How many episodes to expect?

[momwithtwins]

Hi,

 

My 4 year old son has been diagnosed with PANDAS by 1 specialist. After a brief period on antibiotics his symptoms (tic and behavioral changes) have gotten substantially better. My question is: He's only had 1 episode, how likely is it that it won't return? And do we continue moving forward and seeing other specialists if he's only had it this 1 time?

 

He has only had his titers checked (no results yet) no other tests have been done.

 

appreciate any feedback!

 

darlene

[Phasmid]

Hi Darlene,

 

I'm sure the consensus will be, "It depends on the child." My son had his first in 2003. It went away on its own. One year later, he had his second. That episode took about four months to remiss. He had a relapse in 2009, which was treated successfully with antibiotics. I count three major episodes, where there were vocal tics, neurological signs, motor tics, and horrible behavior symptoms. That being said, what I didn't realize was that the other symptoms and behaviors that were present BETWEEN these major episodes were related to PANDAS/PITAND. My son has documented strep infections with complications, but no elevated titers. He has elevated titers to Mycoplasma pneumoniae. Anyway, during the time I thought he was "cured" we were dealing with horrendous problems with academic functioning, social problems, obsessions, compulsions, etc. Only recently have we come to recognize these as part of the syndrome. So, as you can see, kinda hard to give a discreet number of relapse episodes. I can say that treating early and often with exposures is best.

 

 

[peglem]

How wonderful that you caught it so early and got treatment quickly! There do not seem to be any hard and fast rules or guarentees w/ this disorder. I think there are those who have fully recovered after one episode, but most here have had multiple episodes. But, the single episoders probably are not here- just busy enjoying life.

[SarahJane]

Congratulations that you got a dr to diagnose PANDAS. Knowing what you're dealing with is half of it. But I read your note to say that he's substantially better, so that must mean that some residual issues still likely exist.

 

I'm with Phasmid that "it depends on the child." My ds(6) has had major exacerbations with his two cases of dx'd strep (Dec '09 & Sept '10...we just did IVIG last month). BUT once we knew PANDAS existed, we went back thru the medical records & sure enough there were infections, illnesses, &/or shots that coincided with most major behavioral issues we could remember since he was 2.5, & they rarely test toddlers for strep--they'll say kids don't even get it until they're in school or something like that. We thought his episodes were growth spurts but very likely it was PANDAS in at least some (if not all) cases. With more knowledge now, we also realize that some things that were always present in between were probably PANDAS too. Once you know more about the disorder, you may also see some earlier stuff that could've been PANDAS but was explained by "age" or a phase. You didn't mention if your son is on the spectrum, so I'm guessing he's not, but early onset can look like autism just in case that question has ever surfaced.

 

EARLY treatment is good tho'. So your question was whether you should go ahead & seek specialists...my answer would be yes. Let the experts tell you if you should treat now & how to go about it. I can say that in my ds's case, the 2nd exacerbation this fall was much worse than the first one last winter (we were undx'd until Oct) & I lost treatment time trying to get the dx.

[thereishope]

You can play a role in increasing the chance of no return. Make sure no one in the house has strep, if anyone has strep, do a follow up 3 weeks after finishing all antibiotics. When you go to popular kid places like McDonald's playland or Chuck E Cheese, bring some hand wipes to use after leaving the establishment and wash hands before eating if the kids' play before getting their food or don't let your kids play there (McDonald's playland rarely gets cleaned). Even though over time you may feel you are in the clear, keep watchful. Respect his body by keeping up with vitamins, perhaps Omega 3's, and if continue with vaccinations (not starting a debate about this) only do so when the child is completely healthy and space them out. If you choose not to vaccinate, that is up to you too. I'll give my opinion on this, if asked. If you haven't done so already, adjust his diet to eliminate things like dyes, chemicals, etc.I also suggest keeping up on here now and then so you stay in the swing of things. It's harder to play catch up if things should go wrong again.

 

Let's hope and pray he never gets sick again!

Edited December 1, 2010 by Vickie

[momwithtwins]

Ladies

 

Thank you so much for your quick feedback. We were lucky to catch it early (only because my husband is in the medical field and happen to mention the tic to a collague who suggested a strep test..which came back positive) I have twins, so the behavioral issues have been the hardest. So, much of what he does can seem like a "phase" but it is exaggerated. He has meltdowns if you look at him the wrong way!

 

I'm in NY, so if anyone has any recommendations on docs, I'd love to here.

 

Also, how do you know the type of specialist that's best to see? We've seen the psychiatrist (not very helpful) and the next on our list is the CT immunologist.

 

thanks again ladies.

 

PS- my son did have a flu shot 3 weeks prior to his diagnosis. don't know if there's a corrolation.

[thereishope]

Unfortunately, yours isn't the only one It could be he had asymptomatic strep and that vaccine set his immune system over the top. Not saying that is the case, but it is a possibility.

 

 

PS- my son did have a flu shot 3 weeks prior to his diagnosis. don't know if there's a corrolation.

Edited December 1, 2010 by Vickie

[nicklemama]

There might be a correlation. My DS6 had his first major episode after the FluMist vax last Oct. He began his deterioration two days later. He recovered from it w/out treatment in about 6 wks. We did not realize he had PANDAS at that time. His next episode started in Mar 10. He never recovered from it until we consulted w/ Dr T in Oct. He's so much better now its unbelievable. However, we know what we are up against, he's still not 100% and know he will probably have future episodes too.

 

Cindy

[KaraM]

I agree with the recommendation to see a specialist. We see Dr. B in Stamford/Darien, CT - right outside of NY. (Is that the CT immunologist you are referring to?) If it's reasonable for you to get to him, then I think you should (we travel 4 hours from MA).

 

Our daughter is on prophylactic antibiotics - he wants her on them for a year. We caught relatively quickly, too. She may have had an earlier exacerbation at some point, but nothing like the one last year that brought us to the realization (about a year ago) she had OCD.

 

She is doing very well now - averaging about 95% back to normal. Dr. B said he thought this response was because we caught it relatively quickly (she started the abx treatment about 6 months after symptom onset).

 

I guess my thought is that it may be appropriate for you child to continue treatment prophylactically instead of a short term course of abx. If you see an expert, you should be able to get the best advice for your child on how to keep PANDAS at bay.

 

Kara

 

I'm in NY, so if anyone has any recommendations on docs, I'd love to here.

 

Also, how do you know the type of specialist that's best to see? We've seen the psychiatrist (not very helpful) and the next on our list is the CT immunologist.