Can you be too old for it to help?

[Wombat140]

I've just posted about PANDAS on another OCD forum, and someone asked me whether you can be too old for the treatment to help, even if the symptoms were originally caused by infection. I don't know the answer. Does anyone else? I seem to remember at least one grown-up Latitudes member saying she was being treated for PANDAS herself, but I might be imagining that.

Thanks,

Wombat140

[Kiera]

Dr K states he's having success with IVIG on older kids and young adults but healing is slower. If treated w abx only, I'm not sure how much success you'd have. Dr Jory Goodman (beverlyhillsshrink website) states success in some adults post tonsillectomy so I guess it depends on the individual's symptoms, how aggressive treatment is etc... No cookie cutter cases, even in the younger populations!

[MomWithOCDSon]

Personally, I think that if there remains an auto-immune issue in an adult, PANDAS/PANs medical interventions (abx, IVIG, etc.) will be helpful; a microbe or antibody doesn't know the age of the body its impacting, so if a person grows into adulthood and remains vulnerable to an autoimmune response, then addressing the autoimmune issue is important at any age.

 

That being said, I know from experience that the more years one spends enduring the mental ravages of that kind of autoimmune disorder (like OCD), the more work it may take to overcome the habitual responses and even general way of thinking one develops over the years. My DS15 was finally diagnosed with PANDAS and began being treated for the autoimmune disorder at 12, after having received a formal OCD diagnosis at 6 and probably suffering from undiagnosed anxiety and other PANDAS behaviors even longer than that . . . since the age of 2.5 or 3.

 

So, he's much, MUCH better . . . functional, happy . . . after PANDAS treatment, but we continue ERP/CBT for some lingering, sticky OCD, and he still has some anxious reactions that appear to us to be more extreme than other kids his age, though they are, at least, in response to situations or triggers that would likely produce some level of anxiety in most people (new school year, public performance, competition, etc.). So, at his age, or at yours, can you 100% "undo" or "unwind" 5 or 10 or 20 years of "managing" your OCD/anxiety as best you can in the more conventional ways, once you've utilized medical interventions to put an end to the autoimmune onslaught on your brain?

 

I hope so. I think so. But as Kiera has said, I expect it to take longer, and I don't think the extended time is entirely medical. I think it's because my DS has been riding along in a mental track, and developing mental tracks, to contend with OCD. And now, even though he's medically healthier and mentally healthier, too, he basically has to "unlearn" some of those behaviors and habits he developed during some crucial, developmental years in response to the OCD. And that's hard, and possibly harder the older you become (i.e., people get "set in their ways").

 

All that said, I wouldn't ever encourage anyone to forego treating PANDAS for any reason, age included. It's worth every effort, and every minute of the investment because it gives you back the possibility that you can have a life without those nagging issues hanging around forever!

[Wombat140]

MomWithOCDSon, I'm encouraged to hear about your experience myself; I've been doubtful because I didn't seem to have heard of anyone being treated for PANDAS after longer than a year or two, but I make it that your son had had OCD for nearly as long as I've had it. So there must be some chance!

 

I'd been worrying myself about whether the damage would be permanent after this length of time, but it's just occurred to me that that isn't logical anyway. Last February, for whatever reason, the symptoms were down to very little - if it never got better than that, it wouldn't be much of a problem; so my brain can't have been permanently damaged then. So I suppose we're maybe only counting from then, which comes to 18 months. Much more promising.

 

Thanks very much to both of you, and would be glad to hear any more experiences about this.

[Stephanie2]

I don't think anyone is too old to get help. I am 38 and myself and my boys are being successfully treated.

[tpotter]

There's actually a lot of us with older children who were caught years after they originally got sick (I have 2.) Yes, it takes longer, there's nothing overnight about it, but finding as many of the infections as possible, and also treating the autoimmune response seems to be the most that has helped my children. Because the immune system is involved, it's rarely just one infection. You may also want to check for strep, staph, lyme (and co-infections, such as babesia, bartonella, RSF, erlichiosis, etc, even if you don't live in the "traditional" high tick areas, because lyme and co-infections are everywhere...can be spread by mosquitos.) Also check for viruses. In fact, the new NIMH website (or the paper that came out just before that...can't remember which,) mentions all of the above as possible culprits to PANS.

 

But, yes, it is possible for older kids and adults to be helped by treatment.

[Fixit]

Dh is adult pandas. Strep all his life (3-4)times a year till about 18 months ago.

 

Per a known panda dr, was put on 3-4 months of zith untill we were able to get his tonsils out.(that was not fun)Dr insisted on dh doing this as his constant infections were not going to allow our house to heal.

Hubby can't believe he hasn't had strep in so long. He feels it's like a miracle. His tics were roughly a 3 maybe 4 during active infection, and i would say they are a 2-3 now. I don't think it wll be overnigt for him.

I would think if i were focusing on his health i could get him to a 1 or healed. I really believe that.

 

I am not focused on him as he is has a full life, and a fantastic wife!!!!!!!

When i get to focus on him, we will check for further infections. That will help the rest of the household, i know.

He will probably have lymes, since he grew up in the DC area with countless inbedded tics.

But even if that is not the case...i strongly believe he has a massive yeast overgrowth. Decades of abx for strep without probiotics, steroids and plenty of beer. So until he will take a little care on his own, my efforts will be fruitless. Yeast can cause pans symptoms.

He has many signs of a chronic yeast overgrowth. If you do the morning spit test, (we do it as a family), his is the most disgusting thing i have ever seen. Myself and the 2ds's in remission, are fine(if you don't through ours out, you might drink it, as it is so clear). Ds12 who is still in episode..and therefore on abx...also shows yeast in his spit.

So we have controls to compare against.

 

Yeast creates inflamation. Besides watching what you eat, trying to kill the yeast, trying to replenish good bacteria, getting inflamation down needs to be part of the protocal(ie detoxing, turmeric, eating berries/cherries).

[Wombat140]

Thanks for the encouragement, everyone! I've passed that on to my friend on the other forum, too.

 

Never heard of that yeast test, Fixit. Any more information?

 

Tpotter - staph and "viruses" (apart from Epstein-Barr which I've vaguely seen mentioned) are new to me as PITANDS culprits, and I've been trying not to think about the Lyme co-infections. (Incidentally, it turns out that the Lake District, where we spend our holidays every year, is one of the areas where Lyme disease is commoner, so that's a possibility.) I'm feeling slightly desperate at the thought of getting tests for every one of them - and the doctor might well not have a test for some of them. Do you think if we did the general "immune panel" (assuming that exists in this country) that that would spot the miscellaneous ones? Or at least spot that there WAS some kind of an infection? I'm not sure how that test works.

[LaurenK]

I dont think so. I am an adult and I get treat with IV steroids for PANDAS. I jut got treated a week ago and now I am in remission again.

[PowPow]

laurenk, how long does your remission usually last?

do you mind sharing or pming what your symptoms relapse as? psych, neuro.... just thinking ahead for my teen, who also is helped by steroids

thanks

[LaurenK]

5-6 months. Tics & OCD

[PowPow]

thanks for sharing. I really appreciate it.

[EAMom]

I've just posted about PANDAS on another OCD forum, and someone asked me whether you can be too old for the treatment to help, even if the symptoms were originally caused by infection. I don't know the answer. Does anyone else? I seem to remember at least one grown-up Latitudes member saying she was being treated for PANDAS herself, but I might be imagining that.

Thanks,

Wombat140

 

here's aother thread re adults with PANDAS http://www.latitudes.org/forums/index.php?showtopic=16422&st=15

[EAMom]

 

Never heard of that yeast test, Fixit. Any more information?

 

 

I wasn't familiar either. If you google "yeast spit test" there are lots of hits.

 

http://www.candida-yeast-problems.com/spittest.html

 

One of the sites says to use bottled water.