Should OCD remit completely?

[dcmom]

My five-year-old had her first (we think) pandas episode starting mid January. She has been on a cephalosporin (14 days), then amoxicillin (14 days) and now zithromax (we are on day 17 of 21 days). These have all been therapeutic doses. While has improved, she still has OCD issues that definately interfere with her daily life. (she can only wear one outfit or pjs, she needs to do excessive wiping after urination, and therefore avoids going to the bathroom, and her appetite and/or taste for foods is terrible). She still has a lot of anxiety surrounding these issues.

 

I am trying to determine if this is still strep, residual brain inflammation that takes time to heal, or a baseline change. Have your kids ever had a pretty complete remission of OCD? If so, how long did it take>

 

I am trying to determine if continuing on a therapeutic dose of zith would be helpful (but of course am concerned about tummy issues). Would a steroid burst at this point be helpful- or is it too late?

 

Thank you!!

[EAMom]

I would say that our dd's ocd was significantly improved after 2 weeks of Azith (started early June 08). She continued to improve with more Azith. By 6 weeks her tics/movements were finally gone...she was about 100% by August 08 (8 weeks). Unfortunately, she started to show some symptoms again since Oct. 08 (with exposure to school/strep in family members/fifth's dz)...she hasn't gone back down to her August 08 level all school year (although nothing full-blown or debilitating like last spring).

 

We also noticed a decline when we backed off on the Azith to 125mg/day (from 250mg...she's 55 pounds). We did notice an improvement when we recently added advil back in (per immunologist's suggestion) and also went back up to 250mg/day.

 

The immunologist didn't rec. a steroid burst for us. He didn't feel it would necessarily reflect her response to IVIG. I think you could really go either way with the burst. But, IMO you could definitely have more to gain by continuing on the Azith.

 

I should also add that we gave Advil with the Azith in June and July...we think that helped dd's recovery.

[michele]

One thing to keep in mind, is that there is a cycle with these PANDAS OCD episodes and they are saw toothed and will wax and wane regardless of antibiotics. I have never used azith but pen vk, augmentin, and now cephalosporin daily. I think the antibiotics are more of a preventative against the strep. I would like to see studies proving Azith is a treatment for the PANDAS. If that happens then Dr.'s would be willing to prescribe it longterm.

 

We have been having the PANDAS cycles for six years about three times per year with my son. Each episode lasts about nine weeks. Eventually the symptoms seem to lessen but never truly go away anymore. He now has mild tics and obsessions kind of like mild Aspergers. We have him seeing a psychiatrist and psychologist and are using meds for the moods and anxiety, OCD. We use Abilify and Celexa now. We have had to up the Abilify significantly over the past year. The Abilify takes an edge off the moods. We are just starting the Celexa. We have never done the steroid burst. It makes me nervous with the tics that it could make them worse. My son's obsessions are internal thoughts about things he likes. We are hoping to see big improvements in the obsessive behaviors and worry. We are getting ready to see a new neuro that specializes in tics and aspergers. Don't know if that will make a diffference in treatment or not. We were not able to find an ADD med that worked for him. However the Celexa should help calm him down.

 

 

I would say that our dd's ocd was significantly improved after 2 weeks of Azith (started early June 08). She continued to improve with more Azith. By 6 weeks her tics/movements were finally gone...she was about 100% by August 08 (8 weeks). Unfortunately, she started to show some symptoms again since Oct. 08 (with exposure to school/strep in family members/fifth's dz)...she hasn't gone back down to her August 08 level all school year (although nothing full-blown or debilitating like last spring).

 

We also noticed a decline when we backed off on the Azith to 125mg/day (from 250mg...she's 55 pounds). We did notice an improvement when we recently added advil back in (per immunologist's suggestion) and also went back up to 250mg/day.

 

The immunologist didn't rec. a steroid burst for us. He didn't feel it would necessarily reflect her response to IVIG. I think you could really go either way with the burst. But, IMO you could definitely have more to gain by continuing on the Azith.

 

I should also add that we gave Advil with the Azith in June and July...we think that helped dd's recovery.

[melanie]

One thing to keep in mind, is that there is a cycle with these PANDAS OCD episodes and they are saw toothed and will wax and wane regardless of antibiotics. I have never used azith but pen vk, augmentin, and now cephalosporin daily. I think the antibiotics are more of a preventative against the strep. I would like to see studies proving Azith is a treatment for the PANDAS. If that happens then Dr.'s would be willing to prescribe it longterm.

 

We have been having the PANDAS cycles for six years about three times per year with my son. Each episode lasts about nine weeks. Eventually the symptoms seem to lessen but never truly go away anymore. He now has mild tics and obsessions kind of like mild Aspergers. We have him seeing a psychiatrist and psychologist and are using meds for the moods and anxiety, OCD. We use Abilify and Celexa now. We have had to up the Abilify significantly over the past year. The Abilify takes an edge off the moods. We are just starting the Celexa. We have never done the steroid burst. It makes me nervous with the tics that it could make them worse. My son's obsessions are internal thoughts about things he likes. We are hoping to see big improvements in the obsessive behaviors and worry. We are getting ready to see a new neuro that specializes in tics and aspergers. Don't know if that will make a diffference in treatment or not. We were not able to find an ADD med that worked for him. However the Celexa should help calm him down.

 

 

I would say that our dd's ocd was significantly improved after 2 weeks of Azith (started early June 08). She continued to improve with more Azith. By 6 weeks her tics/movements were finally gone...she was about 100% by August 08 (8 weeks). Unfortunately, she started to show some symptoms again since Oct. 08 (with exposure to school/strep in family members/fifth's dz)...she hasn't gone back down to her August 08 level all school year (although nothing full-blown or debilitating like last spring).

 

We also noticed a decline when we backed off on the Azith to 125mg/day (from 250mg...she's 55 pounds). We did notice an improvement when we recently added advil back in (per immunologist's suggestion) and also went back up to 250mg/day.

 

The immunologist didn't rec. a steroid burst for us. He didn't feel it would necessarily reflect her response to IVIG. I think you could really go either way with the burst. But, IMO you could definitely have more to gain by continuing on the Azith.

 

I should also add that we gave Advil with the Azith in June and July...we think that helped dd's recovery.

 

 

Why did your MD choose Celexa over Lexapro do u know my MD insisted on Lexapro I thought Celexa was better but why would they listen to me

[dcmom]

Thank you.... it is so hard to figure out what is going on.

 

To those who have done IVIG, have the OCD symptoms completely remitted after that?

 

thanks

[emma1]

Michele, Great to see you are still on this board, but sorry that your son is still having problems. My daughter still has some ocd issues -- they come and go, but have been overall really, really mild and non-disturbing -- and I would love to keep it that way.

 

Re antibiotics: as I wrote on another thread -- our doctor let us stay on zith for about 3 mos, and then insisted on going back to Pen VK. We did, and honestly, I haven't noticed a big change. Now he was to stop the Pen VK though -- and that does indeed have me worried.

 

I get very spoiled when things are "good" and just do not want to rock the boat. Because she is older, the doctor thinks maybe it is over, but I am not that sure as there are still little things that I notice. EA Mom (I think) said that for some, antibiotics are forever -- I had never heard that before, so I am looking into that now.

 

Right now, we are using the PenVK, inositol (for the ocd), mag taurate and b/c/zinc -- and that's it.

 

 

Thank you.... it is so hard to figure out what is going on.

 

To those who have done IVIG, have the OCD symptoms completely remitted after that?

 

thanks

[EAMom]

Hi Emma...

 

well what i actually meant to say is that it isn't known how long these kids need to stay on abs. For ARF (as a point of comparison) they kept upping the age and now they are saying "lifelong". So, I don't think we can assume that a PANDAS child can safely discontinue abs at a certain age (at least I haven't seen any research on this!). I would agree with you that I would be reluctant to stop the abs, say at 18, if at the same time they are going off to college in another state (and living in a dorm, exposed to lots of "bugs") where you won't be able to monitor them! Of course, after the age of 18 or 21 it's not entirely up to the parent what the child does...then the child is an adult and might have some say in the matter!

 

In the DAN! video that Peggysue posted, Swedo did use the change in ARF as an example, and said that it isn't really know how long these kids need to be on abs (if I interepreted that right)...that was in the Q and A section at the end of the presentation.

 

Our immunologist felt we could discontinue abs after as a teen...but I believe this was mere speculation on his part, not based on any real research. (He wasn't actually that well informed about PANDAS so I would take whatever he says with a grain of salt).

 

I just hope that in 10 years (when my dd is 18) there is more known so we can make a better informed decision. For me, I would be inclined to err on the side of caution and continue the abs (esp. if it is something narrow spectrum like Pen).

 

I would be curious to know what happened to the original Swedo kids (who had pex, ivig, or abs) when they got strep (if they did) as older teens, adults (assuming they stopped the abs).

 

I would also feel safer stopping abs as a older teen if my child had had IVIG (vs. just treatment with antibiotics). With no IVIG I would be inclined to continue a little longer. But, like I said, it would be great if there was actually some research on this!!

[michele]

Glad to hear from you. I always wondered how your daughter was. Sorry to say we are still here. You know his symptoms have continued to increase over time. The tourettes and obsessiveness and emotional issues have been more constant.

 

About stopping the Pen VK. Another poster here who is 21 is still on the pen vk since she was 10. Also though she has needed a mood stabilizer, like Prozac. According to her, during her menstral cycle she still gets some symptoms. I really hope your daughter is over the worst of it.

 

All the best.

 

Michele

Michele, Great to see you are still on this board, but sorry that your son is still having problems. My daughter still has some ocd issues -- they come and go, but have been overall really, really mild and non-disturbing -- and I would love to keep it that way.

 

Re antibiotics: as I wrote on another thread -- our doctor let us stay on zith for about 3 mos, and then insisted on going back to Pen VK. We did, and honestly, I haven't noticed a big change. Now he was to stop the Pen VK though -- and that does indeed have me worried.

 

I get very spoiled when things are "good" and just do not want to rock the boat. Because she is older, the doctor thinks maybe it is over, but I am not that sure as there are still little things that I notice. EA Mom (I think) said that for some, antibiotics are forever -- I had never heard that before, so I am looking into that now.

 

Right now, we are using the PenVK, inositol (for the ocd), mag taurate and b/c/zinc -- and that's it.

 

 

Thank you.... it is so hard to figure out what is going on.

 

To those who have done IVIG, have the OCD symptoms completely remitted after that?

 

thanks

[dcmom]

Hi Emma and EA mom,

 

Just thought I would share a few cases that I know:

 

My dd neurologist is very informed regarding pandas. He has a 22 year old patient, that he has seen since she was maybe 9 or 10. She had strep this year, and had a pandas episode with it. He felt she was able to manage it better at this age, but I was disappointed.

 

One woman I have made contact with has a daughter age 16, she was in original NIH study. She had pex twice, and had multiple issues during childhood. She is now 16, and has been symptom free for about 3 years. (Good news!)

 

Another woman I have talked to from the original study, has a daughter who rec'd pex at about age 8. She continued antibiotics until age 16 (she is now 17 or 18 I think) she has been symptom free since the pex.

 

An aquaintance of mine has a son in highschool with pandas. He still struggles with pretty consistent ocd, but is managing with meds and therapy.

 

Based on these (and other stories), it seems there is so much we don't know. It seems cases vary so much. I think we can hope for improvement (or freedom) from symptoms at puberty (with my daughter only be 5- that doen't feel like much reassurance), but we will have to proceed with caution.

 

EAmom- is there something that makes you think IVIG will help in the long term? Do you think (like DR K) that the younger you have it the better? Do you know what the scientific explanation of that is?

[EAMom]

Hi DCmom...that was very informative!

 

My dd neurologist is very informed regarding pandas. He has a 22 year old patient, that he has seen since she was maybe 9 or 10. She had strep this year, and had a pandas episode with it. He felt she was able to manage it better at this age, but I was disappointed.

do you know if this patient had PEX or IVIG?

 

 

One woman I have made contact with has a daughter age 16, she was in original NIH study. She had pex twice, and had multiple issues during childhood. She is now 16, and has been symptom free for about 3 years. (Good news!)

 

Another woman I have talked to from the original study, has a daughter who rec'd pex at about age 8. She continued antibiotics until age 16 (she is now 17 or 18 I think) she has been symptom free since the pex.

 

do we know if these teens had strep since being off abs?

 

An aquaintance of mine has a son in highschool with pandas. He still struggles with pretty consistent ocd, but is managing with meds and therapy.

I wonder how this boy will do into adulthood...do you know if he is on prophylactic abs or just psych. meds?

 

Based on these (and other stories), it seems there is so much we don't know. It seems cases vary so much. I think we can hope for improvement (or freedom) from symptoms at puberty (with my daughter only be 5- that doen't feel like much reassurance), but we will have to proceed with caution.

 

EAmom- is there something that makes you think IVIG will help in the long term? Do you think (like DR K) that the younger you have it the better? Do you know what the scientific explanation of that is?

 

Okay....I think the experts are still working on the exact scientific explanation of why IVIG works. Basically, (in my mind) the (simple layman's explanation) is that the IVIG re-sets/reboots/corrects the immune system, possibly by adding some regulatory t-cells (which may have been deficient in PANDAS kids) or anti-body. Not sure about PEX though...my understanding is that it clears out all the bad anti-bodies.

 

Here is Buster's theories on IVIG/pex (although not recently updated)...scroll down to the bottom 2 sections.

http://www.latitudes.org/forums/index.php?showtopic=3911

 

According to Dr. K, IVIG "cures" PANDAS. I haven't figured out why we haven't gotten 100% cure rate from those on this forum that have done IVIG. I believe Dr. K's cure rate is 80% with 1 IVIG...and the other 20% theorectically could be fixed with a 2nd. I know worried dad's son and PMoreno's dd aren't back to normal...I don't know if there was some other comfounding factor. Certainly Worried Dad's son was a bit older and severely affected, perhaps an atypical PANDAS case (a PANDAS/SC combo?). I sure would be curious to see how either child would do with a 2nd IVIG (or PEX) and/or a 2mo. trial of Azith. (at therapeutic doses, if they haven't done that yet)...

[dcmom]

My dd neurologist is very informed regarding pandas. He has a 22 year old patient, that he has seen since she was maybe 9 or 10. She had strep this year, and had a pandas episode with it. He felt she was able to manage it better at this age, but I was disappointed.

do you know if this patient had PEX or IVIG?

 

I don't think she did. Although I really like this neurologist, he seems to reserve IVIG and PEX for only EXTREMELY serious cases- I think it has to do a little with insurance though. I would certainly chose IVIG for my daughter if it could avoid a lifetime of dealing with this stuff.

 

One woman I have made contact with has a daughter age 16, she was in original NIH study. She had pex twice, and had multiple issues during childhood. She is now 16, and has been symptom free for about 3 years. (Good news!)

 

Another woman I have talked to from the original study, has a daughter who rec'd pex at about age 8. She continued antibiotics until age 16 (she is now 17 or 18 I think) she has been symptom free since the pex.

 

do we know if these teens had strep since being off abs?

 

I do not know if they have had strep, but I know at least one doesn't have her tonsils, which IMHO may help later in life to avoid a couple of strep infections?? I am planning a tonsillectimy for my dd this summer...poor kid.

 

An aquaintance of mine has a son in highschool with pandas. He still struggles with pretty consistent ocd, but is managing with meds and therapy.

I wonder how this boy will do into adulthood...do you know if he is on prophylactic abs or just psych. meds?

 

He has been on antibiotics and psych meds (several different ones over the years) since he was young...

 

 

 

According to Dr. K, IVIG "cures" PANDAS. I haven't figured out why we haven't gotten 100% cure rate from those on this forum that have done IVIG. I believe Dr. K's cure rate is 80% with 1 IVIG...and the other 20% theorectically could be fixed with a 2nd. I know worried dad's son and PMoreno's dd aren't back to normal...I don't know if there was some other comfounding factor. Certainly Worried Dad's son was a bit older and severely affected, perhaps an atypical PANDAS case (a PANDAS/SC combo?). I sure would be curious to see how either child would do with a 2nd IVIG (or PEX) and/or a 2mo. trial of Azith. (at therapeutic doses, if they haven't done that yet)...

 

I am starting to feel that IVIG might be more of an effective treatment, than a cure. I still think that would be worthwhile. I am hoping to do IVIG if we have another episode (although still hoping for complete recovery from first). EAmom: have you done IVIG? Have you been able to acess what (numbers, statistics) the "risk" is?

[EAMom]

We have decided we will do IVIG and are working on getting it done locally (Northern CA). (If that doesn't work, we will go to Dr. K.) The immunologist we are seeing feels it is very safe. (I think there were more problems with IVIG 9-10 years ago. ) But, like antibiotics (or psych meds), you can never say anything is entirely safe! If there is a chance it helps dd's current issues (not full-blown pandas but some anxiety, handwriting, math, tics/movements) and prevents (like you said) helps prevent a lifetime of dealing with this stuff it will be well worth it. If it prevents a full-blown PANDAS episode when she is 18 and off at college and forgets to take her prophylactic ab then it will be well worth it.

 

Have you seen Dr. Beth Latimer in DC? Diana said she does IVIG and PEX in PANDAS patients.

[dcmom]

Hi EA mom,

 

We have seen Dr Latimer, and she was great, very compassionate. She does refer pandas patients to IVIG, and PEX.

 

Did you do the steroid burst?

 

My dd has had a really good 4 days, I am trying not to get my hopes up. If this continues we will just do a wait and see for now. (However the poor kid still can only wear one outfit, and avoids using the bathroom...)

 

If she has another episode, or this gets even a little worse, I would like to do IVIG for her. I can't decide whether to do the steroid burst first- I guess it is helpful.

 

I hope you are able to get IVIG locally, and I hope it helps!!

 

Keep us posted...

[dcmom]

to follow up on what I just said:

 

It looks like I might have an answer. My insurance co just emailed me a list of criteria for admission to pandas/pitands treatment (I am hoping they mean IVIG- what else is there?) One of the criteria is measurable clinical improvement after steroid burst. I guess that will be our next step if things get worse again....

[momtotaylor]

Thanks. That is good to know. I would assume that is what they mean by treatment. Will you do a steroid burst now or if things get worse again?