Saw specialist-jackpot!

[T_Mom]

Hi All--

I think those who don't make the connection do so out of a real lack of experience with this type of illness...

It helps to have seen and worked with children who present with sudden-onset neuropsych OCD/tics and then see them treated, respond, and subsequently be alright--

 

The doctors that have helped us were both neurologists and both knowledgeable having seen similar issues with illness/inflammation.

 

The "shrugging of the shoulders" stance of the 14 other doctors we saw this past year was questionable at best. Very sad.

[bronxmom2]

Hmmm... a specialist I saw in NJ last week suggested I see a pediatric cardiologist to make sure my son does not have SC/ heart damage...

 

I sort of dismissed the suggestion (I am so sick of specialists and sheepish about dragging what appears to be a very healthy kid to all these appointments)... and just kept trying to see if I could get him to offer IVIG or at least prednisone... but maybe I should do it.

 

So far all my appointments have been fruitless.

 

I'm happy for you, though, mom md!

[boychildsmom]

" Interestingly, our MD has said SC, RF and PANDAS are the same condition."

 

 

"This is the second time I have read this recently...it is confusing and concerning to me. The actual same condition????...or the same mechanism? I understand if it is the same mechanism...but the actual same condition? I don't get it....perhaps you can clear it up for me."

 

 

I'm not a medical professional, so perhaps someone else can clear it up--or has an entirely different view from their doctors.

 

That's correct. I've been told repeatedly by moe than one of our son's doctors that SC, PANDAS & RF are the same condition and mechanism. They are an autoimmune response to GABHS bacteria. My DS was diagnosed SC, but met RF Jones and PANDAS criteria. Early on, he could have qualified for tourette syndrome and OCD diagnoses, too. Go figure.

 

Risks of heart and kidney complications concern us. We were told upfront by the MD and cardiologist that his neuro problem did not preclude future heart/kidney complications with recurrent GABHS. I've since read RF research showing increased risk of heart valve damage with each recurrence in children previously diagnosed with an autoimmune response to GABHS.

 

I've read studies and research reviews concluding that they are all separate diagnoses. Yet, I've never found actual research to support those conclusions. I'd like to, if anyone can lob out links. I've collected papers and spoken to researchers--and gotten the same basic response when asking the difference between SC, RF and pandas. Other than RF typically being diagnosed with confirmed heart complications, I've not received a clinical answer. I have heard a few smart aleck comments. One doctor said the heart association is pushing to have SC cases reclassified PANDAS, and only those with confirmed heart complications diagnosed SC/RF. Go figure!

 

Until there is definitive clinical research, I'm inclined to err on the side of caution. Our families have histories of RF and heart problems. My son has had several cardiology exams. Blood work monitors kidney function.

[EAMom]

This paper has some info. on SC vs. PANDAS http://jcn.sagepub.com/cgi/content/abstract/21/9/727

 

I have the full text but it is in a PDF and would be difficult to post (long). If anybody wants me to e-mail it to them you can just PM me your e-mail address. I think I might have sent it to colleenrn and some others a while back.

[mom md]

I can't type a long reply tonight because I need to go to bed (I am on call tomorrow night) but we did do an echo and saw a pediatric cardiologist to check his heart. 60% of SC patients have cardiac involovement so they thought he should do it. I do not inderstand the difference between SC and PANDAS, especially if the child has chorea movements. I have watched video and I still can't figure it out. My thoughts are they are a spectrum of the same disease. I think anytime you deal with the brain you get a mixed bag of tricks. I appreciate the link to that article. I would love the full text article if you don't mind. My email is dillonandclaire@carolina.rr.com. When I asked Dr. Latimer why she thought it was a toss up between SC and PANDAS she said not all SC patients recover after 2 years and he has chorea. I admit I am still very confused but thankful she thinks PEX will cure him. She did warn about a relapse but at least I know we can do IVIG or PEX if needed and not have to jump through a million different hoops to get it next time. I may e-mail Leckman and see if he can explain it. We did mail off Carter's blood to Cunningham's study so maybe that will help. I e-mail my pediatric ID friend to get some antibiotic questions answered and I will pass on what I find.

 

Thanks again for everyone's concern and support.

[mom md]

PEX has less risk of blood infections (never been a case report) because it is just albumin being transfused, as opposed to IVIG which is pooled antibody. PEX is more invasive though, it requires a central line and a PICU stay for 3-4 days. We checked the titers before we decided on PEX just to see if the azith had brought the titers down because he was still having so many symptoms. The nice thing about the PEX is we can check his levels through the process and make sure they get cleared.

[P_Mom]

See, but that is where I get confused.

 

Why would Dr. Latimer say it is a toss up between SC and PANDAS if they were the same condition??? What is the toss up?

 

Are you positive she just didn't mean same mechanism?

 

Dr.K has told us he has not seen cardiac involvement in PANDAS....and 60% of SC kids have cardiac involvement?

Then 60% of PANDAS kids would have cardiac involvement.

 

Well, I guess I'll just have to add a cardiac check on my list now.

 

 

 

(neither of my boys ever showed any signs of Rheumatic fever)

[boychildsmom]

"Dr.K has told us he has not seen cardiac involvement in PANDAS....and 60% of SC kids have cardiac involvement?

Then 60% of PANDAS kids would have cardiac involvement."

 

 

But a significant number (40%) of SC (/PANDAS?) kids would not have cardiac involvement. I contacted Dr. K about IVIG, but didn't inquire about preparations. Do you know if he requires cardiac work-ups in advance of treatment?

[boychildsmom]

PEX has less risk of blood infections (never been a case report) because it is just albumin being transfused, as opposed to IVIG which is pooled antibody. PEX is more invasive though, it requires a central line and a PICU stay for 3-4 days. We checked the titers before we decided on PEX just to see if the azith had brought the titers down because he was still having so many symptoms. The nice thing about the PEX is we can check his levels through the process and make sure they get cleared.

 

 

PEX might be worth revisiting in the future. That's terrific being able to check titer levels during the procedure. Thanks for the response. All the best to your son.

[P_Mom]

I personally don't think that 40% of PANDAS kids (SC?) not having cardiac involvement is significant...that would mean out of the 50 or so cases we have submitted to Diana....30 of our kids would have heart involvement......20 would not.... that means chances are better than not.

 

dr.K did not require heart work-ups for my kids....he didn't see the need...I did ask. He did however mentioning checking a kid that was flying in from Japan later that day for heart involvement because it was believed this child had RF/SC......but he wasn't convinced.

[boychildsmom]

"I personally don't think that 40% of PANDAS kids (SC?) not having cardiac involvement is significant..."

 

Me neither. SC, PANDAS, transient tic, OCD and TS diagnoses are assigned and can be reassigned interchangeably, with little regard for labs or cardiac checks, the actual balance could be 2% or 80%. There's no accurate count of those affected, much less accurate predictions of cardiac involvement. Research on SC/RF populations shows higher incidence of heart involvement with GABHs recurrences. I'd rather be proven wrong by a cardiologist than be wrong assuming his heart is fine.

 

 

"dr.K did not require heart work-ups for my kids....he didn't see the need...I did ask."

 

I respect Dr. K's approach to treating SC/PANDAS. Your comment would indicate he doesn't know the incidence of heart involvement. It'd be helpful to know, but mandatory heart exams would be a cost deterrent to some patients who need IVIG.

[ShaesMom]

My dd6 had an EKG and Echo done two weeks ago. They were ordered by the Ped Rheumy because he heard a heart murmur that was not there three weeks prior when we saw our regular doctor. Luckily for us this is why is prescribed the year long abx. The tests came back normal but I find it interesting that she has a new murmur and wonder if we wouldn't have been so quick to act if it might not have turned into something more serious. She also had blood work done to test her kidney function which was normal.

 

While I'm not a doctor I am college educated and even I can figure out that RF, SC & Pandas are all related if not the same disease. My dd has not developed any major tics but if I recall correctly the major symptom of SC is uncontrollable movements--is that not what a tic is??? the following article is not an official medical paper but it defines SC as "choreic movements and emotional or behavioral disturbances." It goes on to list many of the symptoms our Pandas kids are experiencing. So why is the medical community so slow to come on board??

 

http://www.mdvu.org/library/disease/sydenhams/syd_sym.asp

[dcmom]

Although both neurologists that I have seen, knowledgeable in pandas, have not seen any patients with cardiac involvement- the one did recommend a check. (she did say though, that her bar for recommending a cardio screeen was very low).

 

I was already planning on making these appts, and did have both daughters (only one is pandas) checked. They both had workups by a really nice ped cardiologist, and came up normal.

 

Pandas is a tough thing to deal with as a parent, between the ignorant docs, and the changeable symptoms, that it is a relief to get a concrete answer on something, and check it off your list. I too, am tired of dr appts., and did feel a little funny bringing two fairly vibrant kids to see a cardio. But insurance covered it, he was very kind, it was painless and relatively quick, and now I have peace of mind in that area...

 

now on to the T&A in two weeks....

[colleenrn]

DCmom-

Did they do an EKG and an echo? I have wanted to have my kids checked for a while, so my goal is to do it this month since they will be out of school soon. Do you think most insurance companies will pay for it under the long history of strep b/c PANDAS has no diagnostic code. Or maybe if the physician who gives mne the consult order could put rheumatic chorea?

Colleen

[dcmom]

Colleen,

 

The dr did do an ekg and an echo.

 

To be honest, I didn't even check with the insurance co. We don't need referrals, so I just set up the appt for both (one with pandas, and the other just to be on the safe side- she has had quite a bit of strep). I just checked online, and they paid it (whew!). The charge was around $1000 for each ( but we only paid the copay).

 

The good part is it didn't take long, and the kids were interested in it- so it wasn't as much of a drag as usual. And I am happy to have another concern checked off the long list...