heart problems too?

[sf_mom]

I not sure on Adrian's Tricuspid but it did seem minor..... BUT, I know he was checked prior to RF (I think because his mother has a heart murmur) and he had nothing. I got the feeling it would self resolve or nothing to worry about now that he was being treated appropriately for PANDAS hence antibiotics.

 

As for my younger son... Kawasaki's is absolutely the cause for the aneurysm but Dr. K thinks Kawasaki's 'might' be PANDAS at its very extreme. But who really knows at this point. The heart issue was very scary because it was day 5 when they checked..... the tracking was very visible and they didn't know if it would get worse. THANKFULLY, it resolved...

 

No other children in Cluster have had their hearts checked other than listening for heart murmur. I've debated.

 

My biggest worry is that Kawasaki's/RF does get missed because not all symptoms present at once.

 

-Wendy

[Tenacity]

Tenacity: Dr. K has treated several children with similar symptoms... specifically 'rendered mute'. Have you spoken with Dr. K yet or been treated by him?

 

 

Yes, my son received IVIG administered by Dr. K about 7 weeks ago. So far lots of flare-ups of old symptoms, but no breakthrough yet. We're still hoping!...

 

I've learned a great deal from Dr. K during the handful of meetings we have had so far, but we never had any extensive discussion about the mutism. I believe he suspects it might be an OCD-type symptom, but our local neurologist -- an extremely smart specialist, for whom we also have the utmost respect -- believes that Stevie's periaqueductal gray has been injured by the autoimmune disease, not just his basal ganglia, and that some permanent neurological damage may have occurred to cause the mutism. We're really scared...

 

Do you know anything more about how Dr. K's mute patients have fared after receiving treatment?

 

Thanks, SF Mom!

 

Tenacity

[sf_mom]

I just want to say my heart goes out to your son and family. I know Dr. K treated two more mute children in the last two weeks as my girlfriend's son was also being treated at the time. So, too soon to tell with results. I believe one of them was older too, 'teens'.

 

I'm currently reading the book AWAKENINGs.... regarding the wave of Encephalitis Lethargica that came through in early 1900s. Anyway, the various manifestations over TIME is very interesting. Amazingly, many were able to talk again after 30 - 40 years of being unable. I do know of another child who has had full recovery from Encephalitis Lethargica!

 

The flair-ups are a good sign (or at least they always were for us post IVIG..... scary but good). I'll say a prayer for your son that he achieves recovery!

 

-Wendy

[kim]

Since you all are discussing the heart involvement, I was wondering if anyone would take a look at something that has me quite intrigued (if anyone has any brain cells that they can spare today...I'm not too comfortable relying on my own anymore ).

 

I had posted some info on a thread that Peglem started regarding CaMKs. It seemed where heart injury or arrythmia's were concerned that methionine was involved with elevated CaMK. One article said something like "the loss of two neighboring methionines," which I didn't understand at all. It said if these methionines were "lost," that CaM kinase would return to it's normal state.

 

Recently I ran across a diagram that I thought might explain it. It shows where calmodulin, after undergoing transformation by the addition of calcium, has "unmasked," or exposed methionine. Some of the other articles on that thread seemed to show where something called MSRA (S-Methyl-L-Cysteine), would protect cells against damage from oxidation (ok I'm getting lost...have to go find the thread and read this AGAIN) but one study talked about MSRA being found abundantly in garlic, beets, and cabbage. This study was in regards to Parkinson's, which made me think about the tremors that some seem to experience. I, myself had had periods of irregular heartbeats for years, and my oldest son has mentioned it a few times during illness and also a "tremory," feeling. I"m taking orgainic garlic caps right now and continuing to look for new info in this area. Just wondered if anyone thought this was as interesting as I do!

 

Here's the diagram of calmodulin

 

http://www.pdb.org/pdb/static.do?p=educati...th/pdb44_2.html

 

This is the thread that Peglem started with the articles that I was referencing

 

Peg's CaMKs thread

http://www.latitudes.org/forums/index.php?...l=Cam+Kinase+II

 

 

I think these are the key articles from that thread with one that I just found thrown in. I had these saved, so I'll have to read them myself to see if they are the ones that I think they are

 

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

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

 

 

http://www.jneurosci.org/cgi/content/abstract/27/47/12808

Methionine Sulfoxide Reductase A and a Dietary Supplement S-Methyl-L-Cysteine Prevent Parkinson's-Like Symptoms

 

 

http://www.ncbi.nlm.nih.gov/pubmed/20374422

Dopamine D receptor function is compromised in the brain of the methionine sulfoxide reductase A knockout mouse

[norcalmom]

I don't have time at the moment to read (and try to understand...which will take me much longer!) but do appreciate you forwarding these to me. After reading prognosis for SC patients (just a different name for pandas seems to me, reserved for the worst cases!) the potential for long term heart compications from SC is very small, so I'm thinking that for pandas kids will be even smaller.

 

I do find it interesting though, and was hoping we could make a case for some $ from the heart association to fund some pandas research!

[dcmom]

When we were first dealing with pandas, our doctor did recommend seeing a cardio to rule out any heart involvement. I was more than glad to do so- and everything was normal. If you can do so, and only have to pay a copay- I say why not. One less thing to think about at night.

 

I am glad you brought this topic up- because it is a reminder to me- that it might not be a bad idea to do every few years, or after a bad episode- just for a precaution.

 

I think our doctor has said she never had a pandas patient who had heart issues- so probably any connection would be VERY small. But I (like everyone here) no longer have the luxury of taking my kids health for granted, and thinking "oh- they couldn't get that". It was a very simple appt for the kids (almost fun)- and gave me peace of mind.

[MSmom]

I'm reading this thread with extreme interest. My daughter has had a very rheumatic fever like illness along with her PANDAS symptoms,3 different times. She developed a heart murmur and had palpatations and chest pain (among many many other symptoms that were RF like.) None of the doctors around here would listen to me, and I self referred her to a cardiologist here (a very RUDE, condescending cardiologist.) Her echo was normal. She also had a normal SED rate, and her pediatrician felt that if it had been rheumatic fever her SED rate would have been elevated. But in every way, the illness mirrored rheumatic fever. She was ill for months each time, and barely unable to be on her feet more than minutes at at time. The rheumatologist she has now called it post strep arthralgias, but it was so much more than that. I do sometimes worry about her heart, and wonder if it should be monitored more closely. We are just now getting some appointments for her PANDAS, so I'm going to bring up the heart issues when we go.

Pam

[momto2pandas]

I just wanted to mention that I had the same exact thing a number of times in the past with arthralgias and everything starting when I was a young lady. My SED rate was checked many times, and was always normal, to everyone's surprise. However, eventually, like I said I think for the first time at around age 30, my heart issues did develop into mitral valve prolapse, and by early 40's I had additional cardiac issues (was checked many times before this without those issues). Based on my family history (which also includes a lot of RF), I do think that there is a relationship of PANDAS to heart issues for us, but it seems to be very slow moving and relatively benign. Many of us have mitral valve prolapse, but other than some occasional pain, it is inconsequential. And the other blockages due to inflammation appear to have been very slow moving even without treatment. I do have an aunt, an uncle, and a grandmother who all needed bypasses, but they were in their 70's-80's by the time that happened and with poor diets/exercise/overweight (in 2 cases)/postmenopausal, and they all recovered. Other relatives who keep themselves in better shape have not needed cardiac treatment. My grandmother finally did die of heart disease at age 88.

 

Recall, also, that neither I nor my adult relatives were ever treated as kids, so this may be worst case. Also, at least judging by me and my kids, we have very high CamKinase levels (182, 187, and 199). So if I had to guess, I would guess that my family's history would probably be on the worse end of the PANDAS spectrum.

 

There is a widely published link between anxiety disorders (particularly panic disorder) and mitral valve prolapse in adults, and of course also between RF and MVP. But I don't recall ever having seen anything about heart conditions already becoming apparent in childhood anxiety.

 

 

I'm reading this thread with extreme interest. My daughter has had a very rheumatic fever like illness along with her PANDAS symptoms,3 different times. She developed a heart murmur and had palpatations and chest pain (among many many other symptoms that were RF like.) None of the doctors around here would listen to me, and I self referred her to a cardiologist here (a very RUDE, condescending cardiologist.) Her echo was normal. She also had a normal SED rate, and her pediatrician felt that if it had been rheumatic fever her SED rate would have been elevated. But in every way, the illness mirrored rheumatic fever. She was ill for months each time, and barely unable to be on her feet more than minutes at at time. The rheumatologist she has now called it post strep arthralgias, but it was so much more than that. I do sometimes worry about her heart, and wonder if it should be monitored more closely. We are just now getting some appointments for her PANDAS, so I'm going to bring up the heart issues when we go.

Pam

[sf_mom]

This topic has turned out to be timely and relevant!!!

 

Our DS who is now three suffered from Kawasaki's at the age of six months old. Our son was seen by a cardiologist at 8 weeks and 6 months post Kawasaki's acute on-set to see if the aneurysm's he suffered were resolving. At six months, we were given a clean bill of health and we were instructed to revisit them at 6 years of age. Just this week, we've been taking each of our children back to the pediatrician to rerun lab work..... I had the Dr. listen to each ones heart intently due to their exposure to RF and now PANDAs diagnoses. Unfortunately, they did find a heart murmur in our 3 year old son who suffered from Kawasaki's. I can assure everyone that the heart murmur was not present one year ago. We will be heading back to the cardiologist within the next week or two to confirm extend of the murmur. I'll update when I know more.

 

-Wendy

[P_Mom]

Just something that may reassure you, SF Mom. Some docs can hear heart murmurs, some cannot. It is entirely possible that the docs missed the murmur in the past. Also, many children have heart murmurs while they are young, and, they resolve over time....fairly common. My 7 year old PANDAS son has a heart murmur, or, a click, as they called it..............only ONE doc we have seen was skilled enough to hear it (we have seen tons like everyone else)....all the rest missed it. It is not new since PANDAS, has nothing to do with PANDAS, and, we were told to forget about it.

 

My doc declared to me last year he heard a "very loud murmur" when listening to my heart. I was sent for an echo, and, there was nothing found to back up what he "heard."

 

Granted, if the doc said he heard a murmur, yes, you need to get it checked out, just to be sure. My bet, and my hope, is that it is benign and has/had nothing to do with PANDAS.

 

Hoping to hear good news!

[sf_mom]

Thanks for the reassuring perspective. I am hopeful you are correct.

 

I guess ultimately I'm worried because he has Igg Deficiencies, Strep Pneumo Deficiencies 13 of 14, CaM Kinase 148 and now potentially further heart issues, exposure to RF & had Kawasaki's, etc. The next strep event could do real damage and I've been holding off on IVIG for him (he has already had 2 mg/kilo over two days)?!? I have a consult with Dr. K on the 30th to discuss a plan. He has been hesitant to treat my twins due to their age... I don't know but the risks of waiting are starting to mount.

 

I finally think ALL of this is getting to DH too 'the worry'.

 

- Wendy

 

 

Just something that may reassure you, SF Mom. Some docs can hear heart murmurs, some cannot. It is entirely possible that the docs missed the murmur in the past. Also, many children have heart murmurs while they are young, and, they resolve over time....fairly common. My 7 year old PANDAS son has a heart murmur, or, a click, as they called it..............only ONE doc we have seen was skilled enough to hear it (we have seen tons like everyone else)....all the rest missed it. It is not new since PANDAS, has nothing to do with PANDAS, and, we were told to forget about it.

 

My doc declared to me last year he heard a "very loud murmur" when listening to my heart. I was sent for an echo, and, there was nothing found to back up what he "heard."

 

Granted, if the doc said he heard a murmur, yes, you need to get it checked out, just to be sure. My bet, and my hope, is that it is benign and has/had nothing to do with PANDAS.

 

Hoping to hear good news!

[P_Mom]

I have been corresponding with Dr. Cunningham here and there to keep her up to date on the Pepsi Project. Because of recent questions regarding the heart and PANDAS, I thought I would ask her opinion in my last e-mail to her. I asked her, since I know she studies the heart and the affects autoimmune conditions can have on it, what her opinion is on PANDAS and the heart. I asked if she has ever seen heart involvement with PANDAS and if she thought the two were related. I got a very brief response, but, a response nontheless.

 

"It is probably rare that

both would occur in the same individual but it is

possible. We are looking."

 

 

This goes along with what all the other top PANDAS docs have said.........they are not finding a correlation between heart issues and PANDAS.....and this is good news! I am glad Dr. C is looking into it anyway.....but, seems to me she hasn't found anything yet.

[justinekno]

This reminds me of my older son (non-PANDAS) who had a heart murmur while I was pregnant with him. I was monitored overnight, as a precaution, and told by the dr at the hospital that most babies in utero have a heart murmur at some point but it's just a matter of the timing of it happening during an ob dr visit. I wonder if that's the case with the general public. The murmur was never heard again and 17 years later when he had some extensive heart monitoring done, (he was fainting which turned out to be related to low blood pressure but dr wanted to rule out heart problems) everything showed up fine.

 

Just something that may reassure you, SF Mom. Some docs can hear heart murmurs, some cannot. It is entirely possible that the docs missed the murmur in the past. Also, many children have heart murmurs while they are young, and, they resolve over time....fairly common. My 7 year old PANDAS son has a heart murmur, or, a click, as they called it..............only ONE doc we have seen was skilled enough to hear it (we have seen tons like everyone else)....all the rest missed it. It is not new since PANDAS, has nothing to do with PANDAS, and, we were told to forget about it.

 

My doc declared to me last year he heard a "very loud murmur" when listening to my heart. I was sent for an echo, and, there was nothing found to back up what he "heard."

 

Granted, if the doc said he heard a murmur, yes, you need to get it checked out, just to be sure. My bet, and my hope, is that it is benign and has/had nothing to do with PANDAS.

 

Hoping to hear good news!