Cautions Against SSRIs with PANDAS?

[Joan Pandas Mom]

I read a brief study done by Dr. T. Murphy and Dr. Storch on the use of SSRI's with PANDAS. I googled SSRI's and PANDAS a few days ago. It said in some cases they are not effective. We took him off SSRI's a few days ago. We swithed to Zyprexa and Colnazepam. He was on Risperdol, which didn't seem to help. Your theory makes sense. We just put him on Clonazepam to calm things down. Things were so out of control. It is helping. He told me yesterday he needs 1/2 mg. in am too, which Dr. said ok to do.

 

I've been dealing with this for at least 10 years now....and before we knew it was PANDAS, or even knew it was strep related- tried lots and lots of different psych meds. When my daughter was very young- 3-5yo, I swore I'd never try any of "those dangerous psych meds." But, around age 6 (before strep/PANDAS recognition still) things got so bad, that we were seriously looking at out of home placement for her (still chokes me up to think about it), so I decided to try. We burned through the SSRI's pretty quickly- they just didn't change a thing. Then risperdal, which seemed to help at 1st, but she got worse anyway, and increasing dosage made no difference. When we weaned that one, discovered she was BETTER off of it. Right now we still take lamictal, which was originally used for probable seizures, but seemed to help with mood as well. When we discovered the strep (she's a chronic carrier) and later the PANDAS, even though there was overlap between antibiotics and psych meds, I discovered that the antibiotics did more for mood/behavior than any psych med ever did. I did not see any worsening of symptoms, except with risperdal and lithium, but not the SSRIs. I have a theory- just my thinking:

 

PANDAS is caused by antibodies triggering neurotransmitters to be released willy nilly in the basal ganglia. Psych meds are supposed to balance, or stabilize those neurotransmitters. But, what I think is that the antibodies are constantly disrupting stability- so they don't work during exacerbation, then when you come out of exacerbation, the drugs, themselves may cause problems because the "chaos" they are suppose to treat no longer exists. Like I said, just my theory. I'm not aware of any studies that have been done regarding PANDAS kids and psych meds.

[Joan Pandas Mom]

I forgot to mention I am finding the Zoloft helped with depression. My son was always active and most of the time very happy. With this last incapacitating exacerbation he is getting depressed.

 

Like you, we were desperate for anything that could help relieve our son's nightmare. We tried quite a few psych meds: for our son, they had no effect at best and exacerbated things at worst.

 

Zoloft made his OCD worse. Zyprexa also, and increasing the dose triggered a dystonic reaction.

 

Benzos (anti-anxiety meds - ativan, klonopin) were the worst. For our son, ativan was like pouring nitro on a bonfire.

 

I hope you have better luck. Some kids on here do seem to benefit (at least short-term) from some psych meds. Based on our son's experience, though, I'd just recommend extreme caution in terms of starting dosage and rate of increase.

 

And - per the Dr. Tanya Murphy study Buster cites - normal doses of SSRI's were found to cause big problems for PANDAS children. That study indicated that PANDAS kids need to be on extremely low doses (4-6 mg, as I recall) to avoid serious complications.

[MomWithOCDSon]

 

Thanks for that! I hope, absolutely nothing! As you've indicated, we don't see the SSRIs harming him, so we are reluctant to phase them out altogether until we're certain that the abx are assisting adequately. I was just getting the impression from some posts here that the SSRIs might be harming him, though we're not seeing signs of that, and it made me concerned. The plan now is to stick with the current SSRI dosage and continue the abx, also.

 

It seems from your post, also, that you would consider the possibility that OCD-like symptoms could be the result of not just a strep bacteria affecting brain function, but potentially other infectious agents, as well? Makes sense, especially if the driving "force," if you will, of the symptoms is inflammation.

 

But then, is that to say, that ALL OCD is the result of brain inflammation in response to infectious agents? That there is no such malady as psych-only OCD? Fascinating, and frankly, inspiring!

[MomWithOCDSon]

[quote}One question I would have for you is why did you finally decide to go on the SSRI's? At that time did you all of a sudden see a huge increase in his OCD or was it that you weren't seeing improvement and you decided it was time to try meds. You need to search and remember as much as possible about what was going on at the time.

 

We can't tell you what to do with the meds, but we can tell you what others have experienced and help guide you in trial and error. Yes, it's bad that treating our kids includes so much trial and error, but it does. There's diferent antbitics that work for differnt kids. Some have the most success on Zithromax. Some of Augmentin. Some on Keflex. Some get better on amoxicillan (although this is rare). Each trial on an antibiotic needs to get a month or so devoted to it. Some have to try steroids,. Some go onto IVIG or PEX. But the end result is you may give your child a life that for awhile you thought wasn't a posssibility anymore and you are empowered with information to tackle the next time, if God forbid it should occur.

 

Do try the Ibuprofen and tell us if that eases any symptoms at all. Also, if you are not doing so, give him Omega 3's which help with OCD. Make sure strep is out of your house. Make sure all family members have had strep tests and they are all cultured if they come back negative. Change tooth brushes of infected people

 

Also, remember some instinct brought you to this forum and the idea of PANDAS. Don't ignore your gut. Many families have just followed their gut despite what doctors have told us. Parental instinct is irreplaceable.

 

Thanks for the wise words! Yes, I am trying to learn from other families here on the forum, and yes, I would prefer black and white over these persistent shades of gray when it comes to treating my son; I'd rather he weren't a walking experiment. But I am gaining both strength and insight from those of you who are somewhat ahead of us in this process.

 

We initially went to SSRIs because the CBT ERP was not working any longer. He was in second grade, and after several months (4 or 5) of functioning more or less "normally" in terms of his learning and socialization, he began this noticable decline. He couldn't pay attention, couldn't complete his work, forgot how to read, had emotional meltdowns, etc. We returned to therapy on a more regular and intensive basis (twice weekly) and did all the CBT and ERP homework at home, but he still wasn't functioning. It was as though the Lexapro delivered us from he!!, though, as you've suggested, we may never know if it was, in fact, the Lexapro or if there was some other healing occurring at the time.

 

What I'm 99% sure of, however, is that he wasn't introduced to any antibiotics during that time, as he is almost never traditionally "sick." But the discussion here has inspired me to collect a complete set of his medical records from his pediatrician of 10 years, to check the specific dates of when we brought him in for various ailments and what treatments he received in response.

 

So perhaps mine, as you've suggested, has both PANDAS and OCD. We've seen his OCD be entirely "manageable," so if we can get there again, I will be pleased. Still, the idea that it may be 100% curable . . . that he could shed it FOREVER . . . is something I can't let go of!

[thereishope]

Couple things in case you haven't run across this yet on the forum...

 

You think he was never really sick. I high number of PANDAS do not get fevers, sore throat, redness when they have. My son doesn't. When I first googled sudden onset OCD and PANDAS popped up, I dismissed it. My son didn't have strep, I thought. I didn't realize he could be asymptomatic. Well, now I know al 3 of my kids are. I take him for a strep test when a meltdown occurs or OCD goes through the roof.

 

Also, PANDAS symptoms can resurface for some as a result of viruses, allergies, vaccinations. For my son, whne that happens, he has an excaerbation of varying ranges and eventually he gets back to himself.

 

How old was your son when you first noticed OCD tendencies?

 

Finally, as a fyi, I do know a young adult with PANDAS who also has a co-diagnosis of OCD. She has been PANDAS symptoms free for a while but takes Zoloft for the OCD. So, co-diagnosises is not unheard of. And most important...she is happy.

[thereishope]

Upon reading other posts, do you realize what you've listed as his changes are common in PANDAS? You don't forget to read with "regular" clinical OCD.

 

If you haven't already, print but the FAQ thread and the Fact thread and read over it tonight. It's very helpful.

 

We initially went to SSRIs because the CBT ERP was not working any longer. He was in second grade, and after several months (4 or 5) of functioning more or less "normally" in terms of his learning and socialization, he began this noticable decline. He couldn't pay attention, couldn't complete his work, forgot how to read, had emotional meltdowns, etc. We returned to therapy on a more regular and intensive basis (twice weekly) and did all the CBT and ERP homework at home,

[MomWithOCDSon]

Couple things in case you haven't run across this yet on the forum...

 

You think he was never really sick. I high number of PANDAS do not get fevers, sore throat, redness when they have. My son doesn't. When I first googled sudden onset OCD and PANDAS popped up, I dismissed it. My son didn't have strep, I thought. I didn't realize he could be asymptomatic. Well, now I know al 3 of my kids are. I take him for a strep test when a meltdown occurs or OCD goes through the roof.

 

Also, PANDAS symptoms can resurface for some as a result of viruses, allergies, vaccinations. For my son, whne that happens, he has an excaerbation of varying ranges and eventually he gets back to himself.

 

How old was your son when you first noticed OCD tendencies?

 

Finally, as a fyi, I do know a young adult with PANDAS who also has a co-diagnosis of OCD. She has been PANDAS symptoms free for a while but takes Zoloft for the OCD. So, co-diagnosises is not unheard of. And most important...she is happy.

 

Thanks again, Vickie. Of course, that's what we're seeking: that he can be happy again!

 

I am thinking more and more that he is both PANDAS and OCD. It's part gut, and part information gathering.

 

We didn't know it was OCD or PANDAS or whatever initially. I'd say when he was 2.5 to 3.0, we knew he was different from other kids. The term the psychologist gave him was "highly sensitive." He didn't like all the noise and chaos at preschool, and he preferred to play alone. He was very organized about his cubby: his coat had to hang on a certain hook, his nap-time stuffed animal had to be facing out, etc. But he never counted anything or "evened things up" or any of the other uber-eccentric behaviors I hear about with some other young OCD kids.

 

The diagnosis came when, in first grade, he was eating lunch in the school cafeteria and dropped his spoon on the floor. I guess he became inconsolable over it and wouldn't pick it up, wouldn't allow the staff to wash it and give it back to him, wouldn't allow them to give him an entirely new, clean one. The principal took him into her office and he calmed down and chatted with her for a while. But everytime she asked if he was ready to go back to class and he'd say yes, then he'd go to put a foot out the door of her office and he'd collapse into tears again, unable to move on. She asked him if he often felt like that, and he said yes, so she called us.

 

The school psychologist observed him in class, and we called his pediatrician, as well. Everybody came back with the thought that he was just a very bright, sensitive kid. But within about a week, we noticed his hands were red, almost raw. We asked him if he was washing them a lot and he said, "Maybe." So then we interviewed his teacher; apparently, he was washing them at EVERY change in activity throughout the school day. Between math and reading, between reading and gym, between gym and art, etc. It was his way of transitioning his brain, it seemed. That's when the light bulb went off in my head. So we took him to a child psychologist who confirmed: it was OCD.

 

Anything raising a red flag for you in that chronology?

[MomWithOCDSon]

Upon reading other posts, do you realize what you've listed as his changes are common in PANDAS? You don't forget to read with "regular" clinical OCD.

 

Yeah, I do get that, and I agree. Just wish I'd known it THEN and hadn't maybe wasted the last 4+ years treating the symptoms rather than the cause! Aarrgghh!

[nevergiveup]

For me the key to understanding and analyzing your kids successes and downturns is clearly understanding the differences in psych illness and autoimmune illness. (However many psych illness wax and wane also and may also be another autoimmune mechansim but that is another forum)

 

Lupus, hashimotos enceph, MS, head trauma, chrohns, all have residual symptoms of depression. When the brain is injured, it obviously messes with it chemical balance.

 

Many kids are finding relief with Lexapro recently for depression. Seems to be a good alternative for teenage depression. Kids with PANDAS, have later in life come down with depression. The key here is why does your child have depression and does your child have SUDDEN spikes in his OCD, including ADHD, attention illness, potentially balance issues, fatigue etc...

 

OCD that stays consistent but may increase slowly and decrease slowly is what most shrinks call regular OCD. Most children however, suffer from Sudden ONSET OCD with remission. I am sure your doctors have told you that it may go away, it does for many children. Thats why the SSRI studies look so pitiful with results, because when they do blind studies, many kids with or without the drug still go into remission. Obviously some of these drugs make our kids feel good or happy, a lot of these drugs make adults feel good. And symptom management is helpful. But immune modulation is trying to eliminate the relapses not treat the symptoms. We have found the high dose abx, steriods, IVIG and even PEX which are all immune modulating help the autoimmune side of this. Kids whom are older seem to have more persistent cases and need more immediate help. The medical community is so far behind on this stuff. I have 1 pediatrician, 2 immunologists, 1 forensic psychiatrist, 1 emerg med doc in my immediate family. All, 7 yrs ago struggled with the PANDAS diagnosis. However, after digging deeper and deeper and doing the Cunningham blood tests and many rheum and immun tests it is very clear that my kid does not have OCD, she has an immune deficiency compounded with an autoimmune problem causing brain inflammation in the basal ganglia. So to get around the skeptics we call it something other than PANDAS. Could all of the brain assaults have hurt her chemical balance and glutamate, sure, could she benefit from SSRI or other psych drugs, sure. Will this help prevent another attack, probably not. Will it add some relief yes maybe. Its about treating symptoms or treating the cause. I say do both. But our current medical community is only on board with treating symptoms, not the cause. You have to find the cause first. I did, there is no physician right now that would not agree my dd has an autoimmune condition causing tics, chorea and ocd. Its whether they know how to treat the problem???? The issue is will your children have permanent damage if they keep relapsing? How severe are the relapses? And are you willing to fight like **** to determine what is going on. I watched my child turn into a different person three times in 7 years. I am very familiar with autoimmune conditions like ms because both myself and my mother have it and I could see the slight neuro issues in coordination, memory, obvious movements disorders, and crippling intrusive thoughts. I am very aware that each one of these attacks (my dd) set her back and she never really has returned to 100 percent. I am so glad you are trying to understand this illness. You will have to fight for your child on this one. My family is a strong believer that you see docs who are the leading experts, whom have done clinical trials and seen SUCCESSES in their trials. Careful though, not docs just looking at genetics of this rather studies of TREATMENTS with SUCCESSES. Docs whom are looking at the autoimmune component of this. I will never forget for 5 years my ped told me my dd has a great immune system there is nothing wrong with it. Finally when I got to the Immun docs and we ran tests the markers started showing up left and right. However there were still non believers. Even still in my family. Then the cunningham tests helped and of couse a horrible relapse with chorea sent them all in a tail spin. This fight is not for the weak at heart, it is overwhelming and time consuming. Some moms choose to listen to their local peds and shrinks and treat the symptoms for now. And in some ways I feel that may have made my life much easier. But deep down inside I knew it was physical not psychological and I couldn't watch my child get the wrong treatments. Not to mention pay out of pocket shrink bills whom didn't get it. Dig deep inside, use your mother instinct. You'll know if it is OCD or physical. I have a friend whose dd is suffering from typical OCD and the mother knows it is not PANDAS. Her dd does not have extreme spikes and her gut tells her it is not triggered from infection.

I encouraged by all the press and seeing all the moms looking for answers lately on this forum!

[thereishope]

Well, excessive hand washing to the point of bleeding was my son's first PANADS OCD symptom so we have that in common. For my son it was on his 5th bday and just started kindergarten. You've also listed sensory problems in regards to how he reacted to the noise and chaos in the school. If he was avoiding touch at all or would wipe off touch, that could have been OCD, sensory, or both. Sensory probelms are related to PANDAS.

 

You said he couldn't pay attention. I know ADD and OCD can go hand in hand. But...a lot of PANDAS kids show signs of ADD, ADHD, being fidgety, etc too.

 

"Regular" OCD is gradual. With PANDAS, it's a quick snowball effect.

 

Do you have the info for the Cuningham test? Like others have said, you should have that done. Especially since you are unsure about PANDAS. I would getting him on antibiotic now and not wait until you make a solid decsiion if it's PANDAS or not.