OCD or PANDAS?

[CeeKay]

My 16 y.o. son had his first (undiagnosed) PANDAS-like episode at age 9 after a strep infection. He changed personality overnight, developed facial tics, had the terror-stricken look, rages, separation anxiety, etc. He was hospitalized for 5 days during his meltdown, and eventually was diagnosed with severe anxiety, depression, non-verbal learning disorder (also Asperger's was mentioned though not formally diagnosed) and given Risperdal for a few months, then Paxil, which we just weaned him off completely as of 10 days ago. The reason for the Paxil taper down was that he felt his anxiety and depression were getting worse, and as he put it, "I'm going backward." He stopped going to tutoring last spring and he couldn't explain why. He hasn't been in school full-time since he was in middle school, he's now a junior and has been mostly home schooled with tutors.

 

In the midst of the recent taper down of Paxil, and in the throes of the horrible side effects from it, we discovered PANDAS and it seemed to explain all he's been through for the past 7 years while we were treating his depression and anxiety, which seemed to flare up from time to time for no apparent reason.

 

He was just evaluated (in a phone consult) by Dr. T, who believes he has PANDAS-like symptoms. One question I'm trying to answer is, How do you know the difference between OCD and PANDAS-caused OCD?

 

My son has/had these symptoms in the past month, most of which continue except bed wetting and severe rage:

 

OCD

Recent bout of enuresis

rage

adhd/hyperactive

intense separation anxiety

mood swings

horrific mouth sores

extreme sensory defensiveness (he actually screamed when he saw a bowl of chili on the table, a food he used to love and is overwhelmed by normal cooking and other household smells

ADHD

hyperfocus

hypersomnia

refusal to bathe and brush teeth

personality changes

 

Do these symptoms normally occur with non-PANDAS OCD?

 

Also, his blood work looked like this:

 

ASO 338

Anti DNAse B 129

Streptozyme 200

Mycoplasma 2.29

 

I'm not sure if these numbers mean anything. Blood was drawn in mid-February, he's been asymptomatic for infection but his sister had a terrible bout of strep in early November. Both my kids have had numerous strep infections over the years, my son also has had repeated and prolonged bouts of mouth sores. I believe my 19 y.o. my daughter has PANDAS also, but she gets a sore throat, tests positive, has these crazy, psychotic symptoms and behaviors, then gets anti-biotics and gets better soon afterward. My son, however, rarely complains and, in hindsight, has suffered from a general malaise for many years now. He hasn't had an anti-biotic in three years but he's had such difficulty with attending school and the anxiety and depression. His Vitamin D is very low (9) and his B12 is low normal.

 

If anyone has any insight/advice and could explain what this blood work means, I would appreciate it.

 

Thank you for your help!

Edited March 9, 2013 by CeeKay

[MomWithOCDSon]

Hi!

 

My son just turned 16 and he has PANDAS. His primary symptom set is also OCD, but during exacerbation, he also exhibits separation anxiety, wild-eyed "fight or flight," loss of small motor skills (handwriting legibility takes a dive), ADD/ADHD-type behavior, sensory issues (noises, smells, etc. distress him), insomnia, increased urinary frequency and PDD-NOS/Asperger behaviors, along with an increase in the more classic OCD behaviors.

 

Like your son, mine was diagnosed years ago with "regular OCD." He was 6 at the time and had been exposed to strep; however, because he is entirely classically asymptomatic to strep (no sore throat, no fever, etc.), we couldn't make the temporal link at the time, and the doctors blew us off. Therapy alone kept him functional for that first year, and then he had another, more dramatic exacerbation about 16 months later. Again, I couldn't make a link with strep, and the doctors blew me off as an "internet-obsessed mother" when I pushed the PANDAS possibility again; I even lied and told the pediatrician that I was concerned he'd contracted strep and talked her into a culture. But when it came back negative, I thought that was the end of that. We went back to more intensive therapy and accepted a prescription for an SSRI (Lexapro). It took him about 3 months, but he eventually got back to himself and maintained fairly well and "normal" for about 4 years, until spring of his 6th grade year. BTW, both of these fairly dramatic regressions/episodes/exacerbations were chalked up to the "natural wax and wane of OCD" by our caregivers at the time.

 

In early April of that year, we got the one and only "strep letter" from the junior high school ever. By mid-May, DS was declining rapidly. By early July, he was entirely non-functional. He couldn't leave the house, he couldn't do anything -- even the things he once enjoyed -- because of all the compulsions and rituals involved with each and every move he'd make. He couldn't sleep. They changed, tweaked and increased his meds. Over and over again. Nothing helped, he just kept declining. School started in late August and we tried getting him there, but he couldn't do it, so we withdrew him. The docs continued to tell us it was an "OCD waxing," but it started to look like some sort of psychotic episode. In retrospect, I think he was reacting badly to all the medications and medication changes they were throwing at him at the time.

 

Then I came across "Saving Sammy" in the bookstore and read it in one sitting. It was the first account I'd ever seen of a boy like my DS who was entirely asymptomatic for strep, but ultimately was found to be reacting to it nonetheless, and who had PANDAS. We ordered the titer blood tests, and the results were enough to convince our pediatrician to try an antibiotic trial. We started Augmentin XR, and the results were dramatic. Within 48 hours, my DS was a different kid . . . not wholly back to "himself," but miles away from the bundle of raw nerve endings he'd been for the last 4+ months.

 

Our story is long, and I'll spare you the details, at least for now. But suffice it to say that had it not been for treating the PANDAS with antibiotics, along with a number of other strategies and supplements we found through the PANDAS forum here at Latitudes and research folks have kindly shared here, I don't know where our DS would be now. He has steadily improved over the last 3 years. We were able to get him back into school full-time after about 3 months of abx (with an IEP in place), and his return to other activities and "real life" has continued to emerge as time has gone on. In the end, he was on abx for about 1 year, and we continue with a low-dose SSRI and a number of supplements. He's an honors student in his sophomore year of high school, enjoys hanging out with friends, etc. He still has some OCD behaviors, but they are not debilitating, and most of them would not be obvious to outsiders.

 

In the end, I don't believe in "regular OCD" anymore. I don't think there's any such thing. I think our kids are genetically predisposed to OCD or Tourettes or behaviors on the autism spectrum (maybe via methylation issues?), and then an infection and/or autoimmune reaction to infection triggers changes in the brain (inflammation, excess glutamate, excess histamine), and the "mental" illness becomes manifest. My DS, I feel, is proof that even having gone undiagnosed and untreated (in a medical sense) for PANDAS/PANS for years, treatment can still make a dramatic difference in health and the quality of life.

 

Unlike young kids for whom PANDAS diagnosis and treatment is accessed quickly and thus all of their OCD seems to be abated nearly immediately, I'm not sure if my DS will ever be entirely OCD-free. He carried it around for years, accommodating himself, his behavior, his world-view, etc., because of it. So now, maybe some of that thinking and behavior is pretty entrenched. Maybe he wouldn't be "him" without some element of that remaining in his life. But he's living his life, he's happy, he's productive . . . he's a far cry from that quivering ball of flesh he'd become at age 12.

 

So, I urge you to give PANDAS/PANS treatment a try. You have little to lose, and everything to gain! Feel free to PM me! Take care!

Edited March 9, 2013 by MomWithOCDSon

[CeeKay]

Nancy,

 

Thank you so much for your story and offer of help. I will private message when I figure out how. :-) I'm glad your son is doing so well, it gives me hope that my son can also recover.

 

We started clarithromycin, and Valtrex for his mouth sores yesterday. Dr. T had also prescribed azythromycin, which he took for ten days, a few weeks ago when we first contacted him, and my son is a lot more stable now than he was before he started it. But as I said, he's just been taken off Paxil, an SSRI that is likened to withdrawing from heroin, so his rage and obsessions may be attributed to that...we're just not sure. Thankfully, the violent rage has settled down now, to a plain irritability, but at least we can sleep at night again. Now if he would only let me out of his sight for more than a few minutes...

 

He was two weeks into the withdrawal/tapering down of Paxil when we discovered PANDAS and we didn't want to stop the withdrawal because he was getting through it, despite his misery. Now that he's off Paxil, I am hoping I can get his PANDAS symptoms under control with the abx. I wonder if the Paxil may have muted certain symptoms, such as OCD, or severe mood swings, which prevented him from getting the proper diagnosis sooner.

 

He's lost his whole childhood from the time of his diagnosis until now, just existing, never happy, never knowing why he was so miserable. He used to say "I don't feel good mom", and I'd ask what hurt, and he could never tell me. I assumed it was the depression, as he never had fevers or other symptoms.

 

I have managed to put together a timeline by getting a list of dates of strep from his pediatrician, as well as a history of Paxil increases and flare ups of anxiety and school avoidance, etc. from his psychiatrist. I also found the neurologist's report when he first had his big flare-up in 2006, and she detailed facial tics that I had forgotten all about, that appeared out of nowhere along with his personality changes and rage, terror, etc. When I put the timeline together, it's obvious that he had set-backs during or soon after strep infections. We never made the connection because we assumed he couldn't get back to school after being sick because he was out of his routine for too long, and the anxiety was too great. This was typical for kids on the Autism spectrum, we were told.

 

I would like to hear about any supplements that might be helpful or other therapies in addition to the anti-biotics. He's allergic to penicillin and I suspect he has food allergies as well, so we will be going down the gluten-free or at least trying the elimination diet as soon as I can get my head together from the ordeal we've been through over the past couple of months. He has very limited food interests so it's not going to be easy, especially now that he's so sensorily challenged. He also has chronic constipation, which we attributed to Paxil but so far, is not resolving. The poor kid is suffering on so many levels!

 

If you or anyone knows of any OCD therapists in Long Island, NY or the surrounding areas, I would appreciate it. I don't want to drop the ball on getting the best treatments asap. His current treatment team are all either ignorant of PANDAS, or skeptical at best.

 

 

 

 

 

Hi!

 

My son just turned 16 and he has PANDAS. His primary symptom set is also OCD, but during exacerbation, he also exhibits separation anxiety, wild-eyed "fight or flight," loss of small motor skills (handwriting legibility takes a dive), ADD/ADHD-type behavior, sensory issues (noises, smells, etc. distress him), insomnia, increased urinary frequency and PDD-NOS/Asperger behaviors, along with an increase in the more classic OCD behaviors.

 

Like your son, mine was diagnosed years ago with "regular OCD." He was 6 at the time and had been exposed to strep; however, because he is entirely classically asymptomatic to strep (no sore throat, no fever, etc.), we couldn't make the temporal link at the time, and the doctors blew us off. Therapy alone kept him functional for that first year, and then he had another, more dramatic exacerbation about 16 months later. Again, I couldn't make a link with strep, and the doctors blew me off as an "internet-obsessed mother" when I pushed the PANDAS possibility again; I even lied and told the pediatrician that I was concerned he'd contracted strep and talked her into a culture. But when it came back negative, I thought that was the end of that. We went back to more intensive therapy and accepted a prescription for an SSRI (Lexapro). It took him about 3 months, but he eventually got back to himself and maintained fairly well and "normal" for about 4 years, until spring of his 6th grade year. BTW, both of these fairly dramatic regressions/episodes/exacerbations were chalked up to the "natural wax and wane of OCD" by our caregivers at the time.

 

In early April of that year, we got the one and only "strep letter" from the junior high school ever. By mid-May, DS was declining rapidly. By early July, he was entirely non-functional. He couldn't leave the house, he couldn't do anything -- even the things he once enjoyed -- because of all the compulsions and rituals involved with each and every move he'd make. He couldn't sleep. They changed, tweaked and increased his meds. Over and over again. Nothing helped, he just kept declining. School started in late August and we tried getting him there, but he couldn't do it, so we withdrew him. The docs continued to tell us it was an "OCD waxing," but it started to look like some sort of psychotic episode. In retrospect, I think he was reacting badly to all the medications and medication changes they were throwing at him at the time.

 

Then I came across "Saving Sammy" in the bookstore and read it in one sitting. It was the first account I'd ever seen of a boy like my DS who was entirely asymptomatic for strep, but ultimately was found to be reacting to it nonetheless, and who had PANDAS. We ordered the titer blood tests, and the results were enough to convince our pediatrician to try an antibiotic trial. We started Augmentin XR, and the results were dramatic. Within 48 hours, my DS was a different kid . . . not wholly back to "himself," but miles away from the bundle of raw nerve endings he'd been for the last 4+ months.

 

Our story is long, and I'll spare you the details, at least for now. But suffice it to say that had it not been for treating the PANDAS with antibiotics, along with a number of other strategies and supplements we found through the PANDAS forum here at Latitudes and research folks have kindly shared here, I don't know where our DS would be now. He has steadily improved over the last 3 years. We were able to get him back into school full-time after about 3 months of abx (with an IEP in place), and his return to other activities and "real life" has continued to emerge as time has gone on. In the end, he was on abx for about 1 year, and we continue with a low-dose SSRI and a number of supplements. He's an honors student in his sophomore year of high school, enjoys hanging out with friends, etc. He still has some OCD behaviors, but they are not debilitating, and most of them would not be obvious to outsiders.

 

In the end, I don't believe in "regular OCD" anymore. I don't think there's any such thing. I think our kids are genetically predisposed to OCD or Tourettes or behaviors on the autism spectrum (maybe via methylation issues?), and then an infection and/or autoimmune reaction to infection triggers changes in the brain (inflammation, excess glutamate, excess histamine), and the "mental" illness becomes manifest. My DS, I feel, is proof that even having gone undiagnosed and untreated (in a medical sense) for PANDAS/PANS for years, treatment can still make a dramatic difference in health and the quality of life.

 

Unlike young kids for whom PANDAS diagnosis and treatment is accessed quickly and thus all of their OCD seems to be abated nearly immediately, I'm not sure if my DS will ever be entirely OCD-free. He carried it around for years, accommodating himself, his behavior, his world-view, etc., because of it. So now, maybe some of that thinking and behavior is pretty entrenched. Maybe he wouldn't be "him" without some element of that remaining in his life. But he's living his life, he's happy, he's productive . . . he's a far cry from that quivering ball of flesh he'd become at age 12.

 

So, I urge you to give PANDAS/PANS treatment a try. You have little to lose, and everything to gain! Feel free to PM me! Take care!

[MomWithOCDSon]

Hi CeeKay --

 

I've not known anyone who underwent Paxil withdrawal, but I, too, have heard it is tough. And I do have an immediate family member (not my DS) who went through withdrawal from two other SSRIs at two different times (Celexa and Wellbutrin), and both times were much, MUCH harder than the doctors had led him to expect. And he's a fully-functional adult without the other challenges our kids face. I think every psych should be given a treatment dose of each of these substances and then made to undergo withdrawal before they're permitted to prescribe. What they don't know about the withdrawal process is just short of criminal. Not to mention the fact that there is evidence that PANDAS kids can be, for whatever reason, more sensitive to SSRIs than the average patient, so the impact these drugs can have on them can be exponential. (You might Google Dr. Tanya Murphy PANDAS and SSRIs; there's a paper on this topic. I can also share my copy with you.)

 

If you'll check into the PANDAS forum here, on this same site, you'll see a wealth of information pertaining to supplements, diets (including GCF), etc. that have helped many of our kids. The good news is there are a lot of things that may help; the bad news is that they continue to be very individualistic in terms of their responses to various things, so, to some extent, it remains a work in progress and an experiential process. Try it . . . if it helps, keep it up. If it doesn't drop it.

 

My DS takes n-acetylcystein (NAC), an amino acid that is a precursor to glutathione and is supposed to help modulate brain glutamate; Lamictal, a prescription med used for seizure disorders but also thought to modulate brain glutamate; B6, as he's an "over-methylator"; zinc, helps tremendously with his focus; Pepcid, helps control histamine and has dramatically reduced his reflux, eczema and "fight or flight" anxiety reactions; quercitin, a plant extract that is an anti-inflammatory and a "natural antihistamine" that prevents production of histamine in the body at the T-cell level; fish oil, anti-imflammatory; and D3.

 

As for OCD therapists in your area, unfortunately, I don't know of anyone specifically, but have you checked the IOCDF web site? They have a search page where you can request a number of specifics and get a list of therapists fitting your needs in a given geographic area. We've had good luck with therapists we've found through this registry. Here's a link:

 

IOCDF - Find a Treatment Provider

[ginaanddon]

Thank you for sharing your story. I too have a daughter who has been diagnosed with OCD for the past 3 years but I have wondered if it isn't PANDAS and continue to feel this could be the issue.

Where did you go for the blood work testing?

I have been looking into these options but not getting very far. I did just join this forum and did also look and post on the PANS/ PANDAS FORUM.

I have wondered if we she could be tested for PANS this far out from the onset.

 

Gina

[MomWithOCDSon]

Thank you for sharing your story. I too have a daughter who has been diagnosed with OCD for the past 3 years but I have wondered if it isn't PANDAS and continue to feel this could be the issue.

Where did you go for the blood work testing?

I have been looking into these options but not getting very far. I did just join this forum and did also look and post on the PANS/ PANDAS FORUM.

I have wondered if we she could be tested for PANS this far out from the onset.

 

Gina

 

My DS's onset was at least as early as 6 years old (and we frankly think, earlier) and he was not tested until he was 12, so yes, I think testing can still be helpful, even very far removed from the initial onset "experience." Particularly if your child is currently experiencing what the old-school psychs would have us believe is a "natural waxing" of the OCD, completely unrelated to any environmental or sociological changes in the child's circumstances that would normally drive increases in the underlying anxiety.

 

I'm pretty sure there's a list of testing on a pinned thread in the PANDAS forum, and I'm far from expert on that particular topic. There was, in the past, a blood test called "the Cunningham test" that was developed by a researcher, Dr. Madeliene Cunningham; however, my understanding is that this particular testing has been suspended pending some additional funding and/or approvals to recommence. Other than that, there are some fairly basic immune panel blood tests that check the body's immune response, and to that most PANDAS-savvy doctors add tests known as ASO and/or antidnase-b to test for strep titers. These strep titer tests are now understood to be far from conclusive as many kids are diagnosed without any unusual results for strep titers whatsoever; this may be due to other underlying causes (lyme or myco p, for example). But being from the school of "whatever works," I feel like if you can get your existing pediatrician to order an immune panel and strep titer tests, and the results are enough to convince them that PANDAS treatment is something to pursue, go for it!

 

In the end, PANDAS/PANS is a clinical diagnosis, and there is not a single definitive test for the condition; most of the specialists (again, there's a list on the PANDAS forum) use a variety of techniques to diagnose someone, including a detailed medical/mental history, blood tests, even demonstrations of small motor (writing) skills, etc.

 

In the meantime, as you're researching, exploring and deciding which path to take, I would strongly encourage you to keep a detailed journal of your child's health, behaviors, etc. A video diary via cellphone, we found, to be especially helpful in describing to our DS's caregivers the extraordinary and atypical behavioral presentations he had, particularly during the depth of the PANDAS. A journal -- written or video -- increases the strength and validity of your advocacy, especially with folks completely uninitiated or only nominally knowledgeable about the condition.

 

Good luck!