Need Your Support

[flop]

Hi Julie,

I'm sure Nolie will correct me if I've got this wrong - my understanding was that they wanted to see if Anna's symptoms on the tilt correlated with abnormal readings on the anteroduodenal monitoring. From what Nolie posted about her info from Dr Rowe they weren't trying to diagnose POTS at all - more look for a link between posture and her GI symptoms?? Therefore being on her meds shouldn't stop them getting the correlation between symptoms - after all they would want to see what Anna's guts are getting up to on her daily medication.

Nolie - give Anna a hug from me, sounds like she has been through a lot with that barrage of tests. I know that at the moment she won't even want to think about tilt tests but should her physician's recommend another one in the future, rather than refusing outright she could just ask not to be given the isoprenaline? Some physicians disagree on different tilt protocols using all sorts of different stages and timing, adding carotid sinus massage (I had this), isoprenaline, or GTN spray (I also had this).

I didn't have isoprenaline during either of my tilt tests - my heart rate was quite capable of going sky-high on its own. However I did get isoprenaline as part of the protocol for my electrophysiology study a few years back. I was lying down on the cath lab table for the test and remember having a horrid fast really strong thumping of my heart and tightness in my chest / shortness of breath - like I had just run 2 marathons back to back. I was lying down the whole time not tilted up and already feeling yucky as Anna was (and also a good bit older than she is). I would rather not have to repeat that experience and I think she is a star for getting through the TTT.

I hope that when you get the full results and discuss them with the various clinicians involved that the whole experience will have yielded some useful information that can guide Anna's treatment and get her symptoms under control.

And Yay for the new vice-principle, he's one person Anna will want as her ally at school and hopefully should make communication with the school much easier if he can understand Anna's health struggles and how they affect her life and ability to study consistently. Good luck to her for the new school year.

Flop

[juliegee]

Good point, Miss Flop! I just wonder if Anna's vitals had an opportunity to demonstrate that correlation when her meds prevented her from displaying either POTS or NMH. After all Anna went through, I pray her doctors are able to glean something!

You know, I've never had a formal TTT. After hearing of Anna's experience, I'm not sure I ever will. A poor man's version tells me enough.

Julie

[thejohnsongang]

Flop you are correct. The test was to determine if the GI issues are from her pots even though she is on medication. She did show that by vomiting twice while on the tilt. She failed the TTT due to the vomiting. Dr. Rowe knows she has POTS/NMH and didn't need the tilt to prove that. He is not the kind of doctor that would put Anna through it again unless it was necessary. And at that point he wouldn't use the isoprenaline. Anna keeps a very high heart rate most of the time. It usually runs around 120-130 when she get up in the morning prior to her meds. After meds her hr seems to stay 85-95. Her bp usually stays around 95/60 ish. The TTT was ordered by GI not her cardio for the GI symptoms. That way the difference in how it was performed and the medications given. This is what I have gathered from talking to all of her doctors. A regular TTT would be different if they were just looking for POTS/NMH. They do the test different when they are looking for different things. According to the tech that performed the TTT she did not show signs of increased hr or drop in bp which would show POTS/NMH, but they weren't looking for that. The test did show that she has vomiting with posture change which is what they were looking for. The posture change does effect her GI is some way. We are still waiting for the results. We have heard nothing yet, but I will be calling and checking this week just to make sure. (yep, I'm one of those "kind" of mothers )

Julie, my tilt was nothing like Anna's. And from what I've gathered on this site, this was one of those times that is very rare. I wouldn't be afraid to have another one at all. So if you need to have one, do so and don't be afraid of it. Talk to your doctor before hand and make sure you don't get the injection to make sure your experience is better. Dr. Rowe said that not all people respond to the isoprenaline the same. He said "SOME" people have the reaction like Anna did, but not all.

I will let you know when I get the results. I'm very interested in the results myself and who knows, maybe her experience/results can help someone else on this board.

As for the principal....what a person. Anna went and spent some time with him and I think this will be great personal thing for her as well as for her education. It's nice to have someone in your corner.

We also found a great pediatrician for Anna here at home this week. She did her internship/rotation under Dr. Rowe and with the Ped. Allergy clinic at Hopkins. She gets it and understands it. Her and Dr. Rowe have already touched base and are on the same page. Looks like things are working out for Anna this way. Finally, someone close to home that can treat her for everything. Except for her 3 month check ups with Dr. Rowe we can stay close to home for her care. A 20 minute drive sure beats a 1 1/2-2 hour drive any day.

[thejohnsongang]

I posted pictures on the chit-chat forum for those that would like to see what Anna looks like. I even added one of her and her brother. Hope you enjoy.