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I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much.

 

Lisa

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Hi Lisa,

Here is what Dr. T says on FB:

 

Rosario Trifiletti: If your child has PANDAS, there are very frequent problems with certain

SSRI's, especially at low doses

 

BAD - Zoloft, Prozac, Paxil - especially true at low doses. At low doses,

these SSRI's have a "Ritalin-like" stimulant effect and often make children

with PANDAS "manic".

 

Usually good - Celexa, Effexor

 

Best - Luvox .... this is my go to SSRI if one absolutely MUST be used -

 

Also remember SSRI's typically take 2-4 weeks to work

 

Dr. T

 

Good luck!

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Hi

you absolutely should tell the prescribing physician of those sad and want to die feelings, even if they are infrequent. Those very side effects are why many SSRI's have FDA regulated black box warnings about the dangers that can potentially occur when used in young people....

Not all react to them that way, and I know they can be a life saver for many...but the potential for suicidal or self harm behavior is there and needs to be mentioned, even though it seems to be documented as highest in older teens.

 

My son does not have diagnosed PANDAS but is PITAND/Tourette/OCD dx....... and Luvox had *horrible* side effects in him. He went from zombie to psychotic in alarming cycles and the depressive want to die feelings were intense. As soon as he came off it, things improved and we actually helped his OCD via natural supplements, acupuncture, biofeedback etc....

But

again, I realize sometimes rx intervention is essential for severe OCD so am not suggesting not to use them....just to discuss, in detail, any side effects with the doctor and research them yourself.

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Zoloft was effective for my daughter for a while. Now it doesn't seem to work well anymore. Added in abilify. Life saver and huge mistake all at the same time. It really helped her come back to us but the side effects are awful!!! Weaning off it now. Good luck.

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Thanks for the feedback! I will maybe ask for Celexa to try in him. We have done the just PANDAS route for 2 years, and just felt he needed something to help a bit with the therapy and all. He is a jumpy kid by nature,, so not sure if he is worse that way or not. I do keep an eagle on his emotions, too. So that is why I want to mention this to the doctor. He is totally on board with PANDAS (doesn't treat, but doesn't poo poo it, knows a lot about it) so I am sure he will be very willing to work with us.

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Strictly experientially, I would have to counter Dr. T.'s notes regarding SSRI's, though I wonder what "low dose" means in his terms.

 

My DS has been on low-dose Zoloft for over a year. We have had none of the negatives . . . only positives. I also know that Zoloft (sertraline) is an SSRI of choice for pediatric OCD patients in the Storch/Murphy program at USF, when an SSRI is indicated and accepted by the family.

 

We had also used low-dose Lexapro successfully for a few years before we knew our DS had PANDAS; it was also very helpful. Lexapro is just another formulation of celexa . . . same components, different order.

 

Just start very low and very slow, and if the prescribing doctor is not very well acquainted with PANDAS, take their prescribed dose and halve it again! ;)

 

Good luck!

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Strictly experientially, I would have to counter Dr. T.'s notes regarding SSRI's, though I wonder what "low dose" means in his terms.

 

My DS has been on low-dose Zoloft for over a year. We have had none of the negatives . . . only positives. I also know that Zoloft (sertraline) is an SSRI of choice for pediatric OCD patients in the Storch/Murphy program at USF, when an SSRI is indicated and accepted by the family.

 

We had also used low-dose Lexapro successfully for a few years before we knew our DS had PANDAS; it was also very helpful. Lexapro is just another formulation of celexa . . . same components, different order.

 

Just start very low and very slow, and if the prescribing doctor is not very well acquainted with PANDAS, take their prescribed dose and halve it again! ;)

 

Good luck!

 

Thanks, Nancy! Yep, I am so thankful he is knowledgeable about PANDAS so he was fine with me cutting the starting dose in half (that is where we are now) and waiting the full 10 weeks to check in I feel like he is on our team so I am sure will be helpful. He even emails back personally, imagine that! Our pediatrician pretends we don't exist, I think. lol But the part I love the best is he is totally open with conversing with other doctors on the team, and taking their input into consideration. I think the meds can help Ian, we just need to find the right one. it is just part of the coping strategy we are dealing with now. I will keep the lexapro in mind, too and see which one he prefers.

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I just thought of something. I give Ian melatonin at night. That is when his sad times seem to happen, when they do. I wonder if there could be any reaction to that and the Prozac? When he took too much melatonin he used to get very agitated even before Prozac. It just occurred to me , so I am curious....

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I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much.

 

Lisa

 

5mg is extremely low dosage! Not sure I would judge response on this amount.My son has been on 20 mg for nearly a year and it really helped his OCD- it takes 2-4 weeks to kick in. Not sure I would abandon Prozac just yet without increasing dosage first to note response.

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I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much.

 

Lisa

 

5mg is extremely low dosage! Not sure I would judge response on this amount.My son has been on 20 mg for nearly a year and it really helped his OCD- it takes 2-4 weeks to kick in. Not sure I would abandon Prozac just yet without increasing dosage first to note response.

 

well, he never had episodes of sadness like this before or the 20 straight minutes of sobbing from the core of his being saying he wants someone to just kill him. So that really does scare me. He would get frustrated with his OCD before, but never sob like that. And he gets sad for no reason, really quiet and down, which he never would do before either. I am watching him closely because of the potential for side effects and I do notice these as new things.

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I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much.

 

Lisa

 

My dd is on 15mg/day prozac right now (90 pounds). She originally was on Lexapro (don't remember dose) which helped a bit with the OCD but also gave her akathesia (and then aggression on higher doses)...but her PANDAS was still pretty full-blown then (hasn't discovered Azith yet).

 

She was on 10mg/day Prozac since 2008. We recently (a couple of months ago) tried dropping her down to 5mg/day (in the hopes of getting her off, to see if she really needed it). On 5mg her anxiety really spiked (so presumeably, she was under her therapeutic dose). She really noticed the difference. So, now we're trying 15mg (to see if it helps her OCD/anxiety better than 10mg/day).

 

Overall, dd's PANDAS is about 90% controlled. She's quite functional, on the honor roll at school, has some friends. But, she still has some OCD (mainly doorways, nothing that consumes hours/day) and anxiety...she doesn't seem to want to work on the doorway OCD. (Note: she may have preexisting anxiety- non-panas, who knows?) So, Prozac has helped her anxiety, but it hasn't completely "cured" her (or brought her to 100%). I don't know if another SSRI would be better...but after Lexapro, I am reluctant to really change. Our psychiatrist did mention adding on a bit of Zoloft to the prozac (vs taking her off prozac for another).

Edited by EAMom
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Just our experience, Our son reacted positively and immediately (within hours) to Zoloft. He stayed on Zoloft (25mg) for 3 years before all ###### broke through again. You could say that when it stopped working - it was spectacular! It then took us months to discover that low dose Prozac (40mg) worked. It took 2 days before we were sure the Prozac was working. He is an anomaly for his rapid response to these drugs.

 

These only controlled his anger/raging. The OCD started at the same time the Zoloft failed. No prescription of any type helped with the OCD. He is slowly making progress against the OCD while he is getting better overall (Lyme/bartonella/PANDAS).

 

I also think that Dr. T.'s generalization must be considered as just that perhaps - a generalization.

 

bill

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I posted this in the OCD forum, too. My son, Ian, age 9, is dealing with OCD issues starting from PANDAS. We are treating that with IVIG and antibiotics. But we are also trying to treat the OCD too. He goes to therapy and we are trying a low dose SSRI, prozac. The prozac doesn't seem to be really working that great for him. His mood seems a bit better and the OCD seems a bit better too. But he also goes through spells of feeling very sad and that he just wants to die. Not all the time, but often at night maybe every couple of weeks. It is enough that it concerns me. He is only on 5 mg. But we see the neurologist on Monday. I want to tell him about this and see if perhaps a different medication will work better for him. What I am wondering is what other SSRIs are prescribed in children? does anyone have any feedback on what has helped their child? Thanks so much.

 

Lisa

 

Just food for thought...SSRI's have anti-inflammatory properties. I wonder if that is why they can be helpful for PANDAS kids. http://en.wikipedia.org/wiki/Selective_serotonin_reuptake_inhibitor

 

Anti-inflammatory and immunomodulation

 

Recent studies show pro-inflammatory cytokine processes take place during depression, mania and bipolar disorder, in addition to somatic disease (such as autoimmune hypersensitivity) and it is possible that symptoms manifest in these psychiatric illnesses are being attenuated by pharmacological effect of antidepressants on the immune system.[94][95][96][97][98]

 

SSRIs have demonstrated immunomodulatory and anti-inflammatory effects 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.[99][100][101][102]

 

Future serotonergic 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.[103]

 

Of course they aren't just anti-inflammatory, they have lots of other properties, which could make them more beneficial, or problematic, depending on which way the brain chemistry goes.

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