Shortness of Breath

[Allison]

Hi,

My dd16 is on day 5 of high-dose Prednisone (10 mg) and we've opted to go for a weaning month.

 

We saw a worsening of symptoms within a day of starting this course, OCD, extreme irritability, head-picking, fatique, day/night flipping, etc. Doc called this a "blip" and we switched from 2xice weekly Azith. to daily Augmenten. For the past 3 days she's also complained of breathing difficulties, to the point that I was calling Doc's office wondering whether ER was needed yesterday. We just kept her under adult supervision at all times, which meant an upopular outing to her sister's swim practice. But at least she did it. Last night she woke us up several times with insomnia, shortness of breath, and continued peevishness. She ended up camping out on our floor so that we could at least get some sleep.

 

So, my real question is whether these are exacerbated symptoms or just side-effects of the meds? Doc thinks the former, and the breathing issues sound like a panic attack, which makes sense. But still I worry. Anyone else out there have a similar profile or experience?

 

Everyone, including the dog, (except my husband) has been swabbed for strep. I'm clear. Dd11 has Strep-G (what's that?) and will be tested for Pandas next. Waiting to hear about dog. Anyone know whether bunnies can carry strep?

 

Thanks,

Allison

[KeithandElizabeth]

Allison:

 

It sounds like a panic attack, but I am not an expert on steroids. I know others on the forum have more experience and, hopefully, they will chime in.....

 

How did you find out your daughter had strep G? What tests did you run? My husband and I are both about to go in to get our blood work done and I want to make sure we get the right tests.

 

Elizabeth

[CSP]

Allison,

 

My friend was told she has costocongitis, and is taking the same medication your dd is taking, and she also has been having shortness of breath. Dr. have told her it was panic attacks too. She does not believe that is the case, and thinks it is from the medication. Costocongitis has to do with the heart and so the Dr. told her shortness of breath has nothing to do with that, so she feels this is a side effect. She also would like to stop the medication but has to go slow with the weening.

 

Hope that helped.

cp

[Pandamom777]

Allison,

I'm also curious to hear what others have to say. We are in the process of finding out of our daughter has PANDAS, but she has been having periods of hyperventilating and breath holding for a long time -- sometimes to the point of her lips turning blue. Her oxygen levels are always OK, though, and she always starts breathing normally after awhile.

Sharon

[Debbie1]

How did you find out your daughter had strep G? What tests did you run? My husband and I are both about to go in to get our blood work done and I want to make sure we get the right tests.

 

Elizabeth,

 

Ask your doctor to culture for all groups of strep rather than just group A. It is just a throat swab. When they send out the culture to the lab, the results will specify which group of strep you have. I was positive for group G strep a few months ago.

 

Debbie

[P_Mom]

10 mg is actually a low dose....especially a 16 year old.....my 6 year old took 40 mgs.

[P_Mom]

CSP....do you mean Costrocondritis?? If so, it has nothig to do with the heart...it is inflammation of the cartilage that attaches your ribs to your breastbone...causes pain, mostly, and hotness of breath. I have this now.

[CSP]

P.mom,

 

I guesss that would be it. She said she feels pressure around the heart, does that sound right? She never said hotness of breath so I don't know what you mean by that. She said she was given the medication to keep the immflammation down. She has been to the ER so much in the last month the Drs. did not know what she had, because she also had burning and itching of the skin. They know believe the burning and itching was caused by the dyes in the medications she takes.

 

She also said in addition to the short breath, her heart rate drops then speeds up and she feels like she is having a heart attack.

 

Does that all sound like what you are going through?

 

CP

[momto2pandas]

It's actually spelled costochondritis. My ds6 and I get it too. For him, it's an indicator symptom - it's actually the first thing that happens when we have an inflammatory episode of some sort, even when mood/behavior is fine. I am noticing through my posts on here that he, in pariticular, seems to have the typical behavioral symptoms as only his "minor" symptoms to these auto-immune episodes - mostly we see neuro stuff (sensory hypersensitivity, weird stuff with his legs), costochondritis, dilated pupils, skin conditions before we actually see mood stuff.

 

In my experience, costochondritis has nothing to do with a panic attack, isn't necessarily correlated with any anxiety at all. Panic attacks usually have shortness of breath in conjuction with other sysmptoms such as rapid heartbeat, sweating, overwhelming sense of anxiety/panic, sometimes dizziness, etc.

 

If your dd is really feeling problems with her heart, could it be endocarditis? I had that a couple of times, as well. That's more dangerous but it doesn't sound like that from her symptoms (chest pain is really quite bad for endocarditis), and I wouldn't expect that to get WORSE with steroids.

 

 

Hi,

My dd16 is on day 5 of high-dose Prednisone (10 mg) and we've opted to go for a weaning month.

 

We saw a worsening of symptoms within a day of starting this course, OCD, extreme irritability, head-picking, fatique, day/night flipping, etc. Doc called this a "blip" and we switched from 2xice weekly Azith. to daily Augmenten. For the past 3 days she's also complained of breathing difficulties, to the point that I was calling Doc's office wondering whether ER was needed yesterday. We just kept her under adult supervision at all times, which meant an upopular outing to her sister's swim practice. But at least she did it. Last night she woke us up several times with insomnia, shortness of breath, and continued peevishness. She ended up camping out on our floor so that we could at least get some sleep.

 

So, my real question is whether these are exacerbated symptoms or just side-effects of the meds? Doc thinks the former, and the breathing issues sound like a panic attack, which makes sense. But still I worry. Anyone else out there have a similar profile or experience?

 

Everyone, including the dog, (except my husband) has been swabbed for strep. I'm clear. Dd11 has Strep-G (what's that?) and will be tested for Pandas next. Waiting to hear about dog. Anyone know whether bunnies can carry strep?

 

Thanks,

Allison

[P_Mom]

my costo (i'll just keep it at that ), started after a panic attack and traumatic event in my family...not to mention the very anxious/stressful previous two years after PANDAS onset. I was told the number one reason for my condition was because of chronic anxiety, which inturn leads to chronic "bracing"......holding a steady flight or fight response...for me, it is completely anxiety caused.

Many people who have this feel like it is their heart and end up in the hospital alot. Check it out....google it. (CSP)

 

lol CSP...I meant shortness...not hotness of breath.

 

I do get shortness of breath with it and heart palpitations. Saw my cardiologist yesterday...starting a 30 day event monitor

Monday. He, and two of my other docs...said it is all (costo, shortness of breath, palps) are anxiety related.

MAKES PERFECT SENSE!

[GatsMom]

Hi,

My dd16 is on day 5 of high-dose Prednisone (10 mg) and we've opted to go for a weaning month.

 

We saw a worsening of symptoms within a day of starting this course, OCD, extreme irritability, head-picking, fatique, day/night flipping, etc. Doc called this a "blip" and we switched from 2xice weekly Azith. to daily Augmenten. For the past 3 days she's also complained of breathing difficulties, to the point that I was calling Doc's office wondering whether ER was needed yesterday. We just kept her under adult supervision at all times, which meant an upopular outing to her sister's swim practice. But at least she did it. Last night she woke us up several times with insomnia, shortness of breath, and continued peevishness. She ended up camping out on our floor so that we could at least get some sleep.

 

So, my real question is whether these are exacerbated symptoms or just side-effects of the meds? Doc thinks the former, and the breathing issues sound like a panic attack, which makes sense. But still I worry. Anyone else out there have a similar profile or experience?

 

Everyone, including the dog, (except my husband) has been swabbed for strep. I'm clear. Dd11 has Strep-G (what's that?) and will be tested for Pandas next. Waiting to hear about dog. Anyone know whether bunnies can carry strep?

 

Thanks,

Allison

 

Allison,

 

Shortness of breath is one of the many manifestations of a panic attack in my ds16. Admittedly, when that one started it scared me to death but inevitably when the panic subsides (which is nearly also with the help of meds) the shortness of breath goes too.

 

How long have you been on Augmentin? Seeing any benefit?

 

Best wishes to you,

Gat's mom.

[momto2pandas]

that's very interesting. I never noticed a connection between the shortness of breath and anxiety in either me or my son. Maybe we're just always anxious and don't know the difference!

 

my costo (i'll just keep it at that ), started after a panic attack and traumatic event in my family...not to mention the very anxious/stressful previous two years after PANDAS onset. I was told the number one reason for my condition was because of chronic anxiety, which inturn leads to chronic "bracing"......holding a steady flight or fight response...for me, it is completely anxiety caused.

Many people who have this feel like it is their heart and end up in the hospital alot. Check it out....google it. (CSP)

 

lol CSP...I meant shortness...not hotness of breath.

 

I do get shortness of breath with it and heart palpitations. Saw my cardiologist yesterday...starting a 30 day event monitor

Monday. He, and two of my other docs...said it is all (costo, shortness of breath, palps) are anxiety related.

MAKES PERFECT SENSE!

[Allison]

Thanks everyone. Very interesting ideas. Some answers to questions:

1. Yes, it was a throat swab in my daughter, and ours is a Pandas doc who knows to do full panel and send away for lab results. The G info was passed on during a brief call about other dd, so I have yet to learn more about it. Your info helped, thanks.

2. I've never heard of this "costo" thing, so I'll ask her doctor about it. No chest pain reported, and she denies any anxiety.

3. We started the Augment. Sunday night, so only a few days. This is her second round on both the steroids and antibiotics. It doesn't seem to help at all, but it didn't during the first round either. After that first round, though, we did have some good, clear time when she was up, out and about, did some homework with the tutor, etc. We've even arranged with school for her to start going again with the new semester that starts next week. I agreed to this new round because I thought we could slip it in before she went back and could get another post-round "bump." Or is it a "post-blip bump?"

 

We're really pinning a lot of hope on the IVIG, which we need pre-authorization for, so keep your fingers crossed!!!

 

Thanks again for the input, it really did help.

 

Allison

[Megs_Mom]

Panic is generally pretty unmistakable - if you know what you are looking at. Shortness of breath is a classic symptom. My daughter did have Panic Attacks when in severe exacerbation - they are very frightening, but can be helped with a calm support person and deep breathing from the belly. One way to know if there is a panic component is to practice deep breathing. If this helps, then you know it is anxiety. This does sound like panic from your description. Our daughter would also go pale, feel very hot, feel like she was choking or her throat was tight, feel like "bolting" from any kind of circumstance, and act very irrationally about any thought that popped into her head. There was no discussing anything in the midst of a panic attack - we would just use specific tools to help her calm herself. Many "false heart attacks" are actually panic attacks. Defining and explaining a panic attack was very helpful to our dd, so it at least made a little sense to her & she did not add to the panic by overreacting.

 

Prendisone does have "heightened anxiety" as a side effect. Our pharamacist told us this in front of our daughter, and as a result, she nearly would not take it (she knew she did not need more anxiety at that point). However, the result for her was the polar opposite, with a nearly complete calm descending within half a day, and lasting just for the days that she was on the Prednisone (5 days). The pharmacist did confirm that the same brain tools that work for regular anxiety would also work for Prednison induced anxiety.

[Allison]

Panic is generally pretty unmistakable - if you know what you are looking at. Shortness of breath is a classic symptom. My daughter did have Panic Attacks when in severe exacerbation - they are very frightening, but can be helped with a calm support person and deep breathing from the belly. One way to know if there is a panic component is to practice deep breathing. If this helps, then you know it is anxiety. This does sound like panic from your description. Our daughter would also go pale, feel very hot, feel like she was choking or her throat was tight, feel like "bolting" from any kind of circumstance, and act very irrationally about any thought that popped into her head. There was no discussing anything in the midst of a panic attack - we would just use specific tools to help her calm herself. Many "false heart attacks" are actually panic attacks. Defining and explaining a panic attack was very helpful to our dd, so it at least made a little sense to her & she did not add to the panic by overreacting.

 

Prendisone does have "heightened anxiety" as a side effect. Our pharamacist told us this in front of our daughter, and as a result, she nearly would not take it (she knew she did not need more anxiety at that point). However, the result for her was the polar opposite, with a nearly complete calm descending within half a day, and lasting just for the days that she was on the Prednisone (5 days). The pharmacist did confirm that the same brain tools that work for regular anxiety would also work for Prednison induced anxiety.

 

Thanks again. I made a mistake about her Pred. dose. It's 10 mgs per pill, which she takes 3 in the a.m. and 3 in the p.m. So it's been 60 mgs per day. Duh, spaced it!

 

She's been through Biofeedback training for her pain and other symptoms, and she says it doesn't really help her breathing.

 

I am wondering if it's an allergic reaction to something. Her diet is atrocious. Mostly milk, yogurt, and peanut butter with Nutella on wheat bread. She likes Teriyaki, sushi, and sometimes burritos. Spaghetti last night for dinner.

 

Anyhow, I continue to monitor, wait and watch, watch and wait. Headed into another evening of TV and insomnia!

 

Allison