adhesion, colonization, invasion and infection

[Buster]

So what do you think of all this? Am I barking up the wrong tree, or it possible there is more than one tree to climb?....... then give me a bottom line too.

 

Hi Faith,

 

I'm not sure what to say... there seems to be three camps:

 

1) PANDAS -- exacerbations of OCD and tics are related to auto-immune problem where an antibody is initially created in response to a GABHS infection. Unlike SC, the antibody does not appear to interfere with joints or heart muscle but rather interferes with neuronal tissue if there is a breach in the blood brain barrier.

 

2) chronic tic disorder -- probably isn't this since you have said there is a vocal tic.

 

3) Tourette Syndrome -- motor and vocal tic for > 12 m with no remission for > 3 months

 

4) TS/OCD -- Tourette Syndrome with comorbid OCD or Obsessive/Compulsive Symptoms

 

5) PANDAS triggered TS/OCD -- Tourette Syndrome that has a temporal association with GABHS (huge debate)

 

Seems like your child falls into the 3, 4 or 5 category. Now #5 has huge amount of debate with Singer being on one side and a number of others being on the other. The key question is whether PANDAS left untreated becomes #4 or #5. This sure has a bunch of researchers having conflicting results.

 

Kivan in her 2006 study indicated that controls with classic tics had lower CaM Kinase II activation and low anti-lysogangliosides and were distinguished from kids with Sydenham Chorea or PANDAS who had high anti-lysogangliosides and high CaM Kinase II.

 

The key question is that if symptoms don't seem to improve on antibiotics and don't seem to get worse with GABHS infection are they unrelated to GABHS or are the antibodies so intense that a temporary addition of GABHS or relief from GABHS doesn't change the impact on the basal ganglia. Singer seems to be set to prove #5 doesn't exist, but unfortunately he keeps making comments about #1 (even if he doesn't study those kids).

 

So if you are barking at trees... Probably the big item is to look at 4 and 5 and decide how you treat the symptoms while you look for a cause.

 

In #5, prophylatic antibiotics should help prevent subsequent infection -- but keeping up the prophylaxis is difficult. One missed dose and your child is not protected for 3 more days.

 

In #4, the OCD is usually not debilitating (at least from what I read), so treatment for tics seems what most choose.

 

I'd then get the Kirvan blood test just to get some clue whether #4 or #5.

 

Hope that helps,

 

Buster

[memom]

Thanks for posting Ellie...what an amazing story.

 

It makes sense that treated PANDAS would tend to resolve after puberty, but untreated PANDAS (esp. with strep hiding out in the body) would not.

 

Have you considered increasing the augmentin (even for a couple of weeks) even higher, to see if you dd does even better?

 

Are you thinking of doing Plasmapheresis or IVIG?

 

 

Absolutely. I thought I'd give it a few weeks as she is on 50mg Prednisone daily and 1000 mg Augmentin (500 twice daily at 125lbs) along with SSRI's (was up to 250mg Zoloft daily with not much effect, now weaning). If the response is less than great, I will consider increasing to 875-1000mg twice daily for a few weeks to a month. I have already considered PEX and IVIG but wanted to see what a month of steriods and antibiotics would give us first. No one has ever placed this poor kid on antibiotics as part of her treatment except to treat infections (and I never saw much of an improvement in her symptoms with 10 days of Amoxicillin). We are open to PEX or IVIG if needed. I need to get her back to normal so she might be able to go to college next year. Her cognitive functioning is just returning but never fast enough.

 

Not a lot of resources here in Maine. Thank goodness for this board and all your knowledge. You've helped me have the courage and anger to get the help dd needs.

 

Ellie

[memom]

okay, thanks ellie, .... she hasn't posted in a while, but she had almost the same story, her daughter was 16 and developed a vocal tic and then OCD and some eating issues I think, and she was I think diagnosed PANDAS. eheck out some of her posts, it might give you some insight on how her story went and how she did. the user name is 'emma1'. you could put it thru the search tool at the bottom. just sayin, cause you seem to have alot in common with the age factor.

 

Faith

 

Thanks Faith, I will.

 

Ellie

[faith]

Thanks Buster, it helps, but I have to admit, can't really decide what I want to order...

 

Now I should probably open a thread about symptoms, just not to keep going off on tangents here, but I see how I may have missed alot of signs. but you guys tell me. is this what you guys see:

 

(I've been dealing with a heightened vocal tic that changed in sound and frequency on August 26th to be exact) ... now I don't really know what constitutes an episode, because if my child is in the PANDAS category for any reason (strep A or other) I'm really guessing and leaning towards his baseline getting higher and higher since he is 10 now and we've not been treated and I've seen tics start at 3 1/2. That said, I know my son has these other issues, there is no question, but are they "episodic" or "dramatically increased" at certain times? don't know, when your dealing with a difficult child, it just becomes a way of life. you don't think, "is it better today or was it better last month". it all just blurs.

 

Now right now at this very minute, my son is in the basement alone, freaking and calling me to come back constantly. he had a friend over after school and now that he is gone, its just me and him, dad is still at work. he wanted to go in the basement where his stuff is and there's a tv. he INSISTED for about 20 minutes to try and get me to go down there with him. he would not go down alone. kept saying he wants to spend time with me.. ....I was glued to my laptop upstairs and did not want to go. but he wouldn't stop. so I did. now I had to come back up cause my battery ran out, and he is calling me and calling me to come down...right now as I'm typing this. "mom, come back, right now!" .. btw, when I came upstairs, I found every light on (hall, dining room, kitchen, den) he does this alot, has to put all the lights on, I'm always walking around closing lights. (there he goes again calling, he's getting mad now, lol)..........SEPARATION ANXIETY, right? he's always like this, ...if he doesn't see me and I went upstairs, he calls until I answer and gets upset if I don't right away. he's gotta know where I am.

 

And the irritability.....bad in the mornings, if something I say or do irritates him, he literally growls and tells me I'm annoying and to stop...........before he was acting dramatic and exaggerating getting annoyed and going while gritting his teeth "mom, I'm gonna hurt you".l... sounds crazy, but its like he's just acting and I laugh and blow him off. When Ellie above stated how her daughter "hid" her ocd, that rings a bell, because my son just does these things and I'm asking him why he can't go downstairs alone or why he put all the lights on or why did he switch my stuff around in the bathroom, he always has an answer .."I want to spend time with you....because I don't want it to be all dark in the house....I like the way the soap looks on this side"......in other words, he's normal, I'm nuts......

 

Are these all signs that I've learned to live with......or have I missed the big picture? I'm afraid I have. How can one little guy have all this, (TS/OCD/ADD/separation anxiety/irritability/sensory issues) .........sheesh.

 

Faith

[EAMom]

Yay Worried Dad!!!!

 

Buster.....your explanation makes perfect sense!

 

1) you can't assume PANDAS kids have a "normal" immune system against strep...that's what got them into in the first place! That doesn't necessarily mean they are immunodeficient in general (although some may be) but, GABHS at least, is a problem.

 

2) thus, you can't assume a "traditional" course (length or dose) of antibiotics will take care of the strep

 

3) if strep continues to hide out in the body (even in small amounts), that is enough to trigger the inappropriate immune response that results in the PANDAS symptoms

 

4) if strep continues to hide out in the body, that might also be a cause of failure of IVIG (or PEX), ie the 20% that don't respond, or those that don't respond fully...just as a few of Swedo's kids needed a 2nd IVIG or PEX after they were re-exposed to strep in her 1999 study, having constant strep in the body might be a cause of failure of IVIG/pex to work in the first place.

 

So...IMO to optimally treat PANDAS, you really need a combination of high enough doses of a strong enough antibiotic (to take out the strep) in combination with IVIG or PEX to reset/retrain the immune system and you then need to avoid strep exposure (or infection) for a certain period of time (how long this is I don't know) after IVIG/pex, or PANDAS can be re-triggered.

 

A bit off topic...

And this begs the question....in the Tourettes Study (average age 29 years, so these weren't even kids) of unselected (meaning non-pandas) individuals with tics....where it was found that IVIG did not help tics. Would the results of the study have been any different if high doses of long term antibiotics were given in conjunction with the IVIG??? (They weren't on any antibiotics and I don't believe any cultures were done.) http://www.ncbi.nlm.nih.gov/pubmed/15119917 It is also interesting to note that OCD did (temporarily) decrease in this study.

 

Really, if they were to try to compare to Swedo's PANDAS IVIG/pex study they should have used CHILDREN (ages comprable to Swedos) and they should have kept them on prophylactic antibiotic afterwards (like Swedo did).

 

This is from the tic (non-pandas) IVIG study:

 

We observed no significant differences between both treatment groups regarding posttreatment changes in tic severity. Severity of obsessions and compulsions, which was in the subclinical range, decreased significantly in the IVIG group compared with the placebo group at week 6 (p =.02). Then, there was a 32.3% improvement in the IVIG group compared with baseline. Though this improvement was maintained over the following 8 weeks, no statistically significant differences between the IVIG and the placebo group with regard to improvements in obsessions and compulsions were detected at subsequent assessments

[EAMom]

Faith...let us know what your Cunningham results are...I think that will answer a lot of your questions!

[faith]

yes, EAmom, I agree.

 

I think that conclusion is very telling. in other words, it looked like it started off hopeful, but then fell off. not surprising considering what we are learning here with regards to the abx. you learn from failures as well as successes. the failures can prove or disprove something too.

[KeithandElizabeth]

Hello:

 

Here is an interesting article about how Berberine Sulfate, a supplement, blocks adherence of strep.

 

http://www.pubmedcentral.nih.gov/articlere...gi?artid=175870

 

This is an ingredient in our probiotic supplement.

 

Elizabeth

[sf_mom]

What probiotic are supplement are you using? Thanks for the article.

 

Hello:

 

Here is an interesting article about how Berberine Sulfate, a supplement, blocks adherence of strep.

 

http://www.pubmedcentral.nih.gov/articlere...gi?artid=175870

 

This is an ingredient in our probiotic supplement.

 

Elizabeth

[Megs_Mom]

Hi Worrieddad - I am just overjoyed to read your post. Between you and Pixiesmom, those are the 2 cases on this forum that concerned me the most - and to ready of the early hope you are seeing - it gives me great hope for the future. All my best to you and your family - and thanks so much for sharing.

[Worried_Dad]

Thank you so much! Can't tell you how badly I've wanted to be able to post something positive, to provide some hope for others... just as others' shared good news has lifted our spirits in the past.

 

I'm still paranoid about jinxing things, since we've had so many setbacks in the past 2+ years. But the last 2 weeks have given us reason for renewed optimism (when we really needed it).

 

Here's hoping we can all celebrate success for our children soon... and that "Saving Sammy" and our kids' experiences can finally tip the scales so that the medical community accepts the reality of PANDAS. Children and families should not have to endure this trauma with the added stress of endlessly searching for doctors willing or able to help!

 

 

Hi Worrieddad - I am just overjoyed to read your post. Between you and Pixiesmom, those are the 2 cases on this forum that concerned me the most - and to ready of the early hope you are seeing - it gives me great hope for the future. All my best to you and your family - and thanks so much for sharing.