Saturday, February 28, 2009
I was feeling all special because I was getting on her nerves, A LOT. Seems I'm not all that special, almost everything and everyone gets on her nerves A LOT. I'm sure it is the medicine she's on, or the discomfort from her back. SO> that said, if she is short with you, or seems irritated with you, don't take it personal & don't feel special> I am hoping this passes soon. I'm not saying it's okay for her to act like that, but I am trying to understand. She can get irritable really quick. WARNING!! : )
I spoke with Dr. P's nurse on email. She said it can take 6-8 weeks for the Keppra to stop making her drowsy and suggested putting her on B-12. I really would like to stop adding to her intake of pills. But I'll watch this week to see if we need to do that. Any feedback from people dealing with her on a daily basis would be great. I also would like to know if her personality is "back" or if you are dealing with a new kid! LOL Email or comment would be good. I see a different girl at home than I see at school. At home if her back hurts, she gives into it. I believe, during school, she trudges on. Somehow she has enough energy and drive to cheer, dance and hang out, but just can't seem to find the energy to pick her clothes up from the floor, or pick up after herself. LOL She may have just gotten more spoiled!! Guess time will tell............right now she's all chilled out in the living room watching some dumb movie with Dave. I got her up early this AM to get her hair cut and try on her prom dress after alterations. Both look good!! : ) NOW~ of course she got up for those! Go figure.
That's about all I know today. Looks like it is going to be a mellow one right now. It could easily change in TEN minutes, just like everyones! LOL Enjoy your weekend!
Thursday, February 26, 2009
PT went well this morning! Steff had on okay day at school. As long as she slept last night, I expected her to have a great day. Everything gets on her nerves. She told me today that it sounds like everyone yells. Everything is loud for her and it overwhelms her. Before this started, she would have been taking part in the conversations that are now getting on her nerves. Another thing I learned today is she's having trouble with her vision. Things get blurry for her. So, I guess I'll be making a few phone calls tomorrow. I'm sure this is a side effect of the meds. I need to find out if both will lighten up, or if this is a big concern. It seems like a circle, she takes the meds to stop the episodes, things seem loud and she gets overwhelmed, then she starts having an episode. They are a LOT milder now, but still...
She controls them, they go away, and she moves on. Not sure what the answer is at this point.
On a lighter note.... Lucas Photography called and asked her to be their Senior Model. She is excited, she already called and made the appointment. This also makes me happy, we get a discount on her photos! We went to their web site and browsed through the Senior Pictures,. Yep, they do a FANTASTIC job! I'm happy for her.
Wednesday, February 25, 2009
I have to admire her determination to keep things going like nothing has happened. She is going on with life as usual. Wish I could act like nothing happened~ seems it messed with me more than it did her. (who knows!) I wish she would realize that rest is very important for her body, to avoid the episodes. Maybe in time she will. She is looking forward to doing the dance on Friday at the BB game. She loves to dance and perform~ we all know that!! Until then, life goes on...
Medical information> none. Still cutting her pill, still on 1X day, until Thursday. I did buy her some saltines for the nausea today. STill have not heard back from the blood tests. SO Life is good today.
Tuesday, February 24, 2009
We did learn a couple of things this morning. 1. Angie, her PT, is planning to attend Friday night to watch her dance, or to watch her, I'm not sure. Either way, I'm glad she's going. She can take a big episode and reduce it to nothing in a matter of minutes. 2. It seems like the nausea comes around 3 hours after the Keppra. So, I sent a package of Goldfish with her to school. She's supposed to eat a few every hour to see if that helps. She's supposed to stay ahead of the nausea. We'll try that for a couple of days. If that doesn't work, Shawna at Dr. Patel's office said she can call in something. That however, would mean more pills! We aren't much into taking meds. But, we'll play it by ear. I also called Dr. C in St. Louis yesterday. The pills he put her on are actually called, Sinemet. I gave the generic name I guess. They knock her out and make her feel sick, so he said cut them in half. Instead of taking them in the morning and heading off to school. We are going to do 1/2 at supper and 1/2 at bedtime. That's about all the medical news I have for now. I don't feel like my work is done yet. Dave's thinking I should go back to work, but it would be difficult. I still have to make all the phone calls, run her to PT, and work. (I worry about her most of the day!) Dr. Bynum has me off until after Steff's appointment on March 6. It does pay better to be at work, but I would miss a lot of hours. My disability claim is still up in the air, so I'm not getting a check of any kind yet. I think that's Dave's point, with Cancun coming up. LOL But, life goes on........and on.......
Sunday, February 22, 2009
But we will play it by ear and take each day as it comes. Have a good Monday everyone!!
Saturday, February 21, 2009
Here's my brain of thought. I spoke with Dr. Flannery, I did ask him if they throw the word "seizure" around lightly or are these girls REALLY having seizures. His reply was no, it is not lightly, they are blacking out. This to me, pulled Steffanee from that crowd. Do I think it's NOT the Gardasil? No. Perhaps her body is fighting for all it's worth to get through this and had more of a chance than some of the other girls. Perhaps her barrier that was weak is now strong and can help her heal. Is she much better? Yes. Do I know why? Not really. I do feel that the Keppra 500mg 2X daily has helped. I'll give it up to prayers, her body getting stronger, and her positive energy about healing. Is she fixed? Absolutely not. Are we getting there? I believe so. Is she learing to tolerate the pain? My guess would be yes. Do I have to have answers? Well, that IS my personality, but I'm trying really hard to let that go. Dave is the parent that seems more rational, he is the one staying grounded and mellow. I'm up, then I'm down. (that's a song!) LOL Did I answer your questions? I tried!! Sometimes, I believe there are no answers. Is she going to do the dance? Not sure yet, this not sweating thing is my concern. Do I think it will hurt her back? possibly, but she says no it doesn't. She's also 17 years old and wants what she wants like right now! I know I'm known for saying, " I'm Not taking questions", jokingly. But if you have questions or ideas, don't hesitate to email me- I will see that before I see a comment at the end of my post.
I did go in, copy and paste each email I sent out in the beginning. I tried to date and make it in order, not sure if I accomplished it. This way, if parents (Gardasil contacts) that I've given this blog, need a time line to compare our medical issues, it's there. Actually, I was glad I updated each day. I printed all and gave them to the Dr to read. Yeah, some of it was personal, but some may also give them an insight into what is going on with Steff. Besides, who knows, after this, I'll probably/hopefully never see them again.
Now, about Steffanee. She has slept all day. She was not interested in getting up this morning at all. She did stay out late, the movie was a late one, then I believe I heard her on the phone LATE. I know she needs her sleep, so I let her. She got up around 1ish, ate lunch, (entirely too late for breakfast!), I started her on the new pill (D convinced me to trust this Dr. and let him do his job), she took it and now she's asleep on the couch. Somewhere in there she did take a shower. She is planning on going out tonight for S's birthday! We will play it by ear on how late she can stay, or how much she can do. This new medicine is supposed to tell him if she has dopa responsive dystonia. We'll see...... At least it doesn't stay in the body. So, if she has a bad side effect, it will only last a short time. AGH! Like she hasn't been through enough!
It's been a mellow day around here. I'm working on wash, cooking and taking it easy. A wants to go do something. I'm thinking we might while Steff is out. We will see....
There you have it, again today. Not much going on around here. Tigers won!! I'll give feedback on this new med possibly tomorrow. Again, questions? or if you have answers...email me. It's at the top of this page. Have a good day! ME
Friday, February 20, 2009
Me? I had a mellow day, besides worrying about her. I ran a few errands, had lunch with my sister and a friend. Then picked Steff up and ran her around. She really hopes she can drive after she sees Dr. Patel on the 6th. We skipped the game in Ashland tonight, her idea, she knew she needed to rest. Never thought I would say it, but I kind of miss work. Well, maybe not the work, but the people. With her in school all day, I have a lot of down time. : ) Wish I could settle down and get a few things done. But it hasn’t happened ~ maybe next week. It’s hard to let go of something that has consumed your life for 18 days. But I’ll work on that! Have a good weekend~ b/c we are!! : )
Thursday, February 19, 2009
I had a peaceful day today. I made the decision this morning while I was blogging, to let it go and turn it over. I made a meatloaf for supper (Dave was happy!) I adopted a soldier off the Cornbread site. One that loves chocolate. A man after my own heart! LOL I have quite a bit of stuff that has been piling up for the soldiers. SO, I really don’t even have to spend money on him. I think I have enough stuff to pack him a pretty good box. This is a project that is close to my heart. The post office even has “special” priority boxes at special rate for them now. Doesn’t matter how much it weighs, the price is $11.00 or somewhere around there, as long as the address is a PPO or APO.
I also tried locating my Pampered Chef books and orders. Seems they are getting new catalogs on March 1st. So, I would like to close that book party by the end of the month, in case the prices go up or someting is discontinued. There you have it. My mind is working on other things. Today. At least my mind is working..............
Dave gets put out with me. He says if Steffanee has one good day, that I act like this is over. Or when she has a bad day, I am all over it. He thinks I over react. Yep, after processing it, I would say he is probably right. After 2 decent days, I made the decision to ask if she can do the dance for Senior night. I know this is important to her, but Dave thinks I’m pushing it. Probably some of that over reacting. : )I really just want her happy and doing the things she enjoys! (besides shopping) So, the Senior Dance is still ‘up in the air’. Okay, I’m done. Thanks for hanging with me, if you did. Have a good day! Email when you can, I do like hearing from you all. I may not always answer, but enjoy the company. LOL
I think I just get frustrated, because the Doctors can’t put a name on it and fix her. I wish they would listen when I say that the only thing that has been different in her life is the Gardasil shots. I told him yesterday that I’m not stuck on that, but please be open to that idea. I gave him the paper from the National Vaccine Information Center that stated that girls getting this shot are having neurological problems, involuntary muscle contractions, soreness and stiffness in their joints and muscles. I do think he listened to that and ran a copy of the 2 papers. Who knows? Maybe he will check into that. I don’t necessarily KNOW that the shot did this, but something had to cause this. Okay, this was supposed to be a positive post. She has gotten better. We are making progress. Hopefully, the new medicine will take care of her pain, put the shine back into her eyes, and a smile back on that beautiful face.
Need a smile? Dave and Steffanee both like to jam out the music. I was blessed on the way home to Dave singing with Kid Rock and Steffanee doing Taylor Swift. I know both CD’s by heart. They were rocking that front seat! I just sat back and smiled. Another smile? As I was typing this I received an email. I stopped to read it. Here it is:
To: YOU Date: TODAY From: GOD Subject: YOURSELF Reference: LIFE
This is God. Today I will be handling All of your problems for you. I do Not need your help. So, have a nice day. I love you.
P.S. And, remember... If life happens to deliver a situation to you that you cannot handle, do Not attempt to resolve it yourself! Kindly put it in the SFGTD (something for God to do) box. I will get to it in MY TIME. All situations will be resolved, but in My time, not yours.
Once the matter is placed into the box, do not hold onto it by worrying about it. Instead, focus on all the wonderful things that are present in your life now
Go figure! Life is Good. I’m out of here, we really need to get things going. Steff is still sleeping. Later. me
Wednesday, February 18, 2009
He gave us a lot of papers on dystonia, and a prescription for dopa responsive dystonia. It will be on a trial basis. We will start this med on Saturday, in case of bad side effects. She is already missing quite a bit of school, don't want to add to it. He also ordered blood work> yep, her favorite! and urine tests. Seems it will pin down or cancel out certain types of dystonia. Continue PT if you want, if she enjoys it. It does seem to help her walk. We are also to call The Movement Disorders Clinic at Washington U/Dept of Neurology and make an appointment. We can cancel if we don't need it. There you have it. Our day. Oh, one more thing, seems they don't have enough information on GARDASIL to know. He said a lot of parents come in asking about it just like we did, because of all the information on TV. I do think he copied 2 papers from the National Vaccine Information Center that I had. Was it a wasted day? No, but I think I was wishing for more. Like maybe he had a patient where he had seen this before. He did say there is not a test you can do ~ that will confirm or deny that it's dystonia. So, that's about it.
Cancun. He said play it by ear, she will know if it's too much. So, you know we are going. : )OR if she's having a bunch of episodes we shouldn't go..duh...and I'm REALLY hoping we don't move back to that point!! She also made the decision on the way home that she wants to try cheer practice tomorrow. She REALLY wants to do the senior dance. I'll call George R tomorrow and ask. She wants to get her life back to normal, the best she can. I get it. But, sitting in school is difficult, so those hours are limited. Here's to hoping the medicine works! Her next appointment is March 6 with Dr. Patel. Her follow up with Dr. C in St. Louis is March 22, day before we leave for Cancun. Dave picked that day so we can stay in a motel and leave the next morning, our flight is early. That way, she won't have so much sitting all in one day. We all need that 5 day break~ in the sun, on the beach, not a care in the world, regardless of where things stand when we leave. That's my way of thinking......besides, it's already paid for. Have a good day> keep the prayers coming her way.
About the time on these blogs>> you got me! I tried correcting the time yesterday, but it said it would post in 2 hours, which was the time I entered. So, it's about 2 hours earlier than it really is. Small thing, big day! Have a good one!
Tuesday, February 17, 2009
Steff had an appointment today with her OB, luckily she didn't have the exam stuff, b/c we were busy talking about what has been going on with her. Dr. B was skeptical about the Gardasil, but she has the information. I showed her my updates, from day 1, so she would have the whole story. She ran copies of those and copies of all the Gardsil information I had. Said she would study everything and get back with us, either way. But, she's going on vacation next week with her family. She too has a teenage girl, I know she gets it. Steff felt like it was a wasted trip, but I didn't. If she talks to other doctors, someone might have an answer.
Dr. Flannery in California called me today. We were on the phone for over 30 minutes. He seems to me like he knows his stuff. Not conventional medicine, but I understood his way of healing the barriers, body, etc. I explained to him about tomorrow and how I would rather do something that takes my insurance, (he doesn't take insurance, or insurance doesn't take him, not sure.), he said if we hit a dead end and still have a girl that's weak and having episodes to call him back. He still wants me to fill out forms on his website so he can study her case. He treats girls all over the US. He said he will research our area to see if there is a Dr. that will work with him, through him, to treat her if we need him. He charges $200 for a consultation. It's hard to put a price on your childs health. But, that's on the back burner until after our St. Louis appointment. We're not even sure that it's the Gardasil. We'll see.
Steff attended school until 11:30 today, she was tired, but proud that she got all her homework and assignment to work on tomorrow. She's nervous about going. Wants to know if we can go shopping!? I had to remind her that her dad is going! : ) She said she felt the same all day. Her back is tight tonight, I put a heat pack on it. She has PT at 11 in the morning, had to cancel the massage. We'll get on the road about noonish. Appointment at 4~ and we will need to figure out where we are going.
Hoping to blog good news tomorrow night!! Have a good one and send your positive energy our way!!
Home > Vaccines & Autism
Vaccine / Autism Information
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I believe that the choice to vaccinate children is an individual one. I encourage people to properly research the effects of vaccines instead of blindly accepting what a doctor tells them. That said, my child will never receive a vaccine. Based on my research, the cons far outweigh the pros and therefore the choice to vaccinate is not for my family. This article is not designed to sway your opinion one way or another. It’s for those who have suffered the ill effects of vaccinations and are looking for answers. The following is my theory of how negative vaccine reactions happen based on my research and clinical experience.
The problem rarely starts with the vaccine, but the vaccine is the tipping point (the straw that breaks the camel’s back). Let’s start with some basics, our skin. Our skin creates a barrier of protection for our body. Say you had a knife that had bacteria on it. If that knife touches your skin, you would not get a bacterial infection because your skin forms a protective barrier the bacteria can’t penetrate. Now let’s say you cut yourself with the knife, breaking your skin (the protective barrier). Now there’s the risk of infection by the bacteria if your immune system is not able to efficiently kill the invader. Immune cells just under your skin act like the border patrol, waiting for a barrier breach, at which point, they attack the invaders.
What does this have to do with vaccine reactions? Read on. Your skin isn’t just on the outside. It also folds into your mouth and, with slight modifications, creates the lining of your digestive tract, a tube from your mouth to your anus (aka, the “gut”). As we put things in our mouth, there is a risk of infection from invading bacteria and viruses. Your gut acts as a protective barrier to keep these invaders out. If these invaders cross the gut barrier then they are attacked by the immune system. As a matter of fact 80% of your immune system is found surrounding the gut. Your gut also knows what good things to allow into your bloodstream, like nutrients.
This gut barrier can often be broken down causing what is called, “leaky gut,” literally holes in the gut barrier. This is equivalent to the knife cutting the skin in the example above. Leaky gut is responsible for many food sensitivities and food allergies.
Similar barriers appear in the lungs and the brain (aka, the “blood-brain barrier”). These barriers can also break down, just as the gut barrier can. A big sign the lung barrier is broken down in children is a history of asthma and allergies. Often, when one barrier is broken down so are the others.
All this being said, here’s the problem with vaccinating children. Many children who have vaccine reactions are those who have these broken down barriers. It’s the broken barrier that is the predisposing factor that puts a child at risk for a negative vaccine reaction. This is why one child may have a reaction to a vaccine shot and another might not. The vaccine did not break down the barriers; the barriers were already broken down. Because the barriers were already broke, it allowed toxins in the vaccine to cross over into the brain tissue, lung tissue, abdomen, pelvis, etc.
Take autism as an example. Autism is thought to be caused by vaccines. Again, I say the vaccine was the tipping point. One cause of autism, according to my research and clinical experience, is that an autistic child is birthed by a mother who has high testosterone levels. When infants are exposed to high levels of testosterone it causes the blood-brain barrier to break down (this is well researched). The infant then receives vaccination after vaccination during the critical months after birth. The compromised blood-brain barrier allows the toxins from the vaccine to enter the brain tissue where an attack from the microglia cells (immune cells in the brain) takes place. This attack begins to destroy brain tissue causing neurologic symptoms. Autism will not be diagnosed until two years of age so the parent continues to vaccinate even though the child’s health is declining. It’s sad to see so many parents giving their autistic child the supplement GABA (Gamma-aminobutyric acid). GABA is a necessary neurotransmitter made in the brain. It is the main inhibitory neurotransmitter and is known to cause relaxation, reduce anxiety, and help with sleep. This is one of the top selling supplements for autistic children. It’s important to understand that GABA is too large a molecule to cross a healthy functioning blood-brain barrier. If a person has a response to the GABA supplement (increased relaxation, reduced anxiety, or better sleep) it is diagnostic of a broken down blood-brain barrier. Let me repeat that: if you or your child takes GABA and experiences an increase in relaxation, less anxiety, or better sleep, this indicates a serious problem. Parents of these children think it is a “wonder drug” because of the calming effect it has on these autistic children. NO, NO, and NO! They leave their children on the supplement and do not address the broken down blood-brain barrier and the brain continues to be destroyed. Over time the GABA supplement becomes less effective. This is due to the fact that GABA receptors in the brain are over exposed to GABA and lose sensitivity to it. This results in a decline in relaxation and an increase in anxiety. Many parents say “the supplement just stopped working.”
Autism is just one well known result of broken down barriers. This can take place in the lungs, abdomen, pelvis, etc. as well as causing pain, inflammation, digestive problems, breathing issues and many more symptoms.
For the health and recovery of the child, it’s imperative that these barriers be restored. In order to restore one, the issues that cause these barriers to break down in the first place must be addressed. It’s not my intention to give treatment advice here as each case is individual; there are similarities among cases but I do not have a magic pill. There is no one treatment that fixes the damage for everyone.
• Immune system activation from asthma, allergies, infections, etc.
• Immune system activation from exposure to food allergens (especially gluten)
• High testosterone levels
• High homocysteine levels
• Oxidative stress (especially in the presence of increased blood sugar)
• Elevated blood sugar levels
• Various medications.
Steroid drugs used to treat asthma actually promote further breakdown of the barriers in the body (including the already compromised lung barrier).
What is my approach? I start with a consultation to determine the patient’s history and what tests to run. I order a general blood test that allows me to evaluate the patient’s physiology and identify dysfunction that is preventing healing. Here’s just one example. If a person is anemic or has low blood sugar it’s impossible for the body to heal itself. Cells in the body require two things to regenerate: glucose (blood sugar) and oxygen (not sufficiently present in an anemic person). These issues must be addressed before healing can begin.
The next goal is to repair the broken barriers (various healing methods are available). One thing not to do is chelate the person. Chelating removes heavy metals like mercury, aluminum, tin, lead, etc. from the body. You run two risks by chelating a person with broken down barriers. One, metals are pulled from the tissues into the blood stream enabling more metals to cross the blood-brain barrier and do more damage to the brain. Second, when barriers are broken, the immune system is over active (remember the border patrol lining these barriers). Pulling the metals out heightens the immune system causing more damage to the body’s tissues. I have even seen cases where chelation caused an autoimmune condition such as multiple sclerosis, rheumatoid arthritis, Hashimoto’s disease, etc. to be “turned on” during the process due to the increased immune activity. Autoimmune disease is irreversible once it is turned on in the body.
Here are some methods to reverse the effects of a vaccine reaction (any treatment should be under a doctor’s supervision). As stated above, I find each case to be unique.
1. Reduce exposure to food allergens, especially foods containing gluten. Gluten is known to cause damage to the nervous system (brain and nerves). Email me (DrMark@LiveHealthWise.com) and I will send you a list of foods that contain gluten. I do not bother to try to figure out food allergies (there are NO good allergy tests). Just restrict the diet to meat (chicken, turkey, lamb and fish), vegetables (no tomatoes, eggplant or potatoes), and homemade chicken broth.
2. Manage blood sugar levels by eating protein every 2 hours. This helps maintain proper levels of glucose in the blood. In women, this helps to reduce high testosterone levels and feeds the cells so they can function properly. Also, proper glucose levels are necessary for correct brain function. The brain only weighs 2-3 pounds but uses 1/3 of the body’s glucose. Without a healthy functioning brain there is nothing to orchestrate healing in the body.
3. Manage any anemic condition. There are many types of anemia. Iron anemia is only one type. NEVER take iron unless you know you have iron anemia. Low iron levels on a blood test do not mean you are iron anemic. Iron toxicity is very damaging; taking iron can cause tremendous inflammation as well as oxidative stress on the body. It is a must if you need it but detrimental if you don’t.
4. Reduce homocysteine levels to below 5. At levels above 5 there is the possibility of barrier breakdown. There is a gray area between 5 and 7. Levels absolutely have to be below 7 but I do not like to gamble so I choose to get them below 5.
5. Take care of ALL gut infections and these can be analyzed with stool tests. There are many different types of stool testing out there. The ones your traditional M.D. will order are not sufficient (we have had many patients show false negatives with these). The test I use in my office is by Metametrix Laboratory. It is DNA type testing and is the most sensitive test around.
6. You must fix the barriers. This can be done in different ways and is too complicated to explain here.
7. Drink half your body weight in ounces of water per day (Example: 120 pound person would need to drink 60 ounces or about 2 liters of water per day. Water does not include juice, soda, milk, etc.
The above list is not comprehensive, but it’s a good foundation. There is nothing more heartbreaking than to watch a child’s health decline due to a vaccination that a doctor recommends. If your child is suffering, my prayers are with you. Do not underestimate the power of prayer when it comes to healing. Healing cannot take place without the will of God.
May God bless you and your family with His power of healing.
We will get the results of her blood work on Friday at Dr. Matias. I will be on the phone this morning with St. Lukes, trying to get an appointment. Just wanted to touch base, hope you all have a good day!
Monday, February 16, 2009
I didn't get as much accomplished today as I had planned. I did make the calls, but things didn't fall in place. I called the St. Louis Childrens hospital, they said they didn't receive her papers. I called Dr. Patels office, seems we mixed our messages, I stated that I would hand carry (I want to read them) to the 2nd opinion. However, I later asked them to fax to St. Louis. Not a big deal, but it means a few more days before I can make the appointment. In the meantime, I received more information on St. Lukes Hospital and plan on giving them a call tomorrow. I called the Dr. that has a website on detoxing the Gardasil, he was out of his office today. I emailed him later, and received a reply. He is going to try to get to me tomorrow. I'm still going to work on detoxing her body, with this open mind, but want to make sure I am going about it in the correct way. Not sure what happens if you detox a body too much. She did do another ionic foot bath, and yes, the water was gross again. I bet everyones is. But it can't hurt, I hope! : )
Her spirits were better tonight. Maybe yesterday she was too tired to want to deal with all of this. I know the feeling. She plans on attending school 1/2 day tomorrow, b/c she has an appointment at 1 with the OB/GYN. Hope we can get some answers there. There you have it, hope we make progress and figure some things out this week! Have a good day everyone!!
Friday, February 13, 2009
Still searching for contacts.Vaccine Watch: Gardasil Side-Effects?http://www.cbsnews.com/blogs/2008/07/08/couricandco/entry4240888.shtml
Wednesday, I think
Hey Guys! Today was a better day yet. Steff went to school for 2 hours this morning and did very well. She maintained her walk even as we were leaving. She took a nap when she got home and woke up to go to PT. It went really well, Angie could tell that she had gotten stronger. She worked hard for 25 minutes, which probably was too long, b/c she was laying on her tummy relaxing when she went into a spell. Angie worked her muscles, so it was controlled. This was the one and only spell today. Angie knew she was fatigued and said she'll shorten the time for Friday. SHe and Steff also decided that we will play this relaxing of the muscle technique by ear. I'm sure the training that Angie has had is what makes her so good for STeff. That said, if she wants to just have the "spell" Angie said to let her. After PT she took another nap. I was glad, b/c these meds she's on kind of make her crabby. Things get on her nerves quickly. She gets an overwhelming feeling. She's had her benedryl and is getting ready for a good night's sleep.Now about my findings. I'm tired, so stay with me. I've read a lot of articles on side effects of Gardasil, some are very ugly. There are paralells with what is going on with Steff. It is certainly something I will mention to the Dr in St. Louis. I called to make an appointment today. Seems your DR has to get those last Office visit notes to the St. Louis office. Then they go over the notes, and decide which DR you will be seeing. So, it's a waiting game. But at least we have a good plan. Here's to hoping each day she improves! Have a good day!!! Robin
Thursday, February 12, 2009
Hey Guys! What I thought was going to be a horrible day, turned out to be a better day for her. I woke up around midnight to her calling for me. She was in the middle of a "spell" I sat with her and rubbed massage oil on her back for quite a while. She finally drifted off to sleep. I am glad to say the "spells" seem more controlled now. At least she isn't folding her body backward. It is still painful for her. She told me she had 2 today in class, but she fought through them and won. Guess this is good, not sure. She attended school the last 2 hours of the day, b/c she was exhausted this mornning. When I picked her up from school, she wanted to hit The Villager to try on her prom dress again. Yep, I took her and while we were there, we purchased the shoes and jewerly for prom. Go figure. She seemed fine while we shopped. Actually tonight she was quite the little smart mouth and full of herself. She started wearing down around 9. Seems like she had more energy today. This is good. Now about me. LOL I really believe in my heart that her problem is def that Gardasil vaccine. The more I read, the more convinced I am. I called Dr. Matias and discussed it with her. After Steff's PT appointment at 1, I'm taking her Boone to give up some blood for more tests. I requested a lyme disease and thyroid, ideas from the Maryland nurse. Dr. M said she would run several more tests on her blood. Steff HATES to give blood, but she'll be okay. Don't expect to hear from St. Louis until Monday, but I will probably give them a call tomorrow anyway. Thanks for all the cards, balloons, flowers, love and prayers coming her way. We really appreciate it. It takes a village. Quote for the day... ..."It's just not fair...you don't know how not fair it is!" Steff while stating her case to go to the Harrisburg game. BTW, she won.
This might be overload for some of you, but it you are educated on the shot (unlike me) it might help you to make an educated decision for your girls, or any girls you know. If it is too much, just delete it. Robin
Monday, February 9, 2009
I took Steff to PT today and was really impressed with her therapist. She had a "spell" in the waiting room, they were on it, we took her back to a mat for some privacy. Angie was very soft spoken, had Steff lay on her tummy with her hands layed flat under her, like a push up. She kept telling her to breathe deep, then she put pressure on her shoulder blades for about 3 min, then her middle back and her butt until she felt Steff's muscles start to relax. It was amazing. That's our new plan if it continues to happen. Angie thinks Steff will be ready to do the Cheerleading dance on Senior night. She will be seeing Angie on Wed and Friday. Working on the walk will come later. She feels we can fix this! This is totally good news. Of course, she's fixing the muscle part of it, who knows, maybe that will fix it all. She will be going to school for 2-3 hours tomorrow. She and the counselor, put a plan in place. She has a "go to" friend in each class that she will teach the technique of calming the muscles. She also showed her Stats teacher, which is the one that was with her both days it happened at school. I feel better about her going to school knowing we have a plan in place. Angie said no massage for at least a week. Steff also attended cheer practice today, just sat and watched, then showed them what to do, and took questions. LOL She's sound asleep now. Hope she sleeps until time to get up for school. Today was a VERY GOOD day for her. I am so glad. We're taking small steps with Steff in control. Thanks for all your prayers, we are getting there. Later, Robin
Maybe Feb 9, late or Feb 10
Hey Guys> I had really hope to stop these updates, but we aren't there yet. I've been on the phone with specialsts and hospitals today. Steff did go to school this morning. Her back was tight when she left. I got a call around 10 that she was having another spell. The girls tried the new technique that we learned at PT. It didn't work as planned. Probably because Angie has had years of training to get where she is. We'll keep trying it. She wanted to go out to eat after I picked her up (at this point, she can have whatever she wants ) After lunch we rode around with the sunroof open, with Taylor Swift blaring out of the stereo. That is what she wanted to do. She sat in the front seat, feet on dash, and seat layed back, singing. The sun felt good. Yes, I took the back seat. She took a 2-3 hour nap when we got home. She got dressed and ready to go to the game, against my better judgment, I took her. All went well. Her muscles tightened up after sitting through the game, so her walk went south, but she didn't care, she was happy she got to go. Needless to say, I was a nervous wreck the entire game. We had a plan. We were going to leave the minute her back started twitching. My feeling on today... she isn't in control of her body, so she can have some control over her life. She took a benedryl and is sleeping peacefully as of now. Tomorrow is a new day. Okay, the progress I made today. Blue Cross researched and gave me a dystonia clinic to call in Maryland. I know, she wasn't diagnosed with dystonia, but this looks like it in a lot of ways. She asked me a lot of questions and was very helpful. She suggested a second opinion with a larger hospital and to make sure they have a neuroscience dept. She also questioned me about the HPV, Gardisil (sp) vaccine. and Yes, Steff had her last one on Jan 5, one month ago. She said reports have been made with a lot of complaints on the vaccine. I asked for information and thanks to all that found it, I am wondering if that could be it. I read that 509 cases have been reported with muscle spasms, involuntary muscle control, among other neurological problems. I will be calling CDC tomorrow. I had asked Dr. Patel about it and asked again today. His answer .no.. she had this 2 years ago. Okay, he can't get past the fact that she had passing out spells 2 years ago. I don't connect the two. He can't separate them. I called his office and asked for her records, so I can hand carry them to her 2nd opinion. I also called her primary dr and asked for mild muscle relaxers so she can sit comfortably in the desks at school. They are to call me back tomorrow. I know this is a long email, but it has been a long day. Overall, it may not sound like it, but I think today was a pretty good day with just one spell. The naps seem to help. She is returning to school in the morning. I hope it goes well. She has PT at 1. Keep your ears open for any info that you think might help us. Have a good day!! Robin
Sunday, February 8, 2009
Hey guys! It's 5 am on Sunday. Steff had a GREAT day yesterday. She had 4 episodes, all after 5 PM. The first one was her entire body, same as it has been. The others were more controlled. She lays flat on her back, with her legs moving, then lower body, then her chest thrusting into the air. She says she is controlling it, but I'm pretty sure the meds are doing most of it. I'm hanging in there, but am beginning to wonder if this is giong to go away. I left her with her friends today, knowiing that Sadie would take good care of her and contact the nurse if they needed her. She had fun, they watched movies, went out and played Basketball, played karaoke and laughed a lot! I was very proud of myself to step away, because it was difficult. I left yesterday morning at 10ish, checked in on her around 5, and didn't return to the hospital until 8 PM. Well, being that she is a VERY spoiled teenager> that just wasn't good enough. She didn't want her friends to leave when it was time. It got u g l y. She said a lot of mean and hurtful things to DAve and I. I know she is frustrated and tired of fighting for control of her body. I know it must hurt really bad. If I could trade places with her, I would. I am trying very hard to make this ugly thing go away. We are doing the best that we can. I've had a very positive outlook and definately positive energy. I, too, am frustrated and tired of watching her be in pain. Tonight, I realize that there may be a few changes in her life. There might be a chance that she won't get back to that graceful dancing young lady that she was last week. I think that she, too, is thinking that. Her body struggles hard to even walk. It breaks my heart. Her cheer squad is doing a dance for Senior night at the end of the month. She asked me tonight with tears in her eyes if I think she will be able to do it. I strongly answered "YES! That's 2 weeks away" I only hope I'm right. I haven't read about dystonia yet- not sure if I'm ready. However, Josh was very upset after he read about it. I have all my questions written down and will be ready for Dr. Patel this morning. I'm off to take a shower and go back into the dark- don't even care today. Guess I needed to come home and vent and pray just a little bit harder. I will deal with what ever we are handed, but by golly, I don't have to like it. I will act like it's okay for Steff's sake, but, NO!, it's not okay with me! Deep breaths can only work for so long. Maybe the hot water will help bring that peaceful feeling back, I can only hope. Keep praying for our little medical mystery girl. Love, Robin
Hi Guys!! Steff got out of the hospital today. She has bad muscle spasms and something that looks like dystonia. He says her symtoms are too severe for dystonia and what she has, he believes she will get better and this will go away. Didn't say it would be tomorrow or next week. But to be patient. She will be returning to school on Tuesday (if the spells are mellow on Monday), but not a full day. I will have to check with the school and make a plan. She is very excited to get back on track, we just have to be careful that she doesn't overdo it. Rest and diet seem to play an important role. She can't drive until we see Patel on March6.Her spells were calming down and weren't violent when we left the hospital. However, when we got home, she was feeling overwhelmed and went into the violent spell. It's 11 pm and all is good. If things continue to improve, I'll roll with it. If I don't see much impovement, I plan to get a 2nd opinion or consult an Orthopaedic Dr. for her back. She starts PT on Monday and if we have time, I plan to take her for a massage to loosen those tight muscles. Depending how her body tolerates the PT. Her walk is still horrible. I really hope to get it in check before sending her to school, hopefully loosening the muscles will help. Walking tires her out quickly.It feels good to be home and I think she will get a good nights rest. That's all I know right now. Take care, and please keep praying for her. Everyday should make a difference.
Saturday, February 7, 2009
I am planning to send out an update, but I want you to know. After eveyone left, we chatted, listened to Taylor Swift and chilled for about an hour. Then it was the worst episode yet- it lasted 40 minutes, with her getting very mean and would not let us touch her. It's even harder to sit back and let the nurse do it. But I did. Dave broke down. I got more angry, but backed off. I know she cannot help it, and was very exhausted before it happened. BREATHE BREATHE>Yesterday was still a better day the number of them went down a LOT. Today will be a better day. If she Dave and I make it through it. Seems like eternity...........later, the tired one.
Hi guys. I'm sure you all know that Wed night was a very peaceful night for her and Thurs morning was much better than Wed morning. Overall Thursday was a better day. The episodes haven't stopped, but seem to be slowing down.She showered (first one) and we took a few walks. The walking is not real pretty, but I'm sure her muscles are very tight from all the folding backwards that she does. She did have a difficult time late last night. It was her longest one yet- we made it, not sure how...but we did. She is getting sick of dealing with it, we all are. However, today is a new day! and Today will be a better day. Dr Patel ordered PT to evaluate her back. She had been having low back aches since she hurt her knee, before her knee surgery. And it had gotten worse, I guess due to favoring the knee, changing her walk. Okay, this blogging is therapy for me> so bear with me. LOL Dave woke me up to come home before him today. Yeah, right. Who does not know that I am very scared of the dark?? AGH. 5 a m and I had to walk into that parking garage all by myself...thought I was going to freak out. Then the house was dark, and no one was home. It is now 6:15 and I am still alive. Okay, I know it's not about me. Maybe the dark was to take my mind off of our girl... it worked!! I'm off to shower and go back to my bedside duty. Thanks for the prayers, I believe they are working. Keep them coming. Robin Dave & Steff
Sent: Sat, 7 Feb 2009 2:06 pmSubject: Steff is up and around......
Hey! Dr. Patel is treating her for dystonia, the best I could understand him. He has thrown that word around quite a bit, but really didn't make that diagnosis. I believe he has exhausted most testing he has done, without any answers. The sedated MRI didn't happen. Seems one machine was down. They gave her benedryl to make her relax during the MRI, but after 10 minutes of being confined and listening to the noise, she had an episode. Not sure if the 10 min was enough for him to check out, or if we are going back in today. The new blood tests came out good. She did have an episode yesterday morning while all the student Dr. and the attending were there, so they all got to watch and observe-which was good. Okay, back to dystonia. What is Dystonia?Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for controlof a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. I copied that from a website so I wouldn't explain it incorrectly. He gave her one dose of meds in her IV> she had a shower, went walking quite a bit, went outside with the child life specialist and another patient, overall had a much improved day ! She only had approx 5 episodes all day, which is a BIG improvement. He decided to keep her on those meds since we saw improvement, they cover 3 things: pain, dystonia and something else. They did an evaluation on her tight little body, (walking is not too pretty) and plan on doing PT for her. Her walking will improve after her muscles heal from all this, they say. We are planning on bringing her home on Sunday, since all will be going well today! : ) Our house will be open for visitors, as she tolerates it. Maybe short visits. We will be playing this by ear. Will the meds keep this monster completely away? Not sure, I didn't get to ask Dr. Patel my 20 questions. : ) I do know that I feel good enough with this, that I am taking 3-4 hours away from her bedside to get some ME time. I feel that she is in very good hands. Thanks for each and every one of you for your prayers and thoughts. I think she will return back to that smart mouthed child that we all love, much stronger, after this is resolved. Have a great day and God Bless each and every one of you ! Robin Dave and Steffanee
Sunday, February 1, 2009
Hey! I expected to spend today chilled out on the couch> took Monday off after the Super Bowl. Got a phone call around 10ish> Steff was in the middle of a very heavy seizure at school. The ambulance was there> needless to say> we spent the day at the ER at the University. She talked and was coherent during the "seizure"> so they don't really think it was a seizure. She had a chest cold and stuffy nose this morning. Guess she was having a difficult time breathing, went to use her inhaler and went downhill from there. They did blood work, and her potassium is low> which could have caused her muscles to lock up like they did. Best they could decide is maybe she had anxiety and the low pot. made it worse. She goes in for a EEG on the 19th and has her potass. checked again in 5-7 days. Until then, I guess it's life as usual for her. Mine won't go back to usual until much time has passed. It has been about 2 years since we dealt with this, then out of no where> here we go again. The poor teacher was completely freaked out> but did an excellent job taking care of her and making her feel comfortable. There's an update on our girl> thought you all would want to be informed. I would have called a few of you, but I am sick of talking on the phone today. I'm tired, stressed and a little worried about her. That's a mom's job you know!!! LOL Catch you later, me
Wed, 4 Feb 2009 11:46 amSubject: DAy 3> Steffanee Richardson
Hi Guys! Dave is at the hospital with Steffanee, at this point, she is sleeping sound-with lots of meds. We had a rough day yesterday with about 10 episodes. Then a somewhat peaceful night, with lots of meds. She woke up this morning and the "seizures" started at 8 and would NOT stop. I call them seizures for lack of any other explanation. When she has them, it's nothing like EVER before, it's like her fingers and toes are trying to touch the back of her neck, she just folds backwards, crying that it hurts, sometimes screaming in pain. It is very hard to watch. Dr. Patel's nurse witnessed several this morning, so I feel that they are on top of it. They are going deep into the blood work, urine work, the cat scan came out good> with no sight of a brain> : ) they x-rayed her spine, nothing showed up there. The EEG is still up in the air, she had 2 seizures while they were doing it. Dr. Patel, wants to study it closer before we chat about it. She has a very good appetite. Ate her breakfast and half of mine> which of course, was good for both of us! At this point, I would still rather no one call or come up to the Hospital unless they call us first. I'm not trying to be mean, but we need our privacy and she needs her rest. I will try very hard to touch base with someone to get the word out with what is going on. Maybe when I come home for showers. UNLESS we get good news~ then I will call everyone! JJDave just called. She's still sleeping and Dr. is putting her on a brain monitor for 24-48 hours and we're going to do a MRI on her brain. He said she's not sleeping sound, but is resting, without anything going on. I need to get back to her> Keep her in your prayers and thoughts> at this point that's the best thing we need. Thanks for all the offers> I appreciate all the concern and love coming our way! I'll email next shower, if I can. (didn't want you to think I didn't shower if you didn't hear from me.) Not sure if I copied to everyone> so please pass the word or email if you would> Robin & Dave and of course Steffanee