Tilt Table Test Results

[kclynn]

My son (15) has had the tilt table test and some others, valsalva, autonomic reflex test at Mayo on Friday. Don't have any results and they made me leave for the tilt. When I asked him about the tilt test he said the bp stayed fairly steady (though I can't be sure how accurate he is on that) but that his heart rate was in the 140's and the beeper kept going off (tackycardia)? Also, his feet got so painful and turned purple and they called a Dr. in to look at them.

Monday is a sweat test and then we are not scheduled to talk to a Dr. till January 6th about the results! We plan to just go over there and sit and be a "checker" because I think that is ridiculous. Anyone see Dr. Benarroch at Mayo? That is who we are supposed to see but I think if we are a checker then we just wait till any one of them could see us and I don't know one from another.

He has many, many symptoms and hasn't been in school for a while, is up and down sometimes hourly but never feels very good and has a lot of weakness. He also has many episodes of extreme sweating (where he needs to change clothes or sheets) and major chills where he can not get warm.

Just wondering if you think this sounds like Dysautonomia or POTS?

Thank you!

[juliegee]

Hi KCMom-

It sounds like your son does have dysautonomia- an umbrella term that refers to a dysfunction of the autonomic nervous system. It also sounds like he has POTS, that's when your HR rises more than 30 BPM w/i 10 mins of standing still. The fact that his feet turned blue is an indication that his blood is pooling in his lower extremities, which can in turn cause his heart to beat faster to keep his BP up.

I had the exact same experience at Johns Hopkins with the TTT. They refused to allow me in the room and my (then 12 y/o) son was pleading with me to stay. My heart was broken. I plastered myself to the door of that room & another cardiologist literally had to drag me away to a waiting room. I felt awful leaving my little boy there, when he was scared. (My son had another test being run concurrently- so he already had a tube up his nose into his bowel.) Tough stuff for kids....for anybody.

We also had to wait forever for the results of some of the testing- the GI stuff took hours and hours to read as they literally measured his GI pressures for 24 hours. Try to be patient and rest assured that you are on the right track with dysautonomia. I'm not sure if your son is currently taking any meds, but upping his salt & water intake would be a great first step until you learn more.

Let us know what you learn-

Julie

[crowebirds]

I agree fully with Julie, Mack's mom. We have not had the opportunity as of yet to go to Mayo or do any of the TTT/Sweat testing. However, my 12 y/o daughter does have the blood pooling, pain in legs, tachycardia when standing. TLC goes in the opposite direction where she does not sweat and she does not get the chills despite her body trying to warm up from being very cold. Despite this difference it is all DYS related.

This is our journey in life and prayers are with you and your son.

[Christy_D]

I'm sorry you weren't allowed to stay with your son(my son also 15 and not attending school). My son had the TTT, thermoregulartory sweat test, MRI, and several GI tests. I was always allowed to stay in the room with him, so was my husband. Then I was able to witness what was going on. During his TTT was the first time we had ever noticed his feet and ankles turning purple. The tech running the tests explained everything that he was doing and understands how we feel- his daughter also has POTS. We were not at the Mayo Clinic though, we had all of my son's testing done at Case Western University Hospital in Cleveland.

My son has POTS, small fiber neuropathy and gastroparesis. He has reduced sweating, and no sweating at all on his torso or left arm. I even took a picture of him when he was done with his sweat test so we could see where he didn't sweat. They covered him in an orange powder and wherever he sweated turned purple and remained orange where he didn't sweat.

Make sure you get a copy of all his records. It makes it easier to get them as you go for future doctors who may want them. I even printed out the picture I took from the sweat test and gave that to my son's new neurologist. He was pleased to have the picture to see, rather than just the notes and results they gave me.

Good luck with all of the testing,

Christy

[Sallysblooms]

I can't believe they would not let you be with your son. Rediculous.

[flower]

I'm so sorry those of you who could not be with your children during the TTT.

My husband mentioned yesterday that my girl (8 years old) might need the TTT as well because of the symptoms she's showing, but I think the whole thing would be very upsetting to her - let alone if her Dad and/I couldn't be in the room with her during the test. Goodness gracious. I would also be feeling like tearing the door down!

kcmom - definitely sounds like dysautonomia to me. I am so glad you're getting some help for your son, and I really hope he starts to feel a bit better with treatment.

Take good care :-)

[kclynn]

Wow, Thanks for the replies and it is good to hear others have had similar experiences. My son is pretty independent so that is good. I think he is just glad and relieved to be here with Dr. listening. We have the Dr. appt. tomorrow to find out all the results. We were able to get it rescheduled. I guess they told him he sweat more than anyone they have ever seen. When I saw him he was dripping purple head to toe, not a spec of orange anywhere.

Christy, how long has your son been out of school. Mine started missing the middle of Oct and by the first week of November just couldn't get there at all. We started the home bound the end of November. He has a mountain of work to do and has only been able to do a couple assignments every days. They Homebound teacher is really good, very, very sympathetic but makes him keep at the work for the hour she is there. She doesn't care if he is laying down or what ever he needs, frequent breaks, etc... She can see he can't do more than this and reports this back to the school so they know he isn't just not making the effort.

This is one reason I really want to get the diagnosis so we can get more help from the school and maybe less work! Does he really need to color maps? Or complete the entire analysis of Romeo and Juliet?

Well, that is the next hurdle.

[Christy_D]

My son stopped going 1/2 way through his 8th grade year, so it has been almost 2 years now. He started back to school this year (his sophomore year) and only made it 7 weeks before all of his symptoms came back full force. He was only attending 4 hours and taking 2 on line classes. So now he is back on homebound for 4 classes and 2 online classes. He is .5 credits behind right now, so I don't think that is to bad considering everything he has to deal with.

His homebound teacher and the school have both been very supportive. His counselor is excellent. The school is paying for his on line classes, so I have no complaints with the effort they are putting forth to give my son his education. They have also adjusted some of his assignments and cut some out completely, since they were pretty much just busy work- like you said coloring maps or making a shoebox scene from Romeo and Juliet last year. They are focusing on what he really needs to know and learn. I also provided the school with a booklet that I printed out from Dynakids.org and email his counselor with any test results and doctors appts he has to keep them current with the situation.

Christy