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Indigo

SSRI's-PANDAS

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Have you used SSRI's for your PANDAS kids, which one, and what were the symptoms you were trying to treat/eliminate with them?

 

Why is it SSRI's that are recommended for Pandas by some doctors?

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I have not used them on my kids, but I can tell you from my own experience as a "PANDAS", that I was VERY sensitive to them - I needed to use miniscule doses. They worked - and they worked FAST for me, but if I took too much, they made me manic unless I took a mood stabilizer at the same time. It was the experience of my group while I was at Columbia (med school child psych dept.) that some people with autoimmune forms of anxiety disorders tended to "cycle" on SSRIs - sometimes it was subtle, other times dramatic. Caveat: I am not giving "official" medical advice at ALL, but if it were my child, I would go ahead with it but I would ask the MD to start VERY slowly and I would keep a wide eye open for any kind of "hyper" symptoms or cycling.

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p.s. SSRIs can be very effective for anxiety disorders such as OCD and generally have few side effects relative to the anti-seizure meds. Since OCD and other anxiety symptoms are often part of PANDAS, many physicians recommend SSRIs for PANDAS. My personal experience is that the anti-seizure meds (like Topamax, Depakote) have a better effect, overall, however.

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I don't know if you saw any of my old post..but my PANDAS 10 yr old reacted horribly to SSRI's and me like a dummy kept letting the DR prescribe them!! I just had 3-D brain scan done and DR gave me suggestions for meds..he said we do not need to raise seratonin but rather work on the dopamine & gaba...SO I am seeing HMO Dr tommorrow to get prescriptions...

I really think each kid is soooo different that you never know until you try!!

Sarah

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In dd's case the SSRI's was rx'd mainly for the OCD and also depression (and anxiety). I agree, start low, go slow with SSRI's, esp. with PANDAS.

 

Here's an article talking about how PANDAS kids may be more sensitive to SSRI's.

http://www.primarypsychiatry.com/aspx/Arti...x?articleid=561

 

Currently dd is on 10mg prozac day even though PANDAS is in remission. It seems to help with her pre-existing social anxiety. So far this has been a good drug for her. I think her brain was a bit serotonin deficient even before PANDAS.

 

When dd was diagnosed with PANDAS OCD/Anorexia Nervosa (she was also severely depressed) she was intially put on Lexapro (not a lot of track record of this drug on kids so I wouldn't really recommend it.) She had akathesia ("inner restlessness")even at the lower doses and serotonin syndrome when we upped the dose (shouldn't have but at the time we hadn't figured out what problems were from the PANDAS and what the Lexapro was helping/hurting, the lexapro did initially help her depression and her eating.)

 

SSRI's are also supposed to help prevent re-occurence of Eating Disorders...which could be helpful if dd gets PANDAS again.

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Thanks...I'm not sure we will need to use it or not. Now that the clarithromycin has revealed a brand new child, we have weaned my dd off all of her meds...but we were given a zoloft prescription just in case we needed it to replace the guanfacine which we just weaned her off of for the first time in two years. At this point she is doing very well of all meds, but she has a tendency for hyperactivity although the rest of her symptoms have disappeared on the clarithromycin.

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Hi Indigo

 

my son doesnt have PANDAS tho I have always suspected a PITANDS component to his genetic TS

 

however

 

I know a little about SSRI's from our experience with him on Luvox plus that of friends whose kids were given prozac and also zoloft

 

all of our kids had really bad side effects from these drugs

 

SSRI's are anti-depressants but are often dx for OCD as well as they keep serotonin elevated by preventing it's reuptake in the brain (hence the name Selective Serotonin Reuptake Inhibitors)

 

there are also supplements that elevate serotonin by different mechanisms than the SSRIs and overall they seem better tolerated, tho some do still have side effects to some of them)

 

Because of the OCD component of PANDAS, I guess some docs rx the SSRIs to try to calm this

 

as always I would just urge caution before giving SSRIs to kids esepcially as the FDA does have warnings associated with their use in youth.(this applies to ALL SSRIs)

Be sure you research potential side effects very carefully as well as check whether there are any studies done for their use in kids and their effect on the developing brain of a child

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Hi Indigo,

 

I wouldn't do the SSRI if your dd is doing well just on the abs. Are you planning to stay on the abs long term? I would rec some kind of antibioitc prophylaxis.

 

Was the hyperactivty something she had b-4 PANDAS or do you think it's from the PANDAS? It may just take more time for that aspect of her PANDAS to dissapate. It took my dd's tics longer to go away (about 6 weeks) than her OCD/anorexia nervosa.

 

I don't believe they use SSRI's for hyperactivity anyway.

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Hi all,

 

This is a subject I am fascinated by in addition to the antiobiotic therapeutic dosing. My 11 year old son is 5 years into his PANDAS diagnosis and we are constantly on the hunt for alternative treatments. He has been on Zoloft as well as an ADHD drug for a few years now and we see a Pediatric Psychiatrist every 6 months. We're seeing her next month and I like going in with all the info I can. My husband & I disagree about the SSRI's (he's for/I'm against) but so far it seems to help his OCD and tics.

 

What supplements are helpful in lieu of an SSRI? We've been giving him the Omega-3 supplements which he likes. I am very hopeful about trying another antiobiotic; we've given him azithromycin many times when he was exposed to Strep and becomes hyper, almost manic and tics more. I feel a therapeutic course is necessary for longer periods of time but of course my Pediatrician is skeptical but I'm going to ask our Ped Psych to prescribe Clindamycin and see how he does.

 

I can't tell you how wonderful it is to have found this site!

 

Lori

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Hi Lori,

 

do you think it's possible your son is reacting to a dye in the Azithromycin and not the Azithromycin itself? I know the liquid version must have some dyes and even the Az pill we give dd has a red color to it.

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What supplements are helpful in lieu of an SSRI?

Lori

 

Hi Lori and welcome

 

there are a number of supplements that elevate serotonin but do be sure to check with your physician before trying any and *especially DO NOT* combine them with any meds as dangerous interactions can occur. It is also not a good idea to combine these supps without guidance from a qualified professional and it should be noted that some people may still have side effects from supplements

 

some of the supps that are used include inositol, methionine, samE, l-tryptophan, 5HTP, GABA, phenylalanine, vitB12 and vitB6 and also the herb St John's Wort(SJW)

 

my son uses inositol, methionine, vit B12 and vit B6 (in the P-5-P form)

he used 5HTP and SJW in the past but finds they make him edgy and feel weird now

 

inositol is also a B vitamin and is generally well tolerated by most people

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I don't know if it's ok for kids, but I have found in the past that SAM-E could usually turn me around in one day. If I took it for too many days, though, I got manic, just like with an SSRI. I think it's good stuff, but pretty potent.

 

 

What supplements are helpful in lieu of an SSRI?

Lori

 

Hi Lori and welcome

 

there are a number of supplements that elevate serotonin but do be sure to check with your physician before trying any and *especially DO NOT* combine them with any meds as dangerous interactions can occur. It is also not a good idea to combine these supps without guidance from a qualified professional and it should be noted that some people may still have side effects from supplements

 

some of the supps that are used include inositol, methionine, samE, l-tryptophan, 5HTP, GABA, phenylalanine, vitB12 and vitB6 and also the herb St John's Wort(SJW)

 

my son uses inositol, methionine, vit B12 and vit B6 (in the P-5-P form)

he used 5HTP and SJW in the past but finds they make him edgy and feel weird now

 

inositol is also a B vitamin and is generally well tolerated by most people

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we tried zoloft for about 9 months. at 25 mg we noticed a boost in mood & coping skills. over the 9 months we kept increasing but we never really saw other improvement. we realized that it wasn't helping and at a higher dose, was actually making things worse. it took almost another 9 months to wean him completely off of it. at one point he was at 150 mg & it made his tics much worse, plus he was writhing & unable to sit still, manic in that he was a complete motormouth & couldn't sleep. he also gained 15 lbs. in the 9 months. after that i wasn't willing to try another one. now we are using 5HTP & it seems to give him the same boost the first 25 mg of zoloft did. when we started Biaxin we saw a bigger boost in mood & coping skills than we ever could have hoped for. he's now taking 250mg twice a day & overall is doing much, much better.

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OK, just realized i accidentally hit the "last" button & replied to a super old post. sorry about that!

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Hi All - First let me say I am not a big fan of SSRIs for kids. When my dd (now 12 and 80lbs)was given an RX for zoloft 50 mg. I hesitated and gave her only 25mg. Actually, I stated by cutting into quarters and giving her 12.5. The zoloft made a HUGE difference for her eating. Before her BMI was <1% and her psychologist wanted to put her into an in-patient eating disorder program. She severly restricted food, hide food, and had difficulty swallowing. We started her on zoloft and within a couple of weeks she was eating more normally. CBT didn't work, ERT didn't work, antibiotics didn't work (much) and the zoloft really helped us turn the corner to get her to eat more. That said, our md told us to up the dose which I did very slowly. 50 mg seemed to by ok. They told us to go up again because she still had separation anxiety, trouble sitting at the table, and other behaviors. At 75 mg., she had major rages and was violent. We are back down with the 50 mg. I continue to try to add anti-inflammatories, inositol and EFA to decrease some of the other behaviors but with a kid with eating issues it is difficult. Sounds like from other posts that eating might be helped with zoloft...

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