PANDAS symptoms either plateau or go back to 0

[Guest pandas16]

I noticed that sometimes when I get sick, my PANDAS symptoms increase but then immediately go back down to 0 after. Other times, my PANDAS symptoms increase but then I simply stay at 90% for example, instead of being symptom free. Has this happened to your children at all? Any idea why this happens? I have experienced both depending on the the illness.

Edited February 6, 2011 by pandas16

[Worried_Dad]

Our son is at about 95% now after 16 months of high-dose augmentin XR, but he went un- or under-treated for several years. We're assuming it just takes time to get to 100% in that case. Several neurologists told us that any brain injury will take several years to fully heal once the source of the injury (infection or post-infectious autoimmune) is controlled. So we're hopeful that he'll get there, given time (and protection from strep).

 

During his "un- / under-treated" period, he would have exacerbations from exposure and each one seemed to drop him farther from 100%. His "baseline changed," as other parents on here have observed. Praying that - now that we know what we're dealing with and how to fight it - he'll never experience that dramatic baseline shift again.

 

Very interesting to hear about your experiences, pandas16. Kind of reinforces my belief that there is no "complete cure" for an autoimmune condition like PANDAS, only effective ways to manage it. Would you agree with that, or do you think it will completely resolve given enough time?

[Guest pandas16]

In my case no, there was never any cure. However things are very manageable and I think with time they'll become much easier as PANDAS becomes more accepted. It's just annoying because its a very high maintenance disease that has the capability to severely impact my ability to function.

[Guest pandas16]

In my case no, there was never any cure. However things are very manageable and I think with time they'll become much easier as PANDAS becomes more accepted. It's just annoying because its a very high maintenance disease that has the capability to severely impact my ability to function.

[emmalily]

In my case no, there was never any cure. However things are very manageable and I think with time they'll become much easier as PANDAS becomes more accepted. It's just annoying because its a very high maintenance disease that has the capability to severely impact my ability to function.

 

pandas16, do you mind my asking what your 90% is looking like right now? Is it OCD/tics that have come back or is it some other sort of feeling? Are you still at work? Are you still doing extra stuff, such as going out with friends or keeping up an exercise routine? Is it an annoyance or is it really interfering? Sorry I'm so nosy, I just haven't got many older pandas-people to compare my symptoms to. If it's too personal, feel free not to share or PM me if you'd rather not post publicly. Thank you!

[Guest pandas16]

At 90%, absolutely no one looking at me or talking to me would assume that I have any sort of neuro-immune problem. I'm a teacher. I just graduated college. None of my students would ever assume anything was wrong with me. I teach high school, so if I was "weird" at all... they would be the first to say something for sure.

 

I don't mind answering your questions at all. I've felt kind of alone on this forum. I feel like I'm one of the only ones who made it out okay with this disease. You must sometimes feel that way too in reading some of the sad posts. It's lonesome & scary here, yet not so lonesome in a bizarre way. I've gone back and fourth deleting my account but finally decided to stay in order to keep up to date on PANDAS news..

 

It's just a "feeling." It's like a cloud that just kind of comes over me at times and causes OCD, and anxiety/hyperness but it's only noticeable to me. My mom says she can't tell. It's almost like I want to have a tic, but PANDAS isn't bad enough for the tic to come out. You see what I mean? just a feeling.. Is that how things are for you too> Feel free to send me a message if you need someone to talk to.

 

I still hang out with my friends and have normal relationships with everyone around me. Concerning exercise, I jog.

 

 

A while back I remember reading a post from you saying you got a hit from antibiotics especially Augmentin. ( I think it was you) I feel like the same thing happens to me and I was wondering how you dealt with that? If it wasn't you who posted that, sorry!

Edited February 6, 2011 by pandas16

[wornoutmom]

pandas16 - I absolutely loved reading your post. My ds is 15 - lived with this much of his life, but just got IVIG/abx in June. Can't say we've reached 100%, but maybe 85-90%?? What we've noticed in the last 5 months or so, is that when an illness hits (now mind you he's still on abx and he's not gotten hit with any of the biggies like strep etc. this year), the anxiety/OCD ramps up, but it is kind of a "flare" that lasts about 48-72 hours, and then he goes back to his 85-90% like it never happened. The flares are different in intensity, and he gets scared this means full fledged exacerbation, but so far instead we're seeing this new pattern. And it sounds very similar to what you describe. So the goal now is to not panic when it happens, and figure out the best way to deal with it when it does, knowing it is a temporary thing. I can't wait to show him your post. Because honestly, reading about your very functional life, even with these flares when sick, gives me so much hope for his future - and I really really needed that! Thanks for posting!!!

[MomWithOCDSon]

pandas16 - I absolutely loved reading your post. My ds is 15 - lived with this much of his life, but just got IVIG/abx in June. Can't say we've reached 100%, but maybe 85-90%?? What we've noticed in the last 5 months or so, is that when an illness hits (now mind you he's still on abx and he's not gotten hit with any of the biggies like strep etc. this year), the anxiety/OCD ramps up, but it is kind of a "flare" that lasts about 48-72 hours, and then he goes back to his 85-90% like it never happened. The flares are different in intensity, and he gets scared this means full fledged exacerbation, but so far instead we're seeing this new pattern. And it sounds very similar to what you describe. So the goal now is to not panic when it happens, and figure out the best way to deal with it when it does, knowing it is a temporary thing. I can't wait to show him your post. Because honestly, reading about your very functional life, even with these flares when sick, gives me so much hope for his future - and I really really needed that! Thanks for posting!!!

 

I second that! My DS just turned 14, and I think he can especially connect with your "feeling of hyperness/anxiety that no one else can see." He describes a very similar feeling these days, even when, to our eyes, he seems to be fairly calm and even cheerful. I guess I'm especially interested by your noting that this feeling can still arise in your "90%," because I've been thinking that perhaps my DS . . . despite his general health and functionality . . . may not yet be back to the 90% mark due to these feelings lingering. But maybe he is . . . . and he'll get better and better at managing himself and his reaction to this "feeling" as he matures, as you have.

 

All the best to you!

Edited February 6, 2011 by MomWithOCDSon

[Guest pandas16]

pandas16 - I absolutely loved reading your post. My ds is 15 - lived with this much of his life, but just got IVIG/abx in June. Can't say we've reached 100%, but maybe 85-90%?? What we've noticed in the last 5 months or so, is that when an illness hits (now mind you he's still on abx and he's not gotten hit with any of the biggies like strep etc. this year), the anxiety/OCD ramps up, but it is kind of a "flare" that lasts about 48-72 hours, and then he goes back to his 85-90% like it never happened. The flares are different in intensity, and he gets scared this means full fledged exacerbation, but so far instead we're seeing this new pattern. And it sounds very similar to what you describe. So the goal now is to not panic when it happens, and figure out the best way to deal with it when it does, knowing it is a temporary thing. I can't wait to show him your post. Because honestly, reading about your very functional life, even with these flares when sick, gives me so much hope for his future - and I really really needed that! Thanks for posting!!!

 

I second that! My DS just turned 14, and I think he can especially connect with your "feeling of hyperness/anxiety that no one else can see." He describes a very similar feeling these days, even when, to our eyes, he seems to be fairly calm and even cheerful. I guess I'm especially interested by your noting that this feeling can still arise in your "90%," because I've been thinking that perhaps my DS . . . despite his general health and functionality . . . may not yet be back to the 90% mark due to these feelings lingering. But maybe he is . . . . and he'll get better and better at managing himself and his reaction to this "feeling" as he matures, as you have.

 

All the best to you!

 

 

Ah I should clarify sorry- After the treatment that put me into remission, I had "the PANDAS feeling" when I was stressed/sick/allergy season. Usually after most illnesses, I went right back to being symptom free. Sometimes my PANDAS symptoms worsened before an illness, sometimes after but rarely during. The "PANDAS cloud" came every now and then but never stayed too long.

 

In college I had at least 20 sinus infections and a documented mycoplasma infection. This time, after being sick my symptoms didn't go back to 0. On Cunninghams test, my antibodies are up. I still feel more or less symptom free thanks to the supplements I take, but I notice the "PANDAS cloud" more whereas after my original treatment I did not. I should be getting steroids soon. I will update. I hope to go back to how I was- even though things are alright.

Edited February 6, 2011 by pandas16

[dut]

Hello

 

This seems to be where we are at the moment with our dd7 (dx 2008). Prior to this she would flare in response to various illnesses and last year seemingly in response to all illness. We haven't got back to 100% after that, although each time previously we did. Thing is that now she will get a small PANDAS flare when ill. Like you, Pandas16, sometimes it comes before, sometimes after but goes away just as quickly and we go back to our 95% or so baseline.

 

This also seems to be the new pattern for our ds3 (dx 2009). He also used to flare and then take a long time to remit but he also seems to ramp with illness but ramp back down straight away after. This current illness he has (some stomach thing) may be another turning point.. we haven't ramped down and it's been a week or so but he may still be a little ill.

 

I'm not sure what has changed for them both. Why our dd hasn't remitted fully following a string of illnesses at the beginning of last summer and why they both seem to ramp when ill but get back to baseline so quickly.. hope the latter lasts....

Edited February 7, 2011 by dut