Menningococal Vaccine

[Debbie1]

Patty,

 

I remember my son was doing so well that we decided to reintroduce a little bit of gluten to see what would happen. Within a few hours, he had a head bopping tic that we hadn't seen in ages. We did not give him gluten again.

 

Not that long after (or before - I can't exactly remember), he ate a plum and seemed within minutes to have very frequent hand clapping. No more plums for him.

 

Around the same time, my daughter came home from a month away at sleep away camp. She came down with strep one day later, but my son was never symptomatic.

 

It has been down hill since then. Although we took away the seemingly "trigger foods", we haven't gotten him back to where he was. Seems only like a downward spiral since.

 

I spoke to my pediatrician this morning and asked about a throat culture. To my surprise, he actually knows what PANDAS is and said there is sometimes a correlation between strep and tics although not usually in what seem to be chronic cases. He agreed to do a throat culture later today. If it is negative, he said he would do the overnight. I asked about a 48 hour test and he said - not necessary. If strep is growing, he will see it with the 24 hr.

 

What else should I ask him? Am I supposed to ask him about blood work for elevated antibodies? I have read a little about that here, but never thought it applied to our case, so I am not on top of the info. If anyone can give me guidance, it would be much appreciated. Our appointment is at 2:30 Eastern time.

 

Thank you everyone.

[P_Mom]

Debbie,

Since your daughter had strep around the same time this onset occurred....I feel it is a great thing you are getting the culture done. Many, many, kids with PANDAS are asymptomatic for strep...my son was. INSIST on the culture being grown for atleast 48 hours, if the swab is negative....some literature suggests 72 hours, but, insist on atleast 48, my son had strep and it did not show up until almost 48 hours of the culture, swab was negative and he had NO symptoms..........even if the doc gives you a hard time..just ask him to please do it for you. Also, mere exposure to strep can cause an increase of symptoms...culture may be negative...while you are there, please ask them to run an ASO and antiDNAase B titer....just request it regardless of what they say...I find docs really don't have a clue about this stuff and us parents have to advocate for our kids. Nothing you are asking for today is a big deal and should be no problem, the time is now because of the flair. Also, like I said in my previous post...if everything comes up negative.. I would still highly suggest you try a simple round of antibiotics to see if things change....my son had a big flair while sick with a viral, and antibiotics made things practically disappear within a day, sometimes our kids are exposed to viruses/bacterias and we NEVER know it...their bodies fight it off before showing any physical symptoms, but, their immune systems get activated anyway and with PANDAS kids, their "symptoms" of being exposed to something are tics/behaviors/ocd/etc.

 

Please keep us posted.

 

Kelly

[EAMom]

Ditto everything P. Mom said. My dd's throat culture was started 3/22 and growth wasn't reported until 3/25 so I assume it took 48-72 hours. Even then growth was "rare". I think in the traditional cases of active acute pharyngitis/strep throat (red symptomatic sore throat, strep actively replicating) the culture will grow and show up faster and perhaps 24 hours may be adequate. In cases where smaller amounts of strep (perhaps not causing pharyngitis symptoms/carrier state) are hiding out (intracellular?) and not actively replicating IMO you need 48-72 hours.

 

In light of the history of this flareup starting after sister got strep.... I agree that an antibiotic trial is an extremely reasonable thing to try. There are several strains of strep which are anaerobic (I hope I spelled that right...means lives without oxygen) and these strains are much more difficult to culture. In other words, a neg. culture does not 100% mean there is no strep.

 

Also, I would recheck sisters throat culture to make sure she is currently neg. (any other siblings? check for carriers)

 

I think it is good to do the titers but please take them with a grain of salt if low. My PANDAS daughter's titers were *normal* despite being completely wigged out with PANDAS (ocd, anorexia nervosa, social anxiety, tics, contamination fears...). She had FEVER (not cultured at the time, but other kids in class out with strep at same time) the 3rd week of Jan. Her behavior changed 1/2 hour before I realized she had FEVER (behavior was fine earlier in day at school.) She cultured positive *2 mo.* later (as did her asymptomatic sister). 3/21 her titers were "normal" (ASO 31, Anti-Dnase 149). 4/29 she was still severely symptomatic (and on amoxicillin) and her titers were even lower (ASO 28.1. Anti-Dnase <60). In other words, please, please do not let your doc declare the strep is not a problem soley on the basis of low titers. Some kids do not make a lot of titers. Some kids have a low baseline so even if there titers go up it is still within "normal" range. Some kids have titers that drop off rapidly so if a couple of months have passed, you have missed rise and they have already fallen to normal range.

 

Good luck. Please don't be afraid to put your foot down with you doc if necessary. Our kids really need us to advocate for them. Most docs are painfully misinformed about the finer details of strep, titers, and PANDAS (even when they claim to "know all about PANDAS" as our ped did...she was actually pretty clueless).

[P_Mom]

EA Mom,

Yes, I agree about the titers, thanks for mentioning it. Neither of my boys ever tested high either..yet, they are both classic PANDAS. When docs and parents get stuck on the titer/PANDAS connection, it really is unfortunate. It clearly stated in the NIMH study that atleast half of the kids in the PANDAS study, who were diagnosed PANDAS, had NEGATIVE titers while in the study, yet they were very ill and responded to immonumodulatory therapy. The medical community is grossly informed about PANDAS...many docs haven't even heard of it, many have heard of it but don't have a clue on how to treat it...yet they will tell us no high titers equlas no PANDAS?? I don't get it. This is a "recent discovery', (IMO it has been around forever in the form of TS, OCD, ADHD, etc), so,I do not think any doc can be so definitive about how this disorder presents, they/we are all still learning. Even in the diagnostic criteria for PANDAS, it is NOT mentioned that patients need to have high strep titers! I just mentioned to Debbie to get it done because IN SOME CASES, they can help provide answers. But, definitely, yes, Debbie...don't rule out PANDAS based on the titer results.

 

EA Mom.....

it is funny...our pediatrition clamied to "know all about PANDAS" too. After dealing with this in two boys for a year...it turns out he didn't have a clue, and I am so glad I didn't listen to him and decided to followed my gut and pushed further until I found someone who truly does...dr.K has been a true blessing to us......both my boys are currently doing great, I wonder some days where we would be had I listened to the many docs we saw beforehand who said...."just tics..wait it out"..or, "PANDAS? I don't believe in PANDAS." Our neurologist we saw at a major university hospital told us he did not believe in PANDAS and that he believed based on our family history, that it is most likely my younger son will progress and end up "TS." He offered absolutely no help, no suggestions etc. He just said those words to us and told us to come back in 4 months. We never went back. I wonder what he would say now to know my sons symptoms have been basically kept in remission since being on antibiotics...no major flaris since the horrible month after strep...he has been stable since being treated for PANDAS protocol..thank God for dr.K!! I can't say enough about him. That is what I wonder...where would we be now if we had listened to the "experts?' Would my sons symptoms indeed have progressed to a "TS" diagnosis? Would we be scrambling around with tic meds or SSRI's? Would we be going crazy trying to find their triggers for their symptoms.....when all along all they needed was an antibiotic? Just my experience and opinion.

 

Kelly

[annag]

Yes most colleges require this vaccine before students can attend, due to close living proximity in the dorms.

 

Anna

[EAMom]

Yes, do get the titers. The situation where they are most helpful is when your child no longer cultures positive (since many kids can fight off the strep even without antibiotics...) and you are looking for some "evidence" that there has been a strep infection in the past few months. If they are high that is pretty good evidence of a past strep infection although not 100% evidence of PANDAS (as many "normal" kids will have high strep titers). Just don't let a doc convince you that it "couldn't be PANDAS" if your titers are low.

 

Unfortunately there is no easy "test for PANDAS"...it's a diagnosis you have to put together by looking at your "clues" such as titers, cultures, exposure/strep in family members (a big clue for you if symptoms started with sister's strep), strep symptoms (unfortunately many PANDAs kids don't exhibit classic strep throat), behavior changes, and response to antibiotics.

 

Don't forget to get a new toothbrush and toothpaste (I don't let my PANDAS daughter share toothpaste with anyone else anymore) a couple of days into antibiotics. Strep can live on toothbrushes for a couple of weeks (?) to re-infect.