An 82-Year Old Woman with PANDAS?

[MomWithOCDSon]

A couple of days ago, I was out raking our monstrous maple leaf collection in the front yard when my elderly neighbor stepped out on her porch and called out to me. This lady is 82, widowed and has faced some major health problems in recent years, including cancer. That being said, she has always been very "with it" mentally: friendly, holds a conversation well, driving herself places, attending her church, running the local United Way drive, etc.

 

Anyway, she tells me that she's developed an "anxiety problem." She says she worries about everything and everybody, and that she can't seem to stop. Then she tells me she's very afraid of germs. I asked her if this came on suddenly, and she said yes, just this past summer, after she was hospitalized for a bad upper respiratory infection. She says first her doctor gave her Lexapro but it didn't help, so now she's taking Prozac and clonansepam.

 

She invited me inside her normally neat, tidy little house. It's still tidy, but she's begun to hoard. It is organized hoarding . . . lined up along all the walls . . . but it is a dramatic amount of stuff she's accumulated since I was last in her home. And true to her reporting of her fear of germs, she's got everything covered with tissues or paper towels (like the phone) so that she doesn't have to touch it directly, and it appears she's eating off paper plates with plastic utensils so that they can be thrown away after a single use. All of this is dramatically different from less than a year ago.

 

I found myself telling her about my DS and his journey through anxiety and OCD and, finally, the help he's gotten from PANDAS treatment via antibiotics. She was stunned, of course. I asked her if her doctor had tested her for any infections, like strep or myco p., and she said no. I told her I had some research that I could share with her, and maybe she could give it to her doctor and see if he would at least give abx a try, since first the Lexapro and now the Prozac don't seem to be helping her at all.

 

I came home and printed out a rheam of research and information on infection and mental illness, and then I wrote a cover letter to her which she could also show her doctor with bullet points of major facts and findings, including our personal experiences with our DS. She's said she'll take the packet with her to her next doctor's appointment.

 

First I was floored, and now I'm just certain that the Universe works in mysterious ways. I just hope her doctor will step outside the box a little and give it a try . . . . . .

[KaraM]

Wow. This will be so interesting to follow and so amazing if the antibiotics work!

I honestly believe that PANDAS goes far beyond Pediatric patients.

Please keep us posted.

Kara

[Iowadawn]

Boy, Nancy. Incredible. You know, I think I would tip Dr. Cunningham about this. Certainly she could wave the $400 fee for a test. This would be earth-shaking, I think anyway. At least get her thoughts. Just my two cents. Dawn

[thereishope]

Wow! The fact that she reached out to you and shared that with you...yes things worked in special ways.

 

Now, this may be overstepping bounds, but do you feel comfortable asking her if she wants you to come with her? Unfortunately, I can see a doctor dismissing her and not hearing her out, especially with her age.

[kferricks]

I will be following this!

[SarahJane]

Interesting...please keep us updated if you can. She is lucky to have you as a neighbor.

 

PANDAS has rocked my universe and world. Once you know something, you can't not know it. So it surprises me that so much that the medical community knew about effects of illness went out the door once Freud lit his pipe and uttered the words "it's all your mother's fault." (I'm paraphrasing there, of course!) I've used this example in explaining it: back in 1891 if the dairy farmer's daughter fell ill & soon afterwards started only hopping and counting eggs to evens and pulling out her hair and screaming for no reason and had difficulty sitting still and showed any other myriad of mental illness symtoms, the traveling doctor would have likely been able to link it to her illness. It would have been incurable but explainable, and she'd become the "crazy" or "touched" dairy farmer's daughter--poor thing. Now, if in 2010, the dairy farmer's daughter had those symptoms, it'd be home/school stress or psychosomatic or too much TV or permissive parenting or a bunch of other explanations that would ignore the fact that a month before she'd had strep or the flu or pneumonia or a vaccine, etc.... And there would be a pill she could take & if that didn't work another pill could be added. So is the increased use of SSRIs in the 80's/90's part of the problem? Back in the 60's/70's, mother may have had shelter with her little helper but her 6-yr-old didn't get the pills. What did they do if a kid presented with PANDAS symptoms? OR since the vaccine schedule was so different & abx/pesticides weren't as abundant in our food supply, did as many kids have these issues? It truly boggles the mind.

[matis_mom]

Poor lady! To have to deal with this at her age... Does she have any family you can talk to? Keep us posted. Very interesting...

[kimballot]

Nancy - you truly amaze me. Aren't you the person who also got the psychologist (or was it psychiatrist) to turn around and accept PANDAS? This is amazing. Please keep us posted!

[MomWithOCDSon]

Thanks everyone.

 

Yes, she's a pretty remarkable lady, and while the cancer and various illnesses before this barely seemed to "touch her" in any deeply troubling way, this plunge into a world of anxiety has really shaken her. It's written all over her face.

 

Great idea to contact Dr. Cunningham; I think I will, if only to see what she thinks about it.

 

Vickie, I honestly thought about asking her if she would like me to go with her to her doctor, but then I had to settle down and rethink it, if just a bit. I've got my own young PANDA to deal with at home, plus a husband and a full-time job; even if she'd allow me to become part of her healthcare picture, I'm not sure it would be wise for me to take that on. For the time being, I'm hoping I've armed her well with the packet of research and my personal cover letter that will at least get the doctor thinking; hopefully, it won't be so much about him believing HER as it will be him taking the time to ingest what I've sent her in there with. I figure that if this sort of "removed support" doesn't work at all, and she asks me for more direct help, I will of course step up to the plate.

 

I will keep you informed as I get more information. Thanks again for the ideas!

[MomWithOCDSon]

Nancy - you truly amaze me. Aren't you the person who also got the psychologist (or was it psychiatrist) to turn around and accept PANDAS? This is amazing. Please keep us posted!

I just "carpet-bomb" folks with research and information until they figure it'd just be easier to go along with me than to fight me.

 

My mom used to call me "stubborn." I just like to think of it as "persistent" and "resilient."

[tpotter]

Is it possible that the infection could be Lyme? I know there's been a lot of talk about it, but given her age, and the fact that she apparently hasn't had problems in the past, I would think along the lines of something that she could have contracted easily and more recently. Lyme can cause these symptoms, they certainly could be a form of PITANDS, and I think it would be a good question to pose to Dr. C.

 

If Lyme is a possibility, it would help for her to be able to ask the doc about that, as well, because it may not yet be chronic, and would make things so much easier to treat.

 

Please keep us informed.

[DebC]

When we were educating our friends on PANDAS, one of my husband's friends said that his elderly mother-in-law experienced PANDAS like symptoms after an infection of some sort (I'm wanting to say it was respiratory as well). They thought they were going to have to institutionalize her as her rages came on so suddenly and were quickly out of control. Once they realized that the infection was still lingering and it was treated, she returned to her normal, sweet self and hasn't had any additional issues. Pretty amazing!

[EAMom]

 

Great idea to contact Dr. Cunningham; I think I will, if only to see what she thinks about it.

 

You are AWESOME!

 

How about cc'ing (or contacting separately) Dr. Swedo, Dr. Leckman, Dr. T., Dr. K. etc. ?

[peglem]

Wasn't there an article posted here not long ago about post infectious encephalitis in the elderly being a fairly common phenomena?

[SarahJane]

Been thinking & this reminds me of the link Stephanie2 posted on 10/14/2010 about vaccines after age 50. I don't know if there's a way to reference to that thread, so I'll just put the link here again.

 

http://articles.mercola.com/sites/articles/pages/vaccines-depression-and-neurodegeneration-after-age-50.aspx

 

May be worth asking your neighbor if she had any vaccines prior to the "URI" or in the general timeframe. Will be interesting if she did. Maybe shingles or something as I'd think flu or pneumonia wouldn't have been done before Sept. Are we going to be seeing this "rare" issue pop up with the youngest & oldest segments of the population? Hmmmm....