Celexa/Lexapro.

[EmersonAilidh]

I'm gonna post on the Lyme board about my second LLMD appointment on Tuesday, but for now all I have time for is this.

 

I started therapy something like three weeks ago. Had my second appointment yesterday & he echoed three other doctors by telling me that I was BiPolar. Nope. Nuh uh. No way. Not having that. I've gotten comfortable enough around doctors to know when I need to hold my tongue, & this was not one of those times. I let him know that he was wrong & that I wouldn't be taking Lithium or any other mood stabilizer. I like this doctor because he's very open to my opinion. He took my disagreement in stride & said that if I was opposed to Lithium we could try an antidepressant. We went with Lexapro but for some reason it's causing problems at the pharmacy so we might be switching to Celexa.

 

My question is... I've heard the horror stories about P.A.N.D.A.S. & SSRIs but leave it to me to need to see it for myself. How many kids react badly to the antidepressants & how exactly do they react? Surprisingly enough I haven't covered the whole pharmaceutical rainbow just yet & haven't ever been prescribed an SSRI before. I'm going to try it no matter what, but I just wanted to check in beforehand.

[Guest pandas16]

When i tried SSRIS I screamed for hours and became completely dysfunctional to the point where I could not even walk or eat in addition to PANDAS.

 

To add though: Not being able to walk was because I had tics and the SSRI's severely worsened my tics. Concerning OCD- it neither helped nor made things worse.

Edited May 7, 2011 by pandas16

[MomWithOCDSon]

Emerson --

 

Celexa and Lexapro are basically the same SSRI; the components are just arranged in a different order, but it is the same chemical components.

 

As for reactions, my DS14 took a low dose of Lexapro for more than 4 years for what was originally diagnosed as "regular OCD," before we found the strep connection/PANDAS. I think the psych was a little confused by the fact that the low dose was sufficient for him and we never had to increase it, but there you have it.

 

Before we began PANDAS treatment, though, when DS had a major, "unexplained" exacerbation, the modus operandi by that psych was switch SSRIs and increase the dose until we get the "desired" result . . . which we never did, this time around. And increasing the dosage just seemed to make things worse, go figure.

 

By worse, I mean the following: DS's behaviors actually go into overdrive. His OCD gets worse, instead of better. His hyperactivity gets worse, instead of better. His distractability gets worse, instead of better. His processing (especially verbal) gets worse, instead of better.

 

That being said, he's one of the PANDAS kids that does seem to benefit from the properly low dose of SSRI; he's currently taking Zoloft. It just seems to give him a little extra leverage against the OCD and improve his mood.

 

If you want to try them and see if they help you feel better, too, just start on a really, REALLY low dose, and don't be too quick to increase it. SSRIs can take 4 to 6 weeks to reach full efficacy, so if you don't feel any changes for a couple of weeks, don't assume that's because it's either 1) not working, or 2) not a high enough dose. Give it a fair trial. On the other hand, if you feel "antsy" or otherwise negatively impacted by it more immediately, I would at the least halve the dose and see if the negative feelings fade, or potentially stop taking it altogether.

[EAMom]

Lexapro was bad for us...helped with ocd (somewhat) but we also got akathesia/serotonin syndrome (akathesia even at low doses). At higher doses (raised b/c OCD not adequately controlled) we got aggression (easily confused with PANDAS symptoms.) Be very careful about the dosing. Also, withdrawal was very very difficult.

 

Low dose prozac (10mg/day) on the other hand, has been good for my dd.

 

Are you on antibiotics Emerson?

Edited May 5, 2011 by EAMom

[pathfinder]

Hello Emerson

 

I feel that the more I learn about pandas the less I know about it and it is good thing you brought this subject up because for pandas children it is essential that we have all the options available checked and studied . One could have all of above or none of above symptom and yet have same dx as pandas. My son W had been on SSRI for 7yrs until about 18 months ago. When he was young ( like most of young pandas in this forum) getting day by day without something like any lengthy meltdowns, phone calls from teachers, or getting homeworks done were most important things in his life so we stayed on those meds believing they were helping him. They did help to some extend but benefit did not last so we switched among those med, same combinations but different names frequently and in the end he tried all of ssri at one time or the other.

 

This is my own opinion of ssri medication use on pandas kids ( at least some pandas kids === like my son)

SSRI was helpful only in short term use. ( we invested so much time looking for right dose/combo not knowing there is none and it simply did its job)

they made my son very lazy. ( he did not care about his grade, he did not care what he wore, I could go on) I think SSRI made his conscious dull along with his OCD ( He would say insensitive things but he would not know or care of consequence) My ds became attracted to some things of dark and shocking nature because he did not find any regular activities worth of his attention. My son's symptoms became more complex and difficult to deal with time due to long term use of SSRI and his overall demeanor did not change. Upon discontinuing SSRI, above symptoms disappeared.( regrets came instead)

 

I think SSRI meds are ok for pandas kids as long as they are used as temperately measurement but then again problems occurring while weening this med makes me wonder if it is even worth in first place.

Emerson, you are an incredibly bright and nice girl any mom would proud to have as a daughter and I wish you the very best.

Pathfinder

[pathfinder]

Oh! If you have problem with yeast, you don't do SSRI. Yeast activates SSRI and together they take you to places you don't want to be. ( same as alcohol and SSRI)

pathfinder

[dcmom]

momwithocdson-

 

Interesting post. We are in such a mess over here, trying to figure out what is working/not- but something in your post struck me.

 

DD10 had an extreme episode in December. We did IV steroids, which helped a lot, until she got a stomach flu in January. Since them we have been mostly fighting ocd.

 

She has- since recovery from the stomach bug- been on a gradual track of improvement. At some point we added very low dose zoloft- to see if it would help with the ocd- it did not. She was on it for a little over 2 months- with no apparent help- so on the advice of 2 docs, we took her off.

 

Immediately prior to taking her off, she had a strep infection. We saw a minor bump in ocd/anxiety immediately, that are calming now.

 

But- I am now noticing some mood issues, I haven't seen since December: mild depression, mild oppositional behavior, lack of enthusiasm- where a few weeks ago she was very happy (despite the ocd stuff).

 

So- maybe the zoloft was helping her in terms of mood?

 

Ay- now to try to get another prescription for that over the phone- not going to be easy

[MomWithOCDSon]

momwithocdson-

 

Interesting post. We are in such a mess over here, trying to figure out what is working/not- but something in your post struck me.

 

DD10 had an extreme episode in December. We did IV steroids, which helped a lot, until she got a stomach flu in January. Since them we have been mostly fighting ocd.

 

She has- since recovery from the stomach bug- been on a gradual track of improvement. At some point we added very low dose zoloft- to see if it would help with the ocd- it did not. She was on it for a little over 2 months- with no apparent help- so on the advice of 2 docs, we took her off.

 

Immediately prior to taking her off, she had a strep infection. We saw a minor bump in ocd/anxiety immediately, that are calming now.

 

But- I am now noticing some mood issues, I haven't seen since December: mild depression, mild oppositional behavior, lack of enthusiasm- where a few weeks ago she was very happy (despite the ocd stuff).

 

So- maybe the zoloft was helping her in terms of mood?

 

Ay- now to try to get another prescription for that over the phone- not going to be easy

 

Well, that's what we see mostly . . . the lighter, more positive mood.

 

Zoloft and/or SSRIs are not considered a "controlled substance" like benzos, so if you decide you want it, I wouldn't think getting it by phone would be that difficult. Good luck!

[Worried_Dad]

Psych meds in general were disastrous for our ds. We tried zyprexa (not an SSRI but prescribed for OCD) and zoloft with bad results. But the benzos (ativan, klonopin) were the worst: like pouring gasoline on the fire. For our ds, every psych med seemed to have an effect opposite to that which was intended.

 

I hope you have better luck, EA! I know that low-dose SSRI's have proven helpful for some of the PANDAS kids on the forum.

Edited May 6, 2011 by Worried Dad

[ptcgirl]

My dd11 has taken zoloft for the better part of 4 years. I do believe that it is helpful for her OCD symptoms and anxiety. It seems to make the symptoms worse for the first couple of weeks and then symptoms start getting better. It is worth her taking it at this point IMO. She is on 150mg and weighs 100lbs which is quite a lot. She started out much lower, but wound up on this dose. Her depression has really kicked in. Not if it is a side effect. Wish she didn't have to take anything.

[MomWithOCDSon]

For what it is worth, we've taken our lead from Tanya Murphy's paper on this subject (SSRIs and PANDAS kids).

 

When a "standard" dose seemed to activate our DS, we cut that dose in half. I think Murphy's "positive impact" SSRI dosage was even lower than that in terms of proration of the initial dose (maybe a quarter?), but her finding was a powerful one for us.

 

If you don't want to use psych drugs, including SSRIs, because you're categorically against their use, that's one thing. But if you're afraid to use SSRIs based on previous experience with activation or stories along those lines that you've heard, perhaps putting Murphy's findings into practice is worth a try?

 

All I can offer is that it has been helpful to us.

[nicklemama]

Well, I've hesitated to post this but I believe I should just so you are aware of all the possibilities. Keep in mind, my DS was 6.5 years old. He was placed on Celexa, a small dose. I can't remember now what the exact dosage was. He had one increase in dosage. He became suicidal and we immediately started taking him off it. He was on it for 2 momths.

[momaine]

My dd has seen some benefits from celexa. She was put on it after being on Zoloft for a couple of years when the zoloft seemed to stop working. (terrible exacerbation that I think may have been due to a sinus infection- a month or two after that was diagnosed with PANDAS, rather than regular ocd) So, its not that the zoloft stopped working per se, its just that it wasn't enough during an exacerbation, but we didn't know that then. So, anyway, switched to 20mg Celexa which also seemed to help a little. Upped it to 40mg and did not see any aditional obvious improvement.

 

After IVIG number two, many many months later, she was doing so well, we backed down to 20mg very successfully. After 7 more months and a new Lyme diagnosis and subsequent treatment that has made things worse initially, we have just raised it to 40mg again and she does feel that it has helped a little. It's been two weeks I think and we have an apt. with our family dr. who prescribed it tomorrow to talk about the dose and possibly raise it, if she thinks the time is right. Dd is really struggling right now. Trying to hang in there through the Lyme herxes that seem to never end. Not looking forward to explainging all this to the doctor.

[Luna2]

Hi - My dd14 (94 lbs) has been on zoloft about 2 years. We started at a very low dose 12 mg. then went to 25 mg and are now at 50 mg. This has especially helped with eating anxiety (her type of anorexia)and separation anxiety. We tried prozac when she was first diagnosed 5 years ago and it made her moods and anxiety much worse. So type of SSRI is important. This year we went up to 50 mg when her anxiety was so severe that she couldn't go to school. We think that mono caused the flare. We upped the zoloft and added clonodine 0.05 mg. Within a few days she was starting back to school and rages ceased. Since then she has been great.

 

From cuising this board, I have wondered if a certain set of symptoms might be more appropriate for one type of SSRI over another or at all. For example, I have noticed that the kids with severe eating issues seem to do better with an SSRI, specifically zoloft. Has anyone else noticed this?

 

BTW I titrate most of the meds I give my kid. I ususally give her less than the Rx for a week or so and then increase to see if she reacts well or not.As always, I do not think this is a one size fits all illness and we need to be flexible in our strategies to outwit the beast.

[dcmom]

JBG50- Interesting, thanks.

 

I have just restarted dd, 10, on zoloft. We started a few months ago, but didn't feel we were getting any help with the ocd from it. So we d/c'd a couple of weeks ago. After (well she had strep too- so its a mess trying to tell what is causing what) a week or so, we started seeing some mood issues- very mild depression and oppositional stuff. Started wondering if maybe the zoloft was helping us in that area- so put her back on to try. At the time she was on the zoloft- ocd was there, but mood, enthusiasm, optimism, etc was remarkably good, esp considering the ocd she was dealing with.

 

The good mood, optimism is SO helpful to battling the ocd.

 

She only takes the 12 mg. How long does it take for you to see effect- is it a few weeks? I am wondering if we would be smart to consider trying the 25mg at some point, and if so how long do you think I should wait?

 

thanks!!!!