The heart and PANDAS

[P_Mom]

I am wondering if anyone on here has done an echo on their PANDAS child?? Dr. K has told me he has never seen cardiac involvement...Latimer said she used to refer the kids to a cardiologist, but, no longer does because they never find anything. However, I can't shake it....is this something I should do?

[Suzan]

My 7 yr old sees a heart specialist once a year to monitor her PVC (extra heart beat). I'm told it's not related but I always wonder. She developed this PVC when she was around 3 yrs old (I think) and they noticed it during a surgery she had for a birthmark on her forehead. She has had a full workup on her heart and they say there is nothing else wrong, it just fires too often.

 

Susan

[fuelforall]

I am wondering if anyone on here has done an echo on their PANDAS child?? Dr. K has told me he has never seen cardiac involvement...Latimer said she used to refer the kids to a cardiologist, but, no longer does because they never find anything. However, I can't shake it....is this something I should do?

 

My son was tested by a cardiologist before going on meds.

They said he had a borderline first degree heart block.

This is apparently quite common.

Don't have an opinion on its pertinence to PANDAS, I'm afraid.

[sf_mom]

See attached..... When did you talk to Dr. K about this because after our IVIG 4 weeks ago I sent him the following article. He told me they've never seen cardiac involvement but it is not something they've looked into too closely either.

 

http://www.sciencedirect.com/science?_ob=A...eab4ca14ff013f7

[ShaesMom]

I am wondering if anyone on here has done an echo on their PANDAS child?? Dr. K has told me he has never seen cardiac involvement...Latimer said she used to refer the kids to a cardiologist, but, no longer does because they never find anything. However, I can't shake it....is this something I should do?

 

We originally met with a Rheumy after the raised ASO titers. He ordered an EKG & Echo based on the fact that she had a new murmur that wasn't there three weeks prior and because he felt she was definitely having a problem with strep. Both came back normal.

[P_Mom]

Overall...good news so far. SF Mom....did you ever have any testing?

 

Susan....I developed pvcs/pacs last year (wonder why? ) they are the pits...I can feel them and sometimes they wake me up at night. Does your daughter feel them?

 

SF Mom....summer of '08.

[Suzan]

Susan....I developed pvcs/pacs last year (wonder why? ) they are the pits...I can feel them and sometimes they wake me up at night. Does your daughter feel them?

 

Oh weird, did they give you any indication of why you developed them? I have not asked dd if she feels them although we do talk about them sometimes. She has never said she feels them but maybe that is one reason why she has trouble sleeping through the night. I'll have to try to talk to her about it. I'm sure she thinks it's normal. It's crazy trying to count her pulse. It's like there is no rhyme or reason to them.

 

Susan

[Worried_Dad]

We did an echo as a precaution (since our son was originally diagnosed with acute rheumatic fever with Sydenham's chorea) but it was normal. What a relief!

[kim]

I have a history of palpatations and had a different sort of Rhythm problem after my "rash." It stopped (the arrhythmia, not my heart so far!).

 

Did you guys see this article the last time i posted it?

 

http://www.medicalnewstoday.com/articles/141710.php#

 

Shedding Light On Heart's 'Fight Or Flight' Response To Stress

 

That pacing change happens in part because of how the enzyme calcium/calmodulin-dependent protein kinase II (CaM kinase II) is called into action by the body's 'fight or flight' stress response, University of Iowa researchers have found.

[P_Mom]

Kim....didn't get a chance to read it yet...but..."fight or flight"...doesn't that speed up your heart .....sinus tachycardia? I have numerous extra beats every day...they feel horrible...pvcs and pacs...docs say that because my heart is healthy...not to worry. Sometimes I feel like it won't start again...thump..thump..thump----------------------thump thump-------------thump-----

 

I hate it. Just started last year...no explanation....perhaps hormones they say...or stress/anxiety. I vote for stress/anxiety...I have had a tremendous amount the past couple years. (I know...we all have)..I always have had low level anxiety...but, the past year it went through the roof.

[matis_mom]

Our doc sent us for a full cardio check because she suspected strep, and my son also presented swollen joints. I also mentioned he had an inocent murmur which we never had check out because the pediatrician said it was nothing to worry about. It scared us to death to think he might have had any long-term damage! Well, as God would have it, we called that afternoon, and around here it takes about a month to get any appointments with specialists, but they had a cancellation the following morning so in one hour all our fears were put to rest!

But, better safe than sorry. If you child has any symptoms, anything at all, you can probably talk your pediatrician into giving you a referral. They don't want the responsibility, so they are usually happy to say, "you need to go see a specialist." It's worth the peace of mind.

 

Isabel

[mom md]

We saw a cardiologist and the ECHO was normal.

[kim]

Kelly,

 

The pattern that you describe is what I had after the rash. The palpatations were different. They haven't really bothered me since about my mid 20's. They started when I was in 6th grade. They were more like a flutter or extra beat. Sometimes my heart would race like hang, other times it was only the flutter.

 

I've wondered many times, ( I'm going to resist the impulse to quote from articles and just say it, which is hard for me!) if Calmodulin is a main receptor within the cell for calcium.... and stress, hormones and illness can cause a rise of calcium and when it teams up with calmodulin, and you get elevated CamK (not that simple, there are subunits of Camk11). Now, everyone is trying to figure out if strep antibodies bind to gangliosides and cause a rise in CamK. It seems that there is a propensity for this to happen in circumstances of stress, so do these PANDAS symptoms always have to be antibody related, or is elevated CamKinase II an indicator of anything PANDAS related without the other markers being elevated too (anti tubulin, D2 etc).

[memom]

My daughter has an echo scheduled next month per Dr Latimer's suggestion. She is 17 with Pandas and my uncle died at 16yo of rheumatic heart (preantibiotic times). I'm thinking because of the family hx she thought we should cover our bases.

[kim]

Kelly,

 

did you ever get a chance to read that article?

 

If you can hang in there with me, I want to show you something.

 

Here is another article regarding the same thing.

 

http://www.medicalnewstoday.com/articles/106098.php

 

Study Identifies New Mechanism Linking Activation Of Key Heart Enzyme And Oxidative Stress

 

The UI researchers and colleagues from Vanderbilt University in Nashville, Tenn., focused on calmodulin kinase II, or CaM kinase II, a well-studied enzyme critical to many fundamental processes including heartbeat and thought.

and

 

Specifically, they showed that oxidation of two neighboring methionines -- sulfur-containing amino acids -- can sustain CaM kinase activity. Loss of these two methionines prevents activation by oxidation. They also found that they could return CaM kinase to its inactive state and inhibit heart cell death and dysfunction by using an enzyme called methionine sulfoxide reductase A (msrA), which reverses the methionine oxidation. Studies in worms, fruit flies and mice have shown that msrA increases lifespan, but, until now, the enzyme's targets in heart were unknown.

 

 

Since my irregular heartbeat stopped, wondering if you might be willing to be part of a little experiment? (said in my best count dracula type of voice) It only involves food btw!