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AmbersMommy

PANDAS & Rheumatic Fever & Unexpected Improvement

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Hi,

 

My daugther has had an unexpected improvement while being on Azithromycin. She has been on it for a little over 2 weeks. My husband and I are nearly in shock. As far back as we can remember she has gotten winded extremely easily. She has never been able to run around like other kids. She would turn pale and pretty much gasp for air after trying to run about 1/8th of what other children can do. Yesterday we went to the beach. Normally we have to carry her once we walk about half way from the parking lot. We NEVER had to carry her. She NEVER got winded. We did a ton of walking all over the beach and on the boardwalk. Oh my goodness!!!! I am so excited about this!!!!! She was like a different kid!!!!! I am wondering if she has/had rheumatic fever?? I got a list of symptoms from the mayoclinic website. I figured I would put it here for an FYI for anyone who wanted to know.

They are as follows:

■Fever

■Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet

■Pain in one joint that migrates to another joint

■Red, hot or swollen joints

■Small, painless nodules beneath the skin

■Chest pain

■Sensation of rapid, fluttering or pounding heartbeats (palpitations)

■Fatigue

■Shortness of breath

■Flat or slightly raised, painless rash with a ragged edge (erythema marginatum)

■Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face; less often in the arms and legs

■Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea

 

She has had the pounding heartbeats, fatigue, shortness of breath, the jerky movements, and inappropriate laughing.

 

Just so you all know, we did bring her to a cardiologist who did an EKG and listened to her heart. He said her heart was fine. Is there a test for inflammation in the heart or is it more diagnosed from symptoms? We were going to bring her to a pulmonologist, but PANDAS hit at that time. Maybe we won't need to!!

 

Has anyone else seen an improvement in fatigue or shortness of breath in their children with antibiotics?? Anyone seen an increase in muscle tone with antibiotic treatment?? As a note I have also put her on Ibuprofen which seems to have decreased the PANDAS symptoms.

 

Just FYI, my daugter's hallucinations and other PANDAS related symptoms have continued to lessen everyday. I am guardedly excited at this point.

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Our PANDAS son was originally diagnosed with ARF / SC. His initial symptoms were straight out of the Mayo list below. He had great difficulty walking or doing anything physical, had the migratory joint pain and shortness of breath, the rapid pulse, etc. At times his muscles would feel so weak that he would collapse to the ground: we called it the "rag doll effect."

 

Abx definitely helped him considerably. Your daughter's case sure sounds hauntingly familiar!

 

 

Hi,

 

My daugther has had an unexpected improvement while being on Azithromycin. She has been on it for a little over 2 weeks. My husband and I are nearly in shock. As far back as we can remember she has gotten winded extremely easily. She has never been able to run around like other kids. She would turn pale and pretty much gasp for air after trying to run about 1/8th of what other children can do. Yesterday we went to the beach. Normally we have to carry her once we walk about half way from the parking lot. We NEVER had to carry her. She NEVER got winded. We did a ton of walking all over the beach and on the boardwalk. Oh my goodness!!!! I am so excited about this!!!!! She was like a different kid!!!!! I am wondering if she has/had rheumatic fever?? I got a list of symptoms from the mayoclinic website. I figured I would put it here for an FYI for anyone who wanted to know.

They are as follows:

■Fever

■Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet

■Pain in one joint that migrates to another joint

■Red, hot or swollen joints

■Small, painless nodules beneath the skin

■Chest pain

■Sensation of rapid, fluttering or pounding heartbeats (palpitations)

■Fatigue

■Shortness of breath

■Flat or slightly raised, painless rash with a ragged edge (erythema marginatum)

■Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face; less often in the arms and legs

■Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea

 

She has had the pounding heartbeats, fatigue, shortness of breath, the jerky movements, and inappropriate laughing.

 

Just so you all know, we did bring her to a cardiologist who did an EKG and listened to her heart. He said her heart was fine. Is there a test for inflammation in the heart or is it more diagnosed from symptoms? We were going to bring her to a pulmonologist, but PANDAS hit at that time. Maybe we won't need to!!

 

Has anyone else seen an improvement in fatigue or shortness of breath in their children with antibiotics?? Anyone seen an increase in muscle tone with antibiotic treatment?? As a note I have also put her on Ibuprofen which seems to have decreased the PANDAS symptoms.

 

Just FYI, my daugter's hallucinations and other PANDAS related symptoms have continued to lessen everyday. I am guardedly excited at this point.

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Our PANDAS son was originally diagnosed with ARF / SC. His initial symptoms were straight out of the Mayo list below. He had great difficulty walking or doing anything physical, had the migratory joint pain and shortness of breath, the rapid pulse, etc. At times his muscles would feel so weak that he would collapse to the ground: we called it the "rag doll effect."

 

Abx definitely helped him considerably. Your daughter's case sure sounds hauntingly familiar!

 

 

Hi,

 

My daugther has had an unexpected improvement while being on Azithromycin. She has been on it for a little over 2 weeks. My husband and I are nearly in shock. As far back as we can remember she has gotten winded extremely easily. She has never been able to run around like other kids. She would turn pale and pretty much gasp for air after trying to run about 1/8th of what other children can do. Yesterday we went to the beach. Normally we have to carry her once we walk about half way from the parking lot. We NEVER had to carry her. She NEVER got winded. We did a ton of walking all over the beach and on the boardwalk. Oh my goodness!!!! I am so excited about this!!!!! She was like a different kid!!!!! I am wondering if she has/had rheumatic fever?? I got a list of symptoms from the mayoclinic website. I figured I would put it here for an FYI for anyone who wanted to know.

They are as follows:

■Fever

■Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet

■Pain in one joint that migrates to another joint

■Red, hot or swollen joints

■Small, painless nodules beneath the skin

■Chest pain

■Sensation of rapid, fluttering or pounding heartbeats (palpitations)

■Fatigue

■Shortness of breath

■Flat or slightly raised, painless rash with a ragged edge (erythema marginatum)

■Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face; less often in the arms and legs

■Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea

 

She has had the pounding heartbeats, fatigue, shortness of breath, the jerky movements, and inappropriate laughing.

 

Just so you all know, we did bring her to a cardiologist who did an EKG and listened to her heart. He said her heart was fine. Is there a test for inflammation in the heart or is it more diagnosed from symptoms? We were going to bring her to a pulmonologist, but PANDAS hit at that time. Maybe we won't need to!!

 

Has anyone else seen an improvement in fatigue or shortness of breath in their children with antibiotics?? Anyone seen an increase in muscle tone with antibiotic treatment?? As a note I have also put her on Ibuprofen which seems to have decreased the PANDAS symptoms.

 

Just FYI, my daugter's hallucinations and other PANDAS related symptoms have continued to lessen everyday. I am guardedly excited at this point.

 

We have had a few of these conditions...out of no where ds would say his chest would hurt...just sitting the car....and it wuld continue off and on for 24 hours...making sure it wasn't indigestion...we took to docs and said he was ok...this happen several times over his younger years...i cant' relate it to indigestion at all...by 2nd 3 rd i was very concerned...doc said sometimes that's just growing pains for kids?????????

 

But i really wanted to say good job at putting your finger on the MMMAAANNNNYYYY presenations/caueses of pandas/pitands...

that i why we must fight...because this is probably the least clear cut of any condition i can imagine..i'm not a doc....but the varieties are like a paint wheel..each just a little off from the next

 

Keep up the good work!!!

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That is wonderful! It seems you have found the right antibiotic for your child, and yes, all those other symptoms are probably part of the same problem and it's all getting better now. Absolutely awesome, I'm very happy for you :blink:

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Lisa Marie, how much azithromycin has your daughter been on for the past two weeks? When did you first see improvements...after two weeks or before? What will happen next? Will you keep her on azithromycin at the same dose, a reduced/maintenance dose or take her off?

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Yes LisaMarie, our d had an obvious recovery week to week with FULL strength LONG TERM antibiotics...for 3 blessed months, and then we did a second steroid burst (the FIRST steroid burst had started recovery...) With the second 3 week steroid burst + full strength antibiotics she came back to herself.

 

Our daughter has been on LONG term FULL strength antibiotics for PANDAS for 18 months now.

 

I am curious as well -- will you continue on FULL antibiotics as long as improvements are being made?

Are you able to ask the doctor if this is possible as long as week-to-week you can demonstrate that your child is making improvements?

 

We are ever so glad we did--All the best and Happy Fourth!

T.

Edited by T.Mom

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Yes LisaMarie, our d had an obvious recovery week to week with FULL strength LONG TERM antibiotics...for 3 blessed months, and then we did a second steroid burst (the FIRST steroid burst had started recovery...) With the second 3 week steroid burst + full strength antibiotics she came back to herself.

 

Our daughter has been on LONG term FULL strength antibiotics for PANDAS for 18 months now.

 

I am curious as well -- will you continue on FULL antibiotics as long as improvements are being made?

Are you able to ask the doctor if this is possible as long as week-to-week you can demonstrate that your child is making improvements?

 

We are ever so glad we did--All the best and Happy Fourth!

T.

 

My daughter was on 1 tsp a day liquid Azithromycin...so 200 mg/day. She improved greatly for the first 2 days then backslid a few days. We are seeing Dr. B. I called him and he upped the dosage to 1 1/2 tsps a day...300 mg/day. Had a little miscommunication with the pharmacy, and just got the upped dosage started a few days ago, but had been seeing steady improvement anyway since she backslid at the very beginning. Think that was my fault anyway because I was giving her a probiotic with magnesium in it at the same time as the Azithromycin which interfered with it. When I stopped doing that she steadily got better.

 

I honestely don't know what we are going to be doing as far as long term antibiotics or what comes next. I am absolutely leaning toward wanting long-term antibiotics, especially with the thought that she has/had rheumatic fever and that is the recommended treatment for it. We still need to get results for Lyme Testing to rule that out. I know that steroid bursts clear up symptoms, but am not sure about doing that at this point. I think I would like to continue the antibiotics. We suspect she has problems with yeast in her system as she has always had digestion issues...which incidentally seem to be better right now. I think steroids may whack out her digestive system.

 

We will be seeing Dr. B. in about 2 weeks, and plan to make a plan of attack at that point!

 

What is Full-Strength antibiotics? Are there dosages that work better? Is it a kid-by-kid basis? Thanks for everyone's comments and help. I am so very happy that this forum exists.

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...My daughter was on 1 tsp a day liquid Azithromycin...so 200 mg/day. She improved greatly for the first 2 days then

...What is Full-Strength antibiotics? Are there dosages that work better? Is it a kid-by-kid basis? Thanks for everyone's comments and help. I am so very happy that this forum exists.

 

 

Full strength for us has been the strength that would be given IF our child had strep throat.

Note: one of our daughters is on full Amoxicillan (for the past 18 months) the other has been on the "Saving Sammy" dose of Augmentin for about 6 months now--both doing well.

 

The Saving Sammy dose of Augmentin is higher (I believe) then it would be for our daughter's weight if we were "just" treating strep.

 

Best advice I ever got was to TRY one month of FULL strength antibiotics--and you know what, it worked...

and continues to work. (Thanks EAMom.)

Edited by T.Mom

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Hi,

 

My daugther has had an unexpected improvement while being on Azithromycin. She has been on it for a little over 2 weeks. My husband and I are nearly in shock. As far back as we can remember she has gotten winded extremely easily. She has never been able to run around like other kids. She would turn pale and pretty much gasp for air after trying to run about 1/8th of what other children can do. Yesterday we went to the beach. Normally we have to carry her once we walk about half way from the parking lot. We NEVER had to carry her. She NEVER got winded. We did a ton of walking all over the beach and on the boardwalk. Oh my goodness!!!! I am so excited about this!!!!! She was like a different kid!!!!! I am wondering if she has/had rheumatic fever?? I got a list of symptoms from the mayoclinic website. I figured I would put it here for an FYI for anyone who wanted to know.

They are as follows:

■Fever

■Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet

■Pain in one joint that migrates to another joint

■Red, hot or swollen joints

■Small, painless nodules beneath the skin

■Chest pain

■Sensation of rapid, fluttering or pounding heartbeats (palpitations)

■Fatigue

■Shortness of breath

■Flat or slightly raised, painless rash with a ragged edge (erythema marginatum)

■Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face; less often in the arms and legs

■Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea

 

She has had the pounding heartbeats, fatigue, shortness of breath, the jerky movements, and inappropriate laughing.

 

Just so you all know, we did bring her to a cardiologist who did an EKG and listened to her heart. He said her heart was fine. Is there a test for inflammation in the heart or is it more diagnosed from symptoms? We were going to bring her to a pulmonologist, but PANDAS hit at that time. Maybe we won't need to!!

 

Has anyone else seen an improvement in fatigue or shortness of breath in their children with antibiotics?? Anyone seen an increase in muscle tone with antibiotic treatment?? As a note I have also put her on Ibuprofen which seems to have decreased the PANDAS symptoms.

 

Just FYI, my daugter's hallucinations and other PANDAS related symptoms have continued to lessen everyday. I am guardedly excited at this point.

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