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Have any of the docs you've seen said anything about our kids hearts ? Isn't Cam K usually studied by researchers interested in heart conditions (and thus how pandas is related to SC and RF..which leads to heart disease?) Doesn't sound like anyone should be walking around with high CamK II. I tried to research it a bit, but didn't understand much. Here is a dumbed down version of one of the articles.

 

http://www.sciencedaily.com/releases/2009/...91204103753.htm

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SFMom,

Thanks for forwarding that link. I can't believe no one is talking about this and we aren't getting our kids hearts checked out. I haven't been to a pandas expert, do they check out the kids hearts (echo or anything?). They must know there is a connection between high CamK and heart issues. Do they give any gueidleins or things to look for or yearly tests our kids should have?

If IVIG and PEX are controversial treatments for the neuropsychological symptoms, maybe doing it to avoid heart damage would be more accepted to insurance and the entire medical community. (that is id there is any improvement with kids hearts after these treatments...)

Another eason we need some longitudinal studies...I wonder how all those original pandas kids, now adults, hearts are...I wonder a lot about them, and now have another question to add to the list.

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Interesting...........my son has a heart murmur and pronounced left axis deviation on his EKG results - but the echo looks ok. He had this before he actually had Sydenham's chorea. But we also know now that he was having repeated untreated strep infections between the ages of 2 1/2 and almost 8 when he was diagnosed with Sydenham's. He started having problems with his heart about a year before the Sydenhm's diagnosis (severe chest pains etc.). Is it the strep antibodies that caused the problems or the high Cam K II?

 

Something for us to monitor for sure.

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Someone out there can correct me if I am worng, but think that High Cam K II was connected to SC before pandas. And the big thing with SC was avoiding Rheumatic Heart condiditons - which is why they started (way back) to prescribe prophylactic antibiotics to SC patients right?

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Hi!

 

I just wanted to say that all three top PANDAS docs we have seen (Dr. K, Dr. L and Dr. T).....have seen no correlation between PANDAS and heart issues. They do not routinely suggest screening. I got both my kids screened just to ease my own mind.

Neither of my boys (younger son Cam Kinase 162) have any strep/PANDAS related heart issues.

 

This study referred to states that 28 of 48 showed "abnormalities." Namely, some reguritation. Regurgitation of heart valves (as long as it is not significant) is normal....it shows up on most normal heart echos. The study even indicated that non of the abnormalities were "hemodinamically significant"......this means they were of no concern or problem.....did not affect blood flow.

Plus, 28 of 48 seems a normal finding to me. Both my boys, as well as myself and my husband, have some regurgitation of different heart valves, again nothing significant, and our hearts/echos are perfectly normal.

 

The last child referred to with kinking , I am sure, had nothing to do with PANDAS.

 

I don't believe there is much merit to heart conditions and PANDAS (my opinion)....however, you may want to get your kids screened to ease your mind.

 

There will be some parents on here whose kids have some heart issues.........for every so many kids checked....you will come up with something. Does that mean it was caused by PANDAS?

 

norcalmom....this issues has been addressed many times on this forum....and with the top PANDAS docs.

 

Sydenham's chorea and PANDAS are two different disorders, however, on the same "spectrum." Sydenham's chorea results from RF, which, as we all know, can result in heart damage and needs to be monitored. None of the top PANDAS docs have indicated any correlation with PANDAS and heart conditions (and collectively, they have seen thousands)......however, Dr. T may suggest screening if your child has been diagnosed with Sydenham's, but not PANDAS.

Edited by P.Mom
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Thanks for this information! YES, this is absolutely relevant to PANDAS/PITAND/SC..., and extremely important. Autoimmune disease is insidious and dangerous. Psychiatric symptoms may be followed even many years later by motor, heart, or joint symptoms -- and vice versa. This casts real doubt on the absolute diagnostic lines currently drawn between various categories of post-infectious autoimmune disease. In fact, I think it's pretty ridiculous to rely on these absolute lines, when the most expert experts in the whole world would have to admit, in all honesty, that they don't begin to have a thorough scientific understanding of these illnesses. For one thing, if it takes years for a patient to get a correct diagnosis of autoimmune disease, the original infectious agent that set the illness in motion may well be long gone. It may not be possible to say with any certainty what the original agent was. Furthermore, the autoimmune response to a single infectious agent may cause various symptoms and in various combinations and sequences in various people. Then there are the questions of combinations of infectious agents ... and genetics ...

 

My son has had episodes of terrible and frightening heart pain, and has indicated a sensation of erratic activity in the area of his heart. He has received an EKG and an echocardiogram, both with normal results. Naturally, I'm glad they didn't find anything wrong. But who knows what might show up tomorrow, or next year, or in 5 or 10 years?... His MRI was also "normal," and yet the latest vaccination-triggered exacerbation of his disease has rendered him mute, unable to read or write even his own name, and housebound with terrible OCD and movement disorder symptoms. Do I think he's doing just fine -- or that all his problems must be psychological -- simply because he received a "normal" MRI reading? NOT ON YOUR LIFE!!!

 

The medical community needs to understand these post-infectious autoimmune diseases better -- and the first thing they need to understand, is that they don't yet understand very much! "Real" doctors have a healthy respect for patient and family, for interdisciplinary medicine, and for the scientific UNKNOWN. Kids suffering from these illnesses need intensive, objective, cooperative medical detective work -- not a brush-off and a trip to the counselor.

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Thanks Kelly and Tenacity,

 

Tenacity, I'm very sorry to hear about your child's condition. I am definatley not getting any more vaccines, flu, DTP or otherwise for my pandas son. Hope your son is improving.

 

Kelly - I will dig back into the foum archives to see what I can find (I'm somwhat new) Thanks for sharing what your pandas docs have told you. Unfortunately I can't download the whole cunningham study, but I do find it interesting that pandas kids (actually, the kids in this study WERE NOT pandas kids, they were kids that develped a tic after a strep infection, so some may have had pandas) have double the number of abnormalities, althought the abnomalites are somewhat "normal" :) . I suddenly developed a murmur 4 years ago, and after a year it got better - very weird - and also nothing t0 worry about according to my doctor, so I know what you mean.

 

Also, in rereading the conclusion I see that the abnormalities decrease with time (see quote below). So, maybe nothing to worry about, but somehting to keep in mind.

 

"Conclusions

The higher rate of echocardiographic abnormalities observed in patients with tic disorder and exposure to group A beta-haemolytic streptococcal antigens, together with their decrease with time, suggest a post-streptococcal pathogenesis."

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I wonder what the time frame for follow-up was....and how many of these kids actually got follow-up echos for non-significant results? What was the level of decrease? How "significant" was the regurgitation in the first place?

 

 

Echos vary from one to another (on same person).....color doppler is very sensitive and can pick up some regurgitation

in one person one time, then not pick it up on the next echo, and vice-versa. It has to do with "over imaging."

My first echo showed color doppler evidence of a hole in my heart (red blood where it should have been blue), then, a TEE and subsequent echo showed nothing...no color changes, no hole.

 

You have to be very careful with Echo interpretation.

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Having dealt with heart related issues with 'the cluster' of children in our history: Tricuspid regurgitation in Adrian and level four aneurysm in my younger son as the result of RF/Kawasaki/PANDAS...... I like to say that these issues can resolve over time with the use of antibiotics (per Adrian's cardiologist). In my younger son, the aneurysm resolved 6 months post hdIVIG just on aspirin therapy.. no antibiotics and were released from cardiologist's care until he is 6 years old.

 

I find the study interesting because it is approximately the same percentage of heart involvement found in RF. I actually figured you had to have heart involvement to be diagnosed with RF but that is not true. Madeleine Cunningham current grant involves auto-immune and heart related issues.... She felt the study I attached important because of its ability to potentially make the connection back to PANDAS.

 

-Wendy

Edited by SF Mom
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SFMom..

 

What level of Tricuspid regurgitation did Adrian have? Did the docs say it was realted to PANDAS? All of us here have tricuspid regurgitation and it is totally normal...benign....it is an extremely common finding. (again, as long as it is not significant) I am guessing it was not significant because you did not mention any follow up with him.

 

I do know that aneurysms are related to Kawasaki disease....perhaps that is the reason for development....not PANDAS.???

 

As you mentioned.......RF only results in heart involvement some of the time...not all the time.

 

Did the other children in the cluster get their hearts checked?

 

One thing for sure....good news that the aneurysm resolved.....scary stuff!

 

Kelly

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I have been reluctant to mention this since I was not sure it was widely applicable and I didn't want to scare anyone, but I did want to jump in here and say that in my family (for those of you who don't know me, we have several adults with PANDAS since childhood in addition to children with PANDAS), there is an association between heart conditions and PANDAS. I (and others in my family) have mitral valve prolapse diagnosed when I was about 30, and at age 40, my chest pain became bad enough that they did a stress test "just in case" it was something more and it came out abnormal... and then an angiogram, which showed a partial blockage. A number of adults in my family have needed bypasses in middle age. My level of blockage was not severe at all and not unexpected for an "average" American person my age, but it was very unexpected (except for the family history) given that I'm a lifetime jogger who's been pretty much a vegan for 30 years, reasonably lean, and premenopausal, and with low cholesterol, etc. It was attributed to inflammation. On 6-month follow-up, the stress test was back to normal, and I was told that it must have been part of an infectious episode (that was the same year we all had a lot of strep), but I still see a cardiologist 1-2x/year for a stress test to make sure that it stays normal, and I will get a repeat angiogram at some point to make sure that the blockage is not progressing. My cardiologist said that as it is, I could live to 95 with the condition without it making a jot of difference, but he warned me never to get overweight, eat poorly, stop exercising, etc.

 

My CamKinase is 182.

 

I should mention, too, that both Dr. Trifiletti and Dr. Bouboulis asked me about my heart before I even mentioned it, so I think they do realize that there may be a connection, long term.

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