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Chest Pain and Shortness of Breath?


Dedee
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Has anyone had experience with their PANDAS child complaining of having pain in their "chest and lungs". She says her whole chest is really tight and that she feels like she can't breath good. At the same time she says her arms and legs are very heavy and she feels like she can't walk and that she is dizzy and nauseated. She has done this a couple of times in the past but last night it went on for over an hour. I thought it might be anxiety and tried to get her to take a warm bath but when she got in the water she said the water made it harder to breath. Usually a warm bath is very calming for her. As she was getting out of the bath, she stumbled because of the dizziness and then another time while she was dressing, almost fell because she was dizzy. I have an appointment for her to see her pediatrician this afternoon, but her docotor isn't very knowledgable on PANDAS. She (the doctor) knows we are in the middle of a PANDAS flare but we are waiting for our appointment to see Dr. Murphy (in three weeks)to decide on treatment. My daughter had a bicillin injection 10 days ago and we have seen mild improvement in behavior but no changes in her tic.

 

So, do you all think this is related to PANDAS or something else? Is it serious or just another one of those strange PANDAS symptoms? I'm not sure I'm going to make it three more weeks. I really need someone around here who knows more about PANDAS than I do. I get so tired of trying to diagnose and treat my on child. I would really appreciate anyone's input or personal experience. Thanks so much.

 

Dazed & Confused - Dedee

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Yep, our PANDAS ds complained frequently of chest pain, racing heart, difficulty breathing, dizziness, nausea. He had great difficulty walking at the onset of his illness, when he was originally diagnosed with Sydenham's chorea. That all resolved with effective PANDAS treatment.

 

So we, at least, believe there's definitely a relationship between PANDAS flares and these kinds of symptoms.

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Oh yes, my daughter has had that same problem. All I can tell you is that it seems to happens when we are in our worst strep related episodes. And it seems to be related to her OCD raging out of control. We do not, as of yet, have a pandas diagnosis because my doctors here haven't been supportive. So I don't have any other advice to offer. However I can tell you when she starts doing that we take it as a sign that things are about to spiral out of control. Last year she started doing it again about 10 days after she had finished amoxicillin for strep. I was able to convince her doc to put her on 4 weeks of omnicef and that did take care of that symptom. We are on the middle of another strep episode with very elevated titers and finishing our antibiotics, omnicef, so I am watching her like a hawk. I am also desperately trying to get to a pandas doctor, somehow I don't think one ten day course of antibiotics is going to take care of an infection where her aso titers are at 2000. Sigh...

Edited by jenb3106
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Like Worried Dad's son, my son was initially diagnosed with Sydenham's Chorea (and rheumatic fever). He suffered from extreme chest pain that was primarily exertion enduced. When he had the chest pain, he had to stop whatever he was doing and rest. He clutched his chest in pain and became bright red and sweaty. The pain generally went away after about ten minutes or so but the redness and sweating often took closer to an hour.

 

He had a cardio work-up. His heart valves were fine but he had a pronounced left axis deviation and a murmur. The cardiologist thought that the strep antibodies had attacked his heart muscle.

 

As time has passed, this has improved significantly (he has been on antibiotics since he was diagnosed). He rarely has chest pain today but it still does happen on occasion.

 

For him, these were not anxiety induced - he is not an anxious child in the least and does not panic about much of anything - "cool as a cucumber" describes him well.

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i'm gonna put this out there..

my ds10 and ds 8...both around the time they were5-6 complained of this for a couple days then went away...with first ds, took to heart dock said it was growing pains???(i did not knw ds 8 was a panda kid till recently ..and ds10 was not in episode at the time)

it is curious that you had a bicillicna injection 10 days ago...so did my ds..his tics have catapoltied..maybe your dd and my ds are herxing in different ways...

day after the shot ds had sore spot in center of chest for a few hours.

we are currently pursueing lymes after a mulititude of tests that all keep pointing us in that direction...

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Dizziness, shortness of breath 'air hunger', chest pain are all symptoms of Babesia and TBI co-infection... inner red cell parasite.

 

The information posted below is some of the more extreme symptoms. Symptoms can be cyclical, migratory and with only a few of the symptoms presenting at any given time.

 

The parasite that causes Babesiosis destroys red blood cells and causes a malaria-like illness which can be fatal. Symptoms include fever, chills, sweats, muscle pains, breathing difficulties, headaches and malaise. Patients may also experience episodes of depression, dizziness, vomiting, bleeding tendencies, acute respiratory distress syndrome, dark colored urine, anemia, swollen spleen, congestive heart failure, renal failure, petechial rash, bruising, jaundice, pulmonary edema, myocardial infarction, anorexia, evidence of shock and encephalopathy. Symptoms may range from mild to severe. Babesiosis symptoms can be similar to malaria symptoms.

 

Information is from http://www.drjoneskids.com under BABESIA

Edited by SF Mom
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My DS7 also has episodes of severe chest pain. They are exertion-induced. He will drop to the floor, clutching his chest and screaming. The screaming makes it hurt more. Then he will clamp his mouth shut and writh in pain. It only lasts 2-5 minutes, but it feels like forever. When it ends, he seems completely fine. He had an echocardiogram, which was normal - of course it was not happening during the test though. The doctor says these are panic attacks, but if he ever saw one I'm sure he would know that they are not. I know panic attacks can cause hyperventilating and chest pain, but DS is happy and playing when they happen (playing soccer with friends, dancing with me, running with grandma, etc.), and he is not anxious before or after. It only happens when he is exerting himself. It just doesn't fit with the anxiety.

 

I don't know how this fits in with PANDAS, and to be honest this is the symptom that made me seriously consider lyme. He does not have a lyme diagnosis, but I test positive for lyme and I'm assuming he has congenital lyme. Who knows?

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My dd11 has the exact same symptoms. She sometimes tells me that it feels like "my heart stops and I can't breath". She gets a terrible headache and then is completely exhausted after the fact. It is very scary to watch her through this, but we have a Pediatric Cardiologist appt on Monday 21st. I am hoping this will bring some insight to what is going on with my beautiful blue eyed baby girl. This is such a hateful disorder/disease our babies have.

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Worried Dad - Did you all ever have any sort of cardiac work up like an echocardiogram or anything? How long did it take for this sort of thing to clear. Thanks for your reply.

 

Dedee

 

Hi, Dedee:

 

Yeah, we had both an EKG and ECG done on our son at various points. Luckily, both were normal. HUGE relief, as rheumatic heart disease is still a deadly complication from ARF, and our son was 1st diagnosed with ARF/SC.

 

When I used to hang out on an SC forum, these symptoms were described as very common among the posters and their afflicted kids. Probably there are various infections (Lyme co-infections, ARF / SC / PANDAS, other PITAND stuff?) that can trigger this, though, as others have pointed out.

 

Interestingly, our PANDAS ds has been complaining more of the dizziness, nausea, shortness of breath in the past month. Even has stopped going to tae kwon do, which he loves, because the last 2 times he went, he experienced the chest pain / dizziness / shortness of breath during exertion. So happens our youngest recently spiked a very high ASO titer again. Coincidence? Maybe... but this is the 1st time our PANDAS ds has complained about these symptoms in a long time.

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My dd has this from panic attacks... every time she has one, she complains of chest pain and difficulty breathing. She never had them before PANDAS... seems the anxiety is the culprit. To manage them, I try deep breathing with her, visualization, soothing music... anything that might help her to get through them.

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Has anyone had experience with their PANDAS child complaining of having pain in their "chest and lungs". She says her whole chest is really tight and that she feels like she can't breath good. At the same time she says her arms and legs are very heavy and she feels like she can't walk and that she is dizzy and nauseated. She has done this a couple of times in the past but last night it went on for over an hour. I thought it might be anxiety and tried to get her to take a warm bath but when she got in the water she said the water made it harder to breath. Usually a warm bath is very calming for her. As she was getting out of the bath, she stumbled because of the dizziness and then another time while she was dressing, almost fell because she was dizzy. I have an appointment for her to see her pediatrician this afternoon, but her docotor isn't very knowledgable on PANDAS. She (the doctor) knows we are in the middle of a PANDAS flare but we are waiting for our appointment to see Dr. Murphy (in three weeks)to decide on treatment. My daughter had a bicillin injection 10 days ago and we have seen mild improvement in behavior but no changes in her tic.

 

So, do you all think this is related to PANDAS or something else? Is it serious or just another one of those strange PANDAS symptoms? I'm not sure I'm going to make it three more weeks. I really need someone around here who knows more about PANDAS than I do. I get so tired of trying to diagnose and treat my on child. I would really appreciate anyone's input or personal experience. Thanks so much.

 

Dazed & Confused - Dedee

Any history of allergies or asthma? I have a son who gets like that and when I take him in, I'm always told he is wheezing. He doesn't have a cough, stuffines, or anything else, so it can creep up on us. Usually, nebulizing him for a few days is all it takes. I would just bring her to the pediatrician to check for that (unless you are good at listening to her lungs... sometimes you can actually hear it just by putting your ear to her back!)

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my DS14 has had some episodes like this. it starts with a full feeling in the stomach and then he feels like he can't get a deep breath. he had a few minor ones that always went away after we went to the cranial adjustment person. Until last month. We went to the cranial person twice, not better. so we went to MD, he thought maybe it was hiatal syndrome, so we saw an osteo person 3 times to do some kind of stomach / hyoid maneuver that did nothing for more than 10 minutes, so then we tried acupuncture. All of this within 2 weeks, because the feeling of not being able to get a deep breath starting to make him so anxious, and then i got so anxious and it was nasty there for several days, i didn't know what to do. so finally i had an idea, that maybe whatever it is, whatever started it, maybe one of the reasons that it got so bad was because the anxiety skyrocketed, plus you know, after being sick for so long, maybe he was so overfocusing on the symptom. i guess i was desperate, but anyway, i ended up bringing him to see a somatic therapist who also does some clinical hypnotherapy, and after one session about a month ago, the symptoms were at least 50% gone. by the second session, they were 90% gone, and my son has learned some good skills about finding his "healing place" - heck he had no idea he had a healing place, to him all he had was sick places. So he's had 3 sessions and loves it, all the breathing thing is completely gone, and now he's telling me he wants me to try going so i can find my own healing place. well, if i can ever afford to go myself, i probably would.:) don't know if this helps at all.

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