Rheumatic Fever anyone experience

[JenniferG]

Meg was diagnosed with a new heart murmur at 6. I am convinced is was because of the years of u diagnosed strep. Now she is off antibiotics since Aug and is having "chest pain" (upper L near armpit) some "air hunger" or and just today a little shortness of breath. She does have C Diff. She is SO pale and exhausted. She had a normal EKG 2 weeks ago and her lungss are clear. Am I over reacting, or could she have Rheumatic Fever.. Oh and a low grade fever...

Edited November 11, 2012 by JenniferG

[beeskneesmommy]

Another phone topic. It is likely DS6 had RF - generally diagnosed after the fact from clues in retrospect (loads of Strep infections, rash, Scarlet Fever). RF can lead to either of 2 pathologies - the heart and joint affectation or Sydenham's Chorea which is on the same spectrum as PANDAS. DS6 had PANDAS dx for years, confirmed by multiple docs. Most recently he was also given the SC dx as well. Same treatment - abx and IVig.

[Hopeny]

Personally Jennifer G I would take DD for a second cardiologist/pulmonologist opinion. Sorry I am not sure of your history, have you seen pulmonolgist/had pulmonary fxn test and chest xray? Also random question but does her nose seem drippy at all? During our Lyme misdiagnosis mess DD had a sinus infection that ped wrongly insisted was viral for 6 weeks, DD could not breath, pulmonologist said he thought drippy sinus causing the problem and finally got ped to rx zithromax which cleared the whole thing up. However now we know she has ehrilichia/rmsf and anaplasmosis which also cause all that pulmonary stuff so its hard to know what it was.

[junkyardjean]

dd was diagnosed with RF last year at the age of 3. She has not had any heart involvement yet (but they tell us there is a window of risk that she is not through yet). Her skin is often grey, she tires super easy, and she does complain of chest pain, but so far no heart changes (as seen through tracings & echos). It seems her body is still being affected by her autoimmune response triggered last year by the asymptomatic strep infection (although when the RF took over, it was scary - she was so lethargic and 103+ fevered for over 10 days, almost comatose and lost 5 lbs - she only weighed 28 lbs at the time, so she dipped into skeletal territory)

 

On the flip side, ds7 who has never had RF or any other serious sickness beyond ear infections, was diagnosed with a heart murmur at the age of 6. Totally benign, not related to anything except genetics (that we found about after the fact - two of my sisters also have a benign heart murmur)

 

As we are learning - symptoms are so different for every child. If your heart is telling you something isn't right, keep checking it out...

 

I hope your child feels better soon

[Megan]

I just recently am dealing with PANDAS so can't help in that area but am very well versed in lyme disease and the coinfections. Babesiosis is a coinfection of lyme that can affect the heart and cause extreme fatigue as well. My children were very nauseous when they had babesia and would not eat much. They also had night sweats but mostly just fatigue. It can cause anemia. One child of mine had chest pain and heart palpatations from it. Air hunger is a huge babeisa symptom as well. Igenex labs in CA has a good babesia test in case you want to rule that out.

 

Megan

Edited November 18, 2012 by Megan

[momcap]

DS9 has had symptoms like you are describing. He doesn't currently have them. However, we went to a new pediatrician this month, and when we went over his health history she insisted anyone with a history of strep illness (chronic strep infections, scarlet fever, etc), should have a full work-up with a cardiologist. It will certainly put my mind at ease, so I'm glad we're doing that next.

 

A couple of other thoughts I had when reading your post - pain near the arm pit could by lymph node, and "air hunger" is definitely associated with babesia, as someone else already pointed out. Good luck!