Appointment Today

[familyof4]

Today we saw a local Denver doctor who has done IVIG for a couple of folks on the forum. He is not a neurologist but has taken a special interest in PANDAS. It did not go near as well as I would hoped nor did I feel he was as educated on PANDAS as I thought he was.

 

He agrees that something is going on with my son (6) but is not sure we have enough data to say it is PANDAS. He has low to non existant titers. He has had four distinct episodes over 2 years - the first one with sudden onset of tics and rages nobody tested for strep, the second episode which included extreme urinary frequency he was negative for strep but I was positive for strep, his third episode the rapid was negative - culture grew out a different strain of strep than normal but within 5 days on antibiotics he was back to himself, fourth episode was strep positive on the rapid and started with extreme separation anxiety.

 

He has not returned to baseline since this 4th episode in September - he was hit with H1N1 and a nasty throat virus back to back and has multiple tics, obsessions, etc. I think he has a strep carrier in his class at school as he improved immensely while on vacation but was worse again by the 3rd day back at school. I hate to see him live this way and want to treat more agressively.

 

I was told today that since he doesn't culture positive for strep in his throat and his titers are low that antibiotics would not do him any good. That he doesn't have strep so strep isn't causing his current symptoms. (Couldn't he still be battling strep in his sinuses or elsewhere?)

 

Advil works well with my son but when I questioned about the steriods I was told that the steriods work because of what they do to the antibodies not because they have anti-inflammatory properties.

 

I was also told that 1 IVIG typically will "fix" a confirmed PANDAS kid and that data does not support prophalatic antibiotic use either before or after IVIG. It isn't necessary.

 

I was hoping for 30 days of antibiotics to see if it would help my son. What I got was 5 days of zith (1st day at 250mg, day 2-5 at 125mg - wait 5 days and repeat.) From what I've read on this forum I do not think this is a high enough dose (He is 47lbs). I am worried that if we try this and don't see improvement his doctors will throw PANDAS out the window for good and all I will be left with is SSRI's.

 

Do I try this or hold out for a stronger dose of antibiotics?

[dut]

Hi - Are you in a position to be able to do a telephone consult with any of the "big name" drs eg Drs Trifiletti, Latimer or Kovacevic?

 

Perhaps, if one of them is on board you may get better results from your dr if they can consult together. Our dd6 never had a positive strep test or raised titers but based on a clinical picture of sudden onset and good response to abx (1 time at least) Dr. T felt it was indeed PANDAS (although he felt we may want to conclusively rule out Lyme and mycoplasma pneumoniae with testing).

 

 

And, in my opinion, your dr is talking rubbish about the abx and the steroids. Our dd with the non existent titers responded beautifully to steroids. From a quick ramping episode (also after a likely H1N1 flu or very similar flu-like illness) to no symptoms in 5 days flat. And is still holding 6 weeks later. I feel for our dd that her blood brain barrier was weakened and steroids shored it up which is the anti-infammatory effect.

 

I'd take the zith (anything's better than nothing) but be actively seeking more.....

[familyof4]

Thanks for your reply - I guess I just need some reassurance that we are still heading down the right path. We are talking about taking a trip east over spring break to see one of the other docs. Based on the outline he posted and my son's "non-standard" presentation it's looking more like Dr T. might be the one to see. I just don't understand why so many doctors want to dismiss PANDAS so easily and not even consider it. My pediatrician is open to the idea that it is PANDAS but she does not want to be the one to treat it.

[Suzan]

I was told today that since he doesn't culture positive for strep in his throat and his titers are low that antibiotics would not do him any good. That he doesn't have strep so strep isn't causing his current symptoms. (Couldn't he still be battling strep in his sinuses or elsewhere?)

 

Do I try this or hold out for a stronger dose of antibiotics?

 

My daughters rarely test positive for strep in their throats and they have low titers and they are antibiotic dependent right now! Man, this type of response from doc's does get my blood pumping. I would do what you can to get another opinion and find some long term antiboitics. Sounds to me like you are on the right track and need it!

 

Susan

[thereishope]

I agree. He doesn't sound like he understands the complexity of strep or the disorder. Where did you stand with your regular ped? If you can it would probably be good if you can go to /speak to an expert. Have you asked your doctor if they would accept the directions from an expert?

[EAMom]

H1N1 was a big non-strep trigger for our PANDAS dd.

 

I would recommend getting bloodwork run by Dr. Cunningham (Univ. of Oklahoma).

 

Here is a good thread to read FAQ http://www.latitudes.org/forums/index.php?showtopic=5023

 

Your son definitely sounds like PANDAS. Lots of PANDAS kids have low strep titers (mine did, even in the face of positive cultures and pandas symptoms severe enough to require hospitalization).

 

My dd had IVIG in Aug. 09 and we plan on continuing prophylactic abs ( currently we're on daily azith) until at least 18 years of age. She is is 9.5 years now.

 

I was also told that 1 IVIG typically will "fix" a confirmed PANDAS kid and that data does not support prophalatic antibiotic use either before or after IVIG. It isn't necessary.

 

Some kids need more than 1 IVIG. Prophylactic abs (often full-strength) both before and after IVIG are manditory IMO. If you don't follow IVIG with abs, you risk losing any gains with the next strep infection (back to square one so to speak). I would also recommend a complete immune work-up. Some kids have immune issues and need more than just 1 IVIG (and insurance will cover if there is a PID diagnosis).

 

By the way, after you consult with a PANDAS doc (eg. Trifiletti, Dr. K. etc) you may be able to have IVIG done in Co. (if that is what you end up needing). This doc (Dr. Smith) has treated a couple of kids on this forum http://www.latitudes.org/forums/index.php?...amp;#entry49367 in Co.

 

You might also contact KeithandElizabeth (private msg) http://www.latitudes.org/forums/index.php?showuser=4044 ....I don't know if they live in Co.?

[EAMom]

(Couldn't he still be battling strep in his sinuses or elsewhere?)

 

Absolutely!!

[Worried_Dad]

I was also told that 1 IVIG typically will "fix" a confirmed PANDAS kid and that data does not support prophalatic antibiotic use either before or after IVIG. It isn't necessary.

 

Wow - with all due respect to your doc, this is just rubbish! My son was initially recovering while on standard amoxil prophylactic dose, and then we were likewise advised that "the data didn't support prophylactic abx use" and discontinued it. Within a month and a half, our son spiraled downhill and had his worst exacerbation ever to that point. Then we did IVIG with Dr. K (who warned us that a 2nd round might very well be required, given our son's age and symptom severity). For 2-3 months, our son made great progress and we thought we were out of the woods... then he caught another strep infection or the strep resurged (confirmed via elevated ASO titer) even while on a "standard" prophylactic dose of augmentin (500 mg daily). That led to an even worse exacerbation, complete nightmare for our son and the entire family.

 

We did 2 more rounds of full-dose IVIG with Dr. K, and that led to minor improvement, but things were pretty grim until we started high-dose augmentin XR (2000 mg daily). Since that time, our son has made steady, dramatic progress, and now he's in the best shape (80+% of baseline) he's been in for 3 years.

 

So - for us - IVIG without high-dose abx was a short-term, partial fix at best. Even a "normal" prophylactic dose of augmentin didn't protect our son from relapse. We had to up the ante to the "Saving Sammy" dose of XR to see real improvement!

 

Your doc may mean well... but if the "PANDAS hypothesis" is correct, then exposing a child to potential strep infections after IVIG is like playing Russian roulette. For rheumatic fever (on the same spectrum as PANDAS - and our son's original diagnosis), the "prevailing medical wisdom" is to keep the child on abx until age 18 or more, because of the risk of further heart damage from subsequent strep infections. So brain damage isn't as much of a concern?!?

 

I just really, really don't understand this line of reasoning from doctors.

[sf_mom]

Worried Dad could not have said it better!!!!!

 

Our son has had three IVIG treatments with Dr. K and on a high dose antibiotics and it is working. The current thinking of last week... is there is too much emphasis on auto-immune and not enough on underlying infection. It drives me crazy..... all a Dr. would have to do is spend five minutes reading up on the s. pyogenes to figure out how resilient, immune suppressing the bacteria can be especially in a younger child without a fully developed immune system at time of original exposure.

 

See attached:http://www.tjclarkinc.com/bacterial_diseases/streptococcus_pyogenes.htm

 

 

-Wendy