Medicines, I'm not seeing topics regarding

[MIAS_MOM]

One of my biggest concerns is over medicating, or using medications that end up making PANDAS worse. My 10 yr old dd is on Celexa, Tenex, Abilify, Neurontin, and we have Ativan P.O. and I.M. for emergencies. We have to use the Ativan about 2x a month. She's had meds for years, we do behavioral therapy every month. We still have good day/bad day. I'm not sure how her small body can even tolerate these amounts, but they seem to help in some small way,,,,,I think,,,,,but I cant help but wonder what she'd be like "today" off all of them. I dont see much about using these meds, Is there anyone else out there that is "loaded" and any ideas or thoughts on if they are working for us, or against us?

[MomWithOCDSon]

Generally speaking, many PANDAS families either try to stay away from most of these classes of psychiatric medications because they muddy the treatment picture, or they activate rather than help the child, or because strictly PANDAS treatments (antibiotics, IVIG and/or PEX) successfully abate the behaviors these drugs address by getting at the underlying cause . . . auto-immune response, inflammation, etc.

 

Our DS, too, was diagnosed with a psychiatric illness (OCD) long before we found PANDAS, so we were accustomed to using psych drugs, predominantly SSRI's. Since having found PANDAS, though, and seeing good results with abating the OCD behaviors through antibiotic therapy, we have discovered that psych drugs require very careful, if any, use and dosage. Our previous psych used what I think is the standard approach of try this drug, if it doesn't work, up the dose. Still doesn't seem to be having the desired effect? Increase the dose again! Still doesn't work "right"? Switch to another one and increase its dosage to see if it'll work eventually. And on and on and on and on.

 

After many years of trial and error, we're one of a few PANDAS families that I know of that find assistance via both standard PANDAS treatment (abx) AND low-dose psych drugs; our DS is currently taking low-dose Zoloft, and we're also currently doing a low-dose trial of another, complementary med, as well, since a recent exacerbation significantly negatively impacted DS's functionality. So far, so good (knock on wood).

 

In the end, what therapy or combinations of therapies is a personal decision and it seems like families who very literally experienced "overnight onset" and found immediate PANDAS intervention have less or no use at all for psychiatric medications. Those of us whose children have suffered longer, meanwhile, and/or who had received other diagnoses before a PANDAS diagnoses, may be more familiar with or even more willing to explore interventions in addition to the strictly medical. My only experiential advice to you would be that it is, indeed, possible that one or more of the drugs your DD is currently taking could be contributing to, rather than arresting, her condition, and you might want to talk with your doctor(s) about stepping down dosages or potentially even eliminating one or more of them. We have found, for instance, that while a low dose of Zoloft appears to help our DS combat his OCD compulsions and rituals, increasing that dose by as little as 25 mg. can put him over some "psychic ledge" and actually make those rituals and compulsions worse.

 

You're familiar with Dr. Tanya Murphy's research in this vein? Here's a link, if you haven't seen it before:

 

Murphy - SSRI Activation in PANDAS

 

Good luck to you!

[EAMom]

One of my biggest concerns is over medicating, or using medications that end up making PANDAS worse. My 10 yr old dd is on Celexa, Tenex, Abilify, Neurontin, and we have Ativan P.O. and I.M. for emergencies. We have to use the Ativan about 2x a month. She's had meds for years, we do behavioral therapy every month. We still have good day/bad day. I'm not sure how her small body can even tolerate these amounts, but they seem to help in some small way,,,,,I think,,,,,but I cant help but wonder what she'd be like "today" off all of them. I dont see much about using these meds, Is there anyone else out there that is "loaded" and any ideas or thoughts on if they are working for us, or against us?

 

Wow, that is a lot. No antibiotics? It sounds like your docs are soley going after symptomatic treatment. How is your dd doing? Is she able to go to regular school? has friends?

 

My dd is on Azithromycin, a low dose of prozac, once a day advil, and has had HD IVIG 2x. I think those that have gone the IVIG/antibiotic (treating an infection triggered autoimmune dz) route have found that thay don't really need to load up on muliple psych. meds...in fact my dd even being on 1 is a bit unusual (she may have some preexisting anxiety, she was also had a very severe case of PANDAS with anorexia)

 

My concern with these docs that just use psych. drugs...is that psych. drugs are a bandaid masking the real problem (autoimmune dz) and not getting to the root of the problem which could be getting worse and worse. Is there anyway you could travel to a PANDAS expert?

[MIAS_MOM]

We happen to be in the "black hole" world of PANDAS. It took 6 mos and an 2hr dr appt to get our PANDAS diag. We are still being seen and treated by that psychiatrist. Our Peds believes in PANDAS, but no knowledge at all. So the treatment plan had always been, just like posted above, if the med isnt working, up the dose, do this several times, not working, change the med. I believe to this day my dd has tried almost every psych drug out there, and I feel that even though we have more control now, we should be better than we are now, and I feel like the meds may be part of the monster. I've questioned and asked about the medicines doing more harm, but am told, she is doing better than she was before. BUT before is over 2 yrs ago. Our psych finally started talking about sending us to a REAL PANDAS Dr a few months ago, we at the moment have an appt at All Childrens. ( 15 hrs away ) so I will hope to get rid of these meds at that time, thankyou for answers, I've held back on this one, because i could feel frowny faces coming my way ! I got the sense most PANDAS families do not use this type of treatment. Glad to know we might can do it too!

[MomWithOCDSon]

but am told, she is doing better than she was before. BUT before is over 2 yrs ago.

 

Interesting. We've had the same commentary from our original/old psych. Just a couple of weeks ago, however, we switched to a new, more PANDAS-savvy psych. As she reviewed our very long list of experience and medications tried, she stopped and asked specifically, "But what have you tried SINCE the PANDAS diagnosis and treatment? Nothing before 'counts' because you had an underlying medical issue that was not being addressed." Then she drew a thick, horizontal line across that point in time on the medical and medications history I'd given her. God bless her, she's the first one who's really gotten it, and the light bulb went on for me when she said that, as well.

 

Do you have antibiotics in the mix? You haven't said thus far. If not, chances are there's still an underlying immune issue that the psych drugs alone aren't going to be able to eradicate; they might just dampen the symptoms for a time.

 

Go see that PANDAS doc, and/or, in the meantime, ask your PANDAS-believing-but-inexperienced ped to help you with a nice, long abx prescription: a month or more of azith or Augmentin. Track the results carefully. See if you witness any improvement.

Edited April 10, 2011 by MomWithOCDSon

[MIAS_MOM]

but am told, she is doing better than she was before. BUT before is over 2 yrs ago.

 

Interesting. We've had the same commentary from our original/old psych. Just a couple of weeks ago, however, we switched to a new, more PANDAS-savvy psych. As she reviewed our very long list of experience and medications tried, she stopped and asked specifically, "But what have you tried SINCE the PANDAS diagnosis and treatment? Nothing before 'counts' because you had an underlying medical issue that was not being addressed." Then she drew a thick, horizontal line across that point in time on the medical and medications history I'd given her. God bless her, she's the first one who's really gotten it, and the light bulb went on for me when she said that, as well.

 

Do you have antibiotics in the mix? You haven't said thus far. If not, chances are there's still an underlying immune issue that the psych drugs alone aren't going to be able to eradicate; they might just dampen the symptoms for a time.

 

Go see that PANDAS doc, and/or, in the meantime, ask your PANDAS-believing-but-inexperienced ped to help you with a nice, long abx prescription: a month or more of azith or Augmentin. Track the results carefully. See if you witness any improvement.

Wow, OK, No antibiotics bc neither of the two drs wants to be responsible for admin something they are not familiar with, So I am REALLY looking forward to this appt, praying it will help us out in a way no one else here (hometown) has been able to do. I will however get information on monthly antibiotics to take back to the peds with us in the meantime to see if she will go ahead, I did talk her into labs this last time !

[Guest pandas16]

Perhaps try only using drugs that reduce the activity of the glutamate and norepinephrine system if SSRI's don't work? I was on countless SSRI's as a child and reacted absolutely horribly. I missed 4th and 5th grade because of them. I was so sick and therefore so against them for a really long time! I would still avoid those that work on the serotonin and dopamine system. You just have to find which system is out of whack.

 

A week ago I couldn't function and now I can thanks to drugs that reduce norepinephrine and glutmate. I had severe tics, OCD, ADHD, mood issues and high cunningham test results. (just to name some problems) I defiantly have PANDAS and always responded to immune related treatment. I just recently and hesitantly tried things to reduce norepinephrine and glutmate very slowly and wham. Really a miracle until the immune treatment I'm trying kicks in completely. Literally last week I could not function and now I can. It's absolutely amazing. Tetracyclines reduce glutamate, they also act as an anti inflammatory. Tenex works on the norepinephrine system. (The sleepiness does go away) I'm currently on that and doxycyline and doing great. I'm going a different route with the immune treatment this time, however while waiting for it to work, (if it works) these drugs have saved me. The doctor whom I saw also said he had seem very good results with the drug lamictal in children specifically who have PANDAS. You should still look at the immune issue as well though. Feel free to PM me.

Edited April 10, 2011 by pandas16

[Chemar]

I am rather appalled that these doctors do not want to be "responsible" for administering antibiotics that DO help kids with PANDAS, yet they are giving a horrid cocktail of meds that may not be helpful and are known to cause a whole host of nasty side effects!

 

Also, as ACN/Latitudes is primarily focused on alternative aka complementary treatments, medicines per se are not the primary topic here (obviously with respect for the fact that PANDAS/PITAND patients may need certain meds and usually must have antibiotic meds)