mom2samlibby Posted September 1, 2017 Share Posted September 1, 2017 (edited) Update-- finally got to the cardiologist today. The electrocardiogram was normal, she does not have mitral valve prolapse. The zoloft does not help at all, so I am gradually reducing the dose and weaning her off. 2.5 mg. of Valium twice a day keeps enough of the anxiety at bay to make her functional. She says she is short of breath all the time, more so when laying down. The cardiologist said she has orthostatic issues causing her fluttery heart and dizziness. He recommended drinking 100 oz or more of water each day, core strengthening exercises and 30 minutes of aerobic exercise 5 times a week. Psychiatric appointment is a week from today. The shortness of breath, or the "sighs" is a classic sign of B12 deficiency, along with heart palpitations and dizziness. Anxiety is another sign of B12 deficiency. I would have some more blood work done -- Vitamin B level, iron level, folate level, Vitamin D. This book has a lot of good information in it. https://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884995691 http://b12awareness.org/about-b12/signs-symptoms-neurologic-psychiatric-hematologic-infants-children/ This is another book with a ton of good information in it that a lot of doctors don't mention. Anxiety can be linked to magnesium deficiency, also, along with heart issues. https://www.amazon.com/Magnesium-Miracle-Revised-Updated/dp/034549458X/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=J601JMBB27M5AP6N03RS Edited September 1, 2017 by mom2samlibby 4 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 4, 2017 Author Share Posted September 4, 2017 (edited) The shortness of breath, or the "sighs" is a classic sign of B12 deficiency, along with heart palpitations and dizziness. Anxiety is another sign of B12 deficiency. I would have some more blood work done -- Vitamin B level, iron level, folate level, Vitamin D. This book has a lot of good information in it. https://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884995691 http://b12awareness.org/about-b12/signs-symptoms-neurologic-psychiatric-hematologic-infants-children/ This is another book with a ton of good information in it that a lot of doctors don't mention. Anxiety can be linked to magnesium deficiency, also, along with heart issues. https://www.amazon.com/Magnesium-Miracle-Revised-Updated/dp/034549458X/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=J601JMBB27M5AP6N03RS We are supplementing magnesium, so that should be okay. I'll see if Vit. B was testing in previous bloodwork thanks! Edited September 4, 2017 by Shellydon 1 Quote Link to comment Share on other sites More sharing options...
TwoEdgedSword Posted September 4, 2017 Share Posted September 4, 2017 My heart goes out to you. This really sounds like it could be PANS and while there are some specialists, there are many docs poking in the dark or in downright denial on this. It is more than strep titers. It could be related to a bacterial infection such as mycoplasma. Has she had any vaccines recently? There could be an autoimmune encephalitic response to that. Also lymes and thyroid should be looked at. But that description of sudden onset and family under siege is very common in PANS. Praying you get answers and the right doctors and healing for your daughter. 1 Quote Link to comment Share on other sites More sharing options...
TwoEdgedSword Posted September 5, 2017 Share Posted September 5, 2017 Any updates? Hoping things are calming down for you all. [emoji173] Sent from my SM-G920T using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 5, 2017 Author Share Posted September 5, 2017 Any updates? Hoping things are calming down for you all. [emoji173] Sent from my SM-G920T using Tapatalk Thanks. We go to the psychiatrist tomorrow. I'd really like to get her off Valium, so I am hoping he has some suggestions. 3 Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted September 5, 2017 Share Posted September 5, 2017 Hugs to you mom!! Keep up the work, I know it is hard, but remember to take care of yourself as well during this time. Quote Link to comment Share on other sites More sharing options...
TwoEdgedSword Posted September 5, 2017 Share Posted September 5, 2017 Yes and now in crisis mode, you've gotta do what you have to do. Not sure about the Valium, but someone mentioned here or on another thread, that if it is PANS, individuals can be sensitized to SSRIs and they can cause an even more negative reaction. So ideally with those, you'd want to start with the lowest dose possible and increase in small increments if they even help at all. If it's PANS and when the crisis period calms down in the future, there are supplements like NAC, inositol and others to assist if she is still dealing with OCD, but the flare ups have subsided. Hoping for smooth days ahead for her and your family. â¤ï¸ Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted September 5, 2017 Share Posted September 5, 2017 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted September 6, 2017 Share Posted September 6, 2017 We are supplementing magnesium, so that should be okay. I'll see if Vit. B was testing in previous bloodwork thanks! How much magnesium and what kind? If you are seeing any improvements, her dose might not be high enough. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 6, 2017 Share Posted September 6, 2017 Valium is not an SSRI. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 6, 2017 Share Posted September 6, 2017 I just now saw this thread. I wanted to add that I was waking up with what I thought was anxiety....feeling terrified although NOTHING like what you described in your dd. Turns out it was AFib. Took me a couple of years to connect the dots. I hope you find out something soon. Quote Link to comment Share on other sites More sharing options...
TwoEdgedSword Posted September 6, 2017 Share Posted September 6, 2017 TransientChris, yes they are not. Did someone say they were? Think most folks know that. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 6, 2017 Author Share Posted September 6, 2017 The psychiatrist feels like we are dealing with generalized anxiety with panic and nothing else. He said the pediatrician and I had done a good job of testing for everything else. The plan right now to to switch from Zoloft to Prozac. Adding Prozac over the course of two weeks and dropping the Zoloft. We are to maintain Valium for now. If the Prozac works, we'll be able to discontinue the Valium. If Prozac does not work, we'll try Lexapro. 2 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 6, 2017 Author Share Posted September 6, 2017 I just now saw this thread. I wanted to add that I was waking up with what I thought was anxiety....feeling terrified although NOTHING like what you described in your dd. Turns out it was AFib. Took me a couple of years to connect the dots. I hope you find out something soon. I think she is having enough orthostatic issues that she is feeling flutters, which is one of the things that is contributing to her anxiety. When her heart flutters, her adrenaline really kicks in causing the anxiety and panic. Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted September 8, 2017 Share Posted September 8, 2017 I think she is having enough orthostatic issues that she is feeling flutters, which is one of the things that is contributing to her anxiety. When her heart flutters, her adrenaline really kicks in causing the anxiety and panic. Would a low dose of a beta blocker help stop the flutters, and in turn reduce her anxiety? 1 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted September 10, 2017 Share Posted September 10, 2017 The psychiatrist feels like we are dealing with generalized anxiety with panic and nothing else. He said the pediatrician and I had done a good job of testing for everything else. The plan right now to to switch from Zoloft to Prozac. Adding Prozac over the course of two weeks and dropping the Zoloft. We are to maintain Valium for now. If the Prozac works, we'll be able to discontinue the Valium. If Prozac does not work, we'll try Lexapro. For what it's worth, and this is only our experience, that was the exact sequence of meds that were tried on our dd to no avail. The prozac actually increased the heck out of her anxiety, which, apparently, can happen. So she was put on an SNRI as the SSRI's didn't help and it is definitely helping. Effexor is what she is on. She is also on a beta blocker to take as needed which helps as well. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 10, 2017 Author Share Posted September 10, 2017 Would a low dose of a beta blocker help stop the flutters, and in turn reduce her anxiety? Possibly. The downside is that she has low(er) blood pressure and the beta blocker will drop it even more. It is certainly on the short list of things to try though. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 10, 2017 Author Share Posted September 10, 2017 For what it's worth, and this is only our experience, that was the exact sequence of meds that were tried on our dd to no avail. The prozac actually increased the heck out of her anxiety, which, apparently, can happen. So she was put on an SNRI as the SSRI's didn't help and it is definitely helping. Effexor is what she is on. She is also on a beta blocker to take as needed which helps as well. Thanks for sharing your experience. I am hoping the Prozac will help, but if not, we'll move on to the next thing. I'll bring up Effexor to her doctor if we need to move from Prozac. Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted September 10, 2017 Share Posted September 10, 2017 Possibly. The downside is that she has low(er) blood pressure and the beta blocker will drop it even more. It is certainly on the short list of things to try though. My anxiety started when I was in college, and the palpitations that came with it made it much worse. I also have pretty low blood pressure. I was able to take a very low dose of atenolol (like 1/4 of a smallest dose) without lowering my blood pressure too much, but it was enough to stop the palpitations. Quote Link to comment Share on other sites More sharing options...
EKS Posted September 10, 2017 Share Posted September 10, 2017 I have experience with weird heart rhythms. Things that make it worse: caffeine, alcohol (I realize this one isn't applicable here), hormones right before my period, dehydration, lack of sleep, starting exercise after being sedentary for a long time (like weeks). I'm on a beta blocker (atenolol) that helps but does not completely eliminate the weird beats. Knowing that they are not harmful is helpful as is consciously relaxing when they occur (instead of freaking out, which I have also done!) helps. Have you looked into CBT at all? (I apologize if you have already discussed any of this.) Quote Link to comment Share on other sites More sharing options...
GoodGrief Posted September 10, 2017 Share Posted September 10, 2017 I haven't read all the replies, but I immediately thought of autoimmune encephalitis. It is frequently misdiagnosed as a psychiatric condition and has a relatively sudden onset. Can be tough to get an accurate diagnosis and treatment depending on where you are. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 20, 2017 Author Share Posted September 20, 2017 Update-- DD13 has been on Prozac for about a week. She is responding very well to it and has improved considerably. She still says her heart feels funny/fluttery 5-10 times each day, but is able to cope. Our only really issue is sleep. She is taking 6 mg of Melatonin at night and is able to fall asleep fairly quickly as long as mom or dad is sitting with her. She is waking up in the night though and cannot fall back to sleep for 2 hours or so. She is tired (and mom is tired). She has tried Valium before bed with no luck. Doctor suggested Klonopin. Not sure what we'll do yet. Quote Link to comment Share on other sites More sharing options...
TwoEdgedSword Posted September 20, 2017 Share Posted September 20, 2017 Keep an eye on how she's doing with melatonin. It can trigger depression in some people. Hopefully ymmv!! Quote Link to comment Share on other sites More sharing options...
wapiti Posted September 20, 2017 Share Posted September 20, 2017 (edited) For many people, less-is-more when it comes to melatonin and waking up in the middle of the night. I would try a fraction of that 6 mg dose. (e.g., I use 500 mcg or even 250 mcg, that's a half or quarter of 1 mg.) Edited September 20, 2017 by wapiti 2 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 20, 2017 Author Share Posted September 20, 2017 Keep an eye on how she's doing with melatonin. It can trigger depression in some people. Hopefully ymmv!! Thanks for that info! For many people, less-is-more when it comes to melatonin and waking up in the middle of the night. I would try a fraction of that 6 mg dose. (e.g., I use 500 mcg or even 250 mcg, that's a half or quarter of 1 mg.) That is easy enough to try. We'll drop to 3 mg tonight Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 20, 2017 Share Posted September 20, 2017 You can get a time release melatonin that helps with middle of the night waking. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
sbgrace Posted September 20, 2017 Share Posted September 20, 2017 (edited) I missed this somehow when you first posted. I"m so glad she's doing better with Prozac. My thought would have been PANS (not strep related--a friend's daughter was mycoplasma for example, and she was cured with a really long dose of antibiotics). I agree with others to try a much smaller dose of melatonin and see how she does. You can get 0.5 mg on Amazon (Pure encapaslations) or extended release in small mcg type doses (Life Extension is the brand I use with my son). He doesn't sleep well still due to anxiety among other things, but he does much better with small doses. Edited September 21, 2017 by sbgrace Quote Link to comment Share on other sites More sharing options...
MBM Posted September 20, 2017 Share Posted September 20, 2017 Update-- DD13 has been on Prozac for about a week. She is responding very well to it and has improved considerably. She still says her heart feels funny/fluttery 5-10 times each day, but is able to cope. Our only really issue is sleep. She is taking 6 mg of Melatonin at night and is able to fall asleep fairly quickly as long as mom or dad is sitting with her. She is waking up in the night though and cannot fall back to sleep for 2 hours or so. She is tired (and mom is tired). She has tried Valium before bed with no luck. Doctor suggested Klonopin. Not sure what we'll do yet. Maybe a little trial of sound therapy might help. My husband listens to a song before bedtime that helps him stay asleep. It has a slower beat that influences the listener's heart beat to sync to the beat. It's on YouTube and is called 'Weightless' by Marconi Union. Earphones/buds are best. Pink noise played throughout the night could help, too. 1 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted September 21, 2017 Share Posted September 21, 2017 Agree with others to try less melatonin.....I take 1 mg, and it works much better than more for me. Dd has chronic sleep problems. She takes clonidine to sleep and it helps her a lot with no side effects. (It's a blood pressure med, so may also help with heart flutters) Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 21, 2017 Author Share Posted September 21, 2017 You can get a time release melatonin that helps with middle of the night waking. Sent from my iPhone using Tapatalk Yes, and I do really think it would help, BUT, she cannot swallow anything but a teeny pill. :( Quote Link to comment Share on other sites More sharing options...
sbgrace Posted September 21, 2017 Share Posted September 21, 2017 Yes, and I do really think it would help, BUT, she cannot swallow anything but a teeny pill. :( Does it work for her to take another dose when she wakes? Our sleep medicine doctor suggested a re-dose anytime/as many times as needed until 3 hours prior to normal morning wake time. Also, the big doses (3 mg) can make sensitive people wake up as it wears off, causing more of an issue. Quote Link to comment Share on other sites More sharing options...
wapiti Posted September 21, 2017 Share Posted September 21, 2017 (edited) FWIW, the 500mcg (0.5 mg) melatonin we use is a peppermint chewable from Trader Joes. I think it works best to use it as a lozenge. https://www.amazon.com/Trader-Joes-Darwins-Melatonin-100tablets/dp/B004OLL190/ref=sr_1_7_a_it?ie=UTF8&qid=1505960927&sr=8-7&keywords=chewable+melatonin Edited September 21, 2017 by wapiti Quote Link to comment Share on other sites More sharing options...
muttmomma Posted September 22, 2017 Share Posted September 22, 2017 My child took clonodine for years for sleep. . Very very helpful. He had severe anxiety, some tics with it and terrible sleep issues. Meds and a great cbt therapist helped him. Ultimately prozac kicked up anxiety for him, whereas zoloft helped. 1 Quote Link to comment Share on other sites More sharing options...
ssavings Posted September 22, 2017 Share Posted September 22, 2017 I apologize - I've skimmed but not read all the posts. I have a fairly severe anxiety disorder and panic disorder. The benzos (kolonapin for me), sleeping meds, and Effexor are great at stabilizing my thoughts - I don't go into the spirals of anxiety that I would before where I would be convinced of something terrible happening. However, I had a lot of issues with the heart palpitations - and they sent me into a spiral (heart rate causes anxiety over a panic attack and the anxiety causes the panic attack). I did a round of biofeedback therapy, hooked to sensors to learn to control my heart rate, breathing, etc. It might be worth exploring for DD? Quote Link to comment Share on other sites More sharing options...
Shellydon Posted September 26, 2017 Author Share Posted September 26, 2017 I apologize - I've skimmed but not read all the posts. I have a fairly severe anxiety disorder and panic disorder. The benzos (kolonapin for me), sleeping meds, and Effexor are great at stabilizing my thoughts - I don't go into the spirals of anxiety that I would before where I would be convinced of something terrible happening. However, I had a lot of issues with the heart palpitations - and they sent me into a spiral (heart rate causes anxiety over a panic attack and the anxiety causes the panic attack). I did a round of biofeedback therapy, hooked to sensors to learn to control my heart rate, breathing, etc. It might be worth exploring for DD? That is a good idea, I had not even consider biofeed back. DD is still waking around 3 or 4 every morning and takes a couple of hours to get back to sleep (yawn!). I am strongly considering the klonopin for night for awhile to see if it would help. Valium does not help with staying asleep for her. Overall, she is much improved, just having issue with sleep. She says she feels 'off' or 'weird' when she has to sit for long periods of time, but is able to do it. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 Update-- sleep is still impossible and this mom is exhausted. Klonopin helps her sleep a about 5-6 hours, but gives her a stomach ache and headache the next day. Valium works for 3 hours. Her doctor has suggested Trazadone. I am really worried about the interaction between Trazadone and Prozac though. Quote Link to comment Share on other sites More sharing options...
Ravin Posted October 3, 2017 Share Posted October 3, 2017 Given how swiftly it came on, I would want a neurological exam to rule out brain tumor or some kind of seizures happening. Then I would go to a pediatric psychiatrist with her rather than rely on a GP to sort her medication situation. 2 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 Given how swiftly it came on, I would want a neurological exam to rule out brain tumor or some kind of seizures happening. Then I would go to a pediatric psychiatrist with her rather than rely on a GP to sort her medication situation. We do see a psychiatrist, but he has been much less helpful that her pediatrician. He is very cookie cutter. E.g., he wants to increase her Prozac dose to 40mg (from 20) because 'that is the standard dosage.' She is doing fine on the 20mg, has no side effects. Her pediatrician is much more willing to look at her as an individual. The standard dose for a teen her age and weight is actually 10 -20 mg, so increasing it does not make sense. I would LOVE to find a different psych doc, but there is no one else in my area accepting new patients that takes my insurance. A visit without insurance is $350 each time, and we just cannot swing that. Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 3, 2017 Share Posted October 3, 2017 (edited) If you are looking for more to add for sleep, consider a half or quarter capsule of ashwaghanda (of course, do your own reading, YMMV, etc. and always look at whether a new supplement interacts with current meds). Edited October 3, 2017 by wapiti Quote Link to comment Share on other sites More sharing options...
Terabith Posted October 3, 2017 Share Posted October 3, 2017 Actually, I would give the trazodone a try. I did trazodone and Zoloft for years without any problems. It’s a pretty mild med. 1 Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 Can she sleep in the daytime at all? No, but she has not napped since 2.5, so that is not a change. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 Actually, I would give the trazodone a try. I did trazodone and Zoloft for years without any problems. It’s a pretty mild med. Thank you Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 But I mean she's not sleeping at night so one would expect her to be catching a nap in the daytime. My thought is that she might be one of those people who react strangely to meds. Like how caffeine calms some people's minds while invigorating others. If so, that would be something (else, sorry) to figure out. No, no naps. She does fine all day until she either lays down or had to sit really still. Co-op classes are challenging because she has to sit so still. She can't stop moving. Almost like restless leg syndrome. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 3, 2017 Author Share Posted October 3, 2017 (edited) The guesswork of this is so frustrating. Having no idea how a medication will affect your child is crazy making. I worry so much about addiction of some of these drugs. Also, when you look up the medications, all you find is horror stories. Ugh. I hate this. Edited October 3, 2017 by Shellydon Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 4, 2017 Author Share Posted October 4, 2017 After much hysteria, she finally fell asleep. I hate worrying about drug reactions. Serotonin Syndrome, Klonopin addiction Ugh Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 4, 2017 Share Posted October 4, 2017 Has she had an actual neurological work up? What you said about not being able to sit still struck a nerve (get it?) with me. Gabapentin has helped me with more than just restless leg but entire body restlessness and nerve problems (including pain). Quote Link to comment Share on other sites More sharing options...
Shellydon Posted October 5, 2017 Author Share Posted October 5, 2017 Has she had an actual neurological work up? What you said about not being able to sit still struck a nerve (get it?) with me. Gabapentin has helped me with more than just restless leg but entire body restlessness and nerve problems (including pain). Not by a neurologist. An ER doc and her pediatrician have done basic neuro exams. The Klonopin plus Prozac is producing the best results and giving her the most normal life. Scares the crud out of me to have her on these drugs, but I don't know what else to do. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 5, 2017 Share Posted October 5, 2017 Coming here late but melatonin occasionally makes orthodtatic problems worse in people prone to them. Hopefully that isn't much of an issue. My D's legs became restless while sitting when she went on an SSRI. It's not ideal but it's a trade off that has been worth it. I wish you well in getting the sleep issues under control. I'd been inclined to try the sleep med. If sleep can be normalized, other things might improve, too. Quote Link to comment Share on other sites More sharing options...
Terabith Posted October 6, 2017 Share Posted October 6, 2017 Have you tried a weighted blanket for sleep? 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 6, 2017 Share Posted October 6, 2017 I agree you need a neurology work up, with a neurologist, not primary care. 2 Quote Link to comment Share on other sites More sharing options...
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