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.
Friday, February 7, 2014
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
Wednesday, November 20, 2013
So you think your child may have Dysautonomia?
Though I am not promoting self diagnosis of your child, I do support empowering parents with knowledge and knowing how to move forward when wondering if their child may have Dysautonomia.
Dysautonomia affects the autonomic nervous system (ans). Dysautonomia can be presented differently in each person that has it, even for identical twins and between parent and child. The information I present will be based on my daughter's reactions and some of the most common reactions that can occur. Dysautonomia is not a diagnosis on its own, but a consortium of diagnoses for conditions related directly to the ANS. Having one or two of these issues does not point toward having Dysautonomia, but having several can lead you in the right direction to a specific diagnosis.
It is very rare for children to have Dysautonomia and never diagnosed prior to the teen years. Only recently has my daughter's doctor started diagnosing children as young as nine years old.
We knew that our daughter was different as a new born, but could not connect these differences to anything in particular. As far as we knew, she was perfectly healthy and had symptoms that other babies could have.
Sleeping Through the Night
Our first clue that something was different was that she was sleeping for four to six hours as a newborn. The doctor complained about her sleeping more than a couple of hours at a time and the need to wake her up and feed her. It was difficult to wake her up and when she did wake up, she would eat very little or not want to eat. I knew that this was not right, but she was hitting all of her growth and weight milestones. Well, weight was an issue as she was in the 10 percentile, but the doctor said not to worry as she was gaining weight. As she got older, she began sleeping up to 15 hours a day. This was not the normal pre-teen/teenager stay up late and sleep all day. She would sleep all night and all day. This was diagnosed as Hypersomnia.
Blue Legs When Held Up Right
Our second clue was that she had blue legs when held upright. As soon as she was returned to a non-restrictive recumbent position, the blueness went away. At first I thought that people were holding her too tightly and cutting off her circulation. However, it happened even when I held her. I quickly learned to always hold her (as a baby) in the recumbent position. As she got older, we lost track of her legs being blue, but about the age of 10 we started noticing it again and realized that it was the same issue as when she was a baby. We have come to know this condition as Acrocyanosis.
Projectile Vomiting
Another prominent problem was projectile vomiting. No matter how she was fed or what she was fed, she always vomited her food clear across the room. Even as she grew older she continued to have vomiting after she ate. By the time she was three, it was in better control, it did not happen with every meal; however, we never knew when it would happen. As a baby, she was test and diagnosed and treated for Pyloric Stenosis. When she was older, she was diagnosed with Gastroparesis.
Early Satiety
In conjunction with the vomiting, our daughter had an inability to eat a normal amount of food, this is called early satiety. She could eat a very small amount and would stop. If she ate too much, she would have stomach cramps and begin vomiting. We were turned into DHR when she was a year old for child abuse because she ate so little. This was one time that DHR did an investigation and found no signs of abuse because she was on the plump side and well cared for. This was related to the Gastroparesis mentioned in the previous paragraph.
Frequent Infections
Our daughter had frequent bacterial and fungal infections that affected her ears, her urinary tract, her digestive tract and her skin. She frequently had mouth ulcers, ringworm, and upper respiratory infections. She has had the flu twice, once when she was three weeks old and the second time when she was seven years old. However, though being heavily exposed to the flu on several occasions she has not had it in the last eight years and she has not acquired the chicken pox.
High Heart Rate
A child's heart rate is much higher than that of an adults. For a girl, it is typically around 140 when born and for a boy slightly less. I did not notice any issues in her heart rate as a baby; however, when she was seven or eight, I started taking notice that her heart rate was not coming down. It was a couple years later before I started asking the doctor about her heart rate. At the time, they would tell me that it was at the high end of normal, but still normal. Each time they took her pulse she was sitting down. About a year later, I found out about POTS and asked the doctor to take her heart rate both sitting and standing. The nurse that took her pulse could not get it while my daughter stood up because her blood pressure dropped. Once she found the heart beat could not believe that it was so high and declared that the equipment was broke. I reminded her that she could take a pulse manually. She did, again and declared that nothing was wrong.
Low Body Temperature and Low Blood Pressure
Our daughter maintained a low body temperature around 96 degrees. She also maintained a low blood pressure (90/50 average). We really did not know about this until she was in her preteens when the doctors we visited started recording them by our request.
Leg Pains (Not Growing Pains)
From the time that she could stand and walk, she always wanted to be carried. She complained of her legs hurting. She never wanted to go anywhere for fear of being there a long time--standing. Everywhere she went, she was slow, always last and took forever. We thought she was being social or too chatty. It turns out it was always a delay tactic. Delaying the inevitable, standing and walking.
We were somewhat oblivious to there being a problem as she began dancing at two years old and continued for years. She was always active. One day when going through pictures from our church's VBS program, I noticed one picture in particular where she was outside at a table with one of the leaders working on a project while the rest of the group was playing competitively in the adjoining field. I asked her about it and she could not explain why. That is when I started worrying what was wrong.
At this time I started noticing more of her complaints regarding her legs, her sitting down more often, avoiding trips to the store, and taking breaks at dance. By the time she was eleven, she struggled in dance and began spraining joints regularly. This is when we started taking her to the doctor to figure out what was wrong. By the time she was twelve, she was in a wheelchair. Her dreams for dancing were dashed. When she was in her teens, she received a diagnosis of Orthostatic Intolerance.
She was early for all her milestones except walking. Though she was not terribly late walking, it was the last one attained and late compared to all the others.
No sweating
Most babies don't sweat and usually don't start until around puberty. Our daughter never did sweat, even as a competitive dancer who practiced for six hours a week. We later found that she had Hypohydrosis. It was specifically because of this condition that we eventually found out by our daughter having Dysautonomia. For others, there can be an issue with excessive sweating, in our case, it was the opposite.
Other Possible Clues
I don't know if these are clues of her condition; however, they were very unusual. She was very alert as a baby, even in the first few weeks, it was like she was studying everyone and everything. She did not cry very often and was very easy going.
Just and FYI -
There are many more conditions and symptoms related to Dysautonomia including migraines, passing out, sensitivity to sound and light, muscle weakness (floppy baby syndrome), etc. Research everything you can and if you believe that your child has Dysautonomia don't stop going to the doctor and getting the right answers. We only found out when realizing that my daughter's diagnosis for Cholinergic and Cold Urticaria did not address all of her problems and kept telling the doctors that she did not sweat. It took 12 years to get their attention and a confirmed diagnosis and an additional three years to get a successful treatment for many of her issues.
My daughter not only has Dysautonomia (Orthostatic Intolerance and POTS), but also has Cholinergic Urticaria (Exercise and Heat Induced), Cold Induced Urticaria and Ehlers Danlos Syndrome III.
Dysautonomia affects the autonomic nervous system (ans). Dysautonomia can be presented differently in each person that has it, even for identical twins and between parent and child. The information I present will be based on my daughter's reactions and some of the most common reactions that can occur. Dysautonomia is not a diagnosis on its own, but a consortium of diagnoses for conditions related directly to the ANS. Having one or two of these issues does not point toward having Dysautonomia, but having several can lead you in the right direction to a specific diagnosis.
It is very rare for children to have Dysautonomia and never diagnosed prior to the teen years. Only recently has my daughter's doctor started diagnosing children as young as nine years old.
We knew that our daughter was different as a new born, but could not connect these differences to anything in particular. As far as we knew, she was perfectly healthy and had symptoms that other babies could have.
Sleeping Through the Night
Our first clue that something was different was that she was sleeping for four to six hours as a newborn. The doctor complained about her sleeping more than a couple of hours at a time and the need to wake her up and feed her. It was difficult to wake her up and when she did wake up, she would eat very little or not want to eat. I knew that this was not right, but she was hitting all of her growth and weight milestones. Well, weight was an issue as she was in the 10 percentile, but the doctor said not to worry as she was gaining weight. As she got older, she began sleeping up to 15 hours a day. This was not the normal pre-teen/teenager stay up late and sleep all day. She would sleep all night and all day. This was diagnosed as Hypersomnia.
Blue Legs When Held Up Right
Our second clue was that she had blue legs when held upright. As soon as she was returned to a non-restrictive recumbent position, the blueness went away. At first I thought that people were holding her too tightly and cutting off her circulation. However, it happened even when I held her. I quickly learned to always hold her (as a baby) in the recumbent position. As she got older, we lost track of her legs being blue, but about the age of 10 we started noticing it again and realized that it was the same issue as when she was a baby. We have come to know this condition as Acrocyanosis.
Projectile Vomiting
Another prominent problem was projectile vomiting. No matter how she was fed or what she was fed, she always vomited her food clear across the room. Even as she grew older she continued to have vomiting after she ate. By the time she was three, it was in better control, it did not happen with every meal; however, we never knew when it would happen. As a baby, she was test and diagnosed and treated for Pyloric Stenosis. When she was older, she was diagnosed with Gastroparesis.
Early Satiety
In conjunction with the vomiting, our daughter had an inability to eat a normal amount of food, this is called early satiety. She could eat a very small amount and would stop. If she ate too much, she would have stomach cramps and begin vomiting. We were turned into DHR when she was a year old for child abuse because she ate so little. This was one time that DHR did an investigation and found no signs of abuse because she was on the plump side and well cared for. This was related to the Gastroparesis mentioned in the previous paragraph.
Frequent Infections
Our daughter had frequent bacterial and fungal infections that affected her ears, her urinary tract, her digestive tract and her skin. She frequently had mouth ulcers, ringworm, and upper respiratory infections. She has had the flu twice, once when she was three weeks old and the second time when she was seven years old. However, though being heavily exposed to the flu on several occasions she has not had it in the last eight years and she has not acquired the chicken pox.
High Heart Rate
A child's heart rate is much higher than that of an adults. For a girl, it is typically around 140 when born and for a boy slightly less. I did not notice any issues in her heart rate as a baby; however, when she was seven or eight, I started taking notice that her heart rate was not coming down. It was a couple years later before I started asking the doctor about her heart rate. At the time, they would tell me that it was at the high end of normal, but still normal. Each time they took her pulse she was sitting down. About a year later, I found out about POTS and asked the doctor to take her heart rate both sitting and standing. The nurse that took her pulse could not get it while my daughter stood up because her blood pressure dropped. Once she found the heart beat could not believe that it was so high and declared that the equipment was broke. I reminded her that she could take a pulse manually. She did, again and declared that nothing was wrong.
Low Body Temperature and Low Blood Pressure
Our daughter maintained a low body temperature around 96 degrees. She also maintained a low blood pressure (90/50 average). We really did not know about this until she was in her preteens when the doctors we visited started recording them by our request.
Leg Pains (Not Growing Pains)
From the time that she could stand and walk, she always wanted to be carried. She complained of her legs hurting. She never wanted to go anywhere for fear of being there a long time--standing. Everywhere she went, she was slow, always last and took forever. We thought she was being social or too chatty. It turns out it was always a delay tactic. Delaying the inevitable, standing and walking.
We were somewhat oblivious to there being a problem as she began dancing at two years old and continued for years. She was always active. One day when going through pictures from our church's VBS program, I noticed one picture in particular where she was outside at a table with one of the leaders working on a project while the rest of the group was playing competitively in the adjoining field. I asked her about it and she could not explain why. That is when I started worrying what was wrong.
At this time I started noticing more of her complaints regarding her legs, her sitting down more often, avoiding trips to the store, and taking breaks at dance. By the time she was eleven, she struggled in dance and began spraining joints regularly. This is when we started taking her to the doctor to figure out what was wrong. By the time she was twelve, she was in a wheelchair. Her dreams for dancing were dashed. When she was in her teens, she received a diagnosis of Orthostatic Intolerance.
She was early for all her milestones except walking. Though she was not terribly late walking, it was the last one attained and late compared to all the others.
No sweating
Most babies don't sweat and usually don't start until around puberty. Our daughter never did sweat, even as a competitive dancer who practiced for six hours a week. We later found that she had Hypohydrosis. It was specifically because of this condition that we eventually found out by our daughter having Dysautonomia. For others, there can be an issue with excessive sweating, in our case, it was the opposite.
Other Possible Clues
I don't know if these are clues of her condition; however, they were very unusual. She was very alert as a baby, even in the first few weeks, it was like she was studying everyone and everything. She did not cry very often and was very easy going.
Just and FYI -
There are many more conditions and symptoms related to Dysautonomia including migraines, passing out, sensitivity to sound and light, muscle weakness (floppy baby syndrome), etc. Research everything you can and if you believe that your child has Dysautonomia don't stop going to the doctor and getting the right answers. We only found out when realizing that my daughter's diagnosis for Cholinergic and Cold Urticaria did not address all of her problems and kept telling the doctors that she did not sweat. It took 12 years to get their attention and a confirmed diagnosis and an additional three years to get a successful treatment for many of her issues.
My daughter not only has Dysautonomia (Orthostatic Intolerance and POTS), but also has Cholinergic Urticaria (Exercise and Heat Induced), Cold Induced Urticaria and Ehlers Danlos Syndrome III.
Thursday, October 31, 2013
My Favorite Websites / Blogs
Websites:
Cold Urticaria
http://www.jaoa.org/content/101/5_suppl/1S.full.pdfFacebook:
Kidz 4 CUCold Urticaria Parents
Cold Induced Urticaria
Cold Urticaria- Yep you can actually be allergic to the cold.
I really am allergic to cold!
Blogs:
http://www.pilgrimagegal.com/search?updated-min=2013-01-01T00:00:00-05:00&updated-max=2014-01-01T00:00:00-05:00&max-results=36Ciprodex - Fluoroquinolones
http://floxiehope.com/2013/07/28/ciprodex-poison-marketed-to-children/Articles:
Cold Urticaria
http://www.washingtonpost.com/lifestyle/on-parenting/how-to-parent-while-having-a-chronic-disease/2013/11/06/fae3176a-463d-11e3-b6f8-3782ff6cb769_story_1.htmlhttp://www.today.com/id/41466518/#.UnKUWVOojAc
http://abcnews.go.com/blogs/health/2012/11/15/kids-allergic-to-the-cold-literally/
http://www.dailymail.co.uk/health/article-2113825/Abbie-Tully-12-allergic-cold-deadly-allergic-reaction-slightest-chill.html
http://usatoday30.usatoday.com/news/health/medical/health/medical/coldflu/story/2012-01-23/Allergic-to-cold-Its-a-real-condition-experts-say/52759906/1
http://www.nbcnews.com/health/allergic-cold-gene-detectives-find-new-clues-1C6435965
Advocacy
http://www.parentcenterhub.org/Wednesday, October 30, 2013
Walking the Walk Part II
With much anxiety, we returned to our journey of seeing doctors attempting to get answers. To our amazement, the first leg of our journey went very smoothly. We found a local specialist for our daughter's Dysautonomia. He changed her meds which has given her a new lease on life. She is no longer chained to excessive sleepiness and excruciating pain when standing from the blood pooling. The jerks are very minimal. They are now being expressed as aggressive hiccups, but not as bad as before.
We took the second leg in our journey attempting to get a diagnosis for the joint issues. To our amazement, the doctor had diagnosed our daughter two years ago with Ehlers Danlos. Sadly we were never informed. I was so exhausted at the time from bad doctors visits that I never even asked for a copy of her records. Regardless, having this answer right off the bat was such a relief. We were able to get a script for physical therapy from a physical therapist who understands what you can and cannot do with someone with this condition. We are currently trying to find someone locally, if not, we will just travel back north at least monthly for her to learn what she needs to do.
Do you know what a relief it is to have answers? It is amazing. We may not like the answers, but we now know how to work with our daughter to give her the support she needs. We now know that there are answers out there. I know that I will forever take my husband on appointments with us, he is now our rabbit's foot. Every time he is with us, we get answers.
We took the second leg in our journey attempting to get a diagnosis for the joint issues. To our amazement, the doctor had diagnosed our daughter two years ago with Ehlers Danlos. Sadly we were never informed. I was so exhausted at the time from bad doctors visits that I never even asked for a copy of her records. Regardless, having this answer right off the bat was such a relief. We were able to get a script for physical therapy from a physical therapist who understands what you can and cannot do with someone with this condition. We are currently trying to find someone locally, if not, we will just travel back north at least monthly for her to learn what she needs to do.
Do you know what a relief it is to have answers? It is amazing. We may not like the answers, but we now know how to work with our daughter to give her the support she needs. We now know that there are answers out there. I know that I will forever take my husband on appointments with us, he is now our rabbit's foot. Every time he is with us, we get answers.
Wednesday, September 11, 2013
Medicating for Cold Urticaria
No one medicine that you or a child can take on a daily basis will prevent you from breaking out to cold once you have CU. As a matter of fact, researchers have found the best outcomes come when mixing two or more (H1 and H2) histamine blockers. They have also found a marked improvement in reactions when Singulair is combined with at least two antihistamines. In English, H1 blockers are your everyday antihistamine allergy meds. H2 blockers are antacids.
In most studies, they have found that Cyproheptadine (Periactin), Hydroxizine (Atarax) and Montelukast (Singulair) provide the best control on the majority of patients; however, doctors never start out using these meds due to their side effects. For children, doctors will start with over the counter meds and preferably with non-sedating meds like Claritin and Allegra. For individuals with more complex reactions and/or are resistant to these meds, doctors start working their way to more powerful meds and those that are sedating.
Any given combination that works for one person is not guaranteed for another person. If you don't find what works for you keep working with your doctor to try other combinations. As a child grows, they will out grow their dosing, so if a med stops working, talk to the doctor and find out if doses can be increased or determine if your child needs a new med.
Also, when a medication causes drowsiness, a doctor will usually suggest you or your child taking it before bed time; however, some will experience the drowsiness at the time of waking up or early in the morning as the medication is wearing off. You may find moving the time the med is taken to earlier in the day (2 hours earlier) so that the wearing off of the med occurs during the night, the child will feel much better in the morning.
In our experience, no medication and no combination of medications prevents all reactions; however, the difference in what they do prevent is the difference between being functional and non-functional. Preventing reactions is a multi-tiered approach involving medications, preventative actions in where you go and how you dress and knowing when to just say, "no, I can't do it."
In most studies, they have found that Cyproheptadine (Periactin), Hydroxizine (Atarax) and Montelukast (Singulair) provide the best control on the majority of patients; however, doctors never start out using these meds due to their side effects. For children, doctors will start with over the counter meds and preferably with non-sedating meds like Claritin and Allegra. For individuals with more complex reactions and/or are resistant to these meds, doctors start working their way to more powerful meds and those that are sedating.
Any given combination that works for one person is not guaranteed for another person. If you don't find what works for you keep working with your doctor to try other combinations. As a child grows, they will out grow their dosing, so if a med stops working, talk to the doctor and find out if doses can be increased or determine if your child needs a new med.
Also, when a medication causes drowsiness, a doctor will usually suggest you or your child taking it before bed time; however, some will experience the drowsiness at the time of waking up or early in the morning as the medication is wearing off. You may find moving the time the med is taken to earlier in the day (2 hours earlier) so that the wearing off of the med occurs during the night, the child will feel much better in the morning.
In our experience, no medication and no combination of medications prevents all reactions; however, the difference in what they do prevent is the difference between being functional and non-functional. Preventing reactions is a multi-tiered approach involving medications, preventative actions in where you go and how you dress and knowing when to just say, "no, I can't do it."
Tuesday, September 3, 2013
First Step in Walking the Walk
>> Previous Post >>TLC is now able to visit a clinic just over a hundred miles away that is
specific to Dysautonomia. As we do this, we are cutting ties with the
neurologist at Children's. We hope that there are not any changes to
her existing meds as they are all working just fine. However, we do
want to have a doctor to consult with locally that knows and understands
what is going on with her nervous system issues. We have heard from
some that they will only be able to work with the Dysautonomia and will
not be able to help with the Cold / Heat Urticaria and the Ehlers
Danlos. However, this will be a big improvement over a doctor that does
not know anything about any of them and can only try to treat the
symptoms.>>>>
We had completed the first leg in our journey of Walking the Walk. A week ago Monday, we visited the Dysautonomia Clinic. Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later. One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in. We were the first ones there, but we made it.
We all went into the nurses office. She asked many questions, some no's, but many yes'. As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing. Her dad and I remained in the waiting room until the testing was completed. Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not. It left me a little nervous.
The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor. In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time. He was in his 70's a little feeble looking, he kept asking some of the same questions over. I allowed my daughter to answer all the questions that she could with out me interjecting. However, there were times the brain fog crept in. It was difficult for her, she was either confused or forgetful. I answered when I could. I soon realized, he was testing her brain fog.
On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176. Based on the testing, we found that her current heart medication was not working. Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication. He calmly explained the change and that most with DYS respond well to the Beta Blocker. He also suggested two other medications. One she had taken before which would both help her sleep and also prevent the jerks. The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.
He wants us to follow up with him and keep him aware of how she is doing. He knows the meds may have to be adjusted and is willing and ready at any given time. He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.
We are now one week out from the appointment. The first full night of meds was like a miracle being performed. TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up. This has continued every morning since. Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks. She did not know what to do to fill all this extra time she is awake. Not just up and moving around, but truly AWAKE. The first day she talked nearly non-stop. That has stopped, but she is once again like a "normal" person.
Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.
Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold. We give so little, yet ask so much.
Thank you, Lord, for your many blessings. We love you and remain faithful during the difficult times and we choose the same during the good times. May we continue to honor you in all we do!
We had completed the first leg in our journey of Walking the Walk. A week ago Monday, we visited the Dysautonomia Clinic. Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later. One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in. We were the first ones there, but we made it.
We all went into the nurses office. She asked many questions, some no's, but many yes'. As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing. Her dad and I remained in the waiting room until the testing was completed. Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not. It left me a little nervous.
The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor. In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time. He was in his 70's a little feeble looking, he kept asking some of the same questions over. I allowed my daughter to answer all the questions that she could with out me interjecting. However, there were times the brain fog crept in. It was difficult for her, she was either confused or forgetful. I answered when I could. I soon realized, he was testing her brain fog.
On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176. Based on the testing, we found that her current heart medication was not working. Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication. He calmly explained the change and that most with DYS respond well to the Beta Blocker. He also suggested two other medications. One she had taken before which would both help her sleep and also prevent the jerks. The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.
He wants us to follow up with him and keep him aware of how she is doing. He knows the meds may have to be adjusted and is willing and ready at any given time. He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.
We are now one week out from the appointment. The first full night of meds was like a miracle being performed. TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up. This has continued every morning since. Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks. She did not know what to do to fill all this extra time she is awake. Not just up and moving around, but truly AWAKE. The first day she talked nearly non-stop. That has stopped, but she is once again like a "normal" person.
Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.
Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold. We give so little, yet ask so much.
Thank you, Lord, for your many blessings. We love you and remain faithful during the difficult times and we choose the same during the good times. May we continue to honor you in all we do!
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