Psych meds for OCD

[Phasmid]

SSRI (Zoloft) helped my son with anxiety.

 

Flip side of that coin... he got in trouble a lot at school! It made him disinhibited.

 

Did nothing for the OCD, ODD, or the extreme moods.

[EAMom]

Hi DC Mom,

 

I haven't read the other responses yet.

 

Our dd has been helped by psych. meds. Intially (when she was 7, hospitalized for AN) they put her on Lexapro...while it did help some anxiety/ocd (she still had lots of OCD, but at least we could get her to eat), it also ended up giving her serotonin syndrome (dilated pupils, aggression) when we upped the dose (as OCD wasn't adequately controlled, probably b/c we hadn't "discovered" azith yet and her sister was still strep positive). She also had a weird symptom of wanting to be upside down (akathesia?) even on the lower doses of lexapro. Strangely, when she was on the higher dose of lexapro, she finally became disinhibited enough to finally ride a bike without training wheels. She had been too nervous/embarassed b-4 that.

 

So, during the horrible spring of 08 (when we were still a battling the anorexia) we ended up stopping the lexapro (due to the side effects) but faced terrible withdrawal and the return of the severe anorexia (she was also on amoxicillin 250mg 2x daily at this point). We ended up putting her on a low dose of Prozac (10mg/day) to help with the Lexapro withdrawal. (BTW, this was when we figured out that Advil helped PANDAS symptoms, since we gave her some during her flu-like/headache symptoms from the lexapro withdrawal).

 

So, she's been on the low dose Prozac ever since. Initally we were afraid to "mess" with the Prozac b/c we were so afraid of the AN returning. Then later, we did try to wean her off. The few times (both before IVIG and after IVIG) when we've tried to decrease the Prozac (10mg is actually a very low dose) we were faced with a big increase in irritability (but interestingly, not OCD). More recently (in the past 2 weeks) we tried increasing her dose up a bit (to 15mg/day) and what we've noticed it that she has been A LOT nicer to her sister (which makes her sister nicer in return). She just seems overall happier, less irritable. So, I think we'll keep her at that dose for a while...

 

I do wonder if dd has some non-PANDAS pre-existing anxiety or perhaps a genetic predisposition towards having low serotonin. (There is a hisotry of depression in my family).

 

I also wonder if Prozac is helpful b/c it has some anti-inflammatory effects? Here's a link: http://www.sciencedaily.com/releases/2010/02/100225082441.htm

and here is something copied from Wikipedia http://en.wikipedia.org/wiki/Antidepressant:

 

Anti-inflammatory and immunomodulationRecent studies show pro-inflammatory cytokine processes take place during clinical depression, mania and bipolar disorder, and it is possible that symptoms of these conditions are attenuated by the pharmacological effect of antidepressants on the immune system.[72][73][74][75][76]

 

Studies also show that the chronic secretion of stress hormones as a result of disease, including somatic infections or autoimmune syndromes, may reduce the effect of neurotransmitters or other receptors in the brain by cell-mediated pro-inflammatory pathways, thereby leading to the dysregulation of neurohormones.[75] SSRIs, SNRIs and tricyclic antidepressants acting on serotonin, norepinephrine and dopamine receptors have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[77][78][79][80][81]

 

Antidepressants, specifically TCAs and SNRIs (or SSRI-NRI combinations), have also shown analgesic properties.[82][83]

 

These studies warrant investigation for antidepressants for use in both psychiatric and non-psychiatric illness and that a psycho-neuroimmunological approach may be required for optimal pharmacotherapy.[84] Future antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[85]

 

That said, I would be very cautious about using any psych. meds (keep doses low, don't give muliple meds) in our kids.

 

PS. I noticed SFmom's note about benedryl. My dd also gets 1/2 chlortrimaton (another anti-histamine) every night. She has exercise induced urticaria (actually I think it is the vibration, not the exercise per se that causes the histamine cascading). She gets itchy when she runs (I have the same thing) and anti-histamines help.

Edited February 12, 2011 by EAMom

[Bill]

Quick add - My son was on Zoloft initially (25mg) and when that stopped working moved to Prozac (down to 20mg); both low doses (son currently weighs 85lbs. but Zoloft started some five years ago. We see no benefit to the OCD. I should note that when OCD slammed into our life 2 years ago - that's when Zoloft stopped working. Both show(ed) significant benefit for aggression and behavioral. Regarding aggression, effects are immediate (within hours vice weeks) and when we've tried to stop or reduce, negative behavior increasing seen within a day. I add that because for us - it is clear that these medicines have an immediate impact, just not for OCD.

 

BTW - son has Pandas plus Lyme & friends. Like to add that as so many of us are dealing with multiple bugs and I don't think any of us really understands how these combination infections impact our kids (or selves)....

[kimballot]

My kids had pandas exacerbations in Dec. They have improved, yet still have pretty severe OCD. We are exploring Lyme treatment, so unfortunately feel we have to hold off on steroids- the magic bullet for us in the past.

 

I am not seeing a light at the end of this tunnel, and the OCD is really causing the girls lots of misery. They are starting ERP therapy next week- which will hopefully help.

 

The psychologist, my SIL (pharmacist), and DH are all asking why not try psych meds for the OCD. We have never needed them before- as pandas treatment has usually offered relief. I know most on this forum have not had great results- so I have been resistant, plus have not wanted to muddy the waters.

 

What I am looking for are studies, or technical medical info on why these meds don't work for our kids.

 

I am also interested in if anyone has had their childs OCD helped by meds.

 

Thanks!

 

Tanya Murphy's case series is the only study I have seen in print too. I, too, struggle with the "why not?" Idea. My son is getting ready for high school and it is important that he be functional every day.

 

I think the biggest factor for me to not use SSRIs as of yet has been a desire to NOT artificially damp down the PANDAS symptoms while we were looking for infections. That is, if we would have put my son on an SSRI and it helped him to return to an acceptable level of function, then we would not have looked further for infection and his infection would still be continuing. Kids with PANDAS have neuropsych symptoms in response to infection. In our case, it is sinus infection and his PANDAS symptoms help us to know when the sinuses are acting up. So.. you might want to consider this as you look for infections. Once you start SSRIs you may not realize that there are still infections lurking.

 

My current stand on SSRIs for us is:

 

If my son had been at risk of harm to himself or others while we were looking for infection, I would have tried SSRIs.

 

If my son does not return to a functional level after treatment for his infection and immune deficiency, then I will consider SSRIs.

 

I would need to have a physician who knows about PANDAS and / or is really interested in learning about PANDAS to order SSRIs for my son. I would not let the local child psychiatrist or neurologist who read one abstract or the NIMH website handle this.

[lynn]

We're in the same place. DS has PANDAS diagnosis, likely had this problem since 2001 but not diagnosed until last year, IVIG helped briefly twice, but didn't hold. Abx help (we know because he flairs when I take him off) but nowhere near 100% and DS is in a very competitive and challenging high school (freshman) with a raging case of anxiety and OCD. We have started ERP therapy which is moving glacially slowly--so slowly that we aren't sure it is moving.

 

So we are considering the two paths--either lyme/multiple infections or psychiatric drugs. Making an appointment today with lyme dr, but don't know when it will be. ERP therapist asked us to consider meds to take the edge off while DS works on the OCD. On the face of it, DS really needs help--Kim, we are on the stage right after you (which with luck you won't have )where we have increasingly fewer options. But on the other hand, I'm really skeptical about the drugs. DS did not do well on 5-HTP, nor on inositol (both seemed to "activate" his symptoms) but the problem could have been poor dosing skills. I will try benedryl/quercitin.

 

Another thing that I am trying is an ERP intensive. Right now Fordham is doing a clinical trial on a one week intensive ERP for OCD kids. The control is that you have to wait a month between the initial evaluation and the therapy trial. I just posted about it in a separate link. I'll post about how it goes. The Fordham trial link is here: http://clinicaltrials.gov/ct2/show/NCT01194076

[PhillyPA]

Have you tried blasting their immune system with multiple ivig's? Getting ivig's every 6 weeks for 6 months? This is an immune system disorder. You have seen relief in the past with immune system disorder treatments. What are the chances that both of your girls got Lyme disease at the same time. Is the D.C. area known to be a Lyme endemic area? I had a conversation with my son's Lyme doctor about two weeks ago. He is one of the top Lyme experts in the country. He said that he has done a study on Igenex Labs and that they are no better and no worse than other labs. He did say that Igenex labs do have false positives on the IGM Western blot. He does not use this lab. If you question the Lyme diagnosis, try sending their blood work to a few different labs and see what comes up. It is very hard to use your logic and your intuition when it comes to deciding what to do to help your child heal - expecially when desperation sets in. Try to think logically, sit quietly and then let your intuition take over. Sit with your questions and see how he makes your body feel. Your intuition will be a great guide to give you the answers that you need. Is Lyme genetic - no. Is pandas genetic - yes. Would your daughters symptoms pop out at the same time (with the first episode) because of the same infection (strep)?

 

One of my biggest regrets was wasting so much time on the lyme diagnosis. The treatment is different. As per my child's lyme doctor - augmentin works well for both lyme and pandas. Azith is not at all good as a Lyme disease drug.

 

Steroids work very well for pandas. You are avoiding them because of the possibility of Lyme. Lyme disease paranoia may be taking you down the wrong path. Send your child's blood work to several different labs to check for Lyme before going down this path.

 

Again, I am only telling you what I have learned from my experience. I understand that you want your child healed now. You just want to make sure that you are on the right path. Think about it - neurological Lyme effecting your children at the exact same time? Does that sit right with you?

 

You are in New Jersey now. If you want the name and number of my child's Lyme doctor, one the best in the world, pm me.

[dcmom]

Philly PA

 

I thought you were treating for Lyme, am I wrong?

 

I fully understand the nature of pandas, and am thinking and treating methodically- yet aggressively.

 

Pex worked- yet it is risky, and hard to get. I will try to get it for them again this spring if we don't have success soon.

 

We did IV steroids last month. It brought them out of crisis-yet not 100%, although they did have illness after.

 

I went to an llmd because I wanted to try the treatment. I have some reservations, and in no way am convinced Lyme is a major culprit here. Yet- if an abx cocktail can work- I am willing to give it a little time. I will not wait forever. I DO NOT want to be wondering if Lyme is an issue forever. Of course, my girls are neg IGG and highly positive IGM- I fully understant the wide range of opinions I would get on that result.

 

My younger daughter was bitten by an infected tick (ugh- had it tested) in late Oct, around the start of her decline. My older daughter ha no known tick bite, yet she is the one with fatigue, some joint pain, and raised RA markers.

 

We lived in NJ for our entire lives, then in leafy Lyme endemic NWDC (I had more deer in my DC yard than in Jersey!!!)

 

At this point in our journey, nothing is off the table. Dr L said something a long time ago that is simple, yet has stuck with me and is my guide... We have to do what works. Wish other docs felt that way.

[PhillyPA]

We treated for Lyme with iv antibiotics for 5 weeks. Because he was so severe with his sudden onset neurological problems, his lyme doctor started treatment before we got our results back. He was tested by many,many different labs because I wanted to be very sure. All of his tests came back negative. At that point, I wasn't pursuing pandas because his titers were low and I thought that that meant no pandas (as per what the psychiatrists and neurologist told me at the time).

 

We are currently patients of Dr. L.

[sf_mom]

DCMom,

 

It is my hope you'll give the Lyme protocol a good six month opportunity to work.... As you may know by now, some kids respond fairly rapidly to lyme treatment and make immediate gains within days of starting new regime. While others take a good 4 to 6 months to see improvement or jump up in baseline. Most LLMD will look for 'just two' good days in the first six weeks of treatment to determine effectiveness of protocol.

 

But I'll say prayer that you luck out and both girl's witness rapid improvement immediately.

 

-Wendy

Edited February 12, 2011 by SF Mom

[Kayanne]

dcmom,

 

I just wanted to let you know that I sent you a personal email. I've been thinking about you and your girls and sending positive thoughts. Best of Luck.

[airial95]

I agree with Vickie - give the ERP a shot. We're using a combination of that and CBT with our son - who is only 3. It's been making progress.

 

Just note - that with the therapy, at least in our experience, it may get a bit worse before it gets better. The reason I say that is because you're no longer going to be "giving in" to the OCD - which will result in some flare ups of anxiety, tantrums, crying, etc... If you can stick with it though - it does get better. We set up a "special chair" for our son to go when the OCD related anxiety gets to be too much, and it has helped - it's his "safe place" where the OCD can't get him.

 

It's reminded me a bit of training a dog thought - when you're training a puppy, you're training the master just as much - modifiying their behavior in interact appropriately with the dog to get the desired results. It's been the same with the therapy - we've found that we've had to modify our behavior and reaction to things as well - it's not just about our son. (for example, OCD tendencies that we normally wouldn't ck becuase they didn't matter - ie only drinking out of a certain cup - while it's easy for us to just always give him his cup, and it makes no difference to the world at large, we've had to step back and aggree to address ALL the OCD, not just the things that give us the biggest problems.)

 

Good luck - it's not an easy decision!