JenniferInOhio Posted March 4, 2015 Report Share Posted March 4, 2015 Hi, I would like some opinions on my 11 year old daughter's tilt table test results. According to these numbers, I really don't see a POTS diagnosis, yet the Dr. states in the paragraph below that she has it. I know she has POTS because *I* have it, and I see much higher heart rates at home - sometimes 140's after standing for just 5 minutes. This was only a 60-degree head tilt, and it didn't last long so maybe that is why the numbers are lower than I expected. What I am surprised about is the doctor wants to put her on salt tablets and florinef. Based on the below results, I wonder why he isn't starting off slow with just increased fluids and extra salty foods. This is Dr. Moodley at Cleveland Clinic. He said he treats over 200+ pediatriac POTS patients. My daughter does feel bad a lot of the time (stomach issues, headaches) so maybe he is basing his medication decision on those factors. Any thoughts about the numbers below? Thanks!TIME Heart Rate BP MeanSupine1min: 82 98/60 71 2min: 78 104/59 83 3min: 84 104/60 744min: 78 98/55 665min: 89 97/58 72Average: 82 100/58 73Tilted0min: 95 102/66 851min: 102 103/74 912min: 96 102/69 84 3min: 91 106/62 784min: 100 103/69 865min: 113 113/73 886min: 104 109/67 937min: 98 108/65 878min: 104 109/62 789min: 100 106/72 8010min: 89 98/65 841min after tilt: 73 110/53 642min after tilt: 73 102/57 723min after tilt: 74 105/57 76This is a mildly abnormal cardiovascular autonomic test panel dueto significant tachycardia during the tilt test. These findingsare nonspecific but in the proper clinical context are consistentwith anxiety and other hyperadrenergic states as well as posturalorthostatic tachycardia syndrome ( POTS). Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 4, 2015 Report Share Posted March 4, 2015 I agree that by the numbers it is borderline. Some do not want to call it POTS in juveniles without a 40bpm increase, and meeting a threshold of 120bpm. Given her symptoms, and that you see "bigger" numbers, I would be thankful that he is able to see past the numbers. Especially with a 60 degree tilt. An extra 10 degrees, may have been enough to show a larger increase. I have never seen results for a 60 degree tilt. I do not think. There is a 32bpm increase from her average to her 5 minute mark. He may be looking at her blood pressure to. There is no significant drop, but he may think getting the pressure up, will help relieve some of her symptoms. Maybe he is shooting to get it up to 110/70 or 120/80? Maybe a low dose of florinef would help her feel a little better? I noticed that her pulse pressure remains pretty steady, and only a mild drop in the end. That is good. Mine narrows significantly. Getting as narrow as 10. I do not know. I am just "thinking out loud" and speculating. I would go with it as long as she tolerated the drug well, and it helped. I am certainly not making recommendations though. I would go through a similar thought process if it was one of my boys. If you feel more comfortable with increasing salt, fluids, and compression stockings give it a try. If it is not enough, she has a prescription for the florinef. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 4, 2015 Report Share Posted March 4, 2015 My doctor (autonomic dysfunction specialist) has said in the past that he has to look at the whole person--a combination of the test results and the symptoms the person complains of. As you say perhaps the doctor is recommending a more aggressive treatment b/c of symptoms. Quote Link to comment Share on other sites More sharing options...
Jan Posted March 4, 2015 Report Share Posted March 4, 2015 Are you sure the doctor isn't assuming she had already tried increased salt and increased liquids? That would have been my assumption if I was the doctor and the mother of my patient had POTS and understood the need for that. And then my question is, have you tried that?If she wants, she always has the option of trying the non medicine route if you haven't already done that and then take the meds if that doesn't work. Maybe the doctor is thinking meds are needed because of her other symptoms and that diet changes won't be enough. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 4, 2015 Report Share Posted March 4, 2015 If I am understanding this test, her heart rate went from 78 to 113. That's a difference of 32 points. Under the old criteria, it would be POTS. My son qualiified under the old criteria and also had very low blood pressures. If you have not tried compression socks, adding salts, and fluids then I would probably call the doctor to see if this could be your first option before trying medications. However, if your daughter cannot retain the fluids to keep salt levels up, the florinef is a good medication to help with this problem. Quote Link to comment Share on other sites More sharing options...
db2504 Posted March 4, 2015 Report Share Posted March 4, 2015 I agree with the others and would try the fluids and salt first before the meds. If that doesn't help then u have the prescription in ur possession and get it filled immediately. Be happy the doctor is willing to help with the symptoms and not just ignore the complaints. That's what my daughter is experiencing and her quality of life is suffering. It is very sad to watch. It sounds like you found a good doctor who is looking at the whole person. Thank God for that. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted March 5, 2015 Author Report Share Posted March 5, 2015 Thanks for your thoughts! I really appreciate this board to bounce ideas off of...I was kind of "thinking out loud" too. Don't get me wrong, I'm SO very grateful that he diagnosed her with POTS based on our overall observations instead of just the tilt test. I was nervous during the test because I was watching her numbers, and they weren't going high like at home. I was also surprised that it was only a 60 degree tilt for 10 minutes. Mine was 90 degrees for 30-40 minutes.I did not have her try a lot of hydration and salt before the test because I didn't want it to influence her numbers. I think we are going to try the Florinef for a few weeks to see if she feels better. A lot of her problems are nausea and headaches - symptoms that I don't deal with so I'm unsure of how to proceed. I'm not sure how the Florinef will help with those two symptoms, but maybe it will do something so she doesn't feel sick all the time. Hydration is difficult because she feels bloated with too much water. I just wondered if Florinef was too aggressive for this stage in the game. Quote Link to comment Share on other sites More sharing options...
Jan Posted March 5, 2015 Report Share Posted March 5, 2015 My experience with Florinef is it took about 6 months before getting the best effects. My body adapts pretty slow. It did eventually help with all my symptoms including nausea and headache. I think the drastic change in blood pressure and heart rate caused a lot of symptoms including the nausea and headache and it took awhile to adapt to the changes the meds caused, even though they were good changes. My experience with headaches, is that pain, especially in my head, causes nausea.Is your daughter getting her period yet? If so, that can make symptoms much worse.It helped me to keep a symptom diary. That way the small changes I didn't notice on a daily basis could be seen when reading back. Good luck, many kids out grow this stuff, I hope your daughter is one of them. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted March 5, 2015 Author Report Share Posted March 5, 2015 Thanks, Jan. Your post gives me hope that the Florinef will help her headaches and nausea! If she didn't have those two things, I think she would feel normal. She hasn't started her period yet, but is definitely going into puberty. I am hoping that this is why she has been feeling so yucky with the POTS symptoms, and that maybe when she gets over this puberty hump, that she will feel better. Quote Link to comment Share on other sites More sharing options...
Jan Posted March 5, 2015 Report Share Posted March 5, 2015 I am certainly not a doctor, but I wonder if there aren't lots of kids with POTS like symptoms in early puberty. I really hope when the hormonal changes settle down, your daughter will be fine. I think because I have POTS I worried about my sons having it and kept them super hydrated and looked for trouble. One of my sons was very tall and thin and had what I thought were symptoms of POTS. Lightheaded, dizziness, headaches etc. He just had the "poor man's" tilt table test with his pediatrician taking his BP/ HR sitting, standing, and lying. The results were a little high but still in the normal range. His doctor advised him to bring a bottle of water to school with him and keep a snack in his back pack and not to get too hungry and to drink more during the day. He out grew the symptoms and is fine as an adult, although he is still tall and thin and needs to eat often or he gets faint. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 10, 2015 Report Share Posted March 10, 2015 Jen,A friend of mine charted her son's HR"s (Supine/Standing) for 4 weeks before she saw Dr. Moodley. Did you mention to him that her heart rates were reaching 140's at home just standing for 5 minutes? Maybe he took some of that into consideration, he did in her case. In any event, do you have a follow up scheduled with him?Best of luck to you and your daughter,Sarah Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.