SSRIs

[norcalmom]

we started very low dose of zoloft for DS last week. Teeny tiny pills (lowest dose) broken into quarters - once per day. Its about 6mg/day....but the script is written for up to 3 whole pills per day. (so, up to 12 times what he is getting right now).

 

I need to send Dr an email about when to increase the does. She said it takes a while to see if it is having any effect (2-4 weeks?) . I don't see anything yet. Its been 7 days.

 

If your child is on SSRI's can you please share your experience with ramping up - how long/what dose 'til you noticed a change? My understanding is that they only work about 50% of the time, and if one doesn't work, then you move onto a different one to see if that one will work....could be a very long time before I know if there is a type and a dose that works for DS I fear...

Edited March 16, 2012 by norcalmom

[dcmom]

We made a short attempt at zoloft- and saw no help. It is really hard because you have to go slow, and it can take 6 weeks to work. For us, pandas (while symptomatic) changes so much week to week, that 6 weeks can bring a total change, and we wouldn't know if it was the zoloft.

 

Anyway, dd is maybe 90lbs. Probably was closer to 80 then, it was this time last year. She had just had an exacerbation, and was in relatively good shape, just some stuck ocd. So, she avoided a lot of stuff (that is her compulsion). Our crappy local therapist was not helping, so we asked Dr L if we could try a zoloft "band aid".

 

DD started at 1/2 of that teeny green pill per day. She had a difficult time sleeping for the first few weeks, but that went away. I would say we did the zoloft for almost six weeks. We saw no benefit. I think, around this time she had some ringing in her ears- which FREAKED me out (probably nothing to do with zoloft), and I took her off of ALL meds (including zithromax).

 

I do think momwithocdson will have some thoughts.

 

I would think you would NOT want to titrate up any sooner than six weeks.

 

I am a big believer in psych meds, if they work. It would have been SO nice if zoloft helped. What ultimately helped the stuck ocd was proper therapy at USF.

 

Good luck- keep us posted!!

[MomWithOCDSon]

Our DS15 is taking Zoloft, and he had previously tried a number of SSRI's (unbeknown to us at the time, at far too high a dose!) before being dxed with PANDAS. Though, supposedly, weight and age have nothing to do with SSRI dosages, he's 5'7" and 140 lbs. He's now on 75 mg., but we began at 12.5 mg. and rode it out a full 4 weeks before titering up to 25 mg. Then we doubled from 25 mg. to 50 mg. 6 weeks later, and finally, up another 25 mg. to 75 mg. another 6 weeks later. At one point, during an exacerbation, we tried titering up again another 25 mg. to 100 mg. per day; however, within 2 days, he'd gone "batty," and we realized it was too much for him. So we backed it down to 75 mg./day again, and within another 2 days, the activation had eased off. This 75 mg. dose seems to be his "magic" level.

 

Our DS's first psych, when he carried a dx of "regular OCD" was a good guy and he really cared, but he was not PANDAS savvy nor, we came to realize much later, especially OCD-savvy. He had a tendency to titer up doses significantly within just a single week and rarely waited a full 4 to 6 weeks before increasing a dose substantially. Meanwhile, we didn't know any better, so we trusted him. It was only after we found PANDAS and started bombarding him with rheams of research, and I began pushing back at his SSRI dosage levels and titering schedules, that he began to acknowledge the wisdom of the "low and slow" methodology. In fact, he reached out to Richard Jenike at the IOCDF and had an indepth discussion about meds and dosages with him. After that, even this doc would wait a full 6 weeks on a treatment-sized dose before even beginning to suggest we increase it again.

 

Now, our PANDAS-savvy psych is very mindful of a minimum 4-week time period before increasing dosages, and we feel more empowered as parents to take our own measures if we sense a problem. For instance, she put our DS on a very low dose (about 1/4 the standard treatment dose) of Abilify at one point, and by Day 4, he was coming out of his skin; so we just stopped giving it to him. In the old days, I probably would've desperately tried to get hold of the doc and get their feedback before yanking the med or whatever, but all this PANDAS stuff and the kindness and support of everyone here at the forum has given us a lot more confidence that we know our kid and can make those kinds of calls!

 

Your current dose does seem very low, so I don't know if it might just be too low to see any impacts -- positive or negative -- at this point. When we started at 12.5 mg., we did see some subtle improvements (mostly lighter mood) within about 4 or 5 days. I would check with the doctor about maybe moving up to about that now, maybe? And see if it makes a difference. In our experience, the good news is that if your child inadvertently gets too high a dose, the activation will cease within about 2 days of having stepped the dose back down, so it is not a long-term impact.

 

Good luck!

[MomWithOCDSon]

I probably should mention, too, that our DS is also taking NAC, and his psych is fairly certain that it is the addition of the NAC that makes the lower dose of Zoloft so effective/appropriate for him, despite how voracious his OCD has been at points, his size, age, etc.

 

So, I suppose it's possible that, without the additional support of NAC, my DS15 would need/do well on a higher dose?

 

Frankly, all this is so hard to figure out!

 

Feel free to PM me.

[dcmom]

norcal- Yes- Nancy started at the same dose- 12.5mg/day. Dr Latimer (pandas savvy) started us at this dose. So, possibly you could go up to that now. We did, however, have a hard time sleeping for two weeks- so possibly? starting really low could avoid that? (not sleeping plus pandas is not a great mix)

[Mayzoo]

I recommend waiting the full 6 weeks before tinkering with the dose. Optimal effects are seen in the six week range. Our Neuro asked if I wanted to up the dose within a few weeks, and I had to remind him that optimal is not seen that soon, and we should wait the full 6 weeks. He agreed, but said most people want to see results now, so he frequently agrees to bump the dose faster.

 

SSRIs for adolescents are very much a trial and error, and caution and appropriate time needs to be exercised.

[Bill]

"If your child is on SSRI's can you please share your experience with ramping up - how long/what dose 'til you noticed a change? My understanding is that they only work about 50% of the time, and if one doesn't work, then you move onto a different one to see if that one will work....could be a very long time before I know if there is a type and a dose that works for DS I fear..."

 

My son's response to SSRIs is atypical. We first started him on 12.5mg Zoloft at age eight, not sure of his weight back then. We saw a positive reaction within 2 hours. This was for uncontrollable anger/rage issues though. After several months, we had to raise it to 25mg where it worked for the next 3 years. When it failed, it failed spectacularly. Took us several months and multiple prescriptions to find out that prozac worked. It was 1-2 days before we were confident that it was working (again for raging only). OCD hit my son 3 years ago - same time the Zoloft failed (all connected somehow I'm sure). Neither the SSRIs or all the other drugs thrown at him seem to impact the OCD.

 

Needless to say that most doctors don't believe us when we tell them how quickly he responded. I did run across an article about hyper-response of some individuals to SSRIs though, guess my son is one of them.

 

bill

Edited March 16, 2012 by Bill

[Iowadawn]

Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn

[norcalmom]

Thank you all so much for this info. I didn't really understand just how slow you need to go. I think the Doc started him so low because she asked about drug sensitivity with him or other family members and I mentioned that I am very sensitive to things like caffine - Love my java, but can't have more than one cup, and anything after 10:00am will keep me up to 2 or 3 am. Maybe that is why she started at half the normal low does for pandas kids - just in case. I'd rather be safe than sorry. I've waited this long to start any phych meds, whats a few more months. (said like a pandas mom who's DS has been out of town skiing with Dad all weekend!!)

 

I've seen absolutely no effect yet - but no bad reaction either. We sometimes do NAC - I am going to get more religious about getting him that every day if it works well with the SSRIs- that was actually something I thought of, but forgot to ask you all so thanks for letting me know those are OK together.

 

After reading all your experiences I think we will wait another week before asking if we can go up to half a pill. Those pills are soooo tiny, I'm not really sure what dose he is getting since they are too small to judge, and when you split it that many times - so much of it turns to powder!

[fightingmom]

Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn

 

SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad.

Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did.

[EAMom]

Is anybody's child on Prozac?

 

My dd is on a low dose (10mg/day--but we are trying to wean her off).

 

She's been on prozac since the 2008, during her big PANDAS explosion. Originally the eating disorder clinic put her on Lexapro. That wasn't a good ssri for her (akathesia, and then also aggression). We started prozac due to withdrawal problems with lexapro...and stuck with a low dose as it seemed to help.

 

We think it does help her PANDAS/ocd (we are taking her off for other reasons, her cholesterol was high, and her doc thought the prozac might be a factor).

[Iowadawn]

Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn

 

SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad.

Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did.

 

Our son's response to a LAUNDRY list of psych meds has been a combination of disastrous paradoxical effects or little effect. Our psychiatrist, who dx'd the PANDAS (we found the Lyme later) told us that it is very difficult to find a drug that works when psychiatric behaviors have infectious etiologies. The one drug that has helped and no downside has always been Namenda. He said he has treated thousands of kids and Evan's ranks in the top 3 or so in complexity & difficulty in finding something that helps. Our dubious distinction. Ivig has been what has helped most as we treat the Lyme & co. He is on Geodon & Depakote, along with the Namenda right now. Dawn

[sf_mom]

Is anybody's child on Prozac?

 

My dd is on a low dose (10mg/day--but we are trying to wean her off).

 

She's been on prozac since the 2008, during her big PANDAS explosion. Originally the eating disorder clinic put her on Lexapro. That wasn't a good ssri for her (akathesia, and then also aggression). We started prozac due to withdrawal problems with lexapro...and stuck with a low dose as it seemed to help.

 

We think it does help her PANDAS/ocd (we are taking her off for other reasons, her cholesterol was high, and her doc thought the prozac might be a factor).

 

EAMom: I know this is not related to original topic but one of our LLMDs has made a strong correlation to parasite in kidney's and high cholesterol. He treats the parasite and cholesterol levels normalize.

[EAMom]

Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn

 

SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad.

Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did.

 

Our son's response to a LAUNDRY list of psych meds has been a combination of disastrous paradoxical effects or little effect. Our psychiatrist, who dx'd the PANDAS (we found the Lyme later) told us that it is very difficult to find a drug that works when psychiatric behaviors have infectious etiologies. The one drug that has helped and no downside has always been Namenda. He said he has treated thousands of kids and Evan's ranks in the top 3 or so in complexity & difficulty in finding something that helps. Our dubious distinction. Ivig has been what has helped most as we treat the Lyme & co. He is on Geodon & Depakote, along with the Namenda right now. Dawn

 

Memantine (Namenda) is mentioned in this article. http://www.ocfoundation.org/glutamate.aspx

 

here's wiki http://en.wikipedia.org/wiki/Memantine

 

Has any one else tried it?