Not because she was having problems, but b/c she decided to go hang out after the late movie. Not happening. When we got home, I noticed her head doing that twitching thing. She ignored it, washed her face, brushed her teeth and got ready for bed. I asked how long it had been going on, her answer was "for a little while". She got out her ipod and climbed into bed. She knew what was coming. I'm not sure how long she had to fight it. She sang with the ipod as she tried hard to ignore the jerking. I smiled at her, but it was hurting my heart. She was acting like it was no big deal. She rolled over and gave me an ear bud, so we listened to the music together while she ignored the episode. One hour later, her body finally gave up. I have to call her a little trooper. She put her head into the music and only whimpered a couple of times. It stayed under control. I did, however, give her that pill as soon as she walked in the door. That prob helped keep it at an hour. Usually after she takes that pill, it lasts a while, but it puts her to sleep. She slept sound until this morning.
I called Dr. Patels office. Seems he is sick and not in a full day. I expected to hear from them, but didn't. Maybe on Monday. I hope and I hope it makes a difference on the time line.
I found another article on Gardasil side effects, I'll attach it at the bottom. It's starting to scare me more each day. I know we don't know for sure, but it looks like a duck and sounds like one. She has started something new with these episodes. We can't understand her. She talks jiberish of some kind. Sounds funny to say, but not so funny to listen to while you are trying to help her. It's over and over and very hard to understand. Strange, I know. I'll paste the stuff from WebMD and sign off - she's staying home tonight. Let's pray for a quiet one. : )

Reported Adverse Events From Gardasil: WebMD
The CDC and FDA monitor adverse events reported in people who get any vaccine, including Gardasil. All those reports go into the Vaccine Adverse Events Reporting System (VAERS).
The 7,802 adverse events reported to VAERS for Gardasil include 15 deaths and 31 reports of Guillain-Barre syndrome, a potentially paralyzing, life-threatening condition in which the body's immune system attacks part of the nervous system. Reports through April 2009.
But the VAERS data doesn't tell the whole story, notes John Iskander, MD, MPH, the CDC's acting director of immunization safety.

Someone knows something somewhere....

Below is a link to Mayo Clinic's site on side effects of Gardasil. I know I sent this out earlier in email, but I wanted to post for people I don't email with. I find it very interesting. Ms. Kathy, you did a good job!
http://www.mayoclinic.com/health/drug-information/DR602017/DSECTION=side-effects

Okay. My sister sent this to me today. The article is dated 04/09/2009. Read the side effects (prob just released, b/c I have not found this anywhere and I have been searching everyday) Steffanee's side effects are on there: Severe low back pain, fatigue, joint and muscle pain, Anxiety, muscle spasms or jerking of all extremities, muscle weakness, sudden and progressing, Irritation (big time), Nausea. I'll just stop there. Most Drs tell us moms that our daughter have too much stress. Looks like someone is realizing there is more to it than stress. I'm glad it's from Mayo, maybe they will have a clue on how to reverse it. I am REALLY hoping they pull this out of the medical summary we faxed to them. I hope a RED flag goes up with someone there.
After a rough night last night, again, she had a good day. She's been working on her homework. She wanted to go the movies at 9 for a late show. Neither Dave nor I wanted to let her go, but we gave in. We both are sitting here hoping we didn't make a bad decision. Who knows what the right thing to do is? I'm sure she gets sick of just sitting around here. Being around her friends is important for her mental health, if you ask me. However, Dave says if something happens while she's out, we will look like the worse parents EVER. Yep, he's prob right. But again, how do you know what is right? She's with Laney, who is very aware of what is going on and I truly believe she can handle it. I'm sure she would call us> 98% sure. I am aware that Steff is her friend, not me. She's been gone an hour, we're halfway there. Do I sound like a mother hen or WHAT??? I swear, I was not like this before. Well, maybe a little protective, but not a hoverer. LOL
Dave called Mayo today and stated that this is pretty much an emergency with these episodes. They told him to call her ped neur and ask him to call to speak to their DR. and maybe we could get in sooner. Dr. P was out of his office today. I really hope he works tomorrow, gets it done, and we can get moving on this. The CD should arrive there by Saturday. Maybe once they "see it" , they will realize what she is going through. I'm off to get a few things done, to kill time, another hour and she'll call, then come home. : ) and hopefully, life will be good. We're planning to give her the ativan (I think that's it) as soon as she gets home, then lay down and watch a movie. Hopefully she will fall asleep relaxed and sleep all night, peacefully. Enjoy your Good Friday!!!

It's well after 2:30 AM

It's well after 2:30, she just got settled down after a difficult episode. I CANNOT keep doing this until May 5> I DO know that. My heart will not be able to last that long. As soon as she passes out, it starts. Tonight we were going to try to give her the pill that goes under her tongue, BEFORE it started, but it was too late. Dave says he'll do some calling tomorrow. Yes, he is more mellow than me, but his heart is broken for sure!
I have to work in a few hours, so I'm off to try to settle back in. I pray the rest of her night is peaceful. She had a fun night, but a rough bedtime. Be thankful she had a good evening I guess.

Wed PM

Okay, I'm a little mellowed out now. Still not happy about May 5, but Gina has convinced me that it will be alright. Perhaps someone will reschedule and make an opening. Shawna, my nurse friend, is mailing the video of Steff's episodes to Mayo, hoping they realize how difficult this is on her. and us. Don't really know if it will make a difference, but at least they will be familiar with the episodes and we won't have to try to describe them. AND it's not like I can say, "Steff show them what happens." I'm glad I have it on CD, I won't watch it or put in on our computer, but it will be good for them to see what happens. Another piece of good news. The Ped Orthoped that I took Steff to asked about her, and my dear friend Holly gave him an update. He also wants the CD so he can share it with all his doctors to see if anyone anywhere has seen anything like this. I believe he is beginning to realize that it just might be the GARDASIL. I feel like I'm making a little progress, or maybe I'm getting some medical help in my corner. REALLY, all I want is for her to get better.
She went to the baseball game tonight with Laney. Yes, I went also. I'm just not ready to let her go, in case something would happen. The not being able to breathe during it concerns me a LOT!
BUT I know you all have read that several times and get it. I'm sure people that don't understand what is going on, look at her and think she looks fine. If they knew her though, they would see a dull face and sad eyes. She still smiles and has fun, but it's always with her. and so am I! LOL Oh well, it is what it is. We decided to do the home bound thing for her education. That way she won't get so far behind or have so many days against her. She seems fine with it. Probably a little relieved not to have to fight off the episodes or worry about having another one at school. Besides, we'll save money on the ambulance rides. (joking.) Here's to hoping she has a peaceful night tonight.

Wed AM

Wow. I should know better by now to brag about having a good day. That said, she didn't have a good night. As soon as she fell asleep, she had one, and not a small, jerking one, but one that made her cry hard. It was breaking my heart.
Dave got in touch with Mayo today. May 5th is the best they could do. I'm calling Dr. P's nurse to see if they can email the video to them and see if that helps. If not, guess we'll wait. That's after prom. Bummer. I got a call from the school yesterday about schooling her as home bound. I thought she would totally balk at it, but seemed like she was okay with it. I'll get the paper work started, then let her make the decision.
I"m at work posting, b/c I am SO frustrated again. May 5 doesn't sound that far away, unless you are dealing with these episodes and a 17 year old girl that has her life on hold. NOT to mention the pain she is in. Oh well, I prob need to eat some lunch~ I'll post more this evening, if I get a chance.

Today was a good day.

Hey! I just read the 1 comment on my blog titled WOW. It's about a girl that is having similar symptoms as Steffanee. If you have a minute, check it out. I plan to call the mom as soon as I'm finished blogging. Steff had a good day today. She's tired, but at this point, that's normal. She's sitting in the middle of the living room floor doing homework. Her art project looks fantastic. She's excited to take it to that Art teacher. She's proud of it. : ) The odd thing with this medical mystery is if you came over to our house today, you would have no clue that Steff is sick. She has learned to deal with her pain and put it out of her mind. She hurts most of the time, but tries to keep going. It's the fatigue that gets to her. She had a bonding day with her dad today. They went out running around ~ usually it's Steff and me running around. I went to work>>> ugh. Long day. I worry about her a lot when I'm not with her. I know Dave loves her and does a good job, but I worry about her. Everyone knows he is a mellow personality and I'm more excitable. That said, you can understand why I worry about her. I plan to work the rest of the week and let them have together time. Dave and I made that decision since Steff has been so angry with me over the Gardasil shots. It might be better now that she has gotten it out, but we had already made the decision.

I called Mayo again today. Nope, can't wait for them to call me. I want to get this child straightened out ASAP. I didn't find out anything, was told to call back around 8 in the AM. Dave will have to do that. I will keep calling. I read that email tonight on the Chillocothe girl, she couldn't get into Mayo until late April, seems that article was written early in March. I really hope we don't have to wait that long. We'll have to find somewhere else to go. I'm going to think positive and hope we get in either late this week or early next week. I'll keep calling too!!

One thing I keep forgetting to mention, the 24 hour specimen was NORMAL, of course. That's about all I know today. Remember to read the comment on yesterdays blog. Interesting.

WOW.

It's Monday. Steff was released from the hospital on Sunday. She was on facebook and the computer most of the evening. I'm guessing she was catching up. LOL I couldn't get on to blog. Then when she finished, she was pretty bummed out and sad, with the whole situation. So, she asked me to lay with her. I did. She had a medium to mild episode once she fell asleep. I put the pill in her mouth. It didn't last too long. She has been good all day. A little in a fog from the meds, but no episodes. She did release quite a bit of anger today. She's very angry at me for taking her for the Gardasil shots. She refused to get out of the car when we got there. It was a struggle to get her into the office to get it. She cried when she got the shot and I laughed. I laughed b/c she is so dramatic, and was carrying on like she was 4. I had NO clue what we were in for. I'm angry with myself for not doing my homework on the vaccine. I'm glad she had her little outburst today, it explains why she is SO angry with me ALL the time. She also told me that's why she doesn't trust the holistic information. It's not about the information, it's about trusting the decisions I make. We chatted it out today. I hope it helped her. I can apologize 500 times, but I can't take it back. I feel bad about it myself, but I didn't know.
After the drama, she came to me and said she would try the sauna, but if she was uncomfortable with it, would I not make her do it. I agreed. She was in for 30 minutes with her ipod on and me in the room with her. SHe didn't sweat. I hope I can get her there again tomorrow.
I called Mayo Clinic today. We already faxed all the paperwork of tests and a medical summary of Steff. I called to make sure they received it. They did and it's already in their computer. They said they would call us with an appt. once they figure out which Dr. will be assigned to her case. I also called Blue Cross/Blue Shield, Mayo is in our network and they cover it. I'm glad. Dave wants to drive instead of flying. Road trips is something we do as a family. Steff will get the front seat so she'll be comfortable, we'll make as many stops as necessary.We drove around yesterday when she got out of the hospital, jamming on music. That's something we all enjoy doing. So, all we need to do is get the appointment, a room and get there. I hope they are open to this gardasil thing. My amazing niece found a girl that is going through a very similar thing as STeffanee. I plan to contact the mom tonight. Her daughter still is not in school. Her symptoms started on March of 08. I only hope and pray the Mayo can get this figured out and get her back on track. My goal is to have her ready for Prom, which is less than a month away. We have everything ready for prom, but the girl. We'll get her there! Keep us in your prayers. Tomorrow is a new day.

A Long One....

Hey! Its late Sat evening. Steff is still in the hospital, Dave is there with her. We thought we were bringing her home this afternoon, but didn't. She wanted to stay there, she feels safe there. I stayed all day, but decided to come home for the night. That's my plan anyway. I will be there by 7 in the morning to wake her up by 9. Anyone that knows our kid ~ knows that she would easily sleep until noon> no problem! : ) Seriously though, she slept all day yesterday/evening and all day today. They have her on a lot of meds. Muscle relaxers seem to kick her little bottom. They knock her out. Today they discussed putting her on YET another pill. I had to bring it to their attention that prior to this, the girl only took a multi vitamin. How about we figure out what is wrong and fix it, instead of giving her all these meds to make her sleep. Yep> you know me, ready on the spot. Dave thinks they are doing this to keep her from having the episodes until the extra Keppra takes effect.(Yep! there's 2 more pills!) Either way, I really don't think more drugs is the answer. I think I made my point. She slept all day yesterday, but when she woke later in the evening, she had an episode that lasted almost an hour. A bad one, problems breathing and all. Today, again, she slept, then in the middle of a movie, Marley and Me(or whatever) she had one. One hour, and new positions. We tried to put a pill for seizures under her tongue. She kept it for a minute or 2, then spit it out. I'm assuming it tasted bad. LOL They then gave her one to chew as things mellowed out. She did. It seemed to relax her muscles. This Dr. is trying to find a way to make Steff feel safe again. If the pill will shorten or lighten the spell, it might help her feel safe. This Dr. also took more blood (her favorite!) to check for heavy toxic metals, and has scheduled a MRI for her lower back and neck. I'm glad she is there. It's just the Resident for the weekend, but she is getting very involved. I like her!
I was feeling like we were in a deeper and darker hole than we had been. Today, with help from a friend that does art, I realized I need to pull out of that hole and put positive energy back into this situation. Thank you lady. Sometimes it's difficult, esp when nothing is helping her. That said, I videotaped Steff having a couple of episodes. This will make it easier to explain to the new Doctors we plan to see. It's a difficult thing to explain and visualize. SO, that should help. She has an appt with the movement disorder specialist on the 17th. Dr. P is hoping the video makes him realize he needs to see her sooner, like today. Also, if we have to wait, we are going to jump into making an appointment with the Mayo Clinic in Minnesota. If we can see the MDS this week, we will do that first. So, we really hope to get things moving this week to get her better. Dr. P said Mayo does not take insurance, you have to pay then file it yourself. But, my sister says that's not true. We'll find out on Monday AM when we find out how long it takes to get in. Either way, we are going.
The Dr in KS that has stated it's the Gardasil doing damage to girls, should receive a phone call from Dr. P on Monday. I gave him his number, he said he would call and get all the information he could. He also stated that he has been researching and can't find any cases similar to Steff's. Most girls get sick and keep getting sicker. Steff has shown inprovement, then got sick again. Whatever.
This is a long one. I'm not finished yet. The hair analysis. I'll hit it lightly tonight. Her hair was sent to Analytical Research Labs. Here's the results I understand. ha They deal in ratios. Ideal ratio with Calcium & Potassium is 4.00, Steff's is 16.33. Ideal ratio with Sodium/Potassium is 2.5, hers is 23.33. You can see her numbers are way off. Her ratios in a nutshell: she has 2 in the high range, 2 in the ideal range, 1 in low and 1 in more than low. Those are called Significant mineral ratios. She is in Sympathetic Dominance, her potas is less than 4. The sympathetic system (SS) is catabolic, which means it tears down the body. Energy is used to prepare for defense, rather than for nourishment or for elimination of wastes. Makes sense to me, but there are about 15 pages to read to figure out how it all works together. Interesting to me. Most information was printed from Dr. Wilson's web site. http://www.drlwilson.com/ if you want to read more> I know a few of you are into this kind of medicine and would def enjoy reading about it. So, there it is. If you aren't interested, you prob haven't read this far. : )
I'm off to pick up and prepare for our little girl to come back home tomorrow. Seriously doubt I can sleep. 1. I'm here alone AGH!!!! 2. I can't get her off my mind 3. I'm not used to sleeping by myself. 4. I'm still working out a plan for next week 5. It's windy and noisy outside. It might be a long night.
Just spoke with Dave, she's still sleeping soundly. This is good, rest is good.

Where Do I Start???

Wow. Not sure even where to start. I could start by cussing, what where would that get me? I am SO frustrated, the tears are coming very easy. I feel we are back to square 1, but this time it's worse and seems like a deeper hole. Frustration is not a big enough word to cover all my feelings. Instead of Steff folding backward like when this all started with these episodes, she now twists into horrible contorted positions. The bending backward was odd to some, but I felt that with her doing gymnastics, backbends, and the scorpion in the builds, at least her body was used to that position. Her muscles certainly had 'been there'. This morning she woke up crying b/c her entire body hurt all over. The episode last night was killing me. I swear her left hip was touching her right shoulder. She was so twisted up that it was hard to tell where anything was. It also would NOT let up. The old ones would spasm for a while, release, then spasm again, many times. The new ones will not release at all. She is really screaming in pain now. The 'release' was giving her time to breathe before it started up again. The new ones also involve her neck, shoulders and head. I know her neck HAS to be killing her. All that information and I didn't even go "there" with her not being able to breathe. I'm not either. So..I'm not sure why it all changed, or why it hasn't stopped. I know we are all sick of it. She has an appointment with an adult neur on the 17th. He specializes in movement disorders. Two weeks is a long time to keep this up. Her heart is breaking and so is mine.
I did get the hair results. Interesting to say the least. I have been reading it, believe it and would like to get it started, yesterday. BUT I have to get Dave and Steff on board to make it work. He seems like he will jump on, but she has her doubts and refuses to keep taking more meds. She has had quite the personality change through this second round. The papers from the hair explain the process that she is going through and it fits. She is in sympathetic something> I'm not all informed yet. LOL but those of you that are familiar will get it. I will buy the minerals and vitamins, what can it hurt? I understood she will urinate out or pass through her blood what she doesn't need. I'll put them in her fruit smoothie I make each morning if that's what it takes. I just want her better. I know you all get it. Whatever it takes.
On yet another note. My amazing niece in KY is a computer rat. She has located a ped neu in KS that is working with girls that are having adverse effects from the Gardasil. She called him, spoke with his nurse. He doesn't want us to drag Steff there, he wants to review her info then work through her Dr. here. This is encouragaing to me. It seems like he has her best interest in mind. I would drag her there> if I knew it would work! Anyway, she's working on that for me. I have to send her some more info. Dr. P's nurse seems to think he will jump on board. Doesn't matter, if he chooses not to, someone else will. I went head to head with his other nurse this AM. She STILL thinks she is suppressing something. UGH!!!! I asked her HOW many pschys is it going to take for you to believe one?? She said if Dr. Hussien says she's fine, she'll let it go. Okay, stay with me. On that same note, in the paperwork from the hair ~ it states if the person is in the sympathetic state, they won't process "hurt" or "disappointment" fully. They hold onto some of it, b/c their imbalance won't let them process it properly. So, maybe there is a connection. I know I am rambling and mixing this all together. Sorry. I am FULL. I am trying hard to understand it and praying that I'm taking her in the right direction. It makes sense. I cannot say that enough. That Dr. works on the neotransmitters and that stuff. Sound smart....don't I?? HA> I know, I know, I still have a lot to learn on that front, but I'm certainly willing to do that.
I'm heading to shower, hoping for that peaceful feeling I experienced in the beginning, then back to my job. Seems like a long time since Cancun. It hasn't even been a week. Thanks so much for all the prayers and words of encouragement. Although I don't answer each email or phone call. I get them, they make me smile and sometimes cry. I appreciate all the love and concern coming our way. God bless each of you. Keep us in your prayers, we aren't there yet.
oh yeah, I watched The Today Show today. They had a lady with Dystonia on there. Made Dave cry. I, on the other hand, refuse to believe it's dystonia. I failed to mention. That's the new name they are putting on it, this time. Go figure. Dr. P already said it's not dystonia, it's too severe and she wouldn't have them in her sleep. I'm trying like h.... to roll with it. Just figure it out and get her back to 'my girl' that's what I have to say about it. I'm outa here.

Not a good day~

Hey all> not much time to type, need to get back to the hospital with Steffanee. She was taken by ambulance again yesterday to the University. Seems her episodes are moving into her neck, shoulder and throat area, making it difficult to breathe. She had another last night after she fell asleep, observed by many that had never seen anything like it. (familiar?)
Today I went to get her information from her hair analysis. Interesting information to say the least. When I get time, I will TRY to break it down. It's called Nutritional Information~ my new folder that is. : )
My girl is having a very hard time is breaking my heart. I had to have a good cry yesterday and was very angry. Not with anyone, just the entire situation. I am sick to death of dealing with this and watching her struggle.
Another Psych came to chat with her today. I try to keep rolling with it. She did clear her today. Said she was a bright articulate young lady. Well, yeah....and???? She decided that she isn't suppressing anything. DUH. So, maybe now Dr. P will move past that. Doesn't matter, when we get out of the hospital, we are getting yet another opinion with another Dr. Hopefully, he will start from his own opinions, instead of following up on Dr. P's like Dr. C did. Okay, I need a shower and to get back to my new job. Keep us in your prayers, please.

We're Back..............

We returned yesterday from a much needed vacation. It was FANTASTIC! Would love to go back, today. : ) We didn't need any jeans or jackets the entire time we were in Cancun. It was beautiful weather and an absolutely wonderful resort. Steff & Sadie got along GREAT ~ not that I was worried, but that many hours together could wear on anyone. When Steff needed alone, quiet time, Sadie hung out 'guy watching' on the beach. (not that Steff didn't do her share!) Steff usually took her alone time laying on her tummy by the pool on the lounger.
We got to watch the TIGERS beat Memphis, and they spared us the loss to UConn ~ we saw the score, but not the game. LOL Dave recorded it, so he can watch that by himself! : ) Back to Cancun ~ food was great ~ we ate a lot of fresh fruit. We tried sushi, Steff always wants me to go eat it with her here, but no thanks. Since it was free, I tried it and liked it! Not the fish, just the veggie ones. We ate Japanese, and that was very good. Could have prob done without the Saki ~ UGH!!! Days seemed long, prob b/c we were up early and out of the room. We all four enjoyed every single minute we were gone. : )
Okay, now about Steff. We watched her fight off a few episodes, by moving around and stretching out. I was aware on Sunday pm that her head was doing that twitching thing. nice. So, our vacation was not incident free, but totally fun. Steff had an episode in the airport on the way home, and yet another after she sat for 2 1/2 hours on the plane. They had to wheel chair her off the plane. She was embarrassed, but life goes on. We didn't get much sleep on Sunday evening, so I knew she was tired and lacking on rest. We even gave her a full muscle relaxer before we left the airport. That didn't stop it.
Besides being tired, she didn't put her back brace on, not sure why she didn't. She did wear it on the flight out, and did fine. But she also had plenty of rest before we left. We survived it.
She left for school today, looking tired and wondering if she would be able to sit all day. She didn't make it. Around ten, again in Stats, she had another episode. Dave went and got her, we gave her 1/2 muscle relaxer and she knocked out until just a few minutes ago. Here's to hoping she gets her homework done, eats dinner and heads to bed early. I will insist she wear her brace tomorrow. I don't have any results from the 24 hour spec or the hair yet. I will post both as soon as I get word. One thing Steff did say that stuck in my mind today: it felt good to be in Cancun, where no one was asking me how I was doing and if I was okay. I think she felt normal again there. Sadie handled things with her real well. We left the medical issues at home, the best we could. Okay, I'm off to fix dinner~ not my fav, but it has to be done!!

Tuesday AM

Today is THE day! All smiles here. I'm feeling better about it. I took Steff to a Dr. yesterday that sent off hair samples for analysis. This should tell us what we are dealing with in her system. She's a holistic Dr. Not sure I spelled that correctly, but you get the point. Also, I will be dropping off that 24 hour jug : ) at Boone today. SO> possibly some progress can be made while I'm out slacking off. No, Steff wasn't too happy to give the hair up~ I about died, I thought they took a couple of strands with the roots. Nope, they cut 2 nice chunks of hair from the back of her head. Her face was priceless......mine prob was too. It's just hair. Not sure if the insurance will cover this, but I will make an attempt. Doesn't matter, I think it's a good idea.
The girls are coming over to learn about our cats and take care of our house. This takes a big load off while we are out laying in the Mexico sun. Great friends!!
Some people seem to surprised that we are dragging Steffanee off to Cancun with all this going on. My answer~ what can it hurt? She has them here, she can have them there. We are hoping she doesn't, but we'll deal with it. It's not like we are in any process of fixing something and are interrupting it. We know that all her tests are normal. Normal kids go to Cancun. (sarcasm). We will take good care of her and to me, this is giving her a break from all the DR. stuff. We will not be discussing medical junk down there. Besides, I scheduled this in November, before she started having these episodes. There you have it. : ) Life is good and keeps on going................

Sunday afternoon

Hello all. Another beautiful day in Missouri! : ) Steff worked a long shift yesterday. She made it, but was very tired when she got home. When I met her for dinner at 5, her back was hurting, she ate and took 2 IB's. She looked good, but tired. I was in contact with Leslie, from www.holyhormones.com yesterday. I questioned her about how to find out if the Gardasil is doing this. Her response was again, that we need to get her detoxed and we need to do it the right way. She gave me a Dr. in Colorado to contact, he's similar to Dr. Flannery in CA. I plan to do that on Monday. Hoping he has a contact here in MO to work through. In the meantime, we are getting things ready for Cancun, along with watching the TIGERS! Steff is working again today 12-6. Since we don't feel it is safe for her to drive yet, we are taking her to and from. She says she feels like she's 14 again. Oh well.........
I slept (layed) with her last night to observe her while sleeping. I did give her a full muscle relaxer before bed. She arched out 2 times, but it stayed calm. Her left leg twisted a few times, but she still had a full night of rest. I asked her this AM about how she slept, and she said she slept good. I don't think either of these things woke her up, which is good. I was curious if the relaxer would make the episodes lighter. Guess that answer would be yes. Of course, that was just one night, after a LONG work day. I'm hoping we are on the right track/train, whatever it takes.
Dave brought it to my attention on Friday, that I need to stop saying, "I want my girl back". He says it makes her feel like she has become someone else. Didn't realize how that came across until he put it that way. What I meant was~ That happy go lucky smiling, laughing, happy girl she was before this started. She's trying to be that girl. I need to let that go and work on getting her over this. We plan to do the 24 hour specimen thing on Monday, I'll drop it off on Tuesday.
Not sure how long that will take, but I did cancel her appt with Dr. C on the 24th. We might follow up with him after the UA results get back.
Not much going on here, laundry, dishes, that kind of stuff!! YUCK! Aaliyah is here until Monday evening. She will stay home with Steff on Monday. She's an easy kid to have around. She's watching Grease ~ and has not left the TV. Grease was always one of Steff's favorites too! Oh well, have a good day~ I plan to know more on Monday. Later.......................................

Friday March 20, 2009

Hey! It's Friday, the Tigers won. Steffanee made the Varsity Football Squad for cheerleading, which is what she wanted. I would say it was a good day. Not much happening with Steff since Tuesday. My brain has been 'whirling' though. Guess that's not a new thing. We leave for Cancun on Tuesday. Instead of thinking of going on vacation, I'm thinking that will be 7 days that I won't be able to make phone calls and appointments. I'm planning to tie up some loose ends on Monday. Dr. P sent the referral papers to the Infectious Disease Specialist on Monday. I haven't heard from them. I'll call on Monday to see where that stands and hopefully make an appointment. The orthopaedic Dr. said since nothing showed up on the bone scan, that he would like to do a MRI on her spinal cord and muscles. BUT we have to give the brace a chance to fix her first. SO, we see him in 3 weeks~ he'll probably schedule it at that time. There is a part of me that thinks that's a good idea, then again, everything is coming up normal, so it prob will too. In my heart, I really feel it's the Gardasil. I feel it more each day. The parallels with the other girls that sticks in my head~ all the tests come back normal, yet they are having unexplained problems like Steff. Not necessarily the same, but similar. All tests are normal. I wish I could find someone that would know how to test for the Gardasil. I'm not sure how that would work, but surely there is some way to know if that is what is causing all these violent episodes. Maybe I'll search for that on Monday~ not sure how, but I'll start from scratch and work from there. I am so sick of watching her go through this. I know she is sick of it as well. There is something happening to her body> I wish someone could figure it out and make it stop.
She's spending tonight with some of the cheerleaders. It's Friday, the end of a long week. I hope she does okay. I worry to death about her, unless she's with girls that know how to handle the situation and her. I hope she is having fun and enjoying herself. She works tomorrow~ here's to hoping it's a good night for her. Later.

Wednesday PM

Hello All. Tuesday was a full day, to say the least. We went to get the dye injected for the bone scan, all went well. We went out to lunch and shopping (of course), waiting for 1:30, to return for the bone scan. I got all our tanning, sunscreen and aloe vera gel for Cancun while we were out. The bone scan went real well, until the last 10 minutes. I noticed her hands folding in and her toes moving, I could tell she was fighting an episode. Once they got her out of the machine and unstrapped her body> the episode started and went for quite a while. One nurse wanted to take her down to the ER. I'm like....why? We know what is going on, we've been there 2 times already. Anyway, they called a nurse to help, then she paged Dr. Patel. We were having quite the gathering. Dave exited to use the Men's room> NOT! He just needed to get out and get air. It was crowded in there, not to mention the fact that he was watching Steff struggle through the episode. He opened the door, and I could tell he was having a hard time. I went to him, had him lean against the wall, then he slid down it. He was "white" and clammy. They threw him on a bed, took his vitals and took care of him. I was going back and forth. There were med students with Steff, who were very good with her. I also appreciated the very nice, concerned nurse we had. Long story longer, they gave her a shot of benedryl and sent us out. Dr. Patel also gave her a script for a muscle relaxer- how many times did I ask for that? So, she now takes 1/2 at bedtime, then next week (no school) we will increase it to 1 a day, and see what happens. Dr. P is still stuck on the "something has happened to her" and this is her way of telling us. I, again, disagree. I told him to prove to me that the Gardasil is NOT doing this and I'll be open to your "stressed" theory. He said we can both work on what we think it is, then we will get together and discuss it. He called me today at work with an appointment with a Psychologist for her. I'll take her, b/c what can it hurt? In the meantime, I'm going to call the Infectious Medicine Spec back to see when we can get in, and if they can help determine what is going on. BTW, the bone scan was normal. All the tests are normal. So what is causing this? and why won't it stop?
I also went to Boone Hospital Lab today and got the jug for her 24 hour urine speciman. NICE! It has to be kept cold. I'm thinking the bar downstairs...LOL not really. I'll prob get a cooler to keep in her bathroom. This is for Dr. C in SL to check for copper content.
There's my day for Tuesday and Wednesday. Oh yeah! I worked today. Tired and crabby, but I worked. I think I pretty much covered it all. We are not any closer today than we were last week. I did forget to mention, it seems to be going into her shoulders and neck. Nice. I guess this happened at cheer practice. She told me when she got home. The episode yesterday involved her neck/head more than I have ever noticed. I'm done. Catch you when I know something OR if anything more happens to this girl!

Tuesday PM

We had a very long exhausting day. Steff had several episodes at the hospital, toward the end of her bone scan. During these episodes, Dave slid down the wall. So, I was there with both of them in bed with issues. Did I ever blog that NURSING IS NOT MY CALLING?!? Just wondering. I'm tired, my allergies are getting to me, I'll post tomorrow. Believe me, I have lots to post. Everyone is home, alive, and in bed. Except me, of course. I'm headed to sleep with our little medical mystery. I'll try to post after work and errands tomorrow. Have a good day.

Saturday PM

Hey! Slow day for us. We went shopping with friends to get ready for Cancun. Steff was tired, but UP for shopping. LOL She didn't have that little shine in her eyes today, nor did she have much tolerance. (w/me). go figure. On our way home, I realized she didn't wear her brace, so her back was hurting. She didn't want to deal with it while trying on clothes. Plan for next time: at least have it in the car so when we're finished, she can put it on. Yep, we bought quite a bit. I KNOW~ Like she needs clothes. Anyway, we had a pretty good afternoon. Friends came over again tonight to watch the TIGERS WIN!! Yay! Char brought dinner> which was really good. Speg pie, garlic bread, an awesome Italian salad and mint brownies. It was delicious. Steff hung with us to eat and watch the game, but was more interested in talking about her purchases. lol She was laughing and hanging in there for the win! She planned on going out tonight, but was too tired.
That's about all I know today. Nothing new to report on the medical front.

Sat 2 AM

Hey Guys. I missed work today, I didn't sleep much on Thursday night. My wheels wouldn't stop turning. I got up with Steff this morning and saw her off to school. She looked really cute when she left. We went out to dinner this evening with a few friends, then they came over to watch the Tigers> they won! Steff fell asleep on the couch downstairs after the game. About 30 minutes later she went into a violent, long episode. It lasted 35 minutes. Our friends were still here. I really don't think anyone is prepared to witness what she goes through. She was very uncomfortable and in quite a bit of pain, during and after.
Today I received that email about the Chillicothe girl and Gardasil. In the email, I noticed a name and number for infectious diseases. When I spoke with the SL Dr. I asked him if there was any way they could tell if the Gardasil was doing this to her. He said an infectious disease Dr. would be able to tell. I let that go. BUT, today when I saw a name I recognized attached to the Dr. I called them, chatted and sent her my phone #, along with a link to my blog. She said they have people there that study these types of things. SO, I have a call into Dr. P asking for a referral to one of those Drs. In the meantime, she goes for that bone scan for her back. If something shows up or explains why these episodes are happening, I'll cancel. I know I don't dwell on the Gardasil, but in my heart, I really feel like that is what has happened to our girl. If we can find out, then perhaps someone can help us get her better. Watching her struggle through these episodes is extremely difficult. I have been laying with her, she fell asleep, but I can't. It's almost 3 AM ~ how can I shut down and sleep??? She's suppose to work tomorrow 1-5, I know I can't be with her 24/7, but I would feel better if I could. I do okay while she is at school, b/c they have seen it, and several of the teachers/sec keep an eye on her and know how to take care of her when it happens. I feel like I am back to square one.
Back to that email from the Chil family. I noticed that in the warnings she found for Gardasil, it listed sore joints or muscle pain to contact a doctor. I did not read that anywhere in the paper work we were handed in the office. I really think if I had read that, I would have listened to her when she complained of these things. I would have known it was the shot, not over working them in Cheer leading. The only side effects I was handed was soreness at the shot sight and to watch for fever. Another parallel with the Chil girl, things seem really loud to Steff when she's in an episode, or when one is close to happening. I know Steff is not even close to being in the shape that girl is in, but something is going on inside her little body. I know I'm rambling, but I feel so helpless~ and I'm the mom. I should be able to help her. Here's to hoping tomorrow is a good day for her.

Thursday...

Hey all. My days are much busier now that I'm back at work> actually made it 2 full days in a row! I called about the 24 hour specimen> Boone Hospital was very helpful. They are open all weekend, so this is something we can do on a Saturday. I received the script today in the mail. Glad she doesn't have to miss school to do this. (work will be glad too) : ) Steff seems to be doing better with the brace, but hurts when she takes it off. We still don't know what the problem is. Hoping the bone scan or the labs will show something. She HATES when I question her about the pain, her spazing or anything about being sick, so this week I have tried very hard not to ask the usual 20 questions! I can tell by her tolerance level that she feels better than she did last week. I can also say that if we make it through Friday night- it will be a week since an episode. I hate saying it, b/c then it happens. But Dr. P did up her Keppra another 1/2 before bed. She seems to have her appetite back, I'm guessing the nausea has stopped. That is about all the medical news I have.
On the school news- we were worried about her grades, with her missing so much school. She got on it and pulled her grades back up. She ended up with a B+ and the rest A's. Can't complain about that> esp with the hours she missed. She's in there doing homework now.
That's about all I have to share today. I probably will try to post every other day, since things are pretty much the same each day. If I learn anything new about her or find more out about her tests, I will keep you posted. I'm hoping we keep going in the right direction!

Tuesday PM

Hey! The photo shoot went well. Steff was very comfortable with the Lucas guy! Hope he got some good ones~ looked like he did. She will be going back the middle of April for the outside shots. Today was fun for her, but I bet the outside shots will be the best. I made it to work today, and was dragging tail around 12. I didn't sleep well last night, either that, or I missed my nap today! LOL (not really)
The corset/brace seems to be doing it's job. She seems happier and not "on edge" like she had been. Def more enjoyable to be around. She said it relieves the pain on the sides, but it's still sore in the middle. Not sure what that means, but it's giving her relief> that's all that matters. The SL Dr. finally got in touch with me> I missed his call last night. Her blood was normal, but her urine is slightly elevated with copper. SO, he wants to do a 24 hour specimen and go from there. Not sure what all this involves, but guess I'll learn! He is mailing us the work order, and in the meantime, I will check with the lab to find out what we need. She is now taking the nausea pill, sinemet only 2 X a day. This could be helping with her tolerance level. : ) I would call today her best day yet since we left the hospital. Wo Hoo! Life is Good. Here's to hoping each day is better than the last!

Monday 3/09

Good Afteroon> my first day back to work did not happen. Steff had an appointment at 9, we finished around 12. After her appt. we had to pick up her refill on Keppra and have her fitted for a corset for her back. The Orth Dr. scheduled a bone scan with dye for her back. We do that on Tues 17th. She has to be there at 10 to get the dye injected, then return at 2 to get scanned. That will be another day off of school and work. I REALLY hope he can figure this out. If he can get her some relief for her low back-that would be good. I hope the corset/brace thing helps her ability to sit. Who knows~ maybe we are dealing with 2 different issues?
I have a call into Dr. C> hope to talk to him today on the results of blood/ua. I really feel like he would have called if something showed up. Just the same, I'll let you know. The Orth Dr. also wants her to give cheer leading a rest. They have try outs next week. I really don't think it's the cheering or dancing that hurt her back. More the jumping and flying-the coming down. We'll see. I'm sure she won't give it up. BUT if she would let her back rest from flying, we would know if that is her problem with it. Oh well, that's just another day in out world...............

Sunday 3/08

Good Evening All! Life is good today. It has been a boring day with nothing to report. I am thankful for days like today. Steffanee did tell me that I act like this is over and it is not. WOW! She then told me that she still has bad pain in her back that has not gotten any better. Just because the episodes don't happen as much, doesn't mean this is over. Well, OKAY THEN. She's right, it's her body and life that has changed. Hoping tomorrow we can get some answers from the Ortho Dr. I will touch base in the evenings, since I will now be working! I won't have as much time to spend in here on this computer. BUMMER! : ) I will still post, b/c I like keeping a record of everything going on with her. Here's to hoping it won't last too much longer. ~ me

Saturday morning...

Hello all! Friday proved to be a pretty good day. We made it to her appointment at 11, as scheduled. We finally got taken to a room at 12:15, didn't get out of there until 1:15. We had a nice visit with Dr. P and his nurse. He said dystonia does not spaz you out while you are sleeping. (he did say it in nicer terms) He is however, putting his student DR. on that this weekend to research. We talked and debated for quite a while. I mentioned the Gardasil again. He said they are looking at that and when he gets ready for a clinic, he will be sure to invite me. I again stressed that I am not looking for someone to blame, I just want to know how to get her healed and back to herself without these episodes. He has his own theory on these episodes. He seems to think that something or someone has hurt her emotionally and she is keeping it in her sub conscious and that's why it happens at night while she is asleep. Okay~ BUT then, why did it happen at school for 2 days? and in the hospital - 30 episodes in one day?? She seems like a well adjusted young lady to me. Of course, I am her mom. That said, if there was something "eating"at her, I think I would notice a difference in her personality. We talk quite a bit, she tells me some stuff, I'm sure not all. But I am keyed into her personality. There is his theory and my rebuttal. Still a mystery. He just smiles at me and agrees that we are on the same page> we just want to get her better. You know I'm sassy and so does he!!
I am taking her to the Orthopeadic Dr on Monday at 9. Yep, my first day back to work and I called in a half day of vacation. AND on Tuesday I have to leave early b/c she gets those pix taken at Lucas Photography in Moberly. I plan to work regular hours the remainder of the week. LOL BUT we'll see what it brings. Dave is happy I'm going back to work.
I'm going to call Dr. C in SL on Monday as well. I missed him on Friday. I will find out the results of her blood/urine work and ask about taking her off the nauseating pill. She is still having the episodes, so what's the point? BTW> she had one last night at a friends house around 1:15, in her sleep. They handled it just fine and reported in with me. I know she was very tired yesterday, but again, there is no pattern on these things. WHEW! I am rambling today! Sorry, I just have a lot in my little brain! : )
I am also thinking about cancelling her appointment with Dr. C. I took her to him for a 2nd and fresh opinion. After processing his testing and way of thinking, I don't think we got that. I feel like he just took Dr. P's diagnosis and did more testing for that. If we are looking at the same ideas> we certainly can see Dr. P for that. I'll know more after I speak with him on the phone tomorrow. I will express that thought to him.
Okay, today is a new day. She came home at 10 AM is naturally crashed out on the couch> it's always like that when she spends the night away from home. Here's to hoping for a good evening! Enjoy this spring like day!

It's FRIDAY.......

Yesterday was Steff's best day since this thing began. She looked like my girl when I got to the BB game. (boys~ they lost.) She had that little shine back in her eyes. She did a good job cheering~ the entire game~ she looked good! We chatted and laughed most of the way home, then she knocked out to Taylor Swift. It felt like old times-it's been awhile. : ) She looked good again this morning! Dave says she'll have good days and bad days, he thinks I get too excited on the good days. Oh well.
Steff has an appointment this morning with Dr. P. I really don't look for any answers there, unless he has done tons of researching and has come up with something. I think she has pretty much stumped him with this medical thing. But we are going, just the same. She also has an appointment with the ped orthopaedic Dr at the University, either today or Monday morning> still up in the air. Either way, I'm taking her. Can't hurt~ and will eliminate my questions about her low back pain.
That's about all I know. Today is my birthday> wo hoo!! Lunch with friends, this is good. Enjoy this BEAUTIFUL day! I'm outa here.

Thursday

Hello all! Not much going on here. : ) We didn't make it to the game last night. Steff studied for a test and read on "Huck Finn" for English. Pretty mellow evening. She had PT this morning. Her back is not easing up on the pain when sitting. Angie suggested going to an Orthopaedic Dr to get it checked out. (didn't I mention that early in Feb?) Anyway, I'm going to call today and get an appointment> what can it hurt? I am glad to report the nausea was gone yesterday. She was ready to eat! I'm glad and hope it stays that way. (she had mostly been munching on crackers~due to the nausea)
We stopped by the mall on the way home from the orthodonist. She wanted to report in on her job. She's scheduled to work next week. Not sure how I feel about that, but again, we will play it by ear. It's a beautiful day outside> I'm out of here! Enjoy your day!!

Wednesday AM

Good Morning all! The one thing I know today ~ these episodes are not predictable. Watching her at the game last night, (boys~won) I would have guessed we were going to have a tough ride home, or a rough night of sleep. NEITHER! She slept all the way home, then went straight to bed. Maybe it's the 3rd pill that is making her "zone out" ~ She was making me nervous at the game. I know she was tired, I'm sure they all are, it's a long drive with late games. She was still tired this morning, as she headed off to school. I'll be picking her up at 2 for a retainer check with ortho. She will be coming home after that to rest and work on her homework from missing so many hours. Quarter is over on Friday. Depending how that goes, we might make the game tonight, but doubt it. I know this is her last week of cheering, but it is not my last week of stressing~ I hope it is, but let's be real. So, we'll see.......
She made a full day yesterday, seemed like her appetite has picked up. I expected the 3rd pill to completely knock it out, I'm glad it didn't.
Medical stuff... I plan to call Dr. C on Thursday to check on her blood tests. I keep hoping he will call me and since he hasn't, I assume they were okay. I'll call tomorrow anyway, and give him a report on these 1/2 pills. That's all I know.
I do have good news for the people I work with. Our company switched to Blue Cross/Shield on Jan 1st. They have already paid Steff's hospital bills. It was over $15000~ my share.... $1096.54. I'm good with that and was impressed with them. They also have been very helpful over the phone, trying to figure this thing out. SO, This is good news!!
I have good news for me too. : ) Unum finally approved my disability pay. So, they will be mailing me a check on Saturday. This is good. : )

Tuesday AM

Monday was an okay day for Steff. She was very tired all day at school. She rode the bus to the game in Versailles and cheered. (Girls~they won) : ) She rode home with us and complained that her back was hurting. She was all layed back in the front seat with her feet on the dash, she looked comfortable! She seemed to have a restless night. I heard her call for me around 3:45 AM, she was having an episode. It wasn't as light as they have been, probably a medium. : ) Don't know how else to describe it. We went to PT this morning and she was tired, but seemed fine. There is another game on Tues & Wed, not sure she will be riding the bus or cheering. We'll play it by ear. At this point, I hope she makes it all day at school.

She starts taking the sinemet (1/2 pill) three times a day today. This one makes her very tired. I gave a few teachers a 'heads up' b/c she takes her first one with breakfast~ just in case she knocks out in class. I'm supposed to call the St. L. Dr. back after 4 days of the 3 a day. I guess then he will decide if she needs to stay on it, or come off. I did buy her some Vit B 12 today at Clovers. I am hoping that helps. I also bought her some chewable ginger for the nausea. I'm all about getting her fixed! LOL I hate that the meds have such side effects. They seem to be helping, but the nausea and feeling tired all the time stinks.

I did get a call from her OB/GYN today. She said they searched everywhere and didn't find any proven reports from the Gardasil. She was very supportive and nice about it. Said she would keep searching and keep in touch with us. She asked how she was doing & what meds they had her on. She also stated how frustrating it is for a Dr. to not have answers. Yep, frustrating for parents as well.
SO> Here's to hoping today is a full and productive day at school!!

Monday AM

Hey! Glad to report Sunday was just as boring as Saturday. She slept in, ate, watched a little tv, and took a long afternoon nap. I think the nausea gets the best of her. She did a lot of homework, and that was her day. Relaxing to say the least.
She has a full week, so we'll see how that plays out. Districts in Versailles, which means bus rides, lots of sitting. I really hope it all goes well. This is her last week on the schedule for cheering this year. I hope she gets to enjoy it. We'll be going to the games so she can ride home in the car. She also has several appointments this week, PT on Tue/Thur @ 8:00 am, Orthodonist on Wed @ 2:30, and Dr. P, neurologist on Friday @ 11. Looks like I'll be busy as well. She will find out if she can drive on Friday. I'm not too sure how I feel about that yet. When she has the small episodes, the flinching is in her legs. She seems to think that's fine, but we'll see. It is something we def will discuss before we send her out on the road.
I forgot to mention those Taylor Swift Tickets on Friday. Steffanee naturally wanted to see her REAL bad, along with a few friends. I called Streetside, the tickets sold out in TEN minutes. They only sold 2 tickets to one person and they were gone. BUMMER. She will be in St. Louis on Aug 8 with Keith Urban, we'll see how those tickets go. On a little lighter note, : ) It was 82 in Cancun yesterday. Three weeks, we're there.

Sunday AM : )

Good Morning all! Saturday was a very nice day around here. After a long nap, Steff picked her room up (SHOCK!) and had a good day and evening. She went to see Slum Dog Millionaire and really liked it. I think it's one of those movies that make you think. I would really like to go see it myself.
Dave and I kicked it around here, watched a movie Gran Torino with Clint. It was pretty good, I was glad it wasn't as violent as I thought. It, too, makes you think. We laughed a LOT.
Boring post, I know, but good movie reviews!! LOL Boring is good at this point.
I'm letting her get as much sleep as she needs. Well, not really, I will be making noise, with her door open in about 20 minutes. NO ONE needs to sleep past 11. If she feels up to it, and doesn't have too much homework, I think we'll road trip to Boonville to see family after the Tigers play. Hoping for another boring day! Enjoy you Sunday everyone! Life Is Good.