So, there wasn't a literal crash. It was just a decline that became desperate starting in January after climbing on a water obstacle course. Bean didn't get better after that adventure. She got worse and worse until she was homebound and in a wheel chair for almost all walking. She was down to an average of 150 steps a day with her hips subluxating with nearly every attempt.
While things looked dire, we tried the inensive rehab therapy in downtown Chicago through the RIC pain clinic. We went into it thinking they would help us define the correct support devices for Bean and help her to begin walking again, but this program was not geared for the type of EDS issues that Bean was dealing with. It is a pain clinic geared toward people with chronic pain and the fit was not perfect. There were problem areas where therapists in PT or OT would tell her to ignore burning nerve pain and to push through dislocating shoulders and end of limit pain. While this may work for some situations, it created quite a bit of discord for this situation.
So, after giving that program a good effort and 6 weeks, we stopped and Bean saw her specialist, Dr. Tinkle. Dr. Tinkle knows more about this than anyone we've ever encountered and he was wonderful with Bean. He told her what she needed to hear, educated her, and listened to her, too. I believe that the combination of meeting with him and stopping the RIC program gave her a new energy. She wanted to try walking again. She was asking me to take her out and walk. I was shocked. After months of her giving up, she wanted to fight!
Initially, 100 steps was enough, but it quickly went to 400, then 800 and one day last week she made it to a collective 3000 steps over the course of a day. Our current goal is to get her walking in school without a wheel chair this fall. She will likely still need the chair for flare ups and for longer walking or standing situations, but this progress is amazing and we are renewed and hopeful, again.
She is still not able to do stairs very well. This causes a great deal of pain in her hips, and subluxations. With that comes a fear of falling, as she has lost her hip control on stairs too many times in the past. To help this stiuation, we have moved her living space from the top floor to the ground floor for the past 5 months, and the whole family is now relocating to a house where all the living space is on the main ground floor. This will help keep Bean included in all family activities.
So, we have a post that is positive. It's hopeful. It's heading a direction of ability in a world of decline. I am proud of my girl for each and every step and I hope to come back with more postings that build on this strength and hope.
Day 14 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 13 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 15 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 12 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 15 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 11 of 1 A Day in May Raising Awareness with Tay
Day 11 features a guest zebra...my 14 year old niece Nikita! She shares her own drawing and sentiment to help raise awareness in May.
Click, copy, and share! My niece, Nikita, joins the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Click, copy, and share! My niece, Nikita, joins the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Day 10 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Day 9 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Day 8 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 7 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 6 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 5 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 4 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 3 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 2 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
You’re Stronger than you Seem
by Laura Schmitt
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - AA Milne” Christopher Robin says to Pooh Bear, as they sit side by side. This bear of little brain may not ever bounce high like Tigger, or soar like Owl, but he is always a source of love and strength for the entire hundred acre wood family through his constant simplistic loving nature. Pooh, fluff protruding and stitches popping, manages to pull together an unlikely cast of characters and hold them with the most important strength of all...love and friendship. If we looked at Pooh Bear, we may only notice a worn stuffed toy, but if we focus on the heart of the character, we can find ourselves tumbling into a wealth of strength that bounces and soars. It is because of this bit of magic that we all learn to look deeper while we search for surprises in the world of Disney. Like Pooh Bear, my oldest child hides an extraordinary strength that others will not see by looking with their eyes, but anyone who knows her will experience and appreciate what that really looks like.
10 years ago, a Mom, Dad, 6 year old girl and her 4 year old sister visited Walt Disney World for the first time and during that visit, the 6 year old marveled with astonishment at how large Piglet was in person, and how lovely it was to run through the hundred acre wood in real life. All smiles, gasps of astonishment, and laughter, we delighted with such extreme during that first visit that we went back to Walt Disney World 9 times in the decade that followed. Life brought us many changes during that time period, and the most notable for my daughter was the introduction of her disease. Our daughter was diagnosed with Ehlers Danlos Syndrome (EDS), a disease of the connective tissue that affects the entire body. For her, this meant a deterioration of her joints and daily shoulder dislocations that have progressed to hip subluxations and fainting. Life has turned upside for all of us as we try to smooth all paths for a child who could no longer bounce her way through life.
As EDS has claimed more and more of our child, we found that in Disney World, the magic is ‘one size fits all’. When she could no longer walk, or ride jarring rides, or stand for long periods, we found that in the parks, and with a wheelchair, she could still be that strong little bear who delighted at a towering Piglet and lit up at the site of a real life castle. Disney offers it magic to everyone in the same loving and inclusive way that Pooh Bear embraces Piglet. He doesn’t look at his frightened little friend and think “this won’t be for you”. Instead, he stands by him and they travel each path together. Disney manages this is by allowing access to disabled people through cleverly designed park spaces, handicapped entrances, and wonderfully trained cast members across the parks. The system for transferring to and from a wheelchair is as graceful and easy as stepping in and out of a ride when working with the incredible cast members. Even the entertainment comes in bursts of spectacle geared for any body ability. There are new amazements to enjoy, experience and encounter with every new trip to the parks.
Planning for a visit Magic Kingdom over a very busy spring break, we plan ahead and go into park for an advanced dining reservation before park opening. This helps our daughter by letting her avoid that large and incredibly frightening crowd upon entering the park. We glide from a wonderful breakfast straight to the honeypots that tour us through Pooh’s magical storybook, and laugh the whole time. I don’t know if she remembers her early years of story time on my lap, as we read this very adventure day after day, or if she her own readings of AA Milne are fresher in her mind, but I watch the words falling from the pages and marvel that we are back in the story, again.
Because the park is flat, and the lines allow the width of her chair, it is easy for us to navigate with her confined to her safe space. From that ride, we move on to other family favorites, all accommodating for her abilities, such as Haunted Mansion, Philharmagic, Pirates of the Caribbean, The Laugh Floor, and more. If she has enough energy to stay into the afternoon, we watch the parade from the safe wheelchair designated space roped off by cast members, and maybe even enjoy some dairy free root beer floats from Main Street.
It can be hard for a bear of little brain to “think, think, think”, and in the stories, we find Pooh frustrated that he can’t remember what he set out to do. For my daughter, it’s hard to see eyes on her for being in a wheelchair. She feels like people are judging her, or wondering what is wrong with her, which from natural curiosity, they may be. You see, she can stand up, and walk for a bit, and everything will look completely normal. She does not look like she has a disability. What others can’t see if that as she freezes and grimaces, her shoulder has slid out of it’s socket, or her hip has subluxated partially out of it’s socket. She concentrates on putting it back where it belongs without further injury, and this happens so many times each day, we have given up keeping count. Another thing they cannot see is the blinding, burning, and sometimes numbing pain. Because May is Ehlers Danlos Awareness month, I wanted to share this with our fellow Disney fans. Like us, you may embrace the parks, the movies, the magic, and we may even see some of you at Magic Kingdom on a day in the near future. I’d ask that you remember that not all disabilities are visible.
Despite the pain and struggle my little bear faces each day, she shows remarkable strength. She doesn’t know it. She meekly thinks of herself as a scared and timid little piglet, in many ways, but the fact that she perseveres through pain, dislocations, and fainting sessions, and keeps moving forward is enough to make me cheer for her every day, “You're braver than you believe, and stronger than you seem, and smarter than you think.”! At Disney World, where she is included in all aspects of the magic, her laughter soars and her smile bounces throughout our time away. The magic in the air is almost healing, in a way, because she seems lighter and happier where it is so easy to be immersed in good times with family, and old storybook friends. There is no cure for Ehlers Danlos Syndrome, but we keep hoping that the marvels of medicine will come up with something in her lifetime. If Disney taught us anything it’s that anything you can dream can come true, so we keep raising awareness, dreaming big, and savoring our magical moments together whenever and wherever we find them.
10 years after their first visit to Walt Disney World, a Mom, a Dad, a 16 year old girl and a 14 year old girl are heading back to their favorite, inclusive, and magical place. The very first thing they will do is stop in for breakfast and a hug from their favorite storybook friends at Crystal Palace. You may even see them as you go about your own magic sort of day. You can be certain that “wherever they go, and whatever happens to them on the way, in that enchanted place... they will always be playing. - AA Milne”
Publication link from AllEars as Guest Blogger.
Publication link from AllEars as Guest Blogger.
Intensive Physical Therapy Rehab
Here we are a skip away from Ehlers Danlos Awareness month and it has been a month of heart ache. Bean's hips and shoulders have gotten worse in the past 4 months. Her walking is greatly reduced. She has switched to a wheelchair to get around the school, but she cannot attend the majority of the time due to so many painful and frequent dislocations. She is losing strength and motivation, which is a bad combination. We started seeing a Therapist to help talk through these difficult feelings. I say "we" a lot, when really it is all her. I am a part of her process, but I don't know the pain she struggles with. I am just here to support and learn, help and love.
I have learned that I cannot lift a teenager who is unable to get up after all limbs have dislocated at once. We are working on talking through strategy to get limbs back in place, one at a time, using core strength and so far, she is doing a good job of this. She no longer uses the stairs and stays on the first floor of the house. She will do stairs once in a while, but it is very difficult and scary for her, so she opts not to use them unless it is really necessary.
If you have read the past posts, you can see we are going in the wrong direction, but that doesn't mean we have given up on hope for the right direction to make itself known. Currently, our EDS medical team is working to find an intensive physical therapy rehab group that can work with this unique situation. They recommend she do homebound school for the remainder of the year and focus on this rehab as priority one. We are all on board with this, as what we are doing doesn't seem to be helping.
I'll be back with posts for awareness and hope throughout May, and I hope to read your stories and comments, too. I've been following Meg's journey and she continues to break my heart and inspire me all at the same time.
I have learned that I cannot lift a teenager who is unable to get up after all limbs have dislocated at once. We are working on talking through strategy to get limbs back in place, one at a time, using core strength and so far, she is doing a good job of this. She no longer uses the stairs and stays on the first floor of the house. She will do stairs once in a while, but it is very difficult and scary for her, so she opts not to use them unless it is really necessary.
If you have read the past posts, you can see we are going in the wrong direction, but that doesn't mean we have given up on hope for the right direction to make itself known. Currently, our EDS medical team is working to find an intensive physical therapy rehab group that can work with this unique situation. They recommend she do homebound school for the remainder of the year and focus on this rehab as priority one. We are all on board with this, as what we are doing doesn't seem to be helping.
I'll be back with posts for awareness and hope throughout May, and I hope to read your stories and comments, too. I've been following Meg's journey and she continues to break my heart and inspire me all at the same time.
POTS. Salt, salt and more salt
To combat the sodium problem, the original recommendation was for my daughter to drink Gatorade every day. Gatorade has a lot of sodium, granted, but it also has artificial ingredients and sugar. A little investigation revealed that if you purchase the
G2 line of gatorade, you get a lower sugar product that does not contain the same crazy ingredients, and they even have some clear varieties that avoid coloring agents. So, that is good, but it still delivers sugars and without the movement of regular exercise, that is not great, so we add a lot of salt to food, but we still need her drinking plenty of liquids and it's been a challenge to keep the levels high enough to make the impact that is required to reduce the POTS symptoms and raise that blood pressure.
A co-worker recommended a product to us that is an
electrolyte powder packet from Pure. It contains some sodium (not as much as a gatorade, but still a nice amount) and some magnesium, which is also recommended. I like that the magnesium dose is small enough to not bother her touchy stomach, and I like that this product does not contain a long list of minerals and amino acids. We don't need all of those ingredients, so this seems pretty good. The only problem is the flavor. It is a powder that you mix with water. To me it tastes like nothing....like water, but to my daughter, it is like drinking a glass of sweat. So, that is not an option for regular use.
Douglas Labs make a similar product in a capsule format (Klean Electrolytes), which would be much more doable for my daughter. The only problem with this is that I don't know exactly how much she should receive and if the other ingredients would get too high if we went to the level she needed of the sodium/mg. I have that question out to a pharmacist at the moment and I will follow up with the answer when it comes in.
Finally, there are basic salt tablets that deliver sodium, alone. The amount of sodium is about the same in one tablet as in 2 gatorades. That is very targeted and perhaps it is where we need to go. The doctor did suggest it as an option, though I am not sure how to take such high doses of sodium and not throw the body off in terms of ATP or general hydration. I feel like we need more specific guidance rather than "increase sodium intake". This will require a bit more research. In the meantime, I will wait to hear back from the pharmacist and start my question list for follow up with the doctor. My hope is that the right balance of sodium, liquids, and compression garments will prevent the need for blood pressure raising medication at this time.
G2 line of gatorade, you get a lower sugar product that does not contain the same crazy ingredients, and they even have some clear varieties that avoid coloring agents. So, that is good, but it still delivers sugars and without the movement of regular exercise, that is not great, so we add a lot of salt to food, but we still need her drinking plenty of liquids and it's been a challenge to keep the levels high enough to make the impact that is required to reduce the POTS symptoms and raise that blood pressure.
A co-worker recommended a product to us that is an
electrolyte powder packet from Pure. It contains some sodium (not as much as a gatorade, but still a nice amount) and some magnesium, which is also recommended. I like that the magnesium dose is small enough to not bother her touchy stomach, and I like that this product does not contain a long list of minerals and amino acids. We don't need all of those ingredients, so this seems pretty good. The only problem is the flavor. It is a powder that you mix with water. To me it tastes like nothing....like water, but to my daughter, it is like drinking a glass of sweat. So, that is not an option for regular use.
Douglas Labs make a similar product in a capsule format (Klean Electrolytes), which would be much more doable for my daughter. The only problem with this is that I don't know exactly how much she should receive and if the other ingredients would get too high if we went to the level she needed of the sodium/mg. I have that question out to a pharmacist at the moment and I will follow up with the answer when it comes in.
Finally, there are basic salt tablets that deliver sodium, alone. The amount of sodium is about the same in one tablet as in 2 gatorades. That is very targeted and perhaps it is where we need to go. The doctor did suggest it as an option, though I am not sure how to take such high doses of sodium and not throw the body off in terms of ATP or general hydration. I feel like we need more specific guidance rather than "increase sodium intake". This will require a bit more research. In the meantime, I will wait to hear back from the pharmacist and start my question list for follow up with the doctor. My hope is that the right balance of sodium, liquids, and compression garments will prevent the need for blood pressure raising medication at this time.
Irish EDS and HMS information
This site has some very helpful information for explaining EDS to schools, teachers, family and friends. Especially helpful are the pamphlets geared toward children, found here.
Check out their site for photos that simplify what types of movements fall into the hypermobility category, without having to perform the human tricks to show others. I am curious if Irish ancestry plays a heavy role in the genetic trait. I know we have family from Ireland, if we follow the family tree back a ways, but I don't know where this genetic condition is most common. Check out the great information found on the Irish EDS & HMS site, here, and follow them on facebook for more information to share on rare disease day and EDS awareness month.
Tilt Table Test
I will come back to delve into this further, but the tilt table test was done today. She threw up afterwards, 3 times, and the doctor told us that is not normal. He said she has clear POTS based on the testing. The doctor advised 2 medications. One to lower blood pressure and the other to act as a stimulant to the central nervous system. He also advised starting the medicine slowly, and using compression socks daily.
Again, I will come back and fill in more details, but I wanted to get this down quickly.
---Follow up a little over one week later---
We have started with compression sleeves at about 20 for pressure. These seem to be helping, or we are just lucky. We're being very careful to make sure she gets her fluids before getting out of bed, and lots of salt! We've also been trying different electrolyte drinks and powders. So far, she hates all of them, except some gatorade. So, the G2 is lower in sugar, lower in artificial junk, and that is our current choice (plus all usual liquids). This is helping...I think.
We haven't started the medicine yet, as we wanted to see how she responds to the other things, when applied consistently.
---Follow up in April ---
The tilt table testing caused some off kilter balancing in her system. She threw up immediately after the test, and multiple times that day, and then the following week. Ever since, she has had constant motion sickness in vehicles, which she never had before. She experiences the nausea daily, which is new since that test, and she is still upset about the actual testing experience. She would not recommend it or advise to another EDS-er in her situation.
Again, I will come back and fill in more details, but I wanted to get this down quickly.
---Follow up a little over one week later---
We have started with compression sleeves at about 20 for pressure. These seem to be helping, or we are just lucky. We're being very careful to make sure she gets her fluids before getting out of bed, and lots of salt! We've also been trying different electrolyte drinks and powders. So far, she hates all of them, except some gatorade. So, the G2 is lower in sugar, lower in artificial junk, and that is our current choice (plus all usual liquids). This is helping...I think.
We haven't started the medicine yet, as we wanted to see how she responds to the other things, when applied consistently.
---Follow up in April ---
The tilt table testing caused some off kilter balancing in her system. She threw up immediately after the test, and multiple times that day, and then the following week. Ever since, she has had constant motion sickness in vehicles, which she never had before. She experiences the nausea daily, which is new since that test, and she is still upset about the actual testing experience. She would not recommend it or advise to another EDS-er in her situation.
POTS, fainting and wheelchairs
Well, kiddo climbed a mountain, so to speak, during her little sisters birthday party. She participated in a climbing event that left both her father and I in shock that she could do it! The smile on her face was worth the world. She was so happy, just being a kid.
Fast forward 2+ weeks and she has been dislocating and subluxing daily without the ability to walk more than 15 feet. Her body is screaming at her with every movement as if to say "What were you thinking, treating me like that?". Still, 2 weeks out, she says it was worth it.
This past weekend we saw a bit of improvement, however, today she fainted in school while sitting in her wheelchair. That baffles me. I thought the fainting was only when standing up, sympathetic nervous system, blood pressure etc? This is new, and it isn't good. The one explanation I can muster is to think she overheated, as she did have her winter coat and scarf on, indoors. Still, it's not a comforting feeling over here. Next week is the tilt table test, and new orthotics, so we'll see how that goes.
In the meantime, wheelchairs, help on the stairs, and limited movements while trying to add in some isometric exercises from PT. Plus she has started taking more medicine. Of course we hoped to avoid that, but Aleve was about as effective as water, so she is trying Meloxicam in the morning, and 1/2 tramodol to help get through a half day of school. Voltran gel applied, topically, to the neck. Even a little aromatherapy from a www.BeanTreeSoap.com essential oil rollerball. We'll try anything that may help.
This is another day in the life with EDS.
Fast forward 2+ weeks and she has been dislocating and subluxing daily without the ability to walk more than 15 feet. Her body is screaming at her with every movement as if to say "What were you thinking, treating me like that?". Still, 2 weeks out, she says it was worth it.
This past weekend we saw a bit of improvement, however, today she fainted in school while sitting in her wheelchair. That baffles me. I thought the fainting was only when standing up, sympathetic nervous system, blood pressure etc? This is new, and it isn't good. The one explanation I can muster is to think she overheated, as she did have her winter coat and scarf on, indoors. Still, it's not a comforting feeling over here. Next week is the tilt table test, and new orthotics, so we'll see how that goes.
In the meantime, wheelchairs, help on the stairs, and limited movements while trying to add in some isometric exercises from PT. Plus she has started taking more medicine. Of course we hoped to avoid that, but Aleve was about as effective as water, so she is trying Meloxicam in the morning, and 1/2 tramodol to help get through a half day of school. Voltran gel applied, topically, to the neck. Even a little aromatherapy from a www.BeanTreeSoap.com essential oil rollerball. We'll try anything that may help.
This is another day in the life with EDS.
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