Interesing paper

[EAMom]

Who has had an echocardiogram done on their kids? (This study was on tic-ky pandas kids.)

 

http://www.sciencedirect.com/science?_ob=A...f47839807fb1167

[ShaesMom]

Who has had an echocardiogram done on their kids? (This study was on tic-ky pandas kids.)

 

http://www.sciencedirect.com/science?_ob=A...f47839807fb1167

 

 

Shae had an Echo & EKG done back in May. The Rheumy who initially saw her detected a heart murmur that was not there three weeks prior. Both tests came back normal and the murmur was labeled as functional. She may have had a couple of minor vocal tics during her exaceberation last spring but nothing compared to what many of you have discussed.

[thereishope]

My PANDAS son never had to have one done, but my non PANDAS son had a heart murmur at 2 or 3 years old. The doc said that was very common for that age in boys. They did send us to have it checked out and all was well.

[dee45]

Hi,

Anthony has a cardoilogy apppointment on the 24th he will be having an echo.. will keep you paosted.

 

Deanna

[dcmom]

My pandas daughter had a cardio work up. All was normal.

[sf_mom]

I plan to have an Echo done on my son. Here is why.... I think my son may have had a mild form of Kawasaki's that may or may not have been kicked off by strep.

 

Taken from my son's history log.

 

• Novemember 2007 (IMPORTANT HISTORY): In mid Novemember 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Several days later (approximately a week) Our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Within 24 hours of him getting better our 5 ½ month old baby boy started showing signs of a similar illness. However, his symptoms seemed to be much worse with extremel restlessness and vomiting even after IV fluids. Within 48 hours of him getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. At the time, I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s a week prior. I have recently discovered on 8/27/2009 our sons friend had peeling palms and feet (skin coming off in sheets) with a prior fever at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was eventually diagnosed with a resilient strep and treated with several courses of antibiotics, weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. Our sons were playmates and continued to be in contact throughout 2007 - 2008. Our sons friend, seems to have gotten much better but still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, chapped lips with cold sores and is repeating Kindergarden. Our son has often complained of joint pain and has had chronic chapped/peeling lips ever since illness.

 

-Wendy

[fuelforall]

Who has had an echocardiogram done on their kids? (This study was on tic-ky pandas kids.)

 

Yes, a few months back ds9 had one. Generally before you are considered for meds, you have to get checked.

He had borderline first degree heart block. It's fairly common, no cause for alarm, I was told.

[pixiesmommy]

Pixie had an echo 2 yrs ago during her longest "unexplained" fever (104* for a week+) after being treated 3 weeks prior for strep. It did show her murmur but nothing else significant. They did it to rule out Kawasaki.

[Worried_Dad]

Our son had an echo done because he was originally diagnosed with rheumatic fever with Sydenham's chorea. It was normal... thank goodness. From what I've heard anecdotally, seems like the kids who tend more toward the SC / PANDAS symptoms generally don't exhibit heart damage.

[ShaesMom]

Our son had an echo done because he was originally diagnosed with rheumatic fever with Sydenham's chorea. It was normal... thank goodness. From what I've heard anecdotally, seems like the kids who tend more toward the SC / PANDAS symptoms generally don't exhibit heart damage.

 

 

How is your son doing??

[Worried_Dad]

Our son had an echo done because he was originally diagnosed with rheumatic fever with Sydenham's chorea. It was normal... thank goodness. From what I've heard anecdotally, seems like the kids who tend more toward the SC / PANDAS symptoms generally don't exhibit heart damage.

 

 

How is your son doing??

 

Don't want to hijack the thread, so I'll (try to) keep it brief. Haven't been posting much lately: my wife and I are emotionally drained (which I know everyone here can appreciate).

 

It's been 3 months since our 2nd round of IVIG in Chicago with Dr. K, 2 months since the 3rd round. Dr. K really expected those 2 rounds, 28 days apart, to do the trick. Just haven't "seen the magic" this time vs. 1st round last October, when we saw about 70% improvement in the first month after IVIG. Slow, subtle improvement this time - maybe 30%.

 

Fearing that his age (13) and the severity of that last exacerbation (on 3/29/09 - worst yet by far) are making recovery pretty tough. And we're scared. Even after that 1st round of IVIG - and even on prophylactic augmentin - he still had a major relapse from what appeared to be an upper respiratory infection. With 2 younger boys in school / daycare, don't know how we'll keep infection away from him this winter.

 

Things would be much less stressful if we had a local doc to help. Our DAN doc who originally diagnosed our son passed away last October. Been searching (fruitlessly) for a replacement for almost a year. Three pediatricians who said they were accepting new patients declined to take him because "they weren't equipped to deal with something like that." Endless series of ped neuros, infectious disease docs, and child psychs who don't even bother to order any tests: after months of waiting to see them, they just tell us it's not PANDAS (although none of them agree on what it is) and we need to see somebody else. Finally have a line on another DAN doc in our area whom we hope will be willing to help... guess we'll see.

 

Have been waiting to post until I had better news. This past week has been better, so maybe we're getting there. We just have a long, LONG way to go to approach anything like normality!

 

I love the positive updates and success stories I read on here. Gives us hope. I pray to be able to share good news someday soon!!!

[ShaesMom]

Our son had an echo done because he was originally diagnosed with rheumatic fever with Sydenham's chorea. It was normal... thank goodness. From what I've heard anecdotally, seems like the kids who tend more toward the SC / PANDAS symptoms generally don't exhibit heart damage.

 

 

How is your son doing??

 

Don't want to hijack the thread, so I'll (try to) keep it brief. Haven't been posting much lately: my wife and I are emotionally drained (which I know everyone here can appreciate).

 

It's been 3 months since our 2nd round of IVIG in Chicago with Dr. K, 2 months since the 3rd round. Dr. K really expected those 2 rounds, 28 days apart, to do the trick. Just haven't "seen the magic" this time vs. 1st round last October, when we saw about 70% improvement in the first month after IVIG. Slow, subtle improvement this time - maybe 30%.

 

Fearing that his age (13) and the severity of that last exacerbation (on 3/29/09 - worst yet by far) are making recovery pretty tough. And we're scared. Even after that 1st round of IVIG - and even on prophylactic augmentin - he still had a major relapse from what appeared to be an upper respiratory infection. With 2 younger boys in school / daycare, don't know how we'll keep infection away from him this winter.

 

Things would be much less stressful if we had a local doc to help. Our DAN doc who originally diagnosed our son passed away last October. Been searching (fruitlessly) for a replacement for almost a year. Three pediatricians who said they were accepting new patients declined to take him because "they weren't equipped to deal with something like that." Endless series of ped neuros, infectious disease docs, and child psychs who don't even bother to order any tests: after months of waiting to see them, they just tell us it's not PANDAS (although none of them agree on what it is) and we need to see somebody else. Finally have a line on another DAN doc in our area whom we hope will be willing to help... guess we'll see.

 

Have been waiting to post until I had better news. This past week has been better, so maybe we're getting there. We just have a long, LONG way to go to approach anything like normality!

 

I love the positive updates and success stories I read on here. Gives us hope. I pray to be able to share good news someday soon!!!

 

Can you tell us what state you live in? maybe someone can recommend a doctor in the area. Have you been reading the recent findings on the immunological issues? Could this be something your son may have as well. Please tell us how we can help???

[Worried_Dad]

Can you tell us what state you live in? maybe someone can recommend a doctor in the area. Have you been reading the recent findings on the immunological issues? Could this be something your son may have as well. Please tell us how we can help???

 

We're in a small town in West Michigan. Don't think there's anybody else on the forum in our immediate area, although pmoreno is less than 2 hours away. We're lucky to have Dr. K only 3+ hours away, and Dr. Chugani is 3 hours in the other direction (Detroit)... but 3 hours is awfully far for routine appointments and care. And as great as these docs are, they're not comfortable prescribing meds, etc., from that far away.

 

We're hoping to get immunological workup through this new DAN doc. But - due to our son's extreme OCD contamination fears - lab tests are pretty tough right now. (Took us 3 trips - 45 minutes each way - to finally get blood drawn last week. I know others can relate!)

 

And hey... everybody on this forum helps us every time they post! Don't know what we'd do without this sanity-saving life line.

 

Thanks to you all!

[EAMom]

Worried dad...I'm hoping something good will happen after puberty. Are your son's symptoms mainly OCD now (vs. joint stuff/abnormal movements)?

[Worried_Dad]

Worried dad...I'm hoping something good will happen after puberty. Are your son's symptoms mainly OCD now (vs. joint stuff/abnormal movements)?

 

Yep, at the current moment, OCD is by far the biggest problem. Originally it was all joint pain, headache, difficulty walking, cognitive fog, insomnia, seizure-like episodes that were sometimes tic-like, but no OCD at all. Second exacerbation was extreme OCD with rages, crying jags, suicidal talk, anorexia, and a new vocal tic. This time around is almost purely OCD / general anxiety. Every round has been different... which I guess is pretty common.

 

We're praying for the "puberty miracle": maybe the blood-brain barrier will close and protect him from more damage at that point? Guess we'll just hang in there and keep trying what we can until then.

 

How's your daughter doing post-IVIG?