Here is the link to the Dinet newsletter:
http://www.dinet.org/images/newsletters/2014_Spring_Dinet_Newsletter.pdf
Check out their website if you have not been there or have not visited in awhile. They have a great leadership and provide awesome information and support for all their members.
Tuesday, February 18, 2014
We are the Champions!
We are the champions - my friends
And we'll keep on fighting - till the end
We are the champions
We are the champions
No time for losers
'Cause we are the champions - of the world
Do you remember these lyrics, this song. We fight everyday, but regardless of each battle along the way, no matter how disarming a new symptom or issue may be, We are the champions. The battle is here and now, but the war is already won. We will enjoy fellowship with our redeemer who promises no more tears, no more pain and an eternal presence with Him in the most beautiful place in existence.
We can hold on through every hardship because He already paid the price on the cross. He loves us and wants an eternal fellowship with us. All we have to do is believe in His son's death, burial and resurrection. In believing we exercise faith through belief. We express faith through actions of love.
Are you interested in such a relationship? Let me know, I will introduce you. A Christian life is not easy, we struggle just as much, and in some cases more so than non-believers. There are people who are persecuted for this love.
We have a testimony of God blessing our daughter and our family through some terrible health and life experiences. We just need to stay focused on Him. Unlike the message in the song, we are champions not because of our own efforts, but because of those from our Lord and Savior!
Blessings!
And we'll keep on fighting - till the end
We are the champions
We are the champions
No time for losers
'Cause we are the champions - of the world
Do you remember these lyrics, this song. We fight everyday, but regardless of each battle along the way, no matter how disarming a new symptom or issue may be, We are the champions. The battle is here and now, but the war is already won. We will enjoy fellowship with our redeemer who promises no more tears, no more pain and an eternal presence with Him in the most beautiful place in existence.
We can hold on through every hardship because He already paid the price on the cross. He loves us and wants an eternal fellowship with us. All we have to do is believe in His son's death, burial and resurrection. In believing we exercise faith through belief. We express faith through actions of love.
Are you interested in such a relationship? Let me know, I will introduce you. A Christian life is not easy, we struggle just as much, and in some cases more so than non-believers. There are people who are persecuted for this love.
We have a testimony of God blessing our daughter and our family through some terrible health and life experiences. We just need to stay focused on Him. Unlike the message in the song, we are champions not because of our own efforts, but because of those from our Lord and Savior!
Blessings!
Friday, February 14, 2014
The Scary Monster Has Appeared
Do you remember when you were a kid, laying in bed at night, wide awake, in the dark, allowing your imagination to get the best of you, the one of the monster under your bed? You knew that once the light came on he would be wielded powerless and would just disappear. But in the dark, he was all powerful, kept you frozen with fear.
Our monster has appeared from the dark.It is all powerful, even in the light.
As a baby, my daughter had chronic ear infections. Each time the pediatrician would prescribe ear drop antibiotics to clear up the infection and it worked well.
Fast forward a few years, a few infections and a few more treatments and suddenly with each drop placed in the ears, you have a new condition. You start having seizure like jerking. This happened to my daughter. We stopped the ear drops and refused to ever use them again because we knew that they caused the jerks each time they occurred. As time went by the jerks began to diminish. They were never completely gone, but at a level that they were not so scary, they were manageable. For three years, the monster refused to come out into the light. Each time he tried, we were bigger and scarier than him. Until now, three years later.
The jerks have returned just as vicious as ever.
In hopes of helping others understand this rare condition, I posted in several places across the internet about the condition. It is rare disease month. In doing so, it caught the attention of someone else. Though her medication was never mentioned, the information she sent me startled me, it sent shivers down my spine. We now know that we did this, we did it to our daughter and it is permanent. The information that she posted was about Flourquinolones and the devastating effects that they have on the body. As soon as I saw the word quinolone, it struck my memory that this word was used in the description of my daughter's medication, the ear drops. This medication causes a deterioration of the connective tissue around the nerves. Most people can handle a mile case of this deterioration, but someone that already has a connective tissue disorder, the condition has devastating affects. Some people fall victim to the devastating affects after only one treatment, others it can happen after several treatments. The effects may not appear right away, it can be months to even years later.
What did my daughter use? It was Ciprodex, simple little ear drops. Who/what is the big scary monster? It is the drug, it is the drug company, it is greed, it is the unwillingness to admit the truth when damage is done to own up to it and take the drug off the market. Do the research, flourquinolones don't just come as ear drops, they come in pill forms as well and may come in other forms. It is an antibiotic. Even though it worked well with the ear infections, keep in mind that the effects are devastating and permanent. Hopefully together we can squash this monster down to size and prevent this from happening to anyone else.
Our monster has appeared from the dark.It is all powerful, even in the light.
As a baby, my daughter had chronic ear infections. Each time the pediatrician would prescribe ear drop antibiotics to clear up the infection and it worked well.
Fast forward a few years, a few infections and a few more treatments and suddenly with each drop placed in the ears, you have a new condition. You start having seizure like jerking. This happened to my daughter. We stopped the ear drops and refused to ever use them again because we knew that they caused the jerks each time they occurred. As time went by the jerks began to diminish. They were never completely gone, but at a level that they were not so scary, they were manageable. For three years, the monster refused to come out into the light. Each time he tried, we were bigger and scarier than him. Until now, three years later.
The jerks have returned just as vicious as ever.
In hopes of helping others understand this rare condition, I posted in several places across the internet about the condition. It is rare disease month. In doing so, it caught the attention of someone else. Though her medication was never mentioned, the information she sent me startled me, it sent shivers down my spine. We now know that we did this, we did it to our daughter and it is permanent. The information that she posted was about Flourquinolones and the devastating effects that they have on the body. As soon as I saw the word quinolone, it struck my memory that this word was used in the description of my daughter's medication, the ear drops. This medication causes a deterioration of the connective tissue around the nerves. Most people can handle a mile case of this deterioration, but someone that already has a connective tissue disorder, the condition has devastating affects. Some people fall victim to the devastating affects after only one treatment, others it can happen after several treatments. The effects may not appear right away, it can be months to even years later.
What did my daughter use? It was Ciprodex, simple little ear drops. Who/what is the big scary monster? It is the drug, it is the drug company, it is greed, it is the unwillingness to admit the truth when damage is done to own up to it and take the drug off the market. Do the research, flourquinolones don't just come as ear drops, they come in pill forms as well and may come in other forms. It is an antibiotic. Even though it worked well with the ear infections, keep in mind that the effects are devastating and permanent. Hopefully together we can squash this monster down to size and prevent this from happening to anyone else.
Friday, February 7, 2014
Ehlers Danlos Our New Best Friend
March marks almost two years since my daughter first started doing well with her Dysautonomia treatments. She improved even more since this last October. During the doctor's visit that month, her doctor told us that she would improve even more, but new symptoms/issues would arise. They were always there, but they took backseat to all the other issues from the Dysautonomia.
He was right. My daughter began having increased trouble with her joints. We have gone to the doctors many times and even avoided going many times because of sprained joints. She once again started showing an increase in having problems in her legs and feet. The reason this just started showing up again? She was now out of a wheelchair and using them normally again. The stress was too much though. After returning to the geneticist, we discovered that she had diagnosed my daughter two years earlier with Ehlers Danlos.
Our new focus is our new best friend. My daughter has started doing physical theraphy specific for patients with Ehlers Danlos. It has truly been an eye opening experience to see how weak and deconditioned her muscles are. Thankfully, there is a physical therapist that knows Ehlers Danlos well and has treated others with it for years now. He is very understanding and very easy to work with.
Our new best friend has really opened our eyes to other problems that she has been having all along. It is like having a puzzle, the comparative picture is covered in dirt and you just can't figure out the pieces and create a picture as it should be. Suddenly, somebody comes and cleans all that dirt off of the comparative picture and it all comes clear to you. You had the right idea, it was just upside down.
We have to learn to see things differently, we have to learn to live life differently; afterall, best friends are forever.
He was right. My daughter began having increased trouble with her joints. We have gone to the doctors many times and even avoided going many times because of sprained joints. She once again started showing an increase in having problems in her legs and feet. The reason this just started showing up again? She was now out of a wheelchair and using them normally again. The stress was too much though. After returning to the geneticist, we discovered that she had diagnosed my daughter two years earlier with Ehlers Danlos.
Our new focus is our new best friend. My daughter has started doing physical theraphy specific for patients with Ehlers Danlos. It has truly been an eye opening experience to see how weak and deconditioned her muscles are. Thankfully, there is a physical therapist that knows Ehlers Danlos well and has treated others with it for years now. He is very understanding and very easy to work with.
Our new best friend has really opened our eyes to other problems that she has been having all along. It is like having a puzzle, the comparative picture is covered in dirt and you just can't figure out the pieces and create a picture as it should be. Suddenly, somebody comes and cleans all that dirt off of the comparative picture and it all comes clear to you. You had the right idea, it was just upside down.
We have to learn to see things differently, we have to learn to live life differently; afterall, best friends are forever.
What a Big Jerk!
Back when I was in the 8th Grade, we were treated to a camp day. It was nearing the end of the year and symbolized the transition between middle school and high school. At the end of the day a presentation was put on by a group in our class. It was about a lawn mower that would not get started and run. Members were asked to come up from the audience and start the mower. The first couldn't. The second person tried harder, but still couldn't. The third person tried really hard pulling on the cord and finally got it started. The final comment of the presentation was, "Thank you, [so and so], we knew it would take a Really Big Jerk to get it started." The joke was on the student, not a recognition of his strength.
For my daughter, she is officially in the club of those that suffer from Myoclonic Jerks. It is no joke. Sadly, the body goes through what we perceive to be giant, full-body hiccups. "The Jerks," as we so unaffectionately refer to them decided to pay her a visit three years ago during the time she had a bad ear infection that would not go away. Every time we put drops in her ears the jerking would begin. They were physically quite violent for her. Sadly, they did not go away when we stopped the ear drops. She would have periods of rest, but never a day went by that she didn't have an issue with them.
We took her to the ER when they started during one of her private music lessons. She couldn't even walk out of the room, I had to drag her to the hall then get a wheelchair. Once we got to the ER, they immediately took her in. By this time she was having upwards of four to six jerks a second. They were very hard, very fast and attacked her whole body. The ER docs were in a panic to find out what was wrong. Then out of nowhere, they stopped. The doctors went ahead and gave her some meds and home we went. The ear infection lasted for about a month and the jerks for a couple of months longer.
She did see her neurologist, had a brain scan for three consecutive nights making it possible to determine that she was not having seizures along with the Myoclonus. The doctor did put her on some Klonopin each night to help keep them under control.
After the jerks subsided, we only saw them in small spurts. Anytime TLC had a pain or became cold, she would begin having the jerks, mild in strength and repetition. Sometimes it would only be one jerk and other times she might go for a half hour. The jerks mostly just affected her neck and her arm at this time. For three years following, it rarely got bad.
A year ago, we had an attempted home invasion during the middle of the night. The Jerks had started just prior to that; however, they became very intense for a couple months following. The doctor was not worried about it and we continued her as before. Within three months they again went away. She was off the Klonopin at the time and had been for quite sometime prior. We ended up putting her back on it to keep her stable.
Well, this week it returned and we don't know why. She is still on her Klonopin, is not sick and is not in pain or persistently cold. But this time I noticed two different types of events with the jerks. One that is what we refer to as aggressive, they are there then they are gone, usually just a small cluster of jerks. The second was less aggressive, very mild, but constant without a break. It only affected the left side of her body and it was like she was "chair" dancing to the music being played in the room. It continued for an hour and then went away. Even though they were not hard jerks, they were constant almost to a tempo and exhausting.
They come whenever they want, during her sleep at night, during the day, during stressful times and during really fun times. They can be as simple as a finger or eyelid twitch, very hard and painful hiccups to full-body episodes that look like Grand Mal seizures. She can't make them happen and she can't make them stop. She said they hurt even more to try and make them stop. There is just no control over them. And, in our opinion, they are "Really Big Jerks."
Just another stop along our journey, in rare company.
To see a short video of her having a mild jerking episode in her sleep, click here.
The video above shows a mild version of a full body episode. The jerks are sudden and very painful. She has been to the ER at one point with these being ten times as fast and much harder.
The video below shows her having a slightly different episode which occurs constantly, the jerking is milder and it can last anywhere between 30 minutes and two hours. It also only occurs on her left side. The one in this video lasted for one hour. The jerks were focused in her hip; however, you can see a jerk that was focused in her neck a couple times as well.
http://youtu.be/rcHZ4uhr1Gs
For my daughter, she is officially in the club of those that suffer from Myoclonic Jerks. It is no joke. Sadly, the body goes through what we perceive to be giant, full-body hiccups. "The Jerks," as we so unaffectionately refer to them decided to pay her a visit three years ago during the time she had a bad ear infection that would not go away. Every time we put drops in her ears the jerking would begin. They were physically quite violent for her. Sadly, they did not go away when we stopped the ear drops. She would have periods of rest, but never a day went by that she didn't have an issue with them.
We took her to the ER when they started during one of her private music lessons. She couldn't even walk out of the room, I had to drag her to the hall then get a wheelchair. Once we got to the ER, they immediately took her in. By this time she was having upwards of four to six jerks a second. They were very hard, very fast and attacked her whole body. The ER docs were in a panic to find out what was wrong. Then out of nowhere, they stopped. The doctors went ahead and gave her some meds and home we went. The ear infection lasted for about a month and the jerks for a couple of months longer.
She did see her neurologist, had a brain scan for three consecutive nights making it possible to determine that she was not having seizures along with the Myoclonus. The doctor did put her on some Klonopin each night to help keep them under control.
After the jerks subsided, we only saw them in small spurts. Anytime TLC had a pain or became cold, she would begin having the jerks, mild in strength and repetition. Sometimes it would only be one jerk and other times she might go for a half hour. The jerks mostly just affected her neck and her arm at this time. For three years following, it rarely got bad.
A year ago, we had an attempted home invasion during the middle of the night. The Jerks had started just prior to that; however, they became very intense for a couple months following. The doctor was not worried about it and we continued her as before. Within three months they again went away. She was off the Klonopin at the time and had been for quite sometime prior. We ended up putting her back on it to keep her stable.
Well, this week it returned and we don't know why. She is still on her Klonopin, is not sick and is not in pain or persistently cold. But this time I noticed two different types of events with the jerks. One that is what we refer to as aggressive, they are there then they are gone, usually just a small cluster of jerks. The second was less aggressive, very mild, but constant without a break. It only affected the left side of her body and it was like she was "chair" dancing to the music being played in the room. It continued for an hour and then went away. Even though they were not hard jerks, they were constant almost to a tempo and exhausting.
They come whenever they want, during her sleep at night, during the day, during stressful times and during really fun times. They can be as simple as a finger or eyelid twitch, very hard and painful hiccups to full-body episodes that look like Grand Mal seizures. She can't make them happen and she can't make them stop. She said they hurt even more to try and make them stop. There is just no control over them. And, in our opinion, they are "Really Big Jerks."
Just another stop along our journey, in rare company.
To see a short video of her having a mild jerking episode in her sleep, click here.
The video above shows a mild version of a full body episode. The jerks are sudden and very painful. She has been to the ER at one point with these being ten times as fast and much harder.
The video below shows her having a slightly different episode which occurs constantly, the jerking is milder and it can last anywhere between 30 minutes and two hours. It also only occurs on her left side. The one in this video lasted for one hour. The jerks were focused in her hip; however, you can see a jerk that was focused in her neck a couple times as well.
http://youtu.be/rcHZ4uhr1Gs
Subscribe to:
Posts (Atom)