Bordline Tilt But Major Symptoms And More

[kclynn]

We met with the Mayo Dr. yesterday. The first thing right off she only would let one parent come back so I went. Thought that was really odd. Nurse had said my husband could come back in 10 minutes but became apparrent that she didn't intend for that to happen. After the 3rd time I said I wanted him back there she kind of huffed and rolled her eyes and called him back there.

His test was borderline, but did go up to 126. She didn't think she could give him the diagnosis of POTS but then said he needed treated as POTS and ordered an exercise test for a POTSY type kid. She ordered Mestinon and salt and exercise. She kept repeating that she just didn't treat kids, though. My son was clearly having a hard time and she was hopeless. I asked for a "diagnosis" to help us with such things as school. She said that was the neurologists problem.

He has major symptoms and feels almost as bad as when we have been talking to the other Dr. but at least this time the Dr. acknowledges that he is having autonomic problems. It was just strange.

I will be pursuing an appt. with Dr. Grubb next, follow what she said and see what happens.

[juliegee]

So sorry. No child or family deserves to be treated like that A HR of 126 could indeed be POTS. It depends what the supine HR was. I have also noticed that many here, with smaller increases in HR can have just as severe symptoms....so what you are describing isn't unusual. Focus on what you HAVE accomplished. You did get confirmation. You did get the DX. And, you did get a treatment plan. That's huge.

I'm so glad that you are planning on seeing Dr. Grubb. I hope you will get more support there.

Regarding, not allowing family members for the TTT itself. I really think that is for medical reasons. It was VERY traumatic for my son & myself to be split up during his test at Hopkins, but I think they are more accurate without ANY distraction. The official instructions for a "poor man's TTT" refuse to allow the subject to even watch TV. BTW, how long was the entire test? I hope longer than 10 mins!

All the best-

Julie

[Sallysblooms]

Rude medical staff, no reason to ever have that. I don't put up with it. Every day is so different for POTS. Sometimes a tilt test shows one thing, the next day something else.

[Christy_D]

The day my son had his TTT, he was having a good day-borderline-but they still diagnosed him with POTS. His symptoms don't always correlate with his HR/BP. Sometimes they barely go up and he feels sicker than a dog, so that isn't a reliable measure for us HR/BP to symptoms.

If the wait is to long to see Dr Grubb, we took my son to see Drs Chelimsky (husband/wife team) in Cleveland at Case Western University Hospital. They were both very caring and compassionate doctors. My husband and I have been allowed to stay for every test and consultation. They not only diagnos but treat. They filled out the necessary paperwork I needed for homebound school,etc.

I can email the nurse practioner and she always gets back to me within 24 hours. I have only positve things to say about our treatment with them.

(PS I sent you a message regarding the TST test)

Christy

[kclynn]

Julie, thanks for the encouragement. She didn't even give us any paperwok on his tests and i had to ask to see them on her screen. His starting hr I think was 98 and the blood visibly pooled in his feet.

[kclynn]

Oh, and the length of the test was 10 minutes. Christy, I sent you a reply a couple days ago,did you get it? I'm on mobile now, and can't seem to access the private messages till I get home tonight.

[juliegee]

Wow, I hate to say anything negative about Mayo.....BUT (in my humble and fairly educated opinion) a 10 min TTT is a joke. Better than nothing & the results are certainly confirmation of your son's autonomic issues. I don't know if there is a gold standard for a TTT, but at Johns Hopkins they run each TTT for 45 mins. IF nothing occurs at that point- no tachycardia or drop in BP, they inject the patient with a medication to simulate mild exercise or excitement. The 45 min test begins anew at that point. So, a full test (if there is no irregularity in the 1st 45 mins) takes a min of 1.5 hours. We were given a print out of the entire test: his supine HR & BP and each reading taken at 5 minute intervals until he fainted. A cardiologist came into the recovery room and gave us his DX. This was not Mack's treating doctor, just the doctor who supervised the test. Mayo's version is sadly lacking.

My son's tachycardia/syncope/vomiting didn't happen until 30+ mins into the test. In other words, Mack's body can hold it together for a while and then it completely failed. This was very pertinent information. You have NO idea what would happen had the test been continued on your son. A 10 min TTT could just as easily (and more accurately as far as simulating real life) be done in a doctor's office as a screening to see if a full TTT is necessary.

I'm sorry you had such an incomplete experience. I can only imagine how many hopes you had pinned onto this appt & round of testing. I am glad that you will take him to see Dr. Grubb. Forgive me if I am repeating myself, but have you told us the geographical area in which you live. There are several pediatricians, who specialize in treating kids with autonomic issues. There may be someone closer to you.

You did accomplish a lot- albeit an unfulfilling & incomplete encounter. Thanks to you, more help is coming. Stay strong

Julie

[Christy_D]

The test was only 10 minutes? I know my son's was much longer, like 30 or 40 minutes. I got a print out minute by minute.

Sorry, I didn't get your message yet.

Christy

[HopeSprings]

If this can happen at The MAYO CLINIC -- (one of the most renowned treatment facilities in the U.S.) I am really disheartened! 126 is not a normal heartrate. Anything above 100 is tachycardic right? And if he started (at 80 for example) he'd certainly meet the criteria for POTS -- not that the criteria for POTS is even adequately defined in my opinion. Glad you are moving on to a better Dr.!

[kclynn]

Christy, I just replied through the email so apparently it is in cyberspace somewhere. I will reply through the site here.

[PotsMom]

Several thoughts to share...

A 10-minute tilt is by no means long enough! With dysautonomia it is the prolonged standing that causes problems, and the longer one stands the worse the symptoms get. The tilts my kids have had were planned to be 45 minutes to an hour - neither made it that far but they were past 10 minutes.

I also agree with what others have said here that specific numbers do not always correlate with the symptoms. I have seen times with my kids where the numbers definitely reflect other symptoms and times when they absolutely do not.

At least one here mentioned the pooling issue even when the numbers were not all that bad. That, too, shows that the numbers in and of themselves do not tell the whole story. Visible pooling, however, is certainly very telling of what is going on. We see the same with my son. He has pooling in his hands and feet very quickly when upright. The BP and heart rate, which we rarely take anymore, do not always reflect what I can visibly see both pooling-wise and fatigue-wise. Back in the days when I did take BP and pulse more frequently, I found that sometimes the numbers correlated and other times not so much. However, it doesn't matter what the numbers are - I see what I see - it's blatantly obvious to anyone observing!

I am sorry you had such a trying experience. It is unfortunately one that is repeated countless times among dysautonomia patients.

[autumn]

There's been some great info here, and I wanted to add that it IS possible to get a clinical diagnosis based on symptoms, in addition to the borderline tests -- that's how my PCP dx'ed me. I'm fairly sure Dr. Grubb has done that before, too. I hope you can get an appointment soon, and I'm sorry you had such a bad experience.

[crowebirds]

I truly hate that you had to travel so far and end up being frustrated by one of the doctors on the trip. This is my greatest fear. Our current doctor has been a classic example of one who has his good days and his bad days. He is the best in our state, but on one of his bad days, it is just best to have not been there.

We live in Alabama. All our travel would be by car. We just would not be able to make a second trip. Do you have any tips or suggestions of what we would need to do while waiting on the waiting list for our appointment? Is there anything that would benefit us to bring for the appointments that they do not tell you about?

Thank you and Merry Christmas!

Robin

[kclynn]

Robin,

The first Dr. we saw apparently did not have all the information before we went, but my son's pediatrician said she wrote a 2 page referral letter. Dr. Renaud said she didn't see it so my best guess is she didn't read it or it didn't get entered in the computer and she didn't see it. I know how Mayo works and they will often order tests before you come because they are used to people traveling long distances. I thought it was strange no tests had been ordered and tried to call to find out about that at *least* 3 times and always blockaded by the nice appt. person (and I mean that sincerely but I could never get past them). So, if they do not order a lot of tests before you come, I would talk to your own Dr. and have them contact the Dr. at Mayo and ask about it. (I couldn't do that because our own Dr. was on leave because of back surgery - you see, the whole thing wasn't right from the get go for us).

Also, if they do have tests ordered, find out if your daughter should stop taking any medications or OTC medications like benedryl for example, before you come.

There is a Ronald McDonald house. We stayed at the Staybridge Suites which was not outrageous and provided a separate room with beds so my son could rest and free underground parking.

They have a great transport system to the hotels for Mayo patients so you never have to worry about taking your car and finding parking around the clinic. We never took our van.

Hope this helps. Feel free to ask anything else. I hope you hear soon, and as I said if you get in with the pediatric Autonomic Dr. then I think your experience will be way better than ours.