School has started and Krista is a freshmen in High School. She's gotten a lot better over the summer. She will still shake occasionally, when her immune system is down or she is stressed, but she's able to deal with it a lot better now. 

We are done with tests and trying to figuer this out for now. The rheumatologist couldn't find anything wrong and referred her to the psychologist. The psychologist wasn't much help and never once gave us a diagnosis of conversion disorder or any other disorder.  I'm tired of putting her through unnecessary tests and doctors. We will continue to treat it as needed through diet and exercise. 
Thanks to everyone who read and commented. Your comments and support  meant a lot to us. 

I will keep the blog up with the hopes that other families going through this will read it and know they aren't alone.  Please feel free to contact me if you stumble upon this blog and I will help any way I can. 

We are still here. I've lossened up on her ditary restrictions for the summer and she seems to be doing ok. Still shakes occasionally. We see the rheumatologist and neurologist this week. I'll keep you updated as to how the appointments go. Hopefully they will be able to figuer something out.

I thought that keeping Krista on the gluten free diet would solve all of her issues but it hasn't. There must be something else besides the gluten setting her off. We went to the fair tonight and she was fine the whole time we were there. She had a blast and rode a ton of rides. In the car in the way home she got a headache and started shaking. She's been shaking and having the episodes since we for home. Maybe I let her do too much? I wish I knew what was causing the reactions. :( im hoping she gets enough sleep tonight and doesn't have any issues in the morning. I kind of feel guilty for even taking her now, this all just sucks. :( hopefully the rhumatologist will be able to help us figuer this all out. We don't see him until June 19th though. Sigh. 

She's still having episodes this morning so no school. Ugh wish I knew all the triggers that bring the episodes on! We can only guess why it's so bad this time. This is SO frustrating! :(

After weeks with out any major seizure like issues, only minor shaking, they all cme back tonight. Krista had her 8th grade banquet and must have eaten something or did too much bc she's having a ton of episodes tonight. She has fun at the banquet and didn't shake too much there thank God. We don't see the rhumatologist until June 17th so I guess we will just have to keep waiting to find out what exactly this is, sigh. Hope everyone gets sleep tonight.

Got this from a friend today: http://healthimpactnews.com/2015/gardasil-the-decision-we-will-always-regret/#sthash.WuAMjTEl.gbpl

It's awful what this vaccine is doing to these girls. I'm convinced it did something to her immune system and something that may have been dormate before is now active. 
We still haven't heard from the rhumatologist yet and I've been calling everyday. 
Krista got her report card and despite all the days she's missed she had all A's and B's and once C in math, one point from a B. I'm so proud of her for sticking it out and continuing to go to school despite the pain and shaking. She's super strong. 

Krista is home today, she woke up shaking and hasn't stopped. I called the neurologist again and he's supoosed to have called the rhumatologist. We are waiting for the rhumatologist to call us back. If I don't hear from them by Thursday I will call and get their number. I hate this waiting game crap. She really wants to go to school but I can't send her like this. Maybe resting will help and she can go later today. sigh. 

Finally!!!

Krista isn't crazy and neither am I! Good news is her MRI was normal, bad news is her ANA blood test results were very high. This could, among other things, indicate an autoimmune disorder such as drug induced lupus. I've been saying all along this was an autoimmune disorder! We need to see a rheumatologist to run more tests. Chris sent me a link from a study done in Italy that linked gardasil to lupus. I need to research and read up on all of this as well. I'm just glad that now someone might take us seriously and not believe this is all psychosomatic. I hope we can figuer it out and get her the right treatment. 

Sunday

I'm sorry I deleted your comment Melissa , I was trying to reply! Krista has been doing better but still has a ways to go. She's handling it all a lot better now though. It's like she's getting used to it I guess. We found a really good neurologist and she will be undergoing tests next week. We are also still seeing the naturopathic doctor, physical therapist and a psychologist. They are all helping her to deal with the symptoms. It seems to be a bit better as long as we stick to her diet. When she goes off of it the episodes come back with a vengeance. 

I haven't felt much like blogging bc there isn't anything new to report. We just are taking it day by day. 

:( 

After a pretty good weekend and good day at school Monday, krista is home today with new symptoms. She now goes limp in her legs and falls to the floor, her arms also go limp and she can't move them. It's lasting from one to five min. I'm scared it might be guillain barre syndrome so I'm keeping an eye on her today and we might end up back in the ER. It keeps happening over and over. Ugh this can't be good. I'll update later. :( 
And of course the doctor just called and said more PT!!!! Ugh. 

Update: two neurologists examined her and said conversions disorder. We saw a psychologist right after we finished up in the ER. He will try to treat her for conversion disorder. I am tired and don't feel like fighting with the doctors anymore. I don't know if the gluten free diet and everything else we are doing is even helping. Right when I think it's helping and she's getting better we have another MAJOR setback and another symptom shows up. We are back at square one and starting over again. I know the vaccine triggered something but at this point I don't give a damn what they want to call it, I just want it gone and for her to be like she was before the vaccine! Normal!! 

Ugh today......where to start???! Well krista had her 1st PT appointment which we barely made it to on time thanks to Birmingham morning traffic. We get there and have to wait bc the receptionist wasn't in yet and then wait again bc the physical therapist is late. She basically spent two hours talking to us about everything under the sun. After telling me how awful Pelham high school is she finally got into what we need to do for Krista. She has to go once a week to PT and has to do cardio for 20 min twice a day. She also has strength training exercises to do as well every day. Since it was lunch time by the time we finally got out of there we stopped to get sushi at our fav sushi place. They had gluten free sushi and soy sauce, it was a good lunch, made up for the morning. 
I dropped her off at school around 12:30 and left to get jocelyn. I finally get to go home for a about 30 min. I leave home at 2:00 to head to her school for car pool and she starts texting me that she's DONE with choir and soaking wet. I tell her to call me and go to the nurse. The nurse calls and tells me she's having the episodes and soaking wet bc someone at choir threw water on her. I just about go off because we have been dealing with those idiots in choir all year. The teacher has zero control over his class and they learn NOTHING in there. It's a shame because Krista loves to sing and was excelling in choir when we lived in Colorado. It's her passion. Anyway, I go pick Krista (and Maddie) up and talk to the nurse and office secretary about choir, they are both very nice and apologetic. Krista is in tears and upset so I tell them I will call in the morning to see about pulling her out of choir.  They couldn't find the VP and the principal had just left or they both would have gotten a piece of my mind. I've about had it with Alabama public schools, we are exploring our options. 
We also got a call from the neurologist today and her appointment was pushed back until Feb 18. I tried calling the psychologist back as well and surprise surprise, no one got back to me. UGH. I am not liking alabama today, I don't know why the heck anyone would actually choose and want to live here! Their schools and health care systems are crap! 

Krista had a great day today but is paying for it this afternoon. I'm not sure if her muscles are tired or what but she's had a few of the full body paralysis and couldn't talk during it. She managed to stay at school all day and even went to PE where she scored a goal in basketball and won the game for her team! She was feeling so good that she wanted to try to stay for show choir practice. I let her but knew she was pushing it. She wound up calling me to go get her right as show choir started and it's been down hill from there. We did her detox routine tonight and she seems to be doing a bit better now. 
It's been a long day and I'm so tired, we will all be in bed early tonight.  

Krista didn't make it even half a day at school today. She felt really hot and nauseous this morning. I ran out of the fish oil supplements and for the last two days she hasn't done well. I went out and bought some more this morning. I really think they help her. She seemed to do better after eating a couple. She has new symptoms this afternoon, her face twitching is different and worse now. She tries to hold the full body seizuer things in and it seems to spread to her face when she's successful. She is at least feeling better now and only had a couple of the full body episodes so far. We will continue with the detox and hope it works at least a little. She is doing great with her new diet. If she even has a little bit of sugar it sends her into convulsions so she's stayed a away from it for the most part. 
I'm still trying to make the appointment with the psychologist and physical therapist. Neither have gotten back to me yet. I've will call agin in the morning. Really hoping she stays the for the whole school day tommrrow and the symptoms ease up a bit. 

:(

Things are the same. I don't see a significant improvement yet. I hope she makes it through the school day tommrrow. We try to keep everything as normal as possible for her but none of this is really "normal". Sigh. 

It is amazing how much people can change from day to day. I won't get into a whole vaccine debate here but I now believe some vaccines are not worth the risk. We still will vax our kids but none will get the gardasil vaccine. The experts are wrong with this one and it really does more harm than good. I no longer trust mainstream doctors to do what's best for my family. They are limited as to what they can do and what they know. When they can't figure something out it must be psychological in nature, conversion disorder, in this instance, is a joke. It's bringing women back to the 1800's with hysteria diagnoses, I'm sorry but there is some physical reason as to why these girls have muscle twitches, seizure like symptoms, paralysis etc. If only doctors would keep looking until they find out the reason rather than giving up all together. 

We saw the naturopathic doctor Friday and she completely believes me. She talked with other doctors who have seen this type of reaction in gardasil victims and got their advice as to what will help as well.  We are trying a complete detox to get this out of her system and I hope it works. 

All the people who might think we are crazy, over exaggerating, she's faking it, or whatever  I get it. I read some vaccine stories and thought the same until I actually became one of the stories. We were a normal family, just like you until this happened to us. The facts are it did happen, it was the vaccine and if it was your son or daughter you would be doing whatever it takes to help them as well. I pray no one else has to go through what we are going through because I wouldn't wish this on my worst enemy. There is something seriously wrong with that gardasil vaccine and I hope the medical community figures it out and pulls it from the market before another child gets hurt.

Krista did awesome at school today! Didn't visit the nurse once and shook very little! All the seizure like symptoms came back this afternoon though. We did have a pretty stressful afternoon, our car got stuck in the mud for two hours, we had to rush to my other daughters kindergarten round up and by the end of all that we were starving so we went out to eat. We did too much for her and she's had quite a few episodes tonight. I kind of got my hopes up that this was ending, guess it's not. I still think the fish oil chews are helping a lot, it helped her get through her day today. We see he naturopathic doctor tomorrow and I'm looking forward to it. I think she's the only one who might actually believe me. I don't have high hopes for the neurologist but we will see. 

Things were way too crazy today and there were other stressors on top of it all that I won't get into here but needless to say, I pray things calm down soon. I'm not sure how much more crazy I can take! Bring on the weekend, I need sleep! 

Thursday

Krista didn't have any shaking or seizures that I could see this morning. She's still at school and I haven't heard from her yet. I hope this is all ending and she will be back to her normal self. Just going to post some research info for my own recordes here, there are a ton of reports of seizures ( and conversion disorder) after receiving the gardasil vaccine out there. 

Posting a few links and stories and I'll be adding to the list when I have more time: 

http://ecochildsplay.com/2009/09/15/the-girls-of-gardasil-brittneys-story/

2. “Hi. My 17 year old daughter’s story is similar. She had her second Gardasil vaccination during the end of January 2008. During the month of February and March, she had abdominal problems. Beginning on March 30th, she had seizures. She had a CT of the head, MRI of the brain, EEG, 24 hour EEG and as I type this note, she are in the epilepsy center at Jefferson Hospital in Philadelphia and the doctor just came in to tell me that every test is coming back normal and that my daughter is having “stress” seizures. My daughter has no more stress than any other 17 year old girl does.
I related to the doctor my thoughts pertaining to Gardasil and I feel as though he has dismissed my idea.
I have found some many stories similar to yours and my daughter’s but I believe because Gardasil is so new, nothing is coming out yet about it.
If anyone has any other information, please advise!! We are desperate here in Philadelphia.
Jodi”

2008 at 6:26 PM by Jodee J.

I'm so relieved that I found this website. My 23-year old daughter (who was 22 at the time of her 3rd injection) had a grand mal seizure while driving to work at 9:00 a.m on 28 November 2007, exactly 7 days following her 3rd vaccination. She has had no history of seizure nor has anyone in our family on either her paternal or maternal sides. Luckily prior to the seizure her vision began changing so she slowed down and began to pull over to the side of the roadway. She was traveling in a suburban area so her speed was in the 25 to 30 mph range. She doesn't remember anything after she began to pull over. She wasn't wearing a seat belt and she slumped down in her seat and evidently her body weight hit the accelerator. Because she was pulling over at the time of the onset of her seizure her SUV hit a telephone pole but would have ran into the side of a house if the pole wouldn't have been in her line of travel. Her SUV then bounced off the pole and entered a 4 way intersection (thank God another driver with the right-of-way noticed and stopped) and then her car ran into an autobody shop hitting a repaired sedan and running up the side of a boat before stopping. A County Sheriff who was radaring noticed her SUV coming through the intersection without a driver and he was there immediately upon the final impact. She completely lost her bowels and was foaming at the mouth when the sheriff arrived. She was taken by ambulance to the hospital where a battery of tests was administered following a seizure and nothing was found outside of the range of normal. Luckily she only sustained some bruising from the impacts but her car was a total loss. She was referred to a neurologist who has put her on anti-seizure medication. Since the initial seizure she has had 5 more seizures and 2 additional ambulance rides. Her last seizure was in May 2008, and at that time the neurologist changed her medication. To date she has not had anymore seizures, but continues to be take medication daily with some side effects, e.g., trembling, hair loss, and the potential side effect of horrific birth defects if becoming pregnant. She has had an EEG, MRI, blood tests, etc., and no cause has been identified. She also has a low BMI which I noticed seems to be a link that has been identified in earlier posts. I would advise any parent or girl over 18 to think very seriously before even considering getting this immunization. The risks far outweigh the benefits. My daughter has been lucky - she could have very well ended her life or some elses during her first seizure. She is once again on driving restriction, per the laws in our State which mandate 90-days in which the driver's license must be surrendered, and the driver must remain seizure free before the license will be reinstated. This drug is NOT safe!!! With all of these occurences someone (Merck / FDA) MUST BE HELD ACCOUNTABLE!

My 12 year old daughter had a seizure Jan 2008 after receing her 3 Gardisil shots and another one this week almost exactly 6 months later. We have no history of seizures in the family and the neurologist cannot find any reason why they are occurring. I am thankful to hear the other similar stories. Where do we go from here? Is some type of litigation forming

posted on Sunday, July 27, 2008 at 1:20 PM by shawna

As I wrote prior, my 12 year old daughter has had 2 of the 3 HPV shots. She has experienced 3 seizures within a 3 month period. The Neurologist just told us both her EEG and MRI are clean..nothing wrong. We started her on anti-seisure meds about 10 days ago, very low dose. She started experiencing "weird" feelings in her feet, and now has started happening coming up her leg. She gets dizzy/lightheaded and nautious. Basically the Neurologist up'd the meds and now she is a limp noodle that can't hardly get out of bed, can't eat and has to be forced to drink. As a parent, I don't know what to do next. The doctors aren't listening to us about the vaccines, and this Neurologist acts like this is just something my daughter needs to deal with in life, and "see you in 4 months..keep taking the meds". I am so extremely frustrated and worried about my daughter. Has anyone else experienced this with the anti-seisure meds...and what are your Neurologists saying?  

http://www.nvic.org/vaccines-and-diseases/HPV/gardasilaug82006.aspx

http://www.medalerts.org/vaersdb/findfield.php?IDNUMBER=411241&WAYBACKHISTORY=ON

She hasn't has an seizure like symptoms tonight. Maybe this is getting a bit better? I pray it is. 

Looked up conversion disorder/ Gardasil and found a lot of other girls were diagnosed with conversion disorder after receiving the vaccine as well. The link below is just one of several that I've found:

 http://patientsville.com/vaccines/hpv4/conversion-disorder-hpv-gardasil-2008.htm

I still don't think conversion disorder is what she has because she hasnt been sexually or physically abused or had any MAJOR stressors right before she got the Gardasil vaccine. She doesn't have any PTSD. I'll take her to the psychologist and physical therapy like the doctors suggest but I know they are wrong. 

I'd be willing to bet that this has something to do with these two things: 

1. Autoimmunity
2. Metal-Induced Immune System Hypersensitivity

The vaccine made her immune system go crazy and hopefully this is all tempory and her body will figure it all out in time. Im REALLY hoping the  naturopathic doctor will believe me. I'm doubting the neurologist will but we'll see. I just want this all to end and Krista to go back to the way she was before the vaccine.   

EEG results were normal. Her pediatrician is trying to tell me it's psychological, it's not. I know its not. There is something wrong with her nervous system. If the neurologist doesn't believe me I don't know what I will do. I had to pick her up from school today bc she wouldn't stop shaking and her face kept seizing. This all started hours after the damn gardasil vaccine. The vaccine did something to her and no doctor will believe me. It's very hard not to completely break down and lose hope right now. There has to be someone who will help us figure out what is causing her seizures and help us control them.

 No new symptoms yet today, that's the only good thing. 

I hate this. 

Tuesday

Krista had a really good day. She went to all her classes (except PE) and made it through the whole school day! She only had to go to the nurses office once. She had the face seizures and arm shakes most of the day but no full body ones until tonight. She's had two full body ones so far tonight with the paralysis. She's really tired so I bet there will be more but overall this has been a great day. Only one new symptom this morning and that was a hip shake thing. It just happened once so far. 

I'm very proud of her for being so brave at school and making it the whole day! She's super strong! 

Hopefully things are settling down a bit and her body will start to heal. I still haven't found a new pediatrician or gotten the results from the EEG yet. I'll call the old pediatrician tommrow. I'm sure the are sick of hearing from me, especially after our last conversation but I don't care. I'll keep bother them until I find a new pediatrician or get some answers. 

Monday

New symptoms already and we had a rough night. I dropped Krista off at school and called the pediatrician to let her know about everything going on and to ask if Krista should go back in. I was basically told there was nothing they could do except have her start physical therapy! She doesn't need physical therapy!!! The nurse said the neurologist could help us and they couldn't do anything! WTF??? We cant see the neurologist until feb 11th!!!  So if these seizures are giving her brain damage I just have to watch it happen until Feb 11th???? The nurse then tells me that a lot children have seizures all the time and to trust the doctor. OMFG! Trust them?? They said the Gardasil vaccine had NO side effects and it's ruined my daughters life! I'm not going to ever trust them! Off to find a new pediatrician because this is unbelievable. 

Sunday

Krista did pretty good today. She had maybe four or five big episodes and a few minor ones with her eyes fluttering. New symptom for today, this lip smacking thing she does, looks like a fish, after she has the seizure thing in her face. (I'm not sure what I should be calling them, they look like seizures but she never loses consciousness so I don't know what they are) Other new symptom both legs and arms get  temporarily paralyzed all at the same time. It was just legs or just arms before today. 

We did make it out of the house for lunch today, sushi! All the girls love sushi. I had researched what she could and couldn't have before we went and I also asked about the gluten free items while we were there. It all worked out and she had maybe one small episode. I'm not sure if the no gluten thing is working or not but I now know for sure the no sugar thing is, not sure if I mentioned that already or not but I made her a gluten free chocolate cake yesterday and let her have a small piece. She went crazy with episodes right after she ate it. Today she just got fruit/nuts for snacks, no dairy, gluten free meals and no sugar and she's done great. Diet might have something to do with it who knows. We see the naturopathic doctor on Friday and I'm hoping she will help me out with Krista's diet and vitimans.

  

I'm also hoping we get the results of the EEG this week. The paralizing episodes only last for thirty to forty seconds but they scare me. I don't really want her spending all day at school with that going on. I think she will go to school to do her work and I'll pick her up at noon or so just until we can talk to the neurologist. We don't see him until Feb 11th I think. I will meet with her principal to try to work some of this out on Tuesday. I hope they understand and allow her to come in for half a day just until we figure out what the heck is going on. 

Anyway, that's it for now. Nighttime is always the worst for her so I'm hoping tonight goes as smoothly as today went! Thanks for all the the thoughts and prayers, we appreciate them! 

New symptom

She feels the vibrations in her hands/arms and then can't move them for 30 seconds. When the hell will these new symptoms stop??? 

How this all began....

I just realized I never told the story about how this all began. Krista is rarely sick. (We hadn't been to our pediatrician since we moved here in June and that was for a well check up.) We went to the OBGYN because she was having heavy menstrual cycles, really heavy. They had her tested for anemia and she was fine. While there the doctor insisted we get the Gardasil vaccine, even to the point of taking instruments out to "scare" Krista. I asked the doctor if there was any possible side effects bc she had been through enough that day and the doctor said none. I told the doctor I'd read horror stories about Gardasil online and I wasn't sure. The doctor assured me she'd given hundreds of vaccines and never had a single issue. I gave in and that's a decision I will regret forever. I almost told the doctor forget it, she's been through enough today, but I didn't. I hate myself for allowing that poison in her body. After krista first received the Gardasil vaccine she started having symptoms on the car ride home. Her lower back, around her spine, hurt really bad. She also had a headache, joint pain and a slight fever. I called the doctor and they said it was normal. 

The next day, the fever was gone but she had severe joint pain. I told her it would be ok, gave her Advil and she went to school. That after noon she texted from the bus to say her head hurt really bad and she had to go to the nurses office during 8th period. She said it still hurt now along with her joints. I again called the OBGYN office, they said this wasn't normal and the pain shouldn't last that long. I decided to get her in to her pediatricians office and made an appt for the next day. Krista then texts me from the bus saying her leg won't stop moving. "It's shaking and won't stop". I told her it must have fallen asleep and to relax. It stopped and I forgot about it. I was more concerned about the constant joint pain and headaches at this point. 

The next day we go to her pediatricians office bright and early at 8:30am. While in the room waiting for the doctor she has her first shaking episode that I witness. Her left foot starts shaking, then her leg. I get the nurse and try not to freak out. The nurse sees it and 

says the doctor will be in shortly. By the time the doctor comes in, I've gone to get the nurse three more times bc her arms are shaking as well as her legs. Krista is freaking out bc this is new and has never happened before and I'm really worried too but trying to keep it together. The doctor examines her and tries to calm her down but we are way past that now, she hyperventilates and an ambulance is called. 
At the ER they calm her down, check her out, do a brain X-ray and then tell me the joint pain is from the gardasil vaccine but the shaking episodes are psychopathic. The Brian X-Ray was perfectly normal. I,of course lose it because I know that this is NOT psychosomatic! They get two ER doctors to talk to me, tell me this is a good thing and refuse to let me talk to a neurologist. After I raise hell, insisting it's the gardasil vaccine and this isn't normal for her or psychosomatic, they send us on our way. 
Monday morning we are back in the pediatricians office with brand new symptoms. They run a ton of blood tests (all of which 
end up coming back normal) refer us to a neurologist and set up an EEG appointment. 

Since all of this started, new symptoms have appeared daily including seizure like full body spasms, the eye flutters(she can't see until these are over), jaw  /tongue twitching and the head vibrations with the neck paralysis just to name a few. I'm praying the EEG found something, we figure out what is causing this and fix it! We won't get the results until a week from now. I will be calling daily. I pray she has no new symptoms and this whole thing either stars to get better or plateaus. I've been sleeping with her every night keeping an eye on her for any new symptoms and to make sure she's ok. The episodes seem to be worse at night and in times of stress for her. Anyway, that's the whole story and where we are now. Hopefully we get answers soon.

EEG update

I assume the EEG went well. The tech said they got a lot of good info whatever that means. I'm guessing something did show up on the scan though bc krista was having one of her newer episodes, when her head vibrates and she can't move her neck, and the tech suddenly said "what's going on? are you ok?" I'd be willing to bet something major showed up on the scan. I'm glad that people will finally believe she's not making any of this up, but scared to know what it is. I hope it's something that can be controlled at least and isn't life threatening. We are documenting everything and I hope it's officially connected to gardasil and they pull that awful vaccine off the market. I'm convinced she got some kind of poisoning that triggered or caused all of this!! 
In the mean time, we have to wait a week for the results and then until February to see the neurologist. I pray there are NO more symptoms and everything either eases up or plateaus. Please keep the prayers coming! 

New symptoms last night/this morning tongue spasms, jaw spasms (both with side to side motions) then just now she felt a vibration in her head and couldn't move her neck for 10-15 seconds. Right when I think I figure out what this is, it adds new symptoms. Ugh. 

She has an EEG today at noon but we won't  get to talk to the neurologist, just the technicians. We couldn't get in with a neurologist until April!!! I will be doing everything in my power today, including raising hell, to move that appointment WAY up and get the neurologist that I believe she needs to see. 

How can she live with all of these new symptoms happening daily?! She can't function like this and someone needs to help us.  Thank god I re filled my Xanax bc this is too much!!! 

The benefits of that damn gardasil vaccine 100% do NOT outweigh the risks from it! 

Day 11 9:00

New symptom: tongue spasms 

Wondering if this could be dystonia. She has a lot of the symptoms. Whatever this turns out to be the gardasil vaccine triggered and/or caused it, I know that for a fact. 

http://www.medicinenet.com/dystonia/article.htm

• Paroxysmal dystonia - muscle spasms and abnormal body movements only happen at specific moments; otherwise the patient has no symptoms at all (at other times). It is a rare type of dystonia.
  
  Signs of paroxysmal dystonia may resemble those of epilepsy during a seizure (fit). When symptoms come on suddenly, they are known as an attack. Only the muscles are affected during an attack. The patient does not lose consciousness, and will be aware of his/her surroundings, unlike a patient with epilepsy. An attack can last for just a few minutes; and in some cases may persist for several hours. The following triggers may bring on an attack:
  • Mental stress
  • Tiredness (fatigue)
  • Consuming alcoholic beverages
  • Consuming coffee
  • A sudden movement.

Day 11

I kept Krista home today because we didn't have that great of a night. She was restless and didn't sleep well. After yesterday afternoon, I don't need her pushing it right now. 

The doctor called with the blood tests and they were all normal. We go for her EEG tommrow. She's still having the "normal" episodes, shakes, headaches, eye flutters, mood changes, joint pain before and after an episode, but we didn't have a nose bleed yet today. I'm going to relax on her diet changes except for gluten, dairy and caffeine. She can have organic cookies for a snack now. We will see if that even makes a difference. I meet with the naturopathic doctor next Friday and have talked to her a few times on the phone already. Maybe she can help. I hope someone can help, soon. 

Annnnd of course the neurologist we get assigned to has the worst reviews of all of them. Why? Why? Why? Ugh. I have a bad feeling about this. 

Day10 afternoon

Well I knew it was too good to be true. Krista made it at school until almost 2 and even went to one class instead of sitting in the ISS room. I was so proud of her. I had a feeling she was over doing it though. This afternoon was horrible. She had major bursts of anger, like over nothing. She got really upset and a new symptom came through, nosebleed, both nostrils at once. The place where she got the shot also turned red and started itching while she was upset. She said she couldn't help getting angry and just wanted to scream. I've read about this in other gardasil victims and was hoping it wouldn't happen to her. I foolishly thought things were getting just a little bit better. We take one step forward and ten back. She also had her shakes and a few episodes while we were in the car. I think she did too much today and I'm really considering keeping her home and making her lie in bed all day tommrow to rest. Maybe she is trying to do too much too soon and her body needs rest to heal or try to heal. I swear if that neurologist tries to tell me this is all psychosomatic I will f'ing lose it on him. I can't  even write anymore bc I'm so pissed off at everything right now. :( 

Day 10

9:11AM-This morning went ok. I wish I could let her sleep in longer. She tosses and turns all night. She has a few spasms during the night and I think it's affecting her sleep. She doesn't really wake up but moans and moves around a lot. 

She's texting me from school now, she had one episode but didnt fall on the floor and is ok. I want to run there and pick her up. :( I told her we should ease back into school so as soon as she has a lot of episodes in a row or feels like she can't handle it, to call me to pick her up. Hopefully this day will go smoothly. We remembered all of her vitamins too, she's on A, B6, D and the fish oil chew. That and the "natural calm" at night seems to be helping. I'm proud of her for not eating any sugar or caffeine too, she was a sugar junkie! She's doing so good on the diet! 

 I'm looking up aluminum poisoning now and I want her tested. NVIC called last night with a lot of interesting info. I gave them the lot number of the Gardasil vaccine and they will check to see if it's from the old batch or new batch of the vaccine. The new batch that was just released has something like two to three times as much aluminum than the old batch. That's scary to me. Now, we are NOT anti vax people. My children have has all the vaccines they recommend except for the flu shot because we would have to get it on base and we always would forget. They never even had so much of a fever with any of them. I believe there is something seriously wrong with the Gardasil vaccine. There are so many stories of girls with symptoms just like Krista's. A lot are worse than hers and I'm thankful these spasms are seizure like and not full blown seizures. I hope we can find a doctor that will give us answers soon. Meanwhile, back to researching. I may not be a doctor but I can read and comprehend just fine :) 

10:00AM she made it to 10, no more texts yet. I'm dying to know how she's doing and what she's doing but she said she was fine on the last text and didn't want to come home yet. Fingers crossed. 

Day 9 I think

Today didn't start off well. I tried taking Krista to school this morning. She started having episodes in the car on the way, like four of them. I knew that wasn't a good sign. When we got to the school she shook the entire time. She had shoulder twitches and arm/leg shakes. I think it was worse this morning because she was nervous and anxious about going back. She's embarrassed by all of this and who can blame her. We talked to the vice principal and the school nurse and they were both very helpful/ understanding. They told us Krista could do all of her work in the ISS room and even eat lunch there. I think for this year, until we get this figured out, that's a great idea. There are very few kids in there and one teacher. Although she will be missing her class lectures,she will get all of the work and the teacher will help her if needed. Since in the majority of her classes they are covering things she's already learned at MA in colorado, I think this will work. Math is the only subject I'm worried about because it's not her strong point. They said once she gets comfortable she can go to class whenever she wants. Of course after we left the school, she stopped shaking and was calm for a while. If she gets scared or nervous it acts up big time. She will have to learn to relax I guess. 

Once we got home a new symptom showed up, eye twitches/flutters/spasms I don't know what to call them, flutters I guess is the best word. I started to freak out a bit bc it looked freaking scary, like everything else, but kept it together for her. She didn't seem too upset about it. She's a trooper. She's only a little upset after it's over and the pain sets in. She's almost always in good spirits. Anyway, I called children's hospital and asked if they could move up the EEG due to the new symptoms she seems to get daily. They moved it to this Friday, TG. After I got over the flutter eye shock ( she would laugh if she read that because she loves "flutter shy" on MLP) we had a better day. I made an appointment with a Naturopathic Doctor in Birmingham. I've had a few people suggest we see one. My husband won't care for this but I'm going to try all options. She will get Krista on a diet plan that will help her nervous system/immune system and anything else that might need fixing. I think the vaccine triggered some kind of autoimmune respose in her body, like the toxins affected her spinal cord. I'll be very surprised if they actually find something on the EEG. That's just my gut feeling and I'm no doctor, so like I said, we are going to explore all options and a I don't believe the Naturopathic Doctor will hurt. 

I'm also talking to a lady (Robin) over email whose daughter went through this five years ago. She received two vaccinations for HPV and her symptoms are almost identical to Krista's. Robin is so nice and understanding. She always gets back to me right away and I'm thankful I have her to talk to. She said her daughter had the flutter eye thing too and that this will all just take some time to ease up a bit. Her daughter is a lot better now than she was back then but she had to completely change her lifestyle. Krista has already given up sugar, caffeine, gluten and we are working on dairy. We are all going to make healthier life style changes, like I keep saying over and over to my husband, it can't hurt, right?! Hopefully she will have a good night tonight. I'm going to try the natural calm again and we tried Epsom salts in her bath. Fingers crossed! :) 

Day 8

The CDC called while I was at the doctors with krista. For them to call back that fast (we filled out the VAERS form last Friday) and on a federal holiday tells me that something is up with this vaccine. They wouldn't confirm there was a bad batch, just that they were having an increase of adverse reactions. 

Interesting. 

The doctor ran tests and set us up for an appoint at children's hospital with a neurologist. They had to take blood and she got stressed. I think that's why she had mini episodes at the doctors then two on the way home. One was at the store and she fell to her knees. We just start singing shake it off and that makes her laugh. Keeping her calm and distracted is key I think. It just gets worse, like anything else, when she's super upset. I hope that's it for today but I know it's probably not. Night time has been the worst lately. I hope she gets sleep and can get through school Tuesday. 

Update: tonight was awful. (Side note, when I refer to the "episode" I mean the full body, "clonic seizures". They look most like clonic seizures than anything else I can find on the web) She had at least 15 episodes maybe more I lost count. It seems to get worse when her body starts to rest. I made chris run out and get "natural calm" which helped to calm her down but she had two more episodes after drinking it. It seemed to help some. I'm going to school with her in the morning to meet with the nurse, principal, counselor and hopefully teachers. We will see how long she will last. She's usually in good spirits and ok in the mornings. I'm just worried that with PE and the stress of worrying if she'll have another episode, she won't be ok by the afternoon. We forgot to take her vitimans A and D yesterday and she had cheese, wonder if any of that made a difference. We are trying to stick to the diet but it's so hard right now. I will have to remember everything tomorrow. I hope this vaccine somehow can work it's way out of her system, SOON. 

Day 7

Today was a bit better than yesterday. Krista made it through religion with few seizure like episodes. She had a shoulder shake and hand/arm shake and that was it. She was fine all afternoon until about 3:30. She had an all body spasm for about three min. After that she only had a few shakes, which she didn't notice but I did, until just now when she had another all body shake. She is finding it hard to breath during the seizure like all body shakes which has me concerned. Maybe a psychologist might be able to help her calm herself and breath during the shakes. I, in no way, think this is psychosomatic but any help we can get with it I will gladly accept!
I'm so scared about her going back to school Tuesday. I hope the doctor doesn't just blow us off tomorrow and actually listens and tries to help. Krista is still in pretty good spirits but I know she's scared that she will have an all body spasm at school.
I've been talking to another mom, whose little girl went though this five years ago, on email and she recommended we go gluten free, dairy free, get her on vitamins A and D and get her on this shake natural something, I can't remember the name but I ordered it. It has magnesium that she says helps a lot. Krista only had one shot and is reacting like this but her daughter had all three. I wonder why it affected krista this severely with one. I'm thankful she doesn't have paralysis or any other more severe symptoms. If it wasn't for the full body episodes we could handle this ok. I hope those ease up or stop soon. I will be sleeping in her room tonight at least until early morning. I'd hate for her to feel alone and be sleeping down stairs if she has another episode. I wish I could go back in time and say no to that damn vaccine. Edited to add: she's had at least five more full body episodes. These were more violent than the rest but she stayed calm and we got through them. She's sleeping now and I pray to God that she will sleep with no more issues for the rest of the night. 

Almost one week after the gardasil shot

It's been almost a week since Krista got the Gardasil Vaccine. She has had the worst of her episodes last night after I gave her Advil for her headache and joint aches that were keeping her up. Her "normal" arm and leg twitching turned into seizure like twitching, her entire body shook. It happened about ten times, one after another, until if finally stopped and she fell asleep. I watched her sleep for a while and she twitched a little, in her leg, off and on before stopping for most of the night. She's ok this morning with just mild twitching in her arm so far. My husband is starting to believe it's psychological and that breaks my heart bc it's not. It's true she is worse and twitches right away if we bring it up but no child would no this willingly for attention or anything else. It's killing me that no one believes me or her. I hate this.