Medical alert bracelet?

[MeaganS]

Dd9 has a severely dilated aorta. She has many doctor-ordered physical restrictions, and is closely monitored by her cardiologist. She will be having several surgeries in her near future (and rest of her life) but the doctors want to put it off for as long as they can, hopefully another year or two for a variety of reasons.

 

Every time we go for an appointment, her doctor makes sure I know what to do and look for in case she has a rupture. It's an incredibly life-threatening thing that includes making sure the ER doctors don't even take the time to do scans to check what's going on but immediately life-flight her 4 hours away to the nearest hospital that could hope to handle it. Quick response would be her only chance.

 

As you can imagine, this possibility keeps me up nights. Although we homeschool, I worry a lot about those times when she's not with us and other adults are in charge. I'm not sure how well she could advocate for herself, definitely not enough to be confident that she'd be ok. I do try to keep adults in her life informed, but I can't give everyone the lecture.

 

Do you think a medical alert bracelet might be helpful? If you or your kids have them, did they find them useful or did people ignore them? Any other ideas? I am working to teach my daughter to advocate for herself, but she also has HFA and social skills aren't her strong point.

Edited February 20, 2018 by Meagan S

[Daria]

My son had one, from a few months until he was about 3.  It was never "tested", in that we never had a medical incident when I wasn't present, but it was reassuring to me.  He was in daycare, but my biggest worry was something like a car accident where I might be unconscious.  

 

I don't think it's realistic to expect a 9 year old, in crisis, to advocate for herself.  I also like that the Medic Alert company will, when contacted share all the medical and personal information.  So, if something had happened, they would have known his drug allergies, and Grandma's phone number, and other things.  I would get a real Medic Alert, for that reason, and not an imitation.

Edited February 20, 2018 by Daria

[Jean in Newcastle]

Dd has one.  She's never had an opportunity to "use" it but I'm glad that she has it. 

[MeaganS]

My son had one, from a few months until he was about 3. It was never "tested", in that we never had a medical incident when I wasn't present, but it was reassuring to me. He was in daycare, but my biggest worry was something like a car accident where I might be unconscious.

 

I don't think it's realistic to expect a 9 year old, in crisis, to advocate for herself. I also like that the Medic Alert company will, when contacted share all the medical and personal information. So, if something had happened, they would have known his drug allergies, and Grandma's phone number, and other things. I would get a real Medic Alert, for that reason, and not an imitation.

You mean this one? https://www.medicalert.org/add-on-services/kidsmart

[Spryte]

DS and I both have them.

 

Both of us have (different) conditions that require more info than can be put on a bracelet, so we have the type that maintains a database with all sorts of info, so ER staff can call. We put what we can on the bracelet, but it’s not complete.

 

DS also carries a card outlining details of his conditions. This is in his epipen/inhaler case, so should be obvious. I have a card in my wallet, though whether anyone would look or find it in time ... eh, not so sure.

 

Neither of us have been in a position to test the system, thankfully.

 

I do understand the staying up nights with worry. The worry when a child is in the care of others, or now that mine is 14 - if he’s just with friends. Oh my. For us, even the grocery store checkout line is full of danger. He’s had anaphylaxis from airborne particles in the darn grocery store. It’s anxiety producing, for sure.

[freesia]

Dh has one, particularly as what he is allergic to is used to preserve epi-pens. So, he has to use one in an emergency, but needs follow up care as well.

 

In your case I would absolutely get one.

[MeaganS]

Man, I didn't even think of car wrecks or something. Yeah, I'm feeling more and more like this may be a good idea.

[Daria]

You mean this one? https://www.medicalert.org/add-on-services/kidsmart

 

Yes, just having the name of the condition, isn't enough.  This way, the ER has the name of her doctors, the hospital best equipped to treat her, a record that you consent to transport via helicopter etc. . . . 

[Pen]

Yes. One more thing that could help.

 

 

4 hours is itself a long time if aorta ruptures, so as clear info on what to do or what number to call right away in case of trouble would likely help.

 

 

Is there a plan in place at the 4 hour away hospital?

[MeaganS]

Yes. One more thing that could help. 4 hours is itself a long time if aorta ruptures, so as clear info on what to do or what number to call right away in case of trouble would likely help.Is there a plan in place at the 4 hour away hospital?

Well, it is 4 hours by car. I imagine a life-flight would be faster. It is the Mayo Clinic and her cardiologist told me that the whole department knows her case and she said she's consulted with the surgeons who would perform any surgery on her. Plus all her records are already in their system. So my guess is yes? But that's a good question.

Edited February 20, 2018 by Meagan S

[JFSinIL]

I would get one. We have MedicAlert for my adult son with autism - he wears his on a chain around his neck, and staff at his group home periodically practice having him show it to them. He is to show it to any adult if he gets lost on an outing (he is non-verbal). He had it on in our car crash, and I was able to utter "He has autism, he has MedicAlert" before passing out. His fraternal twin is on five or six meds and wears one, too, now, in case he is in a situation and can not speak for himself.

Edited February 20, 2018 by JFSinIL

[HollyDay]

We use Road ID for our medical alerts

[Lanny]

When I lived in the USA, I wore a Medic Alert bracelet for MANY years. My problem is trivial compared to what your DD has. I am Allergic to Sulfa. 

 

It is my belief that (at least in those days) Ambulance and Medical personnel were trained to look for things like that on a patient.

 

I hope your DD will be OK and never need her Medic Alert bracelet, but I would spend the money and I would encourage her to ALWAYS wear it. That's a good habit to have.Like someone in the military wearing "Dog Tags" it should be part of the daily ritual of getting dressed.

[freesia]

I would definitely have something about the 4 hour window or to call Mayo ASAP or something.  You choose what to write.  Don't just assume they will call in for info right away.  Make sure you are clear it could be a true emergency.

[wathe]

Consider having her carry a "Dear Emergency Physician" letter, written by her main specialist.  It should include the medical details of her condition, emergency plan, and contact information for her specialists.  The fewer steps the emerg doc has to take to get the critical details the better.   

[Daria]

When I lived in the USA, I wore a Medic Alert bracelet for MANY years. My problem is trivial compared to what your DD has. I am Allergic to Sulfa. 

 

It is my belief that (at least in those days) Ambulance and Medical personnel were trained to look for things like that on a patient.

 

I hope your DD will be OK and never need her Medic Alert bracelet, but I would spend the money and I would encourage her to ALWAYS wear it. That's a good habit to have.Like someone in the military wearing "Dog Tags" it should be part of the daily ritual of getting dressed.

 

 

For my kid, who was young enough that choking was a risk, we had it made without a clasp.  A jeweler put it on, and every so often, when he grew we'd go back and they'd add new links, but it wasn't big enough to fit over his wrist, so it was on 24/7.  

[MeaganS]

Consider having her carry a "Dear Emergency Physician" letter, written by her main specialist. It should include the medical details of her condition, emergency plan, and contact information for her specialists. The fewer steps the emerg doc has to take to get the critical details the better.

Having something like that is a great idea. I need to look into that. While I desperately hope it is never a problem, I feel like I should have a plan in place so that I don't have to waste time or forget anything important.

 

We've only become aware of the severity of her problems in the least year, and it's been slow in realizing the extent. None of this has been on my radar before.

[NorthwestMom]

I really think you want a Medic Alert bracelet. EMTs, doctors, and good samaritans who have taken a first aid course are all trained to look for them. That will be the quickest, clearest way to convey that extremely important information. Forget any kind of paper letter - how is a 9 year old going to carry that when she is outside playing? Swimming? On a field trip to a pottery studio?

[Pen]

Also, when getting a Medic Alert bracelet, I was told that the finding person could be a random passerby rather than a trained medical or emergency responder, perhaps someone who can barely read, so to make it as clear and direct as possible of what to do.

 

Someone I know who had a ruptured aortic aneurism and knew that was happening was unable to get the hospital workers to get moving quickly. They went through the whole rigamarole of scans and testing before even calling the surgical team, who then still had to get to the hospital. It probably would be worth contacting Mayo and asking more questions. Maybe you need to have signed papers on file with them, or other things that would also help in advance...blood type info, ...

[kbutton]

https://www.marfan.org/resources/patients/patient-resources

 

Under patient care, they have downloadable emergency cards to carry on your person and resources on activity guidelines, etc. that you can use as a starting point to give people who will be with her when you are not.

 

I think with her aorta at this point, you would be super smart to get a bracelet or some kind of medical jewelry. I think the Marfan Foundation cooperates with a specific company, and if you can find that on their blog, it might give you another vendor to evaluate. 

 

My son has a way to go before his aorta is to that point, but our church's emergency response team has a sheet with details about his condition, and they have his picture with it in case anything happens, either medically with him, or if we are separated due to some other kind of emergency.

 

I think I would carry the wallet card attached to her picture with you as well--if you were in an accident, had a health issue of your own, or some kind of natural disaster and were separated, someone would know on both her end because of the bracelet as well as your end because of the card, that they need to locate her if they find you. 

 

Our local EMS has a specific kind of disaster registry you can opt into for medically fragile people of all kinds--including just elderly people who need to be checked. During a disaster, they can be sure people on that registry get an additional level of care and concern if at all possible.

 

If you are in any kind of auto accident, even a fender bender, you should have her aorta checked. If it's that dilated, trauma can cause a rupture. There are people with no dilation that die from ruptured aortas during car accidents. 

 

Lastly, I would really encourage you to join some kind of group that is focused on education of healthcare professionals and on patient advocacy. They have so many tips. The Marfan Foundation is a great group for this. In fact, they are having a (free, I think!) regional symposium coming up in Chicago. They WELCOME people with related disorders such as Loeys-Dietz, Turner Syndrome, Ehler's-Danlos, and familial thoracic aortic aneurysm even though some topics will be isolated to Marfan Syndrome (like eye stuff) . They are super big on making sure people know what to tell local healthcare people to get listened to--we are dealing with Marfan in the context of familial thoracic aortic aneurysm, and when we went to a symposium, we finally got better answers about how to advocate for the familial issues--relatives were NOT being scanned properly even when advocating for themselves, and we found out some magic words that local people didn't realize were part of the standard of care.

 

Here are details on Chicago--they have these symposiums at tertiary care centers all over the country. There are usually several each year: https://www.marfan.org/get-involved/updates/events/2018/03/10/chicago-regional-symposium-marfan-syndrome-and-related#.WoylOoPwa00

 

[kbutton]

Also, when getting a Medic Alert bracelet, I was told that the finding person could be a random passerby rather than a trained medical or emergency responder, perhaps someone who can barely read, so to make it as clear and direct as possible of what to do. Someone I know who had a ruptured aortic aneurism and knew that was happening was unable to get the hospital workers to get moving quickly. They went through the whole rigamarole of scans and testing before even calling the surgical team, who then still had to get to the hospital. It probably would be worth contacting Mayo and asking more questions. Maybe you need to have signed papers on file with them, or other things that would also help in advance...blood type info, ...

 

This is, unfortunately, very common. Sometimes a fit must be thrown. Seriously. 

 

"Syndrome" folks get a little more legitimacy in the ED, but not always. Aneurysms are seen as rare no matter how many times they are proven not to be. Basically they are rare absent a risk factor, but doctors don't seem to think "so and so in my family died of this" as a risk factor when it is a big risk factor.

 

Don't get me started on presumed heart attacks that are not autopsied, and then a relative finds out via some routine scan that those deaths might have all been largely preventable (by proactive surgery--stats on ruptures are still pretty grim even when the condition is known). Highly publicized deaths are helping (John Ritter Foundation), but if you want some scary reading, I believe the John Ritter Foundation has a link to a series of Pulitzer Prize articles on this very topic.

 

I think advocating at the local EMS level, like parents did with epi-pens) is going to be what it takes to get past the "it's rare" blockade. 

[MeaganS]

https://www.marfan.org/resources/patients/patient-resources

 

Under patient care, they have downloadable emergency cards to carry on your person and resources on activity guidelines, etc. that you can use as a starting point to give people who will be with her when you are not.

 

I think with her aorta at this point, you would be super smart to get a bracelet or some kind of medical jewelry. I think the Marfan Foundation cooperates with a specific company, and if you can find that on their blog, it might give you another vendor to evaluate.

 

My son has a way to go before his aorta is to that point, but our church's emergency response team has a sheet with details about his condition, and they have his picture with it in case anything happens, either medically with him, or if we are separated due to some other kind of emergency.

 

I think I would carry the wallet card attached to her picture with you as well--if you were in an accident, had a health issue of your own, or some kind of natural disaster and were separated, someone would know on both her end because of the bracelet as well as your end because of the card, that they need to locate her if they find you.

 

Our local EMS has a specific kind of disaster registry you can opt into for medically fragile people of all kinds--including just elderly people who need to be checked. During a disaster, they can be sure people on that registry get an additional level of care and concern if at all possible.

 

If you are in any kind of auto accident, even a fender bender, you should have her aorta checked. If it's that dilated, trauma can cause a rupture. There are people with no dilation that die from ruptured aortas during car accidents.

 

Lastly, I would really encourage you to join some kind of group that is focused on education of healthcare professionals and on patient advocacy. They have so many tips. The Marfan Foundation is a great group for this. In fact, they are having a (free, I think!) regional symposium coming up in Chicago. They WELCOME people with related disorders such as Loeys-Dietz, Turner Syndrome, Ehler's-Danlos, and familial thoracic aortic aneurysm even though some topics will be isolated to Marfan Syndrome (like eye stuff) . They are super big on making sure people know what to tell local healthcare people to get listened to--we are dealing with Marfan in the context of familial thoracic aortic aneurysm, and when we went to a symposium, we finally got better answers about how to advocate for the familial issues--relatives were NOT being scanned properly even when advocating for themselves, and we found out some magic words that local people didn't realize were part of the standard of care.

 

Here are details on Chicago--they have these symposiums at tertiary care centers all over the country. There are usually several each year: https://www.marfan.org/get-involved/updates/events/2018/03/10/chicago-regional-symposium-marfan-syndrome-and-related#.WoylOoPwa00

That's really helpful. She has Turners Syndrome but when I asked, her doctor said that heart stuff overlap with Marfan recommendations and is similar in practice. Turners is rare enough and she's even an outlier within it that I'm sort of making this up as I go along and not being very successful finding a support group that's very helpful.

 

Yeah, I definitely have some work to do.

Edited February 20, 2018 by Meagan S

[kbutton]

Is Mayo waiting on your daughter to get older before doing elective surgery, or does she have an unusual set of risk factors? I know it's often disease-specific (and not all profiles have clear guidelines), and she is young. 

 

:grouphug: 

 

This is hard stuff. I have the luxury of assuming this is all in the future for us, but there is no guarantee it won't be emergent. Stats say we'll have warning and an elective plan with plenty of time to implement it, but it sounds like you are much farther down this road. 

[kbutton]

That's really helpful. She has Turners Syndrome but when I asked, her doctor said that heart stuff overlap with Marfan recommendations and is similar in practice. Turners is rare enough and she's even an outlier within it that I'm sort of making this up as I go along and not being very successful finding a support group that's very helpful.

 

Yeah, I definitely have some work to do.

 

Please feel free to PM me anytime you want to. The website is a little funky, but I am on it often enough to find where they've moved something. They have school nurse info and all kinds of cool stuff. They are starting to offer live webinars that can be accessed from archives as well.

 

Also, if you need a FB group, there are two I belong to and probably some relatively close to wherever you live. I live 3.5 hours from two groups in the midwest, so I don't get to go to in person meetings, but the backup of a FB group has been nice. One, in particular, has people with Loeys-Dietz too (and there are some with more than one altered gene who are outliers), so it's broader than just Marfan. I think they'd be glad to have you in the group! 

[MeaganS]

Is Mayo waiting on your daughter to get older before doing elective surgery, or does she have an unusual set of risk factors? I know it's often disease-specific (and not all profiles have clear guidelines), and she is young. 

 

:grouphug:

 

This is hard stuff. I have the luxury of assuming this is all in the future for us, but there is no guarantee it won't be emergent. Stats say we'll have warning and an elective plan with plenty of time to implement it, but it sounds like you are much farther down this road. 

 

Last year they released new guidelines for Tuners girls. And all the guidelines begin at 16yo for dilation problems. There are basically no guidelines for her age. But all her doctors agree that her current dilation is "severe" and farther along than they almost ever see at her age, but they are essentially making educated guesses because there is almost no literature. Her cardiologist brought her case to a cardiology weekly conference and also consulted with the most experienced surgeon there in this stuff. This is the plan they thought would be best. Its been very interesting from the patient perspective not having clear recommendations. I feel like I finally understand why they call doctors scientists. And it has made me realize how much we still don't know about this stuff. Right now they say they want to hold off until her rate of dilation outpaces her over-all growth, which is major for Turners girls since she's on growth hormone for that and will probably cap off soon. They said probably when she hits puberty at the latest (which will likely be medically induced), or if her scans show a change it will be earlier.

 

Basically her aortic root is dilated the most, but also the rest of the aorta. She also has a bicuspid valve. Their concerns are two-fold. First, they don't want to have to just re-do this surgery in 5 years because her heart was too small, but mainly, fixing the aortic root will almost certainly cause her bicuspid valve to leak (squishing an oval into a circle is how they described it), which means once they operate, they'll probably have to do further operations in the near future. And those operations change her quality of life (life-long blood thinners, etc.) That, combined with surgeries she'll have to have on the rest of her aorta some day and just because their fixes have to be redone every 20 years or so, adds up to a whole lot of scar tissue and heart surgeries. They want to wait on that cycle as long as possible. 

[MeaganS]

Please feel free to PM me anytime you want to. The website is a little funky, but I am on it often enough to find where they've moved something. They have school nurse info and all kinds of cool stuff. They are starting to offer live webinars that can be accessed from archives as well.

 

Also, if you need a FB group, there are two I belong to and probably some relatively close to wherever you live. I live 3.5 hours from two groups in the midwest, so I don't get to go to in person meetings, but the backup of a FB group has been nice. One, in particular, has people with Loeys-Dietz too (and there are some with more than one altered gene who are outliers), so it's broader than just Marfan. I think they'd be glad to have you in the group! 

 

I'll definitely check out the website. And I'd like to check out the Facebook groups, I'll pm you.

[MedicMom]

Please don’t do the flash drive. I see that suggested a lot of places online, but they just aren’t a good idea. Ambulances won’t utilize them to find a history and hospitals are often very restrictive on what you can use on their computers. None of our local ones will use a flash drive to find a patient’s history.

 

Your best bet is to do something like

 

Turner syndrome/high risk for aortic dissection/ call Mom(your phone Number)

 

On the back of a bracelet with a medical alert symbol in red on the front. We don’t generally look at jewelry and anything that does not look like a medical alert piece will likely be missed. I also don’t recommend necklaces for that reason. We are looking at arms for blood pressures and to take a pulse and for IV sites, so bracelets are seen much more quickly.

Edited February 21, 2018 by MedicMom

[countrygal]

I don't know if this was mentioned but I have a relative that has a medical alert necklace with a computer chip that can be plugged into any computer. He said it has his health history, doctors names, relatives names, etc. it was waterproof too. (Not sure where you can get them though.) She definitely needs some medical alert necklace or bracelet.

[wathe]

Speaking from the trenches here (community emergency department). I would strongly recommend going as low-tech as possible.  A medic alert bracelet plus a supporting letter, preferably on paper, preferably written by your specialist and addressed to the Emerg doctor.   You need to minimize the barriers between the Emerg doc and the necessary information. 

 

Computer chips, flash drives, files accessed by calling a third party medic alert company all sound convenient. But they place barriers between the resuscitation team and the information they need.  And with a query aortic rupture, the team needs that information immediately.  Real time immediately.  When it's on paper, it's right there.  Transfer of information is instant.   No need to access a computer.  No need to worry about firewalls in the hospital computer system, can't open the file, or if the computer system is down for maintenance (at my hospital, this happens twice a month for four hours in the middle of the night). No need to have some poor nurse or ward clerk call a third party company, navigate their automated phone menu, talk to an operator, wait for them to pull the file, then fax it or email it, or have the ward clerk or nurse verbally communicate info to doc without errors  (the doctor isn't the one on the phone - they are busy resuscitating your kid).  This kind of information transfer never, ever happens as quickly as you think it should.

 

A letter written by the specialist is ideal.  We love it when our patients with rare disorders come "with instructions".   A letter written by the specialist, with 24/7 contact information for the specialist/specialist-on-call group is the most useful.   A patient/parent written note is less useful: 1) the specialist will be more likely to efficiently communicate exactly which critical details the ED doc needs and  2) a letter from the specialist will legitimize your request for an immediate life-flight without tests or any kind of work-up, especially if your daughter looks clinically well.  (Sadly, a significant proportion of our patients with chronic illness present with a different view of their medical needs than their doctors do.   And demand all kinds of unwarranted transfers, tests, drugs, and treatments.  Emerg docs tend to be a jaded bunch and may very well mentally lump you into this group, and, in the absence of objective data, may resist instantly complying with your demand for transfer.  Arranging an immediate transfer to a tertiary care facility as not as straightforward as it sounds.  Especially for a patient who looks well.  A letter from the specialist eliminates this issue).

[Daria]

I don’t think it is either/or you can have the specialist write one letter, have both parents keep a copy, put one on her seatbelt, send one to extracurricular activities, and still have a medicAlert bracelet with the same letter on file.

[JFSinIL]

I know MedicAlert (and I imagine others) let you scan info onto the person's profile. I have done this.

[MedicMom]

Speaking from the trenches here (community emergency department). I would strongly recommend going as low-tech as possible. A medic alert bracelet plus a supporting letter, preferably on paper, preferably written by your specialist and addressed to the Emerg doctor. You need to minimize the barriers between the Emerg doc and the necessary information.

 

Computer chips, flash drives, files accessed by calling a third party medic alert company all sound convenient. But they place barriers between the resuscitation team and the information they need. And with a query aortic rupture, the team needs that information immediately. Real time immediately. When it's on paper, it's right there. Transfer of information is instant. No need to access a computer. No need to worry about firewalls in the hospital computer system, can't open the file, or if the computer system is down for maintenance (at my hospital, this happens twice a month for four hours in the middle of the night). No need to have some poor nurse or ward clerk call a third party company, navigate their automated phone menu, talk to an operator, wait for them to pull the file, then fax it or email it, or have the ward clerk or nurse verbally communicate info to doc without errors (the doctor isn't the one on the phone - they are busy resuscitating your kid). This kind of information transfer never, ever happens as quickly as you think it should.

 

A letter written by the specialist is ideal. We love it when our patients with rare disorders come "with instructions". A letter written by the specialist, with 24/7 contact information for the specialist/specialist-on-call group is the most useful. A patient/parent written note is less useful: 1) the specialist will be more likely to efficiently communicate exactly which critical details the ED doc needs and 2) a letter from the specialist will legitimize your request for an immediate life-flight without tests or any kind of work-up, especially if your daughter looks clinically well. (Sadly, a significant proportion of our patients with chronic illness present with a different view of their medical needs than their doctors do. And demand all kinds of unwarranted transfers, tests, drugs, and treatments. Emerg docs tend to be a jaded bunch and may very well mentally lump you into this group, and, in the absence of objective data, may resist instantly complying with your demand for transfer. Arranging an immediate transfer to a tertiary care facility as not as straightforward as it sounds. Especially for a patient who looks well. A letter from the specialist eliminates this issue).

I agree with all this—especially the letter from the specialist. Getting a life flight is not as easy as just calling for a helicopter. The patient has to be accepted at the receviving hospital, and they are going to want to know why the patient needs to go there. Before acceptance they want read results and diagnostics; hopefully a letter from her specialist will alleviate that. Also if there are closer hospitals that can perform emergency surgery on her, they’re likely to want to know why she can’t go there(and a dissecting aorta is a true, very time sensitive emergency). Then you have to find a helicopter that will fly; we joke that if there’s a cloud in Australia we can’t get a flight(I live in NY). Helicopters are weather dependent and they also will not take a patient who is likely to significantly de compensate while in the air—resuscitation is nearly impossible in those cramped quarters.

 

In all truthfulness, i would very seriously consider moving closer to the specialty hospital. Aortic dissection is a very, very time sensitive emergency, and you cannot ever guarantee that a helicopter will be available or able to fly.

[zimom]

I keep RoadID bracelets/anklets on my kids too.  

 

Just an example, I have a good friend who has a family member in the hospital right now who OD'd.  He was in the ICU for 3 days before his father found him because a 'friend' said he was his brother.  Worse case scenario I want emergency personnel to be able to find family ASAP.  

[Pen]

Most adults have ID that would give their name on them, but a child usually does not. Something on the Medical Alert that will rapidly link her up to who she is, and computer records at the hospitals she'd most likely be sent to, which records would say clearly that she needs airlift to Mayo... ????

[kbutton]

Last year they released new guidelines for Tuners girls. And all the guidelines begin at 16yo for dilation problems. There are basically no guidelines for her age. But all her doctors agree that her current dilation is "severe" and farther along than they almost ever see at her age, but they are essentially making educated guesses because there is almost no literature. Her cardiologist brought her case to a cardiology weekly conference and also consulted with the most experienced surgeon there in this stuff. This is the plan they thought would be best. Its been very interesting from the patient perspective not having clear recommendations. I feel like I finally understand why they call doctors scientists. And it has made me realize how much we still don't know about this stuff. Right now they say they want to hold off until her rate of dilation outpaces her over-all growth, which is major for Turners girls since she's on growth hormone for that and will probably cap off soon. They said probably when she hits puberty at the latest (which will likely be medically induced), or if her scans show a change it will be earlier.

 

Basically her aortic root is dilated the most, but also the rest of the aorta. She also has a bicuspid valve. Their concerns are two-fold. First, they don't want to have to just re-do this surgery in 5 years because her heart was too small, but mainly, fixing the aortic root will almost certainly cause her bicuspid valve to leak (squishing an oval into a circle is how they described it), which means once they operate, they'll probably have to do further operations in the near future. And those operations change her quality of life (life-long blood thinners, etc.) That, combined with surgeries she'll have to have on the rest of her aorta some day and just because their fixes have to be redone every 20 years or so, adds up to a whole lot of scar tissue and heart surgeries. They want to wait on that cycle as long as possible. 

I'll PM you more, but the lack of data would be frustrating! However, due to the skyrocketing success of all kinds of surgery these days, other aortic diseases (once detected!!!) are having very good outcomes. I bet TS research starts to keep pace. Hang in there!

[MeaganS]

You guys have given me a lot to think about, so thank you! This was very helpful even beyond just the bracelet issue. I didn't realize how many holes I had in my emergency plan for dd and will work towards a better understanding and documentation of what needs to be done in case of emergency. I'm happy to realize this before (if ever) it becomes necessary to make important decisions quickly.

 

We're definitely getting her a bracelet. She had fun picking out one this morning.