What to do next? Zoloft or Steriod Burst

[NMom]

Well here we are again. My son, 7, was diagnosed with PANDAS last summer and responded very well to antibiotics and CBT therapy for the OCD. The day after school ended the OCD ramped up again but this time in the form of obsessions that he just cannot stop. Some of the obsessions have gone but all seem to revolve around one or two key topics. We started him on Zoloft about 10 days ago on the advice of our pediatrician and the psychologist who helps us with CBT therapy. I'm trying to be objective but it seems to me that the day after he took the first pill he started having much more depressed thoughts (said he wished sometimes that he didn't exist) and more violent, agressive obsessions. THis is not my little boy. I feel like I don't even know this child. He told me tonight that he doesn't want me around. Actually said some very scary things. I'm at a loss- no idea if this is the zoloft talking or if I've been wrong about PANDAS this whole time. Our therapist brought up the possibility of bipolar which makes me feel totally hopeless. I just don't know where to turn next. We have an appt with Dr. Latimer in August but that seems like a lifetime away right now. Any advice would be appreciated.

[911RN]

Well here we are again. My son, 7, was diagnosed with PANDAS last summer and responded very well to antibiotics and CBT therapy for the OCD. The day after school ended the OCD ramped up again but this time in the form of obsessions that he just cannot stop. Some of the obsessions have gone but all seem to revolve around one or two key topics. We started him on Zoloft about 10 days ago on the advice of our pediatrician and the psychologist who helps us with CBT therapy. I'm trying to be objective but it seems to me that the day after he took the first pill he started having much more depressed thoughts (said he wished sometimes that he didn't exist) and more violent, agressive obsessions. THis is not my little boy. I feel like I don't even know this child. He told me tonight that he doesn't want me around. Actually said some very scary things. I'm at a loss- no idea if this is the zoloft talking or if I've been wrong about PANDAS this whole time. Our therapist brought up the possibility of bipolar which makes me feel totally hopeless. I just don't know where to turn next. We have an appt with Dr. Latimer in August but that seems like a lifetime away right now. Any advice would be appreciated.

 

It is doubtful that 1 day of Zoloft would cause depressed thoughts. SSRI's take several weeks to take effect and up to 3 months to tamp down OCD behaviors. He may have been headed for the depressed thoughts and initiation of Zoloft was just coincidental. If you continue on Zoloft and he just worsens rather than getting better- could be Zoloft is not a good fit. Many say PANDAS kids worsen on SSRI's? My personal opinion is that a 7 year old cannot be Bipolar. This is voodoo psychiatry when they cannot explain a child's presentation so they throw out a dx like Bipolar. Bipolar was always considered a older adolescent/young adult onset- in years gone by...they have just recently started diagnosing children with Bipolar.If you read some of the literature and research on this- there is much disagreement within the mental health community that children can be or should be diagnosed Bipolar.

 

Anyway, is he still taking antibiotics for PANDAS? Has there been any recent illness for your son or family that may have caused a PANDAS flare? Severe depression and obsessions in a young child is heart breaking....I'm glad you have appt with Dr L coming up in August. Hopefully, there will be some answers soon for you and your child. A steroid burst certainly seems reasonable to see if you can break him out of this cycle if docs are willing to order??!!

 

Hang in there- this is tough stuff, I know:(

[michiganpandas]

Hi

When my daughter first started taking zoloft she also said some really scary and heartbreaking things and it scared her, too and made her sad.....it has now stopped......she was soooo bad before taking the zoloft so within the first week I can't make a judge of what she was saying.....but, it was about after the 2nd week until about the 9th week where she would tell me the sad things....(like, mom, i'm afraid that i don't love you)....none of this was my daughter, but boy was it hard to hear....then she would obsess over the fact that she felt that.....also said things like "oh, it's weird how i know i am here and alive, but it does not really feel like i am....how do i know i'm really alive?".

 

We are still on zoloft (20mg)...but, she does not say these things anymore....but, still does have the ocd thoughts/fears type of thinking.....everything else is better and i think the zoloft has helped in the long run...i am considering to "up" the dose a little and see if it kicks out the ocd/fears. I have no idea if it was the zoloft or the pandas that was making her think that way (everyone claims it takes about 4 weeks to kick in, but maybe while it was kicking in is when those thoughts came out??

 

not much help from me, sorry! but, just our experience.

[MomWithOCDSon]

Hi!

 

I would tend to agree with the others . . . your son's increasingly negative thoughts one day after beginning Zoloft is more likely coincidence than related. Our DS14 has been on and off SSRIs over the last few years, and the quickest we've seen any impact (positive or negative) has been about 7 days, with full efficacy at about one month or maybe a little more.

 

He's currently taking Zoloft and it has definitely been helpful.

 

The doc who prescribed the Zoloft for your DS, is he/she "PANDAS-knowledgable"? What is the dosage?

 

We've found that, even with our PANDAS-knowledgable (but admittedly, not expert) pediatrician and psych, they can tend to prescribe the "standard" dose of these types of meds without a full understanding of the parameters more appropriate for PANDAS kids (i.e., much lower doses, sometimes by half). So, depending upon the dosage you're currently giving your DS, if the negative thoughts/behaviors continue for the next several days, you might consider cutting the dose in half and see what happens then. It's possible he's being "activated" by the current dosage, in which case lowering it should be helpful.

[dcmom]

Ugh- Nmom-

 

My daughter was on, then off, then on, then off Zoloft this spring.

 

It is SO hard to figure out if it is working, since, like the others said, it can take up to about 3 weeks to see a change. (does anyone know if it is the same time frame when weaning off?)

 

We put dd on, and felt it did nothing after about 2 months, then took her off (our neurologist took the lead here- and we agreed)- but we never did raise the dosage- she was only on 12.5 mg/day.

After taking her off, we thought, hmm, maybe it didn't help the ocd- but did it help her mood?

So we tried again for about three weeks, with no real change.

Then school ended- and we have decided to take her off of EVERYTHING- to see where we are.

 

During this on/off time with zoloft, of course, dd did have strep.

 

So- my advice-

 

With pandas it is close to impossible to figure out if a longer term med works- because (in our case, anyway) PANDAS is not static. My kids are always either getting worse, or better. It is so hard to know if it is from the zoloft....

 

I would consider stopping the zoloft, and trying the steroids- see where you are (they are quicker and more dramatic IMHO). After you feel he settles, if you still need it, try the zoloft. It IS best to try one thing at a time- however- we have not followed that when in crisis, and needing improvement right away.

 

Both of my girls have gotten depressed. My little one has said- I want my life back. This is no way to live, I want to die. etc. It is very painful, esp with the little ones, because you contrast that with how carefree they should be. But- take comfort in the fact that, my girls did get better, and so will your baby. It will take time plus medical intervention (steroids, zoloft, whatever). Unfortunately, I do always remind myself that time IS always a part of the equation.

 

Anyway- do any of the moms know- does it take 3 weeks to see a return of symptoms after weaning from zoloft (even if only on it 2 mos)?

 

I may start another thread....

[NMom]

Thanks for all your replies. My son started with 12.5 mg of Zoloft for one week and then we increased to 25 mg about 3 days ago. I went back to 12.5 mg today. I feel like I don't know him at all right now. He's not sleeping well...was always a pretty good sleeper. His mind is racing at night - he can't settle down and if he wakes up then he can't get back to sleep. He's talking about hurting or killing people or animals. I know these are common OCD obsessions and I've done CBT 'homework' around these things and am confident that he wouldn't act on them. I know that they probably come from frustration, anger and depression...but so hard to hear. The strange thing is that he's actually very functional. He can go play with friends, watch tv, go to camp, etc. but when he comes home he has to tell me all the obsessions he's had. I guess my biggest fear right now is that this is not PANDAS. Strange..I know. But if these are not PANDAS symptoms, have we been chasing the wrong thing all this time while he suffers? I cannot get the bipolar idea out of my head. He does seem a bit manic right now...his obsessions also seem to be sexual (as much as he knows about that right now which is very little) and he has so many symptoms of a manic episode...but these also seem to be OCD and PANDAS symptoms. I feel so lost right now.

[KaraM]

I remember struggling with this decision, too. My dd9 had done really well just on Zithromax for about 9 months, then the OCD and other PANDAS symtpomss started to come back/did come back over the winter. We thought intially it was due to exposure to brother with strep. But when we got his strep under control and she did not improve we had to decide what to do next...steroids or SSRI. I did not want to do both at the same time, because I did not feel like I would know what was working if something did. We decided to try the steroid burst first, for several reasons. One being that, as opposed to SSRI's which can take several weeks to months to start working, the result of the steroid burst would hopefully be more obvious, sooner. It was also a short term treatment, as opposed to SSRI's, which you never know how long you'll need to be on them. I also felt that, if I truly believed myy dd had PANDAS, I had to stay on the PANDAS path and exhaust my "PANDAS" treatment efforts before going down the "traditional" OCD route. And finally, I was afraid of the SSRI's making things worse.

 

Side note: Last year, by dd also had depression, rages, and bi-polar like behavior...she did not have it prior to starting the steroid this time around.

 

So we did a 21 day steroid burst. She tolerated it well mood wise, but her OCD did not improve. When she was done with the steroids, however, everything got worse. In addition to the OCD, the depression and rages, bi-polar stuf started to return as well.

 

After this, we saw Dr. B. again. He was surprised the steroids did not help. But instead of saying try an SSRI, he said we had to consider whether there were any other underlying infections. My dd appeared completely healthy, physically, to me, so I was in shock when we got the results back from the additional testing. She was positive for Bartonella.

 

My understanding is that steroids are not great if you have Lyme or other tick born illness. So if I could go back and time (and what I would do if I were in your shoes), I would have done the testing for other infections/autoimmune disorders prior to the steroid burst. If neither of those helped in terms of diagnosis or treatment, then I would go the SSRI route.

 

I hope this helps.

 

Have you tested for other infections already?

 

Kara

[MomWithOCDSon]

He's not sleeping well...was always a pretty good sleeper. His mind is racing at night - he can't settle down and if he wakes up then he can't get back to sleep. He's talking about hurting or killing people or animals. The strange thing is that he's actually very functional. He can go play with friends, watch tv, go to camp, etc. but when he comes home he has to tell me all the obsessions he's had. He does seem a bit manic right now.

 

Hang in there, NMom. For what it's worth, this does sound very similar to the activation result we were getting with our DS when our first psych increased the SSRI dosage and we didn't know enough to say, "No." Perhaps dropping the dose will give you some relief in that regard. I would stay at the low dose for a full six weeks before increasing it again, if ever. That's the full efficacy window of an SSRI.

[T_Mom]

NMom, I am so sorry you are going through this--Some great parents have weighed in on this so far. I just want to add that your first statement struck me. That you HAVE seen improvement on antibiotics. (I may have missed this, but is he still on them?) IF he had a noticeable improvement on antibiotics, then -- if it was me -- a steroid burst would be my next line of attack. Our older d had a noticeable improvement w/ antibiotics and following that, steroids were a life saver -- more then once. Just my 2 cents worth--all the best to you.

[NMom]

Thanks again to all of you that respond so quickly! Your input really helps me focus on a path forward. My son did respond very well to antibiotics last year and has been on a maintenance dose since then. I increased his dosage when this all started but didn't see much improvement then so we went back to the maintenance dose ( concerned about how much his gut can take). I just found out that one of his martial arts instructors is just now recovering from his second round of strep which means that the my son may have been exposed around the time this all started - hard to tell but worth noting. I agree with many of you about following a PANDAS strategy for an exacerbation - we got a bit off track. It's hard to remember sometimes that even the best doctors do not understand PANDAS. I reduced the SSRI yesterday and stopped it altogether today. I also increased the antibiotics again starting yesterday. The psychologist we are working with identified that many of the urges and obsessions he's struggling with are tics (Tourette's) vs OCD - which explains why the ERP therapy we've been doing wasn't working on some things. He responds very, very well to ERP therapy. So we started practicing relaxation techniques last night when the obsessions start taking over. I'm not ready to celebrate yet but I can tell that he's a different kid today. He's more relaxed and has had very few issues today. I'm going to watch over the next week or so and then start the steroid burst if we don't see continued improvement.

 

We have not done testing for additional infections except for some intial Lyme testing through our pediatrician. I think that may be a next step though - I want to know exactly what we are fighing!

 

On a personal note..thank you for the encouragement. It's hard to describe how bad I felt a few days ago watching my son suffer. Thank you for taking the time to reply.