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Hi all.

 

Am probably going to take DS to a new doctor, who I am assuming will want to start SSRIs. This would be a first for him.

 

 

DS is probably pandas and probably Lyme. Is definitely MTHFR C677T homozygous and methylfolate has helped a lot, but not all the way.

 

Anyway, based on others' experience, what should I say when SSRIs are offered? Are they worth a try, in very small dosages? We'd love to get some relief from the tics and OCD while working on longer-term issues. He's also started CBT.

 

Thanks!

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Hi lfran --

 

As you probably know from having read here, lots of kids have lots of different reactions to SSRIs, so the decision to try one is not easy. But if your DS's quality of life is being severely impacted, and the other interventions are not getting him where he needs to be in terms of enjoying his life, then, IMHO, a low-dose SSRI is worth a try. If only as a temporary aid in the journey toward a full medical recovery.

 

My DS takes Zoloft, which has been well-studied and is generally highly regarded as a help for kids in terms of OCD; so far as I know, however, it doesn't impact tics. USF (Dr. Storch and Dr. M.) use Zoloft sometimes with kids in their practice.

 

Here's the thing, though. Unless the doctor you're seeing is VERY PANDAS/PANs savvy, chances are that even what they consider a "low dose" may not be in terms of your kid's system/wiring. We learned this the hard way, even with a psych who knows and accepts PANDAS. They just find it hard to believe that our kids can get activated even by what they consider to be an exceptionally low dose.

 

The other issue is that, when starting with a low dose, sometimes parents (again, speaking from personal experience) and even the doctor can get impatient for results and, not seeing any within a week or so, be tempted to titer up an SSRI dose too quickly. And that can have some significant consequences in our kids, too.

 

So, if you feel trying an SSRI is the right choice for your DS, then I would start very low and slow; SSRI's generally are not dosed according to age or weight, so that's not much of a guideline. Personally, though, I would immediately halve any dose and non-PANDAS or quasi-PANDAS savvy doctor were to prescribe, and leave that half dose in place for a minimum of 4 weeks before taking any steps toward increasing it. It can take up to 6 weeks for some SSRIs to reach their full potency, so if you're seeing good results at the low dose, or even no results at all, again, I would leave it where it is for a minimum of 4 weeks up to 6 weeks before trying to titer up. And if you do titer up, I would leave that new dosage in place, again, for a minimum of 4 to 6 weeks before moving it again.

 

Unless, of course, you see your DS become "more" of the things you're trying to help quell with the SSRI: more anxious, more OCD, etc. Then, chances are, the SSRI is activating him, so if the activation occurred after you titered up the dose, you can drop it back down to where it was before and the activation should ease off within 24-48 hours. Or, if he becomes activated even after just the first, very low dose, again, you could stop giving it to him, and the increase in behaviors should ease off within a day or so.

 

Like most everything else with PANDAS/PANs, this type of treatment isn't an overnight answer, and it can take some trial and error to get it right. And it takes a ton of patience since the goal of the SSRI is to help slow down the serotonin uptake in the brain, leaving more available for more sustained periods, and that takes time. Hence the slow "full potency" window of 4 to 6 weeks.

 

Good luck with your new doctor, and with the CBT. I hope that's going to be ERP (exposure response prevention), since that's pretty much the best proven therapy for OCD. :D

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Hi MomwithOCDson -

 

What would you consider a low dose of Zoloft for a PANDAS patient? Thanks.

 

:D I smile because I asked Dr. Eric Storch of USF that very same question a couple of years ago, after a panel he was on at the IOCDF conference, and he wisely refused to give me a quantitative answer! But he is, of course, a doctor and he has to protect himself.

 

So, let me say first that I am not a doctor, or any kind of medical professional, and you should seek out someone who has not only experience with this but also the credentials to back up their recommendations and/or prescriptions. Based on experience only, as a parent of a PANDAs kid who's taken SSRIs in the past and is currently taking Zoloft, I would say, depending on your child's medical and psychiatric history, a Zoloft dose between 12.5 and 25 mg. would be a "low dose" level of trial for that particular med. My DS began Zoloft at 25 mg., but he was not only older and larger at the time (12 yo and about 110 lbs.), but he also had previously taken another SSRI (Lexapro) successfully for a period of time. So we had all that history to go on.

 

Honestly, I would start at the lowest possible dose and titer up slowly (every 4 to 6 weeks) until you find the "sweet spot" where it helps maximally but doesn't push the kid into activation. Know also that other supplements and/or meds can further enhance or detract from SSRIs, so you want to be careful about such things as inositol, St. John's Wart, etc. and generally stay away from those more "natural" serontonin remedies if you're moving on to a prescription med for addressing the same issue. Our doctor also told us that because n-acetylceisteine (NAC) impacts the precursors to serontonin, a child taking NAC will generally need a lower dose of SSRI, as well. So there are lots of possible things to take into account and get good guidance on when taking this particular step.

 

And remember that every SSRI is dosed differently, so what qualifies as a "low dose" for Zoloft wouldn't necessarily be considered "low" for another one, such as Lexapro, Prozac, etc.

 

Good luck!

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I agree with everything that Nancy has said. Our neurologist is very PANDAS savvy and was fine with starting my son on a low dose of prozac, 5mg. We left him on that for 2 months before upping it to 10. And we have left him at that level for now. He is tolerating it well. There is some talk of maybe upping it a bit this next appointment in Feb. He is also in intensive therapy, and the prozac has helped quiet the OCD enough that he can work on that better than without meds. If we up it, it would only be another 5 mg. Our neurologist also feels children should only be on it for a couple of years as they work through therapy and get a handle on the OCD. We will be going into one year in a few months. So, it has helped my son to an extent. It does nothing for tics. I think the way to go is low and slow. I was open to trying it because he was still struggling and we needed some relief. It doesn't mean he will be on it for life. But quality of life is important.

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I am by no means an expert but my DD has one copy of 677T. LLM posted a great article on this once from I think a publication called the Nutmeg, anyway it described how there is an impact from the 677T mutation on serotonin. From what I have understood, people with this mutation do not process serotonin properly, and thus SSRI's need to be very carefully administered and monitored by someone who understands the effect of 677T. My DD was on tiny dose of Zoloft, I think 12.5 MG, she started super scary overheating and came home from playing tennis telling me her body would not stop shaking.

I got very worried about serotonin syndrome, although psych said she did not think this was it, and we took her off. We have had good success with just abx and vitamin D3, and we are starting methylation soon. My understanding was that if you are using methylation and SSRI's it can also be very dangerous.

I also was quite upset to learn that Biaxin which DD takes interacts with Zoloft, the psych knew this but didn't mention to me until we had the problem, she did not think it was significant I guess but perhaps that is what caused the problem it is hard to know.

If your child needs it though would be best to work with someone who understands the mutation and the impact. And personally also do your own research on the internet about drug interactions, I wished I had.

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I am by no means an expert but my DD has one copy of 677T. LLM posted a great article on this once from I think a publication called the Nutmeg, anyway it described how there is an impact from the 677T mutation on serotonin. From what I have understood, people with this mutation do not process serotonin properly, and thus SSRI's need to be very carefully administered and monitored by someone who understands the effect of 677T. My DD was on tiny dose of Zoloft, I think 12.5 MG, she started super scary overheating and came home from playing tennis telling me her body would not stop shaking.

I got very worried about serotonin syndrome, although psych said she did not think this was it, and we took her off. We have had good success with just abx and vitamin D3, and we are starting methylation soon. My understanding was that if you are using methylation and SSRI's it can also be very dangerous.

I also was quite upset to learn that Biaxin which DD takes interacts with Zoloft, the psych knew this but didn't mention to me until we had the problem, she did not think it was significant I guess but perhaps that is what caused the problem it is hard to know.

If your child needs it though would be best to work with someone who understands the mutation and the impact. And personally also do your own research on the internet about drug interactions, I wished I had.

 

I'll add that my DS is more heat sensitive since starting Zoloft, also; this is a pretty well-documented side effect in some of the population. So, especially during a hot, humid summer, DS always has a water bottle in hand, and we don't spend excessive periods doing high-energy exercise is high temperatures.

 

Yes, I remember LLM's article and heartily agree that none of these interventions and/or therapies operate in isolation. So we need to be mindful and watchful of all the pieces as best we can. Reminding me about the methylation and the MTHFR mutations again, I think that's an angle that, in addition to keeping an eye on it with our kids, we need to be bringing that up with our docs and/or psychs who are potentially prescribing these meds. Several years ago, again on an IOCDF panel, Dr. Storch commented that kids with "comorbid" behavior profiles -- OCD combined with TS, ASD, Asperger's, General Anxiety, ODD, depression, etc. -- tend to respond better to lower doses of SSRIs. At the time, he wasn't even addressing PANDAS/PANs in this session for therapists and practitioners, and I remember being struck not only by this opinion and how compatible it seemed to be with PANDAS/PANs kids, but also by the chorus of "Oh yes!" and "I've seen that, too!" among the other doctors sitting in the audience in the room!

 

Things that make you go "Hmmm:" Perhaps what Dr. Storch and company are seeing, at least at times, is a response to SSRI's by kids with methylation issues? Anyone want to run that up the flagpole with him and/or Dr. M., or know if they have ever considered this particular point?

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Thanks for the info. What you are saying makes a lot of sense to me from what I have seen with my own DS. He is probably having some of the side effects that you mention. He always has had issues with being too hot and not able to cool off. Did not know that was a side effect. It has been worse (even in the fall weather) but I did not put it together. Also Dr. T asked us if we were having any side effects from the SSRI and I wasn't really sure (he did not prescribe it). I don't think it is doing anything to help with DS anxiety or tics. Maybe very mildly with the OCD. In fact, his symptoms have gotten worse. When you say PANDAS kids get "activated" what does that mean?

 

Hpeny -- Just wondering how much vitD3 you use?

 

Thank you very much for your help.

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I am by no means an expert but my DD has one copy of 677T. LLM posted a great article on this once from I think a publication called the Nutmeg, anyway it described how there is an impact from the 677T mutation on serotonin. From what I have understood, people with this mutation do not process serotonin properly, and thus SSRI's need to be very carefully administered and monitored by someone who understands the effect of 677T. My DD was on tiny dose of Zoloft, I think 12.5 MG, she started super scary overheating and came home from playing tennis telling me her body would not stop shaking.

I got very worried about serotonin syndrome, although psych said she did not think this was it, and we took her off. We have had good success with just abx and vitamin D3, and we are starting methylation soon. My understanding was that if you are using methylation and SSRI's it can also be very dangerous.

I also was quite upset to learn that Biaxin which DD takes interacts with Zoloft, the psych knew this but didn't mention to me until we had the problem, she did not think it was significant I guess but perhaps that is what caused the problem it is hard to know.

If your child needs it though would be best to work with someone who understands the mutation and the impact. And personally also do your own research on the internet about drug interactions, I wished I had.

 

I'll add that my DS is more heat sensitive since starting Zoloft, also; this is a pretty well-documented side effect in some of the population. So, especially during a hot, humid summer, DS always has a water bottle in hand, and we don't spend excessive periods doing high-energy exercise is high temperatures.

 

Yes, I remember LLM's article and heartily agree that none of these interventions and/or therapies operate in isolation. So we need to be mindful and watchful of all the pieces as best we can. Reminding me about the methylation and the MTHFR mutations again, I think that's an angle that, in addition to keeping an eye on it with our kids, we need to be bringing that up with our docs and/or psychs who are potentially prescribing these meds. Several years ago, again on an IOCDF panel, Dr. Storch commented that kids with "comorbid" behavior profiles -- OCD combined with TS, ASD, Asperger's, General Anxiety, ODD, depression, etc. -- tend to respond better to lower doses of SSRIs. At the time, he wasn't even addressing PANDAS/PANs in this session for therapists and practitioners, and I remember being struck not only by this opinion and how compatible it seemed to be with PANDAS/PANs kids, but also by the chorus of "Oh yes!" and "I've seen that, too!" among the other doctors sitting in the audience in the room!

 

Things that make you go "Hmmm:" Perhaps what Dr. Storch and company are seeing, at least at times, is a response to SSRI's by kids with methylation issues? Anyone want to run that up the flagpole with him and/or Dr. M., or know if they have ever considered this particular point?

I've pretty much gotten the blank look when I have brought the mutation up, but I am thinking that the drs you mention may have better knowledge than mine have. If they are not aware of it it would be helpful for them to be made aware...

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