Tiramisu Posted October 15, 2015 Share Posted October 15, 2015 It turns out that dd will probably not be able to continue taking the ADHD med that has changed all of our lives for the better. :( Last night, I decided to check her heart beat after being told that another dd has an arrhythmia that could be genetic, to make sure she wasn't having irregular beats, too. It was immediately obvious that her heart rate was high, though she had a regular rhythm. This morning I took it again and it was low. I consulted with a pharmacist because I wanted to check if the medicine would explain the high heart rate the night before, since it happened over ten hours since she had taken it. He confirmed it could be the cause because of the half-life. Given that information, I decided to try her on the lowest dose in a short-acting form that we had left over from the first time she tried this medication, when she had been checked and didn't seem to have a problem. It was only one quarter of her current dose, but her heart rate went up again. It's not dangerously high, or we would have been to the doctor, but it's not something we would want to continue. I have dysautonomia and have fluctating heart rates, so she could have my pre-disposition. Tomorrow morning I'm calling the doctor, since by the time I called today the office was closed. I'll check her heart rate again early in the morning and then later on--without giving her any meds--so I have more information to give them. I recently decided to not continue to see our psych after she gave dd a hard time about hsing, and I have an appt scheduled with someone new to manage medication but it's almost two weeks away. It's just really bad timing but at least we discovered it, especially if there could be any underlying heart issue. Our lives had become so much more peaceful since starting this med, and I truly felt our family was experiencing a healing. Her relationship with dh improved; she and her siblings had been getting along for the first time in a very long time. She decided to hs again, and she's been getting her work done. She's been discovering new interests. I'm so sad to think that she would lose all that she's gained with this medication. Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted October 15, 2015 Share Posted October 15, 2015 :grouphug: :grouphug: :grouphug: :grouphug: Hopefully there are still options that can help you with both issues. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 15, 2015 Share Posted October 15, 2015 If it's a stimulant med, can they try a non-stimulant med? Surely there will be something. We will hope! :) 1 Quote Link to comment Share on other sites More sharing options...
KSinNS Posted October 15, 2015 Share Posted October 15, 2015 Hugs! I'm so sorry this happened. 1 Quote Link to comment Share on other sites More sharing options...
displace Posted October 15, 2015 Share Posted October 15, 2015 Don't give up hope! There are different types of meds and other psychiatrists out there. Hopefully it's a bump in the road, not a mountain, and you will be able to find ways around this challenge. Eta - I don't want to diminish your frustration or sadness about it by being too positive. I just want to be supportive and encouraging. 1 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 15, 2015 Share Posted October 15, 2015 I'm very sorry. I hope that they can figure out an alternative medication that does not have such side effects. 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted October 16, 2015 Share Posted October 16, 2015 That sounds so difficult; I'm sorry. I hope you can find an alternative which helps. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted October 16, 2015 Share Posted October 16, 2015 I wonder if this awareness with meds could translate to other types of therapy (Zones of Regulation, Social Thinking curriculum) being more effective even if the meds end up being off the table. Also, stimulants have been around long enough that I would think safety information would be well-defined. It's possible that some of what you are seeing could be ruled in or out and compared with safety data. :grouphug: :grouphug: :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
sbgrace Posted October 16, 2015 Share Posted October 16, 2015 :grouphug: :crying: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted October 16, 2015 Share Posted October 16, 2015 Well this makes me hate this disorder even more, that the solution that's changed her life could actually be dangerous to her health. I've come to think of it as a monster that does its best to try and take away peace and happiness. That makes me all the more determined to find ways to beat it down, which you WILL do, you'll find another option, either new meds or new therapies. And in the meantime I'm betting her relationship with the rest of the family will continue to be strong, because now they understand who she is inside. And my thought was similar to kbutton's, that she herself will be better able to modulate behaviors, and even attend better than before meds, because she understands herself better, and on meds was able to develop coping mechanisms. I've read similar thoughts in more than one place, that many people who stop meds for various reasons can learn to do quite well even without them. Regardless, thank goodness you were diligent enough to catch any potential health issues before they became serious, and will be able to decide the right direction to take next. Big :grouphug: :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 16, 2015 Author Share Posted October 16, 2015 Thank you for all the support. If we can get into the pediatrician tomorrow, I'm going to ask for a referral and a script for OT, for a place that has IM. Quote Link to comment Share on other sites More sharing options...
FairProspects Posted October 16, 2015 Share Posted October 16, 2015 I'm so sorry. I hope there are alternatives. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 16, 2015 Author Share Posted October 16, 2015 If it's a stimulant med, can they try a non-stimulant med? Surely there will be something. We will hope! :) I hope so. The pharmacist recommended a couple that could be tried before trying a non-stimulant. Before this, she had a bad reaction to another stimulant, but at least that one was obvious immediately. Still it makes me wonder if we won't continue to have this issue. But that's not good, is it? I need to think more positively. I have a great ped, a great pediatric cardiologist, a great pharmacist, and a new APN to look forward to meeting. With this team, we will be able to work it out. 2 Quote Link to comment Share on other sites More sharing options...
Princess Ariel Posted October 16, 2015 Share Posted October 16, 2015 I can relate to the trial of medications! My ds has had serious reactions to a few stimulants and non-stimulants. None were heart related but were very concerning. I do know that the last time he was started on a stimulant the psychiatrist he just began working with at the time ordered an EKG the first week he was on it and there were no concerns. The pediatrician's office had never done that in the past but the psychiatrist required it . Ds is currently on his second non-stimulant and is falling asleep during the day and then is awake during the night. The psychiatrist and psychologist do not agree on the type of med he should be on so we are in a quandry and school is going poorly this fall. We are in the middle, able to see both sides but without going into the side effects, we need to get this worked out soon as ds is 16. I truly hope things work out for your dd! 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 16, 2015 Author Share Posted October 16, 2015 We went to the pediatrician and she was great. She wants me to track dd's heart rate without meds until we see the new person for another med trial. She ordered an EKG and we're able to get it done today. She also wanted that done before any more meds were tried. We have a script for OT, too. And we're going to start the protocol for orthostatic intolerance, pushing fluids and increasing salt, to see if it helps with dd's headaches. It looks like not too much school work will get today, but we will have accomplished a lot. 6 Quote Link to comment Share on other sites More sharing options...
Heathermomster Posted October 16, 2015 Share Posted October 16, 2015 Son's psych ordered a DNA test that looks for specific metabolic markers to help reduce negative side effects from stim and non-stim medications. I don't know how great the test is; however, DS had a cheek swab in the psych's office. Results came back in about 2 weeks. DS is currently taking Strattera My mother is pace maker dependent. My father and eldest sibling have mitral valve prolapse. My children and I get tachycardia from 12 hour sinus medicine. I'm sorry that your DD is suffering. A non-stim med may work. Try not to panic just yet. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 17, 2015 Share Posted October 17, 2015 I hope so. The pharmacist recommended a couple that could be tried before trying a non-stimulant. Before this, she had a bad reaction to another stimulant, but at least that one was obvious immediately. Still it makes me wonder if we won't continue to have this issue. But that's not good, is it? I need to think more positively. I have a great ped, a great pediatric cardiologist, a great pharmacist, and a new APN to look forward to meeting. With this team, we will be able to work it out. If she has had bad physical reactions to two stimulant meds, do you really want to do another one? Have you seen the genetic testing they're doing now? Some of this is actually genetically mediated and predictable. The two companies I've seen with my googling are only looking at a few genes (4 and 8?), so they're not finding EVERY possible reaction and every issue. But I'm just saying she could have a genetic situation where she's just not likely to respond well to those types of meds and needs the other types. Hahaha, I'm such a goober! Now I see Heather already said all that! :D 1 Quote Link to comment Share on other sites More sharing options...
texasmama Posted October 17, 2015 Share Posted October 17, 2015 I hope you can work this out in a way that ends up well for all of you. A friend's son had to decrease his ADHD meds due to high blood pressure. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 17, 2015 Author Share Posted October 17, 2015 Son's psych ordered a DNA test that looks for specific metabolic markers to help reduce negative side effects from stim and non-stim medications. I don't know how great the test is; however, DS had a cheek swab in the psych's office. Results came back in about 2 weeks. DS is currently taking Strattera My mother is pace maker dependent. My father and eldest sibling have mitral valve prolapse. My children and I get tachycardia from 12 hour sinus medicine. I'm sorry that your DD is suffering. A non-stim med may work. Try not to panic just yet. If she has had bad physical reactions to two stimulant meds, do you really want to do another one? Have you seen the genetic testing they're doing now? Some of this is actually genetically mediated and predictable. The two companies I've seen with my googling are only looking at a few genes (4 and 8?), so they're not finding EVERY possible reaction and every issue. But I'm just saying she could have a genetic situation where she's just not likely to respond well to those types of meds and needs the other types. Hahaha, I'm such a goober! Now I see Heather already said all that! :D The new place we will be going to does the DNA test. Meanwhile, the pharmacist assures me that everyone metabolizes differently so he gave me a couple of names of stims that still might work, given what she's reacted to already. My oldest dd did one and only one test of an ADHD med. It was a non-stim and it was fine for a couple of weeks and then she got really grumpy, so I'm not too quick to jump to a non-stim either, but we'll see. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 17, 2015 Author Share Posted October 17, 2015 I think the EKG showed irregularities. I thought I saw some little ones. And, usually, techs are very hush-hush, but when I said, oh, that looks pretty regular, the tech said, there are some irregularities. But when I asked what, she didn't say anything more. I asked for a certain cardiologist to read the results, which means we haven't got the report yet, and I doubt we will until next week. We'll see. FWIW, I took dd's pulse again today according to the doctor's instruction. Strangely, she showed the same pattern of being low or normal during the day and over a hundred in the evening. So it might not be the meds after all. Weird. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 18, 2015 Author Share Posted October 18, 2015 Heart rate 140 in the early afternoon, standing up, without meds. I think I'm going to ask for a cardiology visit no matter what the ekg report says. Quote Link to comment Share on other sites More sharing options...
displace Posted October 18, 2015 Share Posted October 18, 2015 That sounds like a good idea. Even if it were not a reaction to the meds it may be best to find alternatives. A pediatric cardiologist trains in pediatrics first so s/he may be able to give some good guidance on med choices. 1 Quote Link to comment Share on other sites More sharing options...
MerryAtHope Posted October 19, 2015 Share Posted October 19, 2015 (((Hugs))) and hoping you can get to the bottom of this. Quote Link to comment Share on other sites More sharing options...
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