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ajcire

Does the intensity of pandas usually get worse?

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Not sure if my question is going to make sense but I wondering if the intensity/symptoms usually get worse?

 

I don't want it to sound like I think I can ignore the current symptoms of my ds (Age 7) as I don't but because I am dealing with a husband who is not totally on board and a ped. who is open to this and says he has a few patients with it but doesn't know much about it so he knows his one way that worked with those patients to treat it (he says amox which I am afraid isn't doing it) I just am curious as to what to expect. Ds's symptoms are really mild and some are so subtle that even I sometimes am starting to question myself (although I am so beyond positive that this is what it is and can see why my dh is not quite getting it).

 

I guess what I am asking is will this get worse or is it just that this is the way my ds's symptoms present and I am fortunate that it is not extreme?

 

Main symptoms that got me realizing it was pandas...all figuring this out after a bad year of strep in the house- frequent urination, throat clearing, history of eye blinking, handwashing, garbage hoarding, emotional/irrational, sudden onset of sleep anxiety (needing to have me in his room).

 

Those symptoms are for the most part much better.... we had done 3 months on a low dose of zithromax with a different dr. than we see currently. the mild handwashing had stopped even before that, as did the garbage hoarding... I had not realized that was anything until after I discovered Pandas... gotta love hindsight. Now mostly we deal with him just needing to ask us to check on him at bedtime (no big deal), still can get irrational and have sudden emotional outbursts but only with the immediate family, constant attention to detail, and throat clearing is still present after we deal with strep. He gets strep with no symptoms. I know to check based on his behavior as well as any time someone in the house has it. Unforutnately my non pandas daughter gets it frequently.

 

 

I hope my question is making sense.... I am trying to have it treated right but until that happens will things get worse or likely stay as is.

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Erica,

 

In our case, absolutely. Mild symptoms not interfering with functioning (quirky behaviors) that we thought she'd outgrow for years. Those behaviors in hindsight were mainly OCD behaviors (but she kept their existance basically to herself). Starting 2-3 years ago with a series of repeated strep infections (treated with Antibiotics for 10 days each time), her baseline dysfunction was rising, with extreme symptoms interfering with her ability to learn, read, write, cognitive reasoning etc (Junior year in High School). She essentially lost last year.

 

If I were to know then what I know now (had no idea it was Pandas or what Pandas was for that matter), I would have aggressively treated to get her back to a normal baseline in hopes of maximizing her learning ability and brain function. We have lost many years of her high school with decreased cognitive functioning.

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it seems from what I've read on here, each child is different...and each episode is different...

 

we are in our second strep episode and it is much less severe than the first...

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When my son has strep, his symptoms will continue to worsen until about a week of being on antibiotics. Then the very slow process of recovery begins.

 

With each episode, they don't necessarily get worse. He's had PANDAS surface 3 times. The second time was worse than the third. But recovery took longer for the third one.

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Erica,

I completely understand your question and concern. My ds is 11 years old and has shown Pandas symptoms since he was 8 years. The symptoms are like your sons, mild ocd, anxiety, frequent urination, eye/throat tics, some moodiness, but all mild and able to cope with on a daily basis (I think we get use to our children's quirks) We are treating him abx and hope he makes improvements and doesn't get worse.

 

When you read the forum, you see how severe this disorder can be for some children. My child does not have the extreme symptoms, and it makes you doubt yourself or question if our children will continue get worse and never get better... and then you feel quilty b/c they don't have the extreme symptoms and we should feel lucky instead. The whole thing scares you to death.

 

Just like memom mentioned, we should do everything we can now before things get worse.... we have nothing to loose. I think for the children who have mild symptoms, we should still treat them just as agressively and not wait to see what happens.

 

I hold my breath every day that thing get better (and not worse). I think we all hold our breath :ph34r:

 

Shannon

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Shannon, exactly! You just said it better than I was able to express. It sounds like our scenerios are very similar. I always use the word quirky when describing my ds. Only deep down I know some of them are not just quirks but are pandas.

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All of your symptoms sound like mild OCD - so while you are waiting on agreement for treatment, you may want to try ERP (Exposure & Ritual Prevention) - for really mild symptoms, you can really do a program at home. Try reading "What to do When Your Brain Gets Stuck" - a workbook for kids with OCD. It gives them tools to use another part of their brain. If you need help understanding how to do this with the rituals that you have listed below, feel free to let me know. We dealt with all of these and much more. ERP made her life much easier when in an extreme OCD episode and is now a normal part of our life during the mild part. She is at about 95-98% right now - I am really interested in the conversation about the last 10% medically, but for now we are continuing the ERP. If nothing else, it is creating a very confident brave little kid.

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All of your symptoms sound like mild OCD -

 

 

Megs Mom, the thing is that most of those symptoms... the handwashing, the garbage hoarding, went away... and just like it seemed like he started them over night, they seemed to go away overnight.. .where all of a sudden we realized he just wasn't doing it anymore. Now it's much more subtle symptoms.

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All of your symptoms sound like mild OCD -

 

 

Megs Mom, the thing is that most of those symptoms... the handwashing, the garbage hoarding, went away... and just like it seemed like he started them over night, they seemed to go away overnight.. .where all of a sudden we realized he just wasn't doing it anymore. Now it's much more subtle symptoms.

 

Ok, that's great. We use ERP for very mild symptoms as well - but that may not be necessary in your case. We hope not to have another repeat of this, but after 3-4 times, we are fairly sure that we'll have more times and it take a little while for treatment to work. Hopefully, I will be wrong about that - we are just planning for the worst. As I look back on the time between episodes, I can now see a good bit of OCD (maybe 5-10%) that was then magnified in the next episode. For us, each one seemed to build on the one before. Glad you are doing so well!! Best - Susan

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Susan, I think that is definitely some of what I keep wondering... the ocd stuff... at the time it was happening I had no idea really what it was... just thought he was doing some quirky things and it wasn't hurting anyone. Then it just stopped... it wasn't anything that we did.... and I guess I am holding my breath wondering if we will ever see that stuff again (hoarding, handwashing and who knows what things I didn't even realize were going on). I guess if it does I will be better prepared and hopefully recognize it quicker.

 

 

 

 

 

 

 

All of your symptoms sound like mild OCD -

 

 

Megs Mom, the thing is that most of those symptoms... the handwashing, the garbage hoarding, went away... and just like it seemed like he started them over night, they seemed to go away overnight.. .where all of a sudden we realized he just wasn't doing it anymore. Now it's much more subtle symptoms.

 

Ok, that's great. We use ERP for very mild symptoms as well - but that may not be necessary in your case. We hope not to have another repeat of this, but after 3-4 times, we are fairly sure that we'll have more times and it take a little while for treatment to work. Hopefully, I will be wrong about that - we are just planning for the worst. As I look back on the time between episodes, I can now see a good bit of OCD (maybe 5-10%) that was then magnified in the next episode. For us, each one seemed to build on the one before. Glad you are doing so well!! Best - Susan

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Hi,

 

My impression has been that symptoms do worsen as time goes on, with untreated strep infections or exacerbations.

 

The way I had it described to me (by my wife? Dr. K? Can't remember) is that you have an exacerbation that has worsened symptoms, then the child slowly improves over time, but their baseline never quite gets back to where it was before. Then, assuming you haven't medically intervened, at some point they get another exacerbation, go even lower, and never rise quite back to where they were. And so on...

 

With DD, we just kept setting the bar lower as far as what we thought we could live with, until we looked around and realized she was truly and deeply dysfunctional, that meds for bipolar and OCD and tourettes were doing nothing, and realized we couldn't wait any longer to try IVIG.

 

We've been glad that we did.

 

Now, antibiotics may prevent recurrent exacerbations or get rid of the existing strep, so maybe that wouldn't be the pattern for you.

 

Pixiesdaddy

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Hi,

The way I had it described to me (by my wife? Dr. K? Can't remember) is that you have an exacerbation that has worsened symptoms, then the child slowly improves over time, but their baseline never quite gets back to where it was before. Then, assuming you haven't medically intervened, at some point they get another exacerbation, go even lower, and never rise quite back to where they were. And so on...

 

Yes, even after 1.5 years on abs we were noticing a "baseline change" with strep exposure and exacerbations from other illnesses (flu etc)...hence our decision to proceed with IVIG.

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This is what we've experienced, too. Three major exacerbations and each one worse than the last. More severe, longer time to recover, even with treatments like IVIG.

 

Saw something on the web a while back where a medical site (Australia or New Zealand, I think) stated that the brain injury from PANDAS is cumulative, and that - after enough repeated bouts - the damage may become permanent. That scared the heck out of me!

 

 

Hi,

The way I had it described to me (by my wife? Dr. K? Can't remember) is that you have an exacerbation that has worsened symptoms, then the child slowly improves over time, but their baseline never quite gets back to where it was before. Then, assuming you haven't medically intervened, at some point they get another exacerbation, go even lower, and never rise quite back to where they were. And so on...

 

Yes, even after 1.5 years on abs we were noticing a "baseline change" with strep exposure and exacerbations from other illnesses (flu etc)...hence our decision to proceed with IVIG.

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We had PANDAS without knowing for two to three years. Two times during that peiod we treated severe sinusitis with Augmentin and steroids and things got better. Last fall things started getting worse...more insomnia, moodswings, anxiety, OCD, tics, lack of focus, etc. By January we were in full chorea. His ASO was 1750 and his antiDNase B was 1350. After the diagnosis and three months of antibiotics we still had chorea and our Cunningham results were in the Sydenham's chorea range. We then did PEX with an immediate cure. A very fascinating look at what can happen if left untreated and how the damage can be progressive.

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Also, it seems to me that if you have a completely dysfunctional child (like my 5 year old when he is in acute pandas), the age of the child really matters. I mean, when my 5 year old hits me and says mean things, they don't hurt as much as I would imagine if he were 12, 13, 14. And, on days when he cannot help himself, at least I can carry him to the bathroom and pull down his pants for him, or I can spoon feed him his dinner, I can 'force' him to take a bath and I can get him dressed and he can sleep in my bed when he is too scared, etc...I can't imagine trying to deal with a dysfunctional, helpless 12 year old. With that said, I'm not saying that having a 5 year old pandas child is easy - he has been pandas since 20 months old, so he has missed out on some real developmental opportunities along the way and once we tackle this thing we have a lot of work to do b/c I don't think he has the "life skills" that a 5 year old should have. I have not been able to teach him these things consistantly b/c we have been too busy just trying to survive...

 

Stephanie

 

 

Not sure if my question is going to make sense but I wondering if the intensity/symptoms usually get worse?

 

I don't want it to sound like I think I can ignore the current symptoms of my ds (Age 7) as I don't but because I am dealing with a husband who is not totally on board and a ped. who is open to this and says he has a few patients with it but doesn't know much about it so he knows his one way that worked with those patients to treat it (he says amox which I am afraid isn't doing it) I just am curious as to what to expect. Ds's symptoms are really mild and some are so subtle that even I sometimes am starting to question myself (although I am so beyond positive that this is what it is and can see why my dh is not quite getting it).

 

I guess what I am asking is will this get worse or is it just that this is the way my ds's symptoms present and I am fortunate that it is not extreme?

 

Main symptoms that got me realizing it was pandas...all figuring this out after a bad year of strep in the house- frequent urination, throat clearing, history of eye blinking, handwashing, garbage hoarding, emotional/irrational, sudden onset of sleep anxiety (needing to have me in his room).

 

Those symptoms are for the most part much better.... we had done 3 months on a low dose of zithromax with a different dr. than we see currently. the mild handwashing had stopped even before that, as did the garbage hoarding... I had not realized that was anything until after I discovered Pandas... gotta love hindsight. Now mostly we deal with him just needing to ask us to check on him at bedtime (no big deal), still can get irrational and have sudden emotional outbursts but only with the immediate family, constant attention to detail, and throat clearing is still present after we deal with strep. He gets strep with no symptoms. I know to check based on his behavior as well as any time someone in the house has it. Unforutnately my non pandas daughter gets it frequently.

 

 

I hope my question is making sense.... I am trying to have it treated right but until that happens will things get worse or likely stay as is.

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