SSRI's

[Joan Pandas Mom]

Is anyone taking antidepressants? I know in Saving Sammy, Dr. Nicoladies took Sammy off Zoloft because in some cases the SSRI's can make PANDAS worse. Has anyone found anything that will work for depression without increasing OCD symptoms? My son is 15 1/2. I see depression setting in.

[MomWithOCDSon]

Yes, there has been some evidence (a study by Murphy, I believe) that SSRI's may over-activate PANDAS kids. So many here are wary and/or have had bad experiences.

 

Our experience, meanwhile, has been as follows. Our DS12 was diagnosed with OCD at age 6; we didn't know about PANDAS then. At age 7, when his symptoms became more severe and were interfering with school, he was put on Lexapro. Lexapro is an SSRI which is a different formulation of the same components in Celexa.

 

He did beautifully on the Lexapro for over 4 years . . . so well, in fact, that he demonstrated virtually no signs of OCD or any of the other PANDAS related behaviors we've come to know more recently. Now, whether he was unusual in this respect or not, I don't know.

 

Last May, at 12, he went off the deep end with OCD behaviors and the Lexapro ceased to have any positive impact. For months before finding and pursuing PANDAS, we tried every other antidepressant and SSRI in any way approved for OCD: Zoloft, Prozac and finally Luvox. Nothing gave him any noticable leverage against the debilitating OCD as the Lexapro had years previous.

 

At least, not until we went with antibiotics. Since the abx, he has improved dramatically and has returned to his regular life again. As of today, i would tell you that he is 90% back. And he remains on Luvox, mostly because we didn't want to change anything up when he seemed to be improving.

 

So, is the Luvox helping him? I honestly don't know. But I think I CAN say that it isn't hurting him. And as soon as he's back to 99% and holding, we'll try weaning him off the Luvox and see what happens.

 

Good luck to you!

[simplygina]

Is anyone taking antidepressants? I know in Saving Sammy, Dr. Nicoladies took Sammy off Zoloft because in some cases the SSRI's can make PANDAS worse. Has anyone found anything that will work for depression without increasing OCD symptoms? My son is 15 1/2. I see depression setting in.

 

Well, here's my two cents.

 

We did Zoloft for a little over a year for DS, starting when he had just turned 9. We started at 25 mg, bumped to 50 within a few months, 100 a few months later and up to 150 mg by 9 months. At 150 mg there was zero doubt in my mind that it was making everything worse. He was manic, couldn't sit still like he had ants in his pants, talked a mile a minute non-stop, and couldn't sleep. Within 2 days of the 150 mg dose I asked my husband if he thought the Zoloft had changed anything except causing him to gain 15 lbs in under a year, most of it within a 4 months period. We realized that the improvements we had attributed to the zoloft were the improvements we had seen in previous years as we came out of winter and headed into Spring and Summer. Things always get worse when school starts and they did again even on the Zoloft. So we dropped him back down to 100 for a month, then slowly have weaned him down to 25 mg. We tried to get him off completely over the holidays, but the withdrawals were pretty severe (flu like symptoms that abated within a few hours of us giving him the drug again) and we decided to wait until we were back to a normal schedule.. We tried again just before we started abx, but withdrawal again was a factor and I wanted to be able to know if the abx were helping without interference so he's still on the 25mg. He has stopped gaining weight thankfully.

 

After seeing how hard it is to get off an SSRI, I would use caution. That said, my son was never depressed. I have taken Wellbutrin in the past and felt it did help me. It's not an SSRI though, so I don't know how it affects OCD or PANDAS, but it does help depression. It also doesn't cause weight gain or have sexual side effects (which may not be an issue at 15, but if he stays on it for any length of time, it could be in the future). It isn't FDA approved for anxiety but I felt like it did make me feel a lot less anxious. Getting off wasn't too hard, I just felt really tired for about a week. You do have to wean off as well because there is an increased risk of seizures. When my sister came of Zoloft she said she has never felt more depressed and overwhelmed with sadness. She had to will herself through each day because she kept thinking she couldn't go on like that. It lasted about two weeks, but it was a brutal two weeks.

 

If it were my son I would try giving him tryptophan or 5-HTP first. They actually create more seratonin in the brain. Getting enough sleep, sunshine and exercise make a huge difference, but they seem to be the hardest to get when you are depressed. St. John's Wort also seems to work like an SSRI, but with fewer side effects for most people, though if and SSRI were going to make the PANDAS worse I imagine St. John's Wort would too. If none of those worked, I would consider Wellbutrin first. But if the choice is between a teeneage boy with PANDAS and depression vs. mild side effects of an anti-depressant that worked, I'd probably go with the SSRI.

[memom]

Zoloft is not making my daughters symptoms worse but not really helping. Hope to start weening soon.

 

memom

[tired mom]

Is anyone taking antidepressants? I know in Saving Sammy, Dr. Nicoladies took Sammy off Zoloft because in some cases the SSRI's can make PANDAS worse. Has anyone found anything that will work for depression without increasing OCD symptoms? My son is 15 1/2. I see depression setting in.

I tried many diffirent SSRI'S with my daughter and I also have seen her symptoms worsen on then. When she was in her worst state with ocd I can say honestly say no psyc meds. worked. She was on Lexapro for about 2 years and recently stopped taking it. There has been no change.

[Kayanne]

My husband didn't want to go back on an SSRI when his panic attacks started coming back...he has been taking L-Tryptophan in the evenings before bed. It is really helping.

 

5HTP is also a supplement that increases serotonin. I think with both you must also take B6 in the form of P5P sometime during the day because without this your body won't convert to serotonin.

 

If you are considering this, take Tryptophan or 5HTP but not both at the same time.

 

SSRI's are a helpful tool, but they can be a bit hairy as far as getting the dosage right, and my husband's experience has been that with each dosage change, it takes 6 weeks for the side effects to stop. For him at the higher doses, he was very tired and slept too much. However, once on the correct dose it was helpful. Then the weaning had to be really slow because the side effects he had from that were mild dizziness and nausea, more easily upset, sore throat and headache.

 

If he skips a dose of L-Tryptophan for one day, he may feel a little more edgy...but nothing like he would experience if he suddenly stopped an SSRI.---Which, by the way he did once on the advice of an awful psychatrist!

[Joan Pandas Mom]

Thanks for this information. Two family members are on Lexapro (for depression) and it is working well for them. I might try it. He was on 200 mg of Zoloft for 2 years before Oct. with this last exacerbation. The Zoloft didn't help with the OCD but probably did with depression.

 

Yes, there has been some evidence (a study by Murphy, I believe) that SSRI's may over-activate PANDAS kids. So many here are wary and/or have had bad experiences.

 

Our experience, meanwhile, has been as follows. Our DS12 was diagnosed with OCD at age 6; we didn't know about PANDAS then. At age 7, when his symptoms became more severe and were interfering with school, he was put on Lexapro. Lexapro is an SSRI which is a different formulation of the same components in Celexa.

 

He did beautifully on the Lexapro for over 4 years . . . so well, in fact, that he demonstrated virtually no signs of OCD or any of the other PANDAS related behaviors we've come to know more recently. Now, whether he was unusual in this respect or not, I don't know.

 

Last May, at 12, he went off the deep end with OCD behaviors and the Lexapro ceased to have any positive impact. For months before finding and pursuing PANDAS, we tried every other antidepressant and SSRI in any way approved for OCD: Zoloft, Prozac and finally Luvox. Nothing gave him any noticable leverage against the debilitating OCD as the Lexapro had years previous.

 

At least, not until we went with antibiotics. Since the abx, he has improved dramatically and has returned to his regular life again. As of today, i would tell you that he is 90% back. And he remains on Luvox, mostly because we didn't want to change anything up when he seemed to be improving.

 

So, is the Luvox helping him? I honestly don't know. But I think I CAN say that it isn't hurting him. And as soon as he's back to 99% and holding, we'll try weaning him off the Luvox and see what happens.

 

Good luck to you!

[Joan Pandas Mom]

Thanks for this. I thought about the Wellbutrin too. I started reading about PANDAS/OCD and Dopamine vs. Seratonin. I know Wellbutrin affects the Dopamine. I need to find some time (ha, ha) and read more about it. That might be an option.

 

Is anyone taking antidepressants? I know in Saving Sammy, Dr. Nicoladies took Sammy off Zoloft because in some cases the SSRI's can make PANDAS worse. Has anyone found anything that will work for depression without increasing OCD symptoms? My son is 15 1/2. I see depression setting in.

 

Well, here's my two cents.

 

We did Zoloft for a little over a year for DS, starting when he had just turned 9. We started at 25 mg, bumped to 50 within a few months, 100 a few months later and up to 150 mg by 9 months. At 150 mg there was zero doubt in my mind that it was making everything worse. He was manic, couldn't sit still like he had ants in his pants, talked a mile a minute non-stop, and couldn't sleep. Within 2 days of the 150 mg dose I asked my husband if he thought the Zoloft had changed anything except causing him to gain 15 lbs in under a year, most of it within a 4 months period. We realized that the improvements we had attributed to the zoloft were the improvements we had seen in previous years as we came out of winter and headed into Spring and Summer. Things always get worse when school starts and they did again even on the Zoloft. So we dropped him back down to 100 for a month, then slowly have weaned him down to 25 mg. We tried to get him off completely over the holidays, but the withdrawals were pretty severe (flu like symptoms that abated within a few hours of us giving him the drug again) and we decided to wait until we were back to a normal schedule.. We tried again just before we started abx, but withdrawal again was a factor and I wanted to be able to know if the abx were helping without interference so he's still on the 25mg. He has stopped gaining weight thankfully.

 

After seeing how hard it is to get off an SSRI, I would use caution. That said, my son was never depressed. I have taken Wellbutrin in the past and felt it did help me. It's not an SSRI though, so I don't know how it affects OCD or PANDAS, but it does help depression. It also doesn't cause weight gain or have sexual side effects (which may not be an issue at 15, but if he stays on it for any length of time, it could be in the future). It isn't FDA approved for anxiety but I felt like it did make me feel a lot less anxious. Getting off wasn't too hard, I just felt really tired for about a week. You do have to wean off as well because there is an increased risk of seizures. When my sister came of Zoloft she said she has never felt more depressed and overwhelmed with sadness. She had to will herself through each day because she kept thinking she couldn't go on like that. It lasted about two weeks, but it was a brutal two weeks.

 

If it were my son I would try giving him tryptophan or 5-HTP first. They actually create more seratonin in the brain. Getting enough sleep, sunshine and exercise make a huge difference, but they seem to be the hardest to get when you are depressed. St. John's Wort also seems to work like an SSRI, but with fewer side effects for most people, though if and SSRI were going to make the PANDAS worse I imagine St. John's Wort would too. If none of those worked, I would consider Wellbutrin first. But if the choice is between a teeneage boy with PANDAS and depression vs. mild side effects of an anti-depressant that worked, I'd probably go with the SSRI.

[Megs_Mom]

We have not used an SSRI. However, we were recommended for a study at NIH on Riluzole, which helps with glutemate. This was recommended by one of the PANDAS docs. I would consider this if we went out of control, but I have not done nearly enough research on it yet - I'll throw it out there in case it is helpful to anyone. Here is the link: http://clinicaltrials.gov/ct2/show/NCT00251303

 

In terms of more traditional SSRI's (zoloft, etc), I like to read this study from Storch: http://www.primarypsychiatry.com/aspx/Arti...x?articleid=561. It explains what "activation" is (definition) and discusses the results showing that a very high percentage of children with PANDAS did experience activation with SSRI's. 14 out of 38 children with PANDAS showed activation that remitted when the SSRI was removed. So it did not cause issues with all of the children, but certainly a lot more than the expected norm of 13%. They recommend conservative dosing and close monitoring.

 

SSRI's are not the first line recommendation for children with OCD anyway - they are only recommended if ERP therpy cannot be completed due to extreme OCD/anxiety or unavailable therapy.

 

We really like treating medically (so far with abx) and using ERP therapy for any residual OCD/habits.

[Joan Pandas Mom]

I have been hearing more about glutemate and PANDAS. Thanks, I'm going to read this later.

 

We have not used an SSRI. However, we were recommended for a study at NIH on Riluzole, which helps with glutemate. This was recommended by one of the PANDAS docs. I would consider this if we went out of control, but I have not done nearly enough research on it yet - I'll throw it out there in case it is helpful to anyone. Here is the link: http://clinicaltrials.gov/ct2/show/NCT00251303

 

In terms of more traditional SSRI's (zoloft, etc), I like to read this study from Storch: http://www.primarypsychiatry.com/aspx/Arti...x?articleid=561. It explains what "activation" is (definition) and discusses the results showing that a very high percentage of children with PANDAS did experience activation with SSRI's. 14 out of 38 children with PANDAS showed activation that remitted when the SSRI was removed. So it did not cause issues with all of the children, but certainly a lot more than the expected norm of 13%. They recommend conservative dosing and close monitoring.

 

SSRI's are not the first line recommendation for children with OCD anyway - they are only recommended if ERP therpy cannot be completed due to extreme OCD/anxiety or unavailable therapy.

 

We really like treating medically (so far with abx) and using ERP therapy for any residual OCD/habits.