SSRI experiences needed.

[susie]

I would like to hear your experiences with SSRI meds. in your kids. My daughter was initially thought to be PANDAS, but strep was never proven except in her gut. She had elevated CamK and anti dopamine 1 antibodies. She was later found to have lyme. She's been on antibiotics and is doing much, much better in terms of OCD and tics, but still has pretty significant anxiety issues. Our ped (PANDAS specialist) wants to start her on Lexapro. Dose is to be 2.5mg X 4 days, then 5mg X 1 week, then eventually up to 10mg as tolerated. My daughter is 7 and weighs 53#.

 

I know I've heard about "activation" with SSRI's and I'm not really sure what that means. Increased symptoms?

 

I'd love to hear if others have had success with SSRI's and at what dose. I wasn't expecting the dose for my daughter to be the full standard dose.

 

Thanks in advance for any insight you can give.

[MichaelTampa]

I'm an adult, not a kid, but when I took prozac for depression, this was before dx and treatment started for lyme, it caused something a lot like bipolar swings between deep depression and brief periods of mania. It also caused a tough and increasing all-the-time headache over the course of the couple/few weeks I took it, bad enough that I stopped taking it. The few days following the last dose were very difficult depression-and-suicide-feelings-wise.

 

I think these SSRI's are a bit like a roulette wheel for the brain, shake things up and see what interesting situation results. There are some who have posted here that they have been helpful, and then some not so much.

[NancyD]

My DD tried several SSRIs years ago -- long before her Lyme/Bartonella diagnosis -- and each one put her into a manic episode. She raged more. We won't ever try another psychotropic med again.

[momaine]

I think we are in the minority, but both Zoloft and Celexa have brought my daughter some relief from her ocd.

 

Initially, before PANDAS diagnosis dd started zoloft at maybe 40 mg, ended up at 75 for a while, then went to 125 before discontinuing it in a horrible pandas exacerbation. (thought it wasn't working anymore, but it was an exacerbation, had been on it for maybe a year and a half, total)

 

At that time, we switched her to Celexa and it helped some at 20mg, helped a bit more at 40mg, but made her worse at 60mg. We went back to 40mg. After she was diagnosed with pandas and was doing better, at one point, we reduced successfully to 20mg but when she worsened with later lyme treatment, we upped it to 40 again, then tried 60 with the same bad results. She is back to 40mg and feeling good about it at that level.

 

It really is something you have to try and see and write down all changes so you can track it. It doesn't make as much sense in a PANDAS kid, but for some reason it helps mine.

 

Angela

[Bill]

I would like to hear your experiences with SSRI meds. in your kids. My daughter was initially thought to be PANDAS, but strep was never proven except in her gut. She had elevated CamK and anti dopamine 1 antibodies. She was later found to have lyme. She's been on antibiotics and is doing much, much better in terms of OCD and tics, but still has pretty significant anxiety issues. Our ped (PANDAS specialist) wants to start her on Lexapro. Dose is to be 2.5mg X 4 days, then 5mg X 1 week, then eventually up to 10mg as tolerated. My daughter is 7 and weighs 53#.

 

I know I've heard about "activation" with SSRI's and I'm not really sure what that means. Increased symptoms?

 

I'd love to hear if others have had success with SSRI's and at what dose. I wasn't expecting the dose for my daughter to be the full standard dose.

 

Thanks in advance for any insight you can give.

 

 

Count us as another in the minority. In brief, symptoms of motor movement disorder, raging, and dilated pupils kicked off our journey some 6 years ago. Anxiety and OCD kicked in less than 3 years ago. Later (in the last 18 months), our son was diagnosed with PANDAS first and then Lyme/bartonella.

 

The first SSRI we tried - Zoloft was a gift. My son started off on 12.5mg, after 3 months went to 25mg, and stayed there for some three years. This was pre-OCD and anxiety. Within 2 hours of the first dose, his raging melted away. I do not remember his weight back then, perhaps 50lbs.

 

The Zoloft "failed" rather spectacularly when anxiety and OCD hit. This was all pre-PANDAS/Lyme diagnosis so we went through the usual psychiatrist trial and error. (BTW - it was a very observant pediatrician who first suggested Zoloft; since retired.) I can't recall everything thrown at him but the next several months were H3!! on earth until Prozac. We noticed improvement after 2 days. I think he was on 60mgs. at 70lbs. Not long after we went down to 40mgs and we found a psychiatrist that understood PANDAS. All the typical combinations tried did not work. Prozac, like the Zoloft before, works for him for rage. Nothing seems to work with the OCD or anxiety though he is better today than then. Today, he is on 20mg/day and weighs just under 100 lbs. This is after 14+ months on ABX and 3 IVIGs.

 

Good luck. bill

[911RN]

MY DS11 (120 lbs) has been on Prozac 20 mg since June and has tolerated it well. Happier, more engaged, less OCD. Teeth grinding at night has been the only notable side effect. I think it is trial and learn process. Works- great. If not- can always stop. What works for one may not work for another and even your own child may do great on one particualr SSRI and not another??!! I just urge folks to give it long enough to know if it is really effective- 6 weeks or more if not having severe side effects. And,don't give up if Lexapro is "not the one." May need to try another SSRI.

 

We tried 4 different stimulants when we were trying to target ADD sxs- all a no-go but we tried. Docs have never forced us to revisit that issue with stims:)! We have not tried Lexapro. Our doc started with Prozac and thus far, it has been a keeper.

 

Good luck with trial.

Edited December 30, 2011 by 911RN

[911RN]

Deleted 2nd one- it double posted reply!

Edited December 30, 2011 by 911RN

[MichaelTampa]

Just as a warning these drugs can lead to suicide. I am sure most take it without that situation, and good to keep that in mind, but something to also be aware they do have that risk. Attached is a long video on that, perhaps don't watch if faint at heart, so to speak.

 

 

[Bill]

Just as a warning these drugs can lead to suicide. I am sure most take it without that situation, and good to keep that in mind, but something to also be aware they do have that risk. Attached is a long video on that, perhaps don't watch if faint at heart, so to speak.

 

 

 

 

Warning noted, however, pre-SSRIs my son threatened to kill my wife and in a complete deadpan, stated that he would like to break every bone in my body the next night. He was 7.

 

Everything comes with warnings.