(From Mik’s Mom) Do you have a no good doctor overlooking your teen’s dysautonomia care? We went through a couple of bad apples before Mik was finally diagnosed in 2010, then we found a team that fits us. They are NOT GOOD. They are GREAT!!
This post is about how we can make dysautonomia symptoms better and never stopping to find a team that partners WITH you, not against you.
A little about Mik’s team of doctors and their dedicated medical team all of whom we, and hundreds of their other patients, would literally be lost without……Who Mik and I joke that they each could easily retire stress free and live a quiet life on a beautiful island somewhere far away from the unpredictable and sometimes (okay frequently) frustrating world of dysautonomia.
Instead they choose to move forward on this path with us. They could take the easy road. They definitely chose the road less traveled. Less known. Less “popular” in terms of all the other just as important medical illnesses and conditions.
Some may mistakenly think we sing their praises because we get special treatment or some super duper special number that gets us in an appointment sooner (we don’t – trust me, we wait just as long to see these specialists who have been bombarded more than you could know from hundreds of people who need help.).
We sing their praises because of their dedication. Their many hours of lost sleep trying to determine which combination of treatments will work for any given patient (which we all know is not a cookie cutter treatment plan for all). This dedicated (angels!) team is the Dysautonomia Clinic for Excellence in Houston, Tx.
Since Mik is on the research end of the treatment now, I can tell you firsthand how this medical team evaluates, evaluates and evaluates more before they try something on my kid. Nothing is taken lightly … Even when Mik and I are to the point on those extra difficult dysautonomia symptom days to try ANYTHING, they cautiously analyze benefits/risks before moving forward. Because they care. Because they are dedicated.
Yes, we have hit many roadblocks on Mik’s journey with unbelieving medical doctors (before she met this team and different hospitals). After meeting her dream team of doctors, we have had an occasional appointment moved because of a doctor emergency when he was needed urgently elsewhere. Yes, we have had bumps at the hospital when -rightfully – other patients in a higher bracket of urgent need had to have the bed Mik was assigned to and we were sent home.
What you don’t hear is us complain about it. Oh yes, you have heard the Momma Grizzly Bear come out when we were at an out of town ER and the doctor was literally mocking Mik as “Dysautonomia is in her head”. Or my frustration on those difficult dysautonomia days when I have a temporary “focus on the big picture” loss and just plain angry that my daughter’s youth has been ripped away. (Though she would have missed her calling to spotlight hidden teens without this… Normal Momma Bear always searches for the silver lining)
You don’t hear the hiccups we have on this path with her team at the Dysautonomia Center for Excellence because there are just SO many more blessings, good news and HOPE to share with you instead of the few stumbles. Because you know what? There is one definite in dysautonomia world… There will be stumbles. Medicines need to be tried. Different dosages. Physical therapy needs to adjusted. Every day is different. We have to have the patience of Job to get through Dysautonomia life… And this can include offering a little grace to the medical teams who DO try to make a difference.
And her medical team is human. And though they make me feel like we are people and not an unimportant number, I have to remind myself that I am one momma bear of HUNDREDS that contact them each week. So if a message has not been returned as quick as I need, I remind myself that I just might need to send another one as a reminder. It’s not personal. They DO care. It’s just they are a few to the hundreds of us.
And if I think Mik’s need is urgent, then I have to make the call to take her directly to the ER at Children’s Memorial Hermann Hospital where I know someone from the Dysautonomia team can see her in person. If it’s not this serious, then I have to choose to be patient … And send gentle reminders to the medical staff as needed.
Because we all realize we need more medical help. We need to be seen “quicker”. But on the business side, how does this happen? It means bringing on educated dysautonomia staff which requires more training than we can wrap our heads around. And this requires time. (One thing I can struggle with… I want it all now!). And, based on my business knowledge…not direct from them, more expertise staff requires quite simply funding. And let’s face it. Dysautonomia is not a “popular” illness with the major research donations rolling in. .
We all have to work together to bring about Dysautonomia Awareness. Which leads to funding. Which leads to more research. Which leads to better treatments. And one day… A CURE.
Let’s try to work with our medical team wherever you are in the world reading this. If you need Momma Grizzly bear pointers for unbelieving doctors, contact me – I can teach you a thing or two on how to be an assertive advocate when needed. (And by assertive I mean, take-no-prisoners you are going to HELP my daughter)…..((Mik says I am like that small sweet looking dinosaur on Jurassic Park that then goes all crazy scary on the attack when that guy was trying to get his wrecked jeep unstuck)). Yes, if I feel like my daughter is being ignored after extending much patience, I can get…uh…a little protective. ;). I can be your best dream of an easy-going mom patient advocate or a never ending nightmare. Either way, I can be stubborn if it means helping one of my kids.
And one last side note: you might hear through the grapevine on some of the various treatments Mik is receiving through research. I will be the first one yelling for all to hear if we found THE ONE. However, just like all life with dysautonomia, we have good days and not so good days. It will take months, if not year(s), to know the “final answer”. So please don’t go to your teen’s doctor and insist on them trying Mik’s treatment(s). They are not to be taken lightly. Some days, the side effects are harsh. Definitely not something you just casually try if maybe tweaking a medicine or adding other therapies first might benefit your teen.
What can you do? Ask your doctor if your teen is candidate for any of the latest treatments (let’s face it, which parent among us have not read pages upon pages of dysautonomia info on the web). Ask them why/why not will it work for them. Just don’t insist because Mik or someone else you know is trying a treatment. They have their reasons and if you do not understand their reasons, ask some more questions! If you found the right caring team of doctors, they will answer all your questions to your understanding.
Also, remember dysautonomia is a whole body illness. Make sure you and your teen do things in your control like:
- Follow your dysautonomia specialists instructions and check with them FIRST before making changes on your own. They have a reason for everything they suggest or do. Notify them if a side effect is making your symptoms worse, if a medicine has seemed to “stop working”, etc. Communicate. Have a team approach.
- Find a great general doctor who is either educated about Dysautonomia or willing to learn more about it. Who will work WITH your teen’s dysautonomia specialists and help manage the day to day non-ER care. We LOVE Dr Joshua Defriece in Katy.
-Get in a good physical therapy program with a team knowledgeable about dysautonomia. The Dysautonomia Center for Excellence is working with the great group at TIRR (yay!) and Mik herself is going to a place closer to home at Spero Rehab who have been phenomenal in helping improve her strength, endurance and pain management. (They are a great team of dysautonomia physical therapy experts. We love them! Get in physical therapy!)
- Eat healthy! Those GI problems can literally be a pain. Avoid the processed food and eat a vitamin rich diet. Talk to your doctor or nutritionist.
- Get social! On the days you feel “meh”, but can get out of bed – get out! Go out to a coffee shop. Walk (or wheel) around your local mall. For locals, join us at our socials. Call a fellow dys family and meet up. See the SUN. Get that a Vitamin D. Trust me, it may not make you “feel” better, but it will bring you a dose of happy distraction. Yes, I said DISTRACTION. We have to take our little victories where we can… Even if it’s in the form of a distraction.
- Find YOU! This goes for caregivers and teens. Take time each week to do something that taps into your creative side. Try new hobbies or polish up your skills in your given hobbies. Knit. Paint. Write music. Whatever it is, just do!
Besides it making you feel better and it keeps the blues at bay, physically it is releasing all those feel good endorphins that are very much needed to combat those annoying adrenaline surges many dysautonomia teens get AND can help keep depression in check. Because let’s face it, in my book, the majority of dysautonomia cases are not caused by primary depression. (Don’t get me on my soapbox on that one.). However, developing an isolated life with a hidden illness can. Keep depression at arms length. Distract with happy outings. Fun hobbies. And most importantly, see a doctor if your occasional sad day becomes a week, then two, etc.
It takes a whole body approach to help dysautonomia symptoms to improve. It takes finding the right caring team of doctors. It takes a group of caring angels of friends and family to jump in to help caregivers and their teens when they need a boost of encouragement. Because let’s face it… We are on a long journey. We all have to work together.
And most importantly, always HOPE! The true definition of hope, according to a great sermon from my pastor Dr. Ed Young, is something we know WILL happen, just not yet. So quit using “I hope” as “I wish”. Use it as “I know”. Such a small tweak in wording, but completely changes my outlook when I use it now.
So, I hope your days get better. I hope you see the many quiet blessings that surround you each day when life changing problems begin to cloud your vision. I hope we are all blessed with more doctors to become passionate to help dysautonomia patients like Mik’s doctors and many others great doctors around the country. But, mostly, I hope for a cure.