Activation, SSRIs and Luvox dosage

[PANDASmcnuggetsw/fry/coke]

I'm one of those that hasn't been here since last year or so and wish I could be happier to be back. :-( DD is 14 now and after two IVIGs I just don't think we would consider a third. We have an Rx for Luvox at 50mg. and I'm seriously thinking of cutting it in half and starting her on it. We can't get in to the local psych for 3 more weeks for a whole new eval. Up til now, her docs have been far away of course except for one wonderful local naturopath.

 

My qestion is at 143 punds (she is 5'7") Would cutting it in half to 25 mg. be along the lines of what Murphy would reccomend? And the activation I have read of, this is TEMPORARY if it occurs, right?

 

We have never tried SSRIs, I know ymmv, but quite gun shy here.

 

THANKS!

[MomWithOCDSon]

Hi --

 

I can only tell you our experience; I really don't have any idea what Murphy would necessarily recommend because SSRI's typically are not dosed by age or weight. In the end, I think starting low and going slow is always a good idea, but SSRI's require a LOT of patience because it can take several weeks to see the full effects, depending on the person's chemistry.

 

In our experience, if you cut the dosage that your typical psych recommends in half and start with that, you're probably in a good starting place. Why they don't start lower themselves, particularly with a kid with an auto-immune or PANDAS history, I don't know, but if it's up to the parents, then we just have to educate ourselves in that regard. And you want to stick with that dosage for a full 4 weeks, at a minimum, before you make an assessment that you need to increase it. Again, it can take 4 to 6 weeks for an SSRI to reach full efficacy, so getting impatient and increasing the dose faster because you're anxious to see results can backfire on you.

 

With our DS, yes, the activation we saw with a dose that went too high was short-lived; as soon as we realized it was the impact of the SSRI driving his increased anxiety or behaviors and took the dose down, his behavior would chill out again, typically within 48 hours. DS15 is now 5'8", 155 lbs., and his SSRI "sweet spot" is 75 mg. of Zoloft per day; he's been at that dose for more than 2 years now.

 

Hope that helps a bit. Good luck, and try to just hold fast and be patient with yourself, your DD and the meds, if you decide to try it.

[PowPow]

I think, from my one appt with dr m, that she would start even smaller. I saw her with my 135 lb 13 post pubertal daughter & discussed this exact issue. maybe 12.5 mg for a few weeks then 25 then hold a few weeks , then 37 mg, 50 mg. GO WAY SLOW . START WAY LOW. this is hindsight from our bad experience and from our appt in Fl.

[PowPow]

the horrific activation we saw lasted until we got her off it.

on a side note, both my kids take clomipramine, not an ssri, and seem to benefit from it with no activation effects whatsoever.

[PANDASmcnuggetsw/fry/coke]

Thanks ladies and interesting that the Clomipramine is such a help. My understanding is that it is Anafranil, an SRI vs. an SSRI. (I think) A book I have says it is generally not tried first b/c of side effects, but after failed trials with two or more SSRIs, it is one to try b/c it is in a different class.

 

This Luvox we have at 50mg. is actually prescribed by a PANDAS doc, so now I'm wondering whether it should be halved at all . She is a tall girl and at 143, I wonder if halving it is the way to go. What I mean is that he is not the typical psych that does not understand the PANDAS issues, but is very very aware.....

 

Any more thoughts? And thanks for sharing pow pow. I'm glad that bad episode resolved.

 

:-)

[Hopeny]

Sorry I can't add much on the SSRI as DD was not on for very long and it did not work out. However I do think you should consider waiting till you get into see psych to start. The pysch my DD saw monitors every week when a child starts meds, and I think this is standard practice. After a month it was every two weeks and then it was supposed to be monthly. I would think it very risky to start on psych meds without a psych actively monitoring/available.

[MomWithOCDSon]

This Luvox we have at 50mg. is actually prescribed by a PANDAS doc, so now I'm wondering whether it should be halved at all . She is a tall girl and at 143, I wonder if halving it is the way to go. What I mean is that he is not the typical psych that does not understand the PANDAS issues, but is very very aware.....

 

Any more thoughts? And thanks for sharing pow pow. I'm glad that bad episode resolved.

 

:-)

 

I would still halve it, I think. The only thing you have to lose by starting slow and low is a bit of time, but a half dose just might be enough for her, and it would spare your entire family the possible trauma of having her go through an activation.

 

Just my HO . . . .

[MomWithOCDSon]

Thanks ladies and interesting that the Clomipramine is such a help. My understanding is that it is Anafranil, an SRI vs. an SSRI. (I think) A book I have says it is generally not tried first b/c of side effects, but after failed trials with two or more SSRIs, it is one to try b/c it is in a different class.

 

 

Just another story from the trenches here that demonstrates how individual each of our children . . . and their responses to interventions . . . can be . . . . . .

 

Before we knew we were dealing with PANDAS, on the heels of at least 4 SSRI failures initially, our psych at the time moved my DS to Anafranil (it's a tricyclic antidepressant). Our result with that was the absolute worst activation we'd ever seen with him. When we changed psychs and told the new, PANDAS-knowledgable one about DS's history, she said that Anafranil was not usually a good choice for kids with comorbid behavioral symptoms (like OCD plus general anxiety).

[PANDASmcnuggetsw/fry/coke]

Thanks everybody...I think I will definetly halve it to 25 mg. and I'm waiting to hear if her naturopath will monitor her until we get to the psych. He is an M.D. too and knows we have to wait three more weeks to see him. I'm just very concerened that she has been feeling the burden of the severe OCD for too long. Interestingly, she had a B12 shot a couple of days ago and was doing VERY well that eve. Wish we could do that evey day! We might do it once a week, but I still think there is not enough staying power in it for her. Unless there is a cumulative build up effect. Does anyone know if B12 shots do that or do the effects just wear off?

 

THANKS! :-)

[PowPow]

have you tried sublingual b12?

pretty sure it does not buildup, but she could take sublingual often and as needed

[PANDASmcnuggetsw/fry/coke]

No I haven't. Any good brand reccomendations?

 

THANKS!

[PowPow]

I cannot think of any now, but there are drops we used to buy from our llmd and lozenges from a local health food place. They tasted good, like raspberry or strawberry. They go under the tongue for fastest absorption.

I would just get any brand and give it a try.

all you can lose is money &

isn't that a hallmark of being a PANDAS parent, anyway?

[MomWithOCDSon]

No I haven't. Any good brand reccomendations?

 

THANKS!

 

We used SolaRay brand B12 sublinguals for a bit . . . cherry flavored, I think. Then we moved to B6 supplementation instead because we discovered DS had some methylation issues and B12 increased his histamine and therefore increased his anxiety, etc. . . . . . .

 

It's always somethin!

[norcalmom]

Our doc perscribed up to 2 tablets per day (different med) and told us to start with a does of ONE QUARTER of a tablet for 10 days - 2 weeks. If it helps, keep at that does. More is not better. If it does nothing, increase to a half of a pill.. stay at that for 2 weeks, and then to 3/4 for a week or so and if that does nothing, go up to a whole one (which is still only half of a does).

 

Thats just to give you an idea of HOW low and slow. DS is at one pill per day. Not sure it does anything for him. but with other stuff and different antibitoics and supplements we are trying, along with the very slow rate of increase its really hard to tell if it is helping any. And I don't want it to mask any true gains or losses he's having with antibiotics or supplements.