Meds for OCD?

[lmkmip67]

The new therapist we are seeing does specialize in OCD and knows of PANDAS very well. But she really thinks Ian would benefit from a low dose of something that traditionally treats OCD. Being only 8, I am not sure. I am not against it, but not sure I am for it yet either. Has anyone else tried medication for their child's OCD? What was your experience, positive and negative? We are going into our 5th IVIG (if this one does nothing, like the rest, we will be taking a break after this one). We are also going to try the LLMD route and are seeing a neurologist next month. So we are trying many avenues. But the therapist just felt that he has so much going on that he could really benefit from some medication to calm the OCD a bit and help him work on skills and tools. A part of me wonders how a PANDAS kid will react. But then again, traditional PANDAS treatments aren't working for him anyway, so.....why not try it, I wonder?

 

Lisa

[MomWithOCDSon]

Hi Lisa --

 

My DS was put on low-dose Lexapro when he was 8. At the time, the diagnosis was strictly OCD (we didn't successfully get anyone to even consider PANDAS, let alone treat it, until age 12). Whether it was coincidence (early exposure exacerbation and DS successfully fighting off the strep over the next couple of months) or the Lexapro, or a combination, we thought at the time that the Lexapro was a miracle for him. After about 2 months on the dose, he was back to being a "normal" kid and remained that way for the next 4 years, more or less. We had a couple of "bumps" of returning OCD behavior during that time, but nothing major.

 

Now DS is on low-dose Zoloft, and we believe that has been helpful to him, also, through antibiotic treatment and now beyond. We hope to get him off that eventually, but for now, we're leaving it in place.

 

I know some others have had negative experiences with Lexapro and SSRIs in general, so I'm only giving you our experience. I would also strongly advocate that, if you do decide to try it, you begin at a very low dose and refrain from increasing it until at least 4, preferably 6, weeks have passed on the initial dosage. They tell you that with SSRIs it can take 4 to 6 weeks to reach full efficacy, and unfortunately, I think some docs make the mistake of increasing the dosage too quickly when our kids don't respond quickly. Then they get too much and they get activated (increased behaviors rather than decreased), and we get a bad taste in our mouths about these potentially helpful meds and become afraid of them as a result.

 

Good luck to you! In our experience, a combination of PANDAS and "conventional OCD treatment" has been the most potent, successful combination with the best results. Perhaps it will help your DS, also.

[lmkmip67]

Thank you, Nancy! That really helps me. I worry so much about him, so hearing that it may be helpful is really uplifting for me. I want to see what the neurologist says, but I am open to a low dose and see how he does.

[eljomom]

MomWithOCDSon---I am glad to see that you replied to this first. I DO NOT know firsthand the answer to this situation, but I feared that there would be immediate posts about NOT putting a pandas child on and SSRI for any reason whatsoever. I have heard about the negative responses, and fear them myself for my child. But at the same time, if IVIG or other pandas treatments are not helping, it makes you wonder. I know there are people here who feel very strongly opposed to SSRI's, but we have to remember that all kids are different and react differently. If we all reacted positively to the same treatments for pandas (antibiotics, steroids, ivig, etc..) then we wouldn't need this forum.

 

 

Hi Lisa --

 

My DS was put on low-dose Lexapro when he was 8. At the time, the diagnosis was strictly OCD (we didn't successfully get anyone to even consider PANDAS, let alone treat it, until age 12). Whether it was coincidence (early exposure exacerbation and DS successfully fighting off the strep over the next couple of months) or the Lexapro, or a combination, we thought at the time that the Lexapro was a miracle for him. After about 2 months on the dose, he was back to being a "normal" kid and remained that way for the next 4 years, more or less. We had a couple of "bumps" of returning OCD behavior during that time, but nothing major.

 

Now DS is on low-dose Zoloft, and we believe that has been helpful to him, also, through antibiotic treatment and now beyond. We hope to get him off that eventually, but for now, we're leaving it in place.

 

I know some others have had negative experiences with Lexapro and SSRIs in general, so I'm only giving you our experience. I would also strongly advocate that, if you do decide to try it, you begin at a very low dose and refrain from increasing it until at least 4, preferably 6, weeks have passed on the initial dosage. They tell you that with SSRIs it can take 4 to 6 weeks to reach full efficacy, and unfortunately, I think some docs make the mistake of increasing the dosage too quickly when our kids don't respond quickly. Then they get too much and they get activated (increased behaviors rather than decreased), and we get a bad taste in our mouths about these potentially helpful meds and become afraid of them as a result.

 

Good luck to you! In our experience, a combination of PANDAS and "conventional OCD treatment" has been the most potent, successful combination with the best results. Perhaps it will help your DS, also.

[lmkmip67]

So true. I think the each kid is so different and so is each treatment path for each kid. It seems there are no rules, really. What works for one, may not work for another. And when what are doing isn't working, as a parent, I am going to try another path to help my kid. We all are. Some experiences may be bad with SSRIs, but at some point it may be necessary to try them, and I think we are there right now.I wish we weren't. But antibiotics and IVIG have not helped us.

[LNN]

My feelings on SSRIs have changed over time. Having been through so much, I now think that anything that helps a child cope is a positive. I "medicate" my children with a zinc supplement. It gives their bodies something they can't get enough of otherwise. So how is that different than medicating with an SSRI to make seratonin more available? So I don't think you should ever feel you have to "apologize" for giving your child something that helps.

 

My only comment is that if you are still going to pursue a medical cause for the OCD, (lyme or whatever else may seem reasonable), then go into the SSRI decision knowing you'll be having to sift through one more layer of factors as you try to figure things out. That's not necessarily a bad thing. My daughter (6) really started struggling with OCD this fall and I started her on inositol (a "natural" SSRI). It helped for awhile. But now we're dealing with Epstein Barr (similar to mono) and high levels of copper. As we treat the EBV and try to get her copper levels down, the inositol doesn't seem to be helping anymore. Is it because we need to go to a higher dose? Is it because the EBV treatment is causing a "herx"? Is it because the copper issue (which causes bi-polarish mood swings) is changing the chemistry of things - and if so, as the copper drops, does she actually need less inositol and what we're seeing - could it be an "activation" from too much inositol?

 

I'd still have a lot of these same questions even without the inositol in the picture. But it adds one more layer that I have to sift through. So even though the OCD is ramping up a bit, I'm considering slowly tapering off the inositol just to get a cleaner picture. And that's the other consideration - you have to build up and taper down on SSRIs. You can't just stop. You need to give the body time to adjust to the decreasing doses. So it adds time to trying to sort things out.

 

Now, I'll still say helping a child cope is a good thing. But if your LLMD appt is in the near future and if your son can manage until then, you may want to consider holding off only so you can have a better picture of how any new treatment works. But if things are so bad that you don't think you can all hold off, then I'd make your decision with a clear conscience and work through the additional "complexity" when the time comes. Just my two cents.

[MomWithOCDSon]

So true. I think the each kid is so different and so is each treatment path for each kid. It seems there are no rules, really. What works for one, may not work for another. And when what are doing isn't working, as a parent, I am going to try another path to help my kid. We all are. Some experiences may be bad with SSRIs, but at some point it may be necessary to try them, and I think we are there right now.I wish we weren't. But antibiotics and IVIG have not helped us.

 

And just as a "devil's advocate," and maybe a bit of a "Pollyanna," too, don't be so sure that none of the other interventions are "working" or "haven't done anything," either. Even though the antibiotics had an almost miraculous positive impact at first, the effect waned over time and then became so subtle that we weren't even sure they were doing anything anymore. Honestly, it's only been with a very long-range vision and a thick journal that DH and I have been able to look back and see just how far our DS came over a 2+ year period. Time is a potent piece of the puzzle, too, IMHO, and that's where we see the real value in the SSRIs . . . giving DS the best quality of life and functionality while he matures and fights his way past the illness.

 

Keep the faith!

[911RN]

My DS11 has been on Prozac 20 mg (low dose) since June 2011. He weighs 120 lbs. He has tolerated it well and it has helped with OCD. I, like Nancy, went up very slowly with 4-6 week intervals in between 10-20 mg. I am a big believer in "trial and learn" when all other therapies have been exhausted. We did long term daily high dose Azithro for 90 days then effects waned. I was not willing to do long term antibotics once we could not get Cam Kinase II levels from Cunningham lab when they closed research program. We had blood waiting in lab that went untested. It has been a positive experience for us- no negatives to report:) Good luck!

[lmkmip67]

Thanks for the input, everyone. That makes me feel a lot better about trying something when we do get in with the neurologist. Nothing is an emergency here. But he has slowly gotten worse OCD wise over the past year, and we do need to keep trying things. I do believe that is next. I will keep trying to update as I know it is helpful to others as well.

[PowPow]

We have had decent response from Anafranil (clomipramine)- not an SSRI.

Also one child has used Rilutek- and it has been helpful, I think.

Just some more meds name to think about.

Another thing I would recommend doing is a CYP-450 test- it is a genetic test that shows the pathways that different meds (and it can be a specific psych med test) are metabolized in your own body. It is part of the whole "personalized medicine" process.

Our LLMD ordered it, but there other ways to get it done. It is an accepted test (by most psychs) and is better than trial and error with meds that might make your kid worse- in my experience!

[LNN]

Another thing I would recommend doing is a CYP-450 test- it is a genetic test that shows the pathways that different meds (and it can be a specific psych med test) are metabolized in your own body. It is part of the whole "personalized medicine" process.

Our LLMD ordered it, but there other ways to get it done. It is an accepted test (by most psychs) and is better than trial and error with meds that might make your kid worse- in my experience!

 

A great idea! We haven't done this, but CYP-450 plays a very important role in how the liver functions and as PowPow said, it tells you whether you may need more or less of a particular medication. I know this talk about genetics may sound new agey. But it's an emerging field called epigenetics, where you individualize treatment plans - much better than throwing darts at a problem.

[nicklemama]

I'm probably one of the big cautioners on SSRI's. Start w/ a very low dose and go very slowly. My negativity towards SSRI's is based on experience w/ my DS. He was given Celexa. At the first dose increase 6 wks later, he became suicidal. He was 6yrs old at that time. Now, that said, I know they help some kids on here and I would point out that my DS was not being treated for PANDAS at the time he was rx'd Celexa. He was in an extended exacerbation of PANDAS(in hindsight). I think SSRI's have their place for kids who've been and are currently being treated for PANDAS and need some relief from their OCD. The best word I can say is have a lot of caution when giving an SSRI to your child.

[Burnell]

Our DD 12 is one lexipro and risperidol. We have also tried Celera, depakote, and clonadine. Celexa is a horrible waste of time, it has side effects and does not work like they claim. Despite that your insurance co. will tell you its the same and a generic to lexipro, its not. they are different, Lexipro had more active ingredients and is safer.

These meds have helped our DD to sleep at night. Before the PANDAS, I would kid her about breaking a world record for sleep, sometimes 12 hours. Once PANDAS hit she would be up doing rituals till 3 am, only sleeping 4 hours a night. The meds have made it so she gets sleepy at night and not frantic. She has gained weight on them. We will be doing an IVIG next week w/ DR Smith in New Jersey. We have seen Dr Swedo, Dr Murphy, and DR Trifeletti. They all have diagnosed our DD with PANDAS. Since being in the NIH study in May, we have seen the other doctors and then began the odyssey of trying to get insurance to cover the IVIG. We tried 3 weeks of OCD therapy in St Petersburg Florida. The 3 week therapy is the only thing that I thought did not help at all. She just has no control over the OCD and the therapy is all based on the idea that these kids can control their OCD.