Cardiac involvement in children with PANDAS.

[Johnsmom]

DS 10's Echocardiogram came back showing Mild Mitral valve Regurgitation. I posted a few days ago but did not receive a response. We have an appt with a cardiologist. Has anyone ever read this paper or does anyone have any advice about this.

 

Very lost and scared here.

 

Ann

[junkyardjean]

I haven't read the article and do not have any great words of advice, but wanted to share that we just came through a cardiology appointment ourselves with dd4 - her original diagnosis in Nov 11 was RF and she has had periods of ongoing chest pain & fatigue. Thankfully, her echo was clean, but the cardiologist also had a son with PANDAS diagnosis and spoke clearly that we will have to be vigilent with monitoring for valve issues because of the autoimmune issue overall - not just with RF. She said that many people live with heart conditions and have no idea - if dd ends up with one, not to worry off the hop until all information has been gathered (easier said than done I would say - it is her heart for crying out loud!!)

 

My thoughts are with you - I was majorly stressed before the appointment and know we are lucky that she has had no damage up to this point....

[MaggiesMoons]

DS 10's Echocardiogram came back showing Mild Mitral valve Regurgitation. I posted a few days ago but did not receive a response. We have an appt with a cardiologist. Has anyone ever read this paper or does anyone have any advice about this.

 

Very lost and scared here.

 

Ann

 

I have not read the article, but am going to!

 

I have a question: What or why did you get the heart checked? Was it because of the RF or something else? Was it just the PANS DX? I am just wondering if it is warranted for all kiddos with PANS....? The only thing we have tested for in the heart arena was through bloodwork Dr M ordered on our initial visit and round of labs. Don't want to miss the boat, but don't want to do what is not necessary either.

 

I am praying for you and your child, wish I had more to offer on this. Hang in there~

[Buster]

It's hard to tell if mitral valve preceded other symptoms, however, if you have ocd, movement disorder and mitral valve involvement, it sure sounds like underlying acute rheumatic fever . About 30% with arf get monoPhasic Sydenham chorea. About 20% with arf develop OCD (typically those who have sc)

 

thinkIng of you,

 

Buster

Edited June 30, 2012 by Buster

[Kimflow]

so if you are diagnosied with pandas, syndehams chorea, does that mean that someone should have sent us to cardiologist?????

 

Should I pursue this?

 

Thanks.

[Johnsmom]

Thank you to everyone for responding. We are on vacation now so I have to make it brief since we've been in the car for 12 hours and I'm getting the evil eye from DH.

Diagnosis is mild mitral Valve regurgitation and mild left pulmonary regurgitation.

Saw APNP not cardiologist. Didn't even pronounce the name of pandas right. Left off the 's'. Didnt want anything to do with strep lab results and didn't pay much attention to the fact I have RF on both sides of family. Thinks he has exercise induced asthma. Gave us inhaler. Asked her about fatigue. Said go to different dr for that. He's fine. Come back in 3 years.

We absolutely hated her. Even told her about DS's illnesses at age 4 and 8 where he couldn't walk.

University of WI children's hospital is where we went and now we will be trying for an allergy/immunologist but I'm not getting my hopes up.

DS will be 11 in August. We've been battling this since infancy.

[Johnsmom]

I would advise everyone to get their kiddos hearts checked.

We went to neurologist first after ds had some sort of spell at school. We are set up to do a sleep deprived EEG. When we were in the appt I mentioned that DS complains of chest pain and has told me in the past his heart hurts.

[bigmighty]

DS has pandas and also has slight QTc interval prolongation.