and here is the mixture of supplements

So, the rest of the weekend was good. I purchased the supplements at GNC and Clovers ~ he said I could order online, but of course I wanted to get her started ASAP.
Here is what she will be taking for 30 days, then she will check back in with Dr. B. The powder for the drinks are mixed with Orange Juice. She didn't complain much. LOL He kept saying come back in thirty days and tell me how you feel. Oh... he reminded me of myself.. just give me 30 days! But I usually said 10 days.... baby steps. I REALLY hope this helps her a LOT!

Morning drink:

tryptophan 500-1000mg
Taurine 1/3 dose (usually 1/3 teaspoon)
Ribose 1 teaspoon
Creatine monohydrate 1/3 dose (usually 1/3 teaspoon)
Arginine 2 grams
Stevia 1 scoop to sweeten the mix (scoop is very very small)
Evening Drink:
Tyrosine 500-1000mg
Ornithine 1000mg
Also: (pill form)
Primrose 1000-2000mg daily
Lipoic Acid 1000-1500mg daily
HTP 50mg at bedtime
Calcium/Magnesium 1000mg daily
Probiotic kyodophiles as directed
Fish Oil 2000-4000mg daily
Digestive enzymes as directed

an added benefit of posting these supplements ~ I've already lost the paper the DR wrote, so I'll have a back up plan here on the blog. ♥

Ah.. Wish I could say GOOD DAY....

Wow. Gonna be a short post. I'm mentally, physically and emotionally exhausted. Today I made an appointment with my primary care DR to see Steffanee. He had her do blood work, keep a food journal and take her temp every morning before coming into see him. I actually was taking her to him to help her get faith back in Medical Doctors and have him refer her to an  Endocrinologist. SOOO....
I take off work today, also had other appointments to make. I pick her up at Peak Physical Therapy, where she is putting in her hours shadowing Angie, the dear Therapist that helped her. So, when I pick her up, I see that glazed over look in her eyes. She gets in the car, and I can tell she doesn't feel good. She says her neck keeps locking up on her. Yes, I would say it does.. her neck is twitching ( for lack of a better word) jerking, and it looks very uncomfortable. So.. good thing we are going to the DR. right? We go, they take us back, Diane, his nurse asks Steff all the usual questions, and asks how she feels today. She answered FINE. Nothing was fine about her, but I didn't push it. Nurse left, Steff layed down, seemed to sleep a bit, but did a lot of jerking. Later said her body had electricity running through it. For a while she looked really glazed over ~ brain fog ~ after she got up, she looked much better. Watching your child (I know she's 19), struggle through something like that is very difficult. There is nothing you can do, and if you do try.. well, it seems you never do the right thing. Doesn't matter how hard you try. So, after the nap she looks better.
Dr. Bynum comes in, addresses her. I would definitely say he should have restored faith with DRS. He was very direct, understanding and compassionate with what she has been through for the last TWO years. He told us he has taken a back seat, but has been aware of what she has dealt with and how she has been doing. I believe this. I get an email every now and then from his nurse, asking about her. SO...
He handles her with baby gloves, but goes right to the questioning. Her poop habits. Her food habits. Her morning temp, Questions that have never been asked. Then he continues to say :  it's her digestive system.
She probably has always had digestive (and YES, she has) problems, minor until the nasty Gardasil shot came along, then it kicked the digestive problems into high gear. She doesn't get the nutrients out of her food. So, although she is a relative good eater, her body still doesn't get what it needs. Since the shot, her immune system is fighting her body. So, he acknowledged the shot, I didn't mention it. She was good with that. We cried quite a bit. He gets it. He asked if she felt electricity going through her body, he told her he understood the bolts of electricity going through her head. Again, we cried. Soo...
He took her off all her supplements and has started new ones. She has to drink a special mix in the AM and PM, plus take quite a bit of special supplements that I just purchased at GNC and Clovers. We are heading down a new road. He also takes many of these, so, again, I think he gets it. She just came home for the weekend. We start tonight. I'll list them and go into it more later, but for now, I'm out. Except...
Family and friends that know me... you know I go shopping when I'm stressed out and cannot handle much more. Not sure why... but that's what I do. Yes, I did. Kohl's loves me today. I'll just leave it at that. ♥ Dave on the other hand, well, the packages are in the car. LOL
Take a moment to say a little prayer for Steff and all the girls suffering through these adverse effects. It is a very difficult road to travel. Sometimes I wonder if our lives will ever be the same.

One More Girl Unveils Truth behind HPV Vaccine Travesty - Care2 News Network

One More Girl Unveils Truth behind HPV Vaccine Travesty - Care2 News Network

ONE MORE GIRL.....

http://www.kickstarter.com/projects/1995527181/one-more-girl-documentary

A project to save lives and educate about the damage GARDASIL has done. Please watch it.

She Seems Good To Go...

The Bad Night Post should have been posted on Friday. Today is Saturday, seems she is doing okay. She thinks I over react with these episodes, and well, I probably do. It was a short one, and not nearly as severe as they have been. BUT I want them to GO AWAY and never come back. I want her body to be able to handle New Years Celebration, cheating with a little gluten and well, the things most college kids do.
She came home last night late, hit the sack and slept in today. She made  GF pizza and got ready for work, which I must say, she looked amazing. One would NEVER know by looking at her that she has any medical problems. So, my next idea.... I'm going to try to find a local Nutritionist and see if that would help. Dr. Amanda is helping her a lot with her back and neck, but I think she needs more... We'll see. I'm off to watch a movie and escape the real world for a bit....

A Bad night....

So, I started to type on FB, then remembered how pissed she would be. LOL She's been working both jobs every single day this week. Just happens that the office job she is doing with Peds Orthopeds is moving this week, so they need her help.. it's usually just entering codes into the computer, this week it's physical labor, everyday. AND the other host at Jack's went on a 7 day Cruise.. so when she leaves the hospital, she heads to Jacks and gets home around 11, to get up and start all over again. Today is the last day for both. THANK Goodness. I've watched her wear down all week.


So here's the smiLe for you. She screamed, jerked, twisted and cried for quite a while. Dave & I heard her and came running. I ended up sleeping on her floor once it stopped. She gets up this morning and against my wishes, gets ready for work and acts like nothing happened. I make her talk about it, trying to figure out what happened. We did. I send a text to her boss (friend of mine) about her episodes. I get one back.

"She told me she just overslept. She's laughing smiling and bouncing off the walls, you would never know she had a rough night." and here I sit. Called in vacation time, no sleep and worried to death. Her life continues to go on, mine stops. Dave and I both got sick to our stomaches last night when it was happening. I'm sure he's one tired guy today too. Ugh. After the episodes, she goes off to sleep ~ we sit and worry and worry and wonder WTH??? Okay, there's your blog for the day!!

Here's Our College Girl....

This is December 2010. Steff's medical problems started in Feb 2009. Well, actually before that, but the severe part started in Feb. Prior to Feb, she complained of knee pain, her joints and muscles hurting every single day. Her low back pain was horrible. Then on Feb 2, 2009, our lives were turned upside down with the non epileptic seizures. Many thanks to the Dystonia Clinic in Maryland that asked me if our girl had gotten the Gardasil shots, when I called for help. My answer was Yes, all three. It was then that it all started falling together. Today, there is much more information on the internet & FaceBook about our girls. The Gardasil Girls. One just never knows. You think you are doing the right thing, by getting them vaccinated, then it turns your world upside down. SO, she's better, she's off to college, but not w/o struggles. This has been a life changing experience for us. She is the youngest of Four. All Four received every vaccine that was recommended. Today would I do that with my babies? ABSOLUTELY NOT! I cringe when I hear a mom talk about it. How can you know if your child/baby can handle the vaccine?

THE SNOWMAN

Bryce, Snowman, Steff & Josh




Phillip and his family had not arrived yet, or they would have been right in there helping to make the snowman!!



Christmas Eve 2010

It's NOW 2011...

Another year gone by, hoping to see as much improvement in 2011 as we did in 2010 with Steff's health. She finished her first semester ~ not too shabby on the grades. I was expecting the worst..... LOL .. yep, that's just me. Better to be surprised, than to be disappointed. LOL No, really, I knew she was having trouble with reading and well, it's probably hard to comprehend it if you can't read it. So, I was pleasantly surprised that the grades were ALL pulled up with finals. She was very proud. She's signed up for next semester, but I don't believe she's taking as many hours. First semester she took 15 and now she's taking 12 hours. Gee. With Rushing, Homecoming and joining the Sorority, seems she has that backward. But, she made it. Her GPA is not as high as she would like, but now that she's getting the hang of how College works, hopefully she will pull it up. Type "A" personality. = )
She's still home on break, I believe she goes back around the 21st. I have enjoyed having her here. She is still working both jobs through her break, which makes me smiLe. Every single penny going into the bank. = ) Funny Girl. Funny Girl.
We had a GREAT Christmas, the snow on Christmas Eve was a GREAT thing to wake up to. The kids... the adult kids.. built an awesome snowman! If I can remember how to put pics on here, I'll attach it. By New Years Eve, he was gone, just a scarf and several sticks laying in the mud! LOL

No Posting is Good News = )

LOL Yep, no posting on the blog is usually good news. Steff came home for Thanksgiving, spent a week here. Of course, she didn't just stay here.. she was on the move. LOL Seems those glasses are making a difference in the desire to read. She read quite a bit.. finished that book.. Racism without Racists. Yeah, well, I probably wouldn't want to read it either. LOL She had to do her outline for the paper on it and got a B.. yes, it does wonders to actually ReAD the book!
She seems like she is doing really well, sounds full of life and spirit again. I believe Dr. Amanda is getting her on the right path again. She gets tired, but I'm sure that part is normal. = ) I just got off the phone with her, she sounds so happy, and that my friends, makes me happy!!
So, boring as this post may be.. it's a good one! So, tomorrow is Friday.. enjoy your weekends!!

LOVING THE NEW DR

We went to Dr. Amanda and was very impressed with her. I went with Steff on the first 2 visits, after that, she's on her own. AND it seems to be making a difference. With Dr. Mark, Steff was in denial about it being Gardasil, so I had to push and push to get her to do what he said. HE wanted to talk and deal with her.. nothing doing. She wasn't even SURE it was Gardasil, and YOU don't even know it is. Okay, child, I give up on that battle, now let's get better, regardless what we each feel it is, HE is making you better. UGH... that was a rough road. So, after that experience, I decided, she's 19 and will do what Dr. Amanda says if she wants to feel good. Mission accomplished. = ) She takes her meds, no begging, she drinks her carrot juice.. okay, complaining there, but I don't push! LOL ALL that she has been through, she can see what happens when she veers from the plan, or decides to have one drink of alcohol.. it tears her body down. So, long story longer, we really like the DR and we are seeing good things happen.
Steff is home for a week for Thanksgiving Break. I did take her into get her eyes checked, seems she just cannot read ~ it's too much work on her eyes. Well, guess it is!! Her vision is 20/15, but her eyes don't work together when she reads, one tries to pull away. NOPE, never noticed that. She now has reading glasses with prisms in them. She says it has made it easier to read now. BUT the book is for Sociology.. enough said. BORING!! LOL
Me? LOL I've been on a mission and will continue to be. Doesn't matter to me that my family thinks I"ve gone overboard. LOL I've been running copies of all the good articles, the flyers with the girls and stories on it, and basically any article I find informing .. and taking them to Dr and Dentist Offices, just laying them around in the waiting rooms. I hit a different OB GYN office each week. HEY! If I had found and read one of those articles, I wouldn't be blogging today. So, that is my mission. = ) INFORM, INFORM, Share & share.
I'm out, things to get done before bed.. Take Care and have a good day!!

Max II

Small Update.

Steff had a SMALL episode during one of her classes yesterday. = ( The professor had to call 911, per school rules. I worry about her everyday. At the start of school, we could not get her to come home, and she made a small amount of contact. Now, she wants to come home and we are in contact everyday. This tells me something is going on with her body ~ she doesn't know what it is, but feels something is wrong. She is back to sleeping a LOT. She has an appt with Tiger Chiro on Thursday.. hoping they can help. She LOVES college and the dorm! She also loves being in the sorority... but I do believe all this is taking a toll on a girl that has been through so much. Homecoming is over.... that will help, but now she will be rolling into finals.

Flagged Blood Results

I'm very tired and headed to bed, but wanted to touch base for just a moment. No, Steff is not doing great. She has had a few setbacks. I was looking at the results of Steff's blood test. WOW. The things that are high surprise me ~ I think she eats relatively healthy, but her blood doesn't show it. I'm going to copy/paste her flagged results, along with the normal range. I will get back to blog soon, I hope. I did make her an appointment with the Chirop at Tiger Chiro. I am looking forward to getting back on the road to getting her better. Have a good day folks.. I'm tired, webmd wore me out tonight.
LOLWBC 11.5 ~ normal is 4.0-10.5
Cholesterol, Total 192~normal is 100-169
triglycerides 237~normal is 0-149
Thyroid, T3 uptake 21~normal is 23-35
Lymphs (Absolute) 5.1~normal is 0.7-4.5
VLDL Cholesterol Cal 47~normal is 5-40
Hemoglobin Alc 5.7~normal is 4.8-5.6
Glucose, Serum 98~ normal is 65-99
I read a lot about low thyroid. I'll paste a bit of what I found. She has almost all of these symptoms... makes you wonder.
Hypothyroidism, by contrast, stems from an underproduction of thyroid hormones. Since your body's energy production requires certain amounts of thyroid hormones, a drop in hormone production leads to lower energy levels.
Signs and Symptoms You may feel tired, weak, and/or depressed. You may have dry skin and brittle nails. You may have difficulty standing cold temperatures.You may experience memory problems or trouble thinking clearly. HELLO!!You may have heavy or irregular menstrual periods.Symptoms of hypothyroidism occur slowly over time. At first you might not notice these symptoms. See your doctor if you have symptoms like these that get worse or won't go away.
So, I made an appointment with Tiger Chiropractic for next week. Hope she can help her. Ugh. It has been a LONG road and we are still traveling........... just when you think you have it solved, something else pops up....

Good Days....

So, today is June 19, and life is still good. Since we received her saliva results, Steff has been pretty much gluten free. Okay, friends/family, I'm not a dumb mom, I know she has a few cheats, so don't feel the need to tell me. LOL (FYI I DO have a friend or 2 that like to correct me) Anyway, overall, she does pretty good. She has been feeling much better & seems to have more tolerance. One evening last week, she was at a friends house, they were hungry & fixed a frozen pizza and indulged. She paid the price BIG time the next day, the day was completely wasted. She had a bad headache, stomach problems ALL day and just overall felt bad. She knew what caused it and wasn't sure it was worth it. SO, life is full of lessons. I believe one was learned ~ however, I'm very surprised it was frozen pizza (prob had a ton of additives as well), b/c she is a BIG Shakespeare Pizza fan. I wouldn't cheat with a frozen ~ I would make it worth my while on a GREAT pizza!! Kids. LOLI'm thinking that in a couple of weeks, I'll have her do the saliva test again, to see if she is making progress w/o gluten. Dr. Marks idea has always been ~heal the gut, then we will deal with the broken brain barrier. Nope, I have NOT given up on his ideas. We're still working with him, but for now are just concentrating on her gut. She still takes 3 liquids ~ B12 is one of them. I am very happy to say she seems like that "pre Gardasil" girl sometimes. I do have to make sure she eats on a regular basis ~ not counting sugar~ I know she's almost 19, but I'm the one that has to put up with her mood if her body is lacking on protein ~ I'm usually the one that gets the blunt of it. We argue over stupid stuff, then I realize she prob needs food, but we are usually WAY into an arguement over "nothing" before my light bulb goes on. I'm getting more tuned in!!So, she graduated and that was a great day. Yep, I shed a couple of tears, but I am SO happy for her. She is attending Mizzou in the Fall, staying in the dorms. I pray that all goes well. Her major is pediatric physical therapy at this point. We'll see. She took most of her basic college courses her Junior & Senior year for dual credits, so she is well on her way. I just hope she gets tuned into her body so all goes well. = )Me? I'm doing good. I'm hardly on the computer anymore, I will say that when I am, I still read stories and posts from moms with sick girls. It will always be in my heart to share and help with our experience all I can. I did purchase shirts from the TruthaboutGardasil.org ~ but I think I did it from Facebook, not sure. Anyway, I bought 3 nice T's with the website in cut out letters on the front of the shirt ~ yep, people ask questions. The shirt itself is nice, small words with a big message.I gave one of her friends one as well, she's going off to college in another city. She's been a big support through all of this. So, back to me. LOL I'm good, we're good and actually, it feels like life is good. I still pray for our girl, but she seems to be doing quite well. It is the small accomplishments in life that make me happy. I don't worry when she drives anymore, I feel okay leaving her at home alone again, I can sleep through the night w/o coming upstairs a couple of times through the night to make sure she's breathing and okay. So, yeah, I pretty much would say, life is good. = ) So, unless things go south, I probably won't feel the need to vent ~ LOL That is how this blog thing got started ~ me letting my feelings out, along with getting information out to friends/family without being on the phone all night. It has helped me more than anyone will ever know ~ this blogging thing. Plus the contacts I have made through moms reading it. So, many thanks to all of you that have helped us through this tough time in our lives... here's to hoping that Life is Good every day.. for all of us!!

Oprah Address for show suggestions!!!!

https://www.oprah.com/ownshow/plug_form.html?plug_id=3749665

This is a connection to Oprah's suggestion page for stories for her final year of shows. I am thinking if all Gardasil Moms or Girls write a suggestion from their hearts.. perhaps it will happen. Please take a moment to share with family/friends, so we can all pour our hearts out and make a difference. Thanks.

Blast from the Past

Okay, so things were going fine. On Wednesday, Steff had an episode at school. It wasn't just the tremors that we have become accustomed to, but more intense. I know she gets tired of doing this medical plan, with all the supplements and the protein drink every night. Who wouldn't?BUT after today, it proves completely that she needs to stay on it.

Leslie (comment on last post). Thank you very much. I am glad she's better, but we still have a long way to go. She has come a long way from Feb 2, 2009, and things are much better than they were then, but things are NOT like they were prior Gardasil. Her memory & thought process is not the same. So, when I say "life is good" don't think we have this all wrapped up, because we know that we still have a long way to go. I do think it is important to recognize that her health has come a long way, she's happier and life is just much easier.
So, everyone, know that it isn't over yet. We are still fighting for her health and doing the best we can. A little set back on Wednesday, that's all.

ONE year ago today.. this blog

ONE year ago today, our journey down this medical road started. I created this blog in the middle of Feb to keep family and friends posted. Today, I'm happy to say, Steff is doing much better. The episodes have calmed down to "tremors" instead of the violent seizure like episodes.
Her body lets her sleep through the night and overall, she has much improved throughout the year. Wasn't sure we would make it ~ stress and all ~ but we have. Here's to hoping and praying that next year at this time, she's off to college doing very well.
So, Life is Good in the Richardson household. = )
Positive thoughts bring positive things.......

Time to Move on...

We are progressing quite well with Dr. Mark Flannery. Steff is doing good and seems to be improving. It's still a day by day ordeal, but feel it's time to move on. So, the blogging will be finished for a while. I might check in a on monthly basis, just to document what is happening on Steff's road to recovery. So until then, we're out! and Life is Good.

Back to the Schedule

Holidays are over, back to the schedule, all the way around. Steff is tolerating the chelation very well and things are good. Hoping 2010 is a much better year for us!! = )