Interim pschy meds

[Kiera]

Hi all,

Though I hate to go this route I need advice on pschy meds to calm ds down! Ped neurologist has ordered high dose ivig (ds will be first) so awaiting insurance confirmation, which may be a problem. In the meantime, she recommended a pschy consult for meds to help with explosive behavior, ODD, getting nothing done at school etc etc. Even if ivig is approved, it may be awhile before seeing positive effects, also "Saving Sammy" did some pschy meds during his 3yr healing period, I'm not opposed to meds to make life livable while at the same time tackling the root cause. He's already on low dose prozac (has been since prior to pandas for anxiety) but what other meds have you seen sucess with, or ones to definitely avoid. Many thanks for responses!

[peglem]

Hi all,

Though I hate to go this route I need advice on pschy meds to calm ds down! Ped neurologist has ordered high dose ivig (ds will be first) so awaiting insurance confirmation, which may be a problem. In the meantime, she recommended a pschy consult for meds to help with explosive behavior, ODD, getting nothing done at school etc etc. Even if ivig is approved, it may be awhile before seeing positive effects, also "Saving Sammy" did some pschy meds during his 3yr healing period, I'm not opposed to meds to make life livable while at the same time tackling the root cause. He's already on low dose prozac (has been since prior to pandas for anxiety) but what other meds have you seen sucess with, or ones to definitely avoid. Many thanks for responses!

Well, we've got other issues besides PANDAS, but we've not really had any success with psych meds at all. Okay, I take that back- risperdal helped initially, but I think that was just because it finally helped her to get some sleep. A few months down the road, I think it made things worse, or at least stopped making things better. For awhile we used the melt in your mouth sublingual tabs for an "as needed" rescue when she would have fight or flight, self injurious, aggressive, ragey episodes. It worked pretty well for that, except she'd kind of go through withdrawal as it wore off. Ultimately, it seems the psych meds made it confusing to know if the symptoms were PANDAS or med side effects.

[MomWithOCDSon]

Our DS is on low-dose Zoloft and about 9 months ago, our psych added low-dose lamictal to the mix; it's a mood stabilizer/anti-convulsant. For us, it was a turning point in terms of his ability to calm down and remain calm; it essentially ended the arguments and fights over homework, anxiety triggers, OCD ERP homework, etc. It's also supposed to be a glutamate modulator, which we saw as a plus.

 

I've heard that coming off it is something of a long-term process, however, so not sure it fits the profile for a "temporary" addition to your arsenal. But it might be something to inquire about and consider.

 

Our experiences with some of the other "calming" psych drugs like risperadol, zyprexa and Seroquel, unfortunately, were less positive. At low doses, they did absolutely nothing. At only slightly higher doses, meanwhile, they knocked him out and all he could do was sleep. But once the drug wore off, he was back to exactly the same level of anxiety he'd had before he popped the pill.

[dcmom]

Kiera-

 

I hate to be a negative voice, but we wanted to try this route last spring. Our daughter was in a pandas episode, and we needed help fast- any way.

 

I have NO issue whatsoever with psych meds. I don't see why anyone would, frankly, more than any other med- just important to do the typical risk vs benefit evaluation.

 

Well- we couldn't find the "band aid" we were looking for.

 

We tried low dose zoloft, with no effect (other than some initial difficulty in getting to sleep).

 

The main issue, I think, is- most of the preferred meds take a month to see their effect. PANDAS kids, especially, should be started at a very low dose, and slowly titrate up. This means, theoretically, it could be twelve weeks before you are to a level that starts making a difference.

 

For us, with medical treatment, an episode is over, or WAY calmed down before twelve weeks. ALso, during an episode and the medical treatment and healing process- there is so much movement in symptoms and severity, that it would be impossible to tease out if it was the psych med, or the med treatment (IVIG, steroids, pex, etc) that was causing improvement.

 

Due to these factors we stopped the zoloft about five weeks after beginning, without trying a higher dose.

 

I think your energy might be best spent in getting IVIG fast. I don't know that a psych med will help with a spike in symptoms post ivig. I think psych meds are an excellent option for issues that become "chronic".

 

I am not aware of any relatively "safe" med that would work fast, and be able to be removed fast If you find something- PLEASE keep us posted.

[Kiera]

dcmom, thanks for your insight! I'm afraid we may be in the chronic stage already! DS never really got back to baseline since April exacerbation, plus, to complicate things, he has had many other multiple diagnosis prior to pandas, but pandas symptoms are the worst. Feel like we're just in a holding pattern for months and months, waiting to see new Drs, finally getting ivig ordered, waiting insurance etc, time keeps marching on and daily life is difficult with ds lashing out and nothing happening in school, need to do something to remedy the present, for quality of life for all in house!

[nicklemama]

If you are looking for something to reduce explosions, lamictal might do it for you. My DS was put on lamictal before we had a PANDAS diagnosis. His diagnosis at that time was Intermittent Explosive Disorder. It helped. He stopped having raging tantrums. He still got angry but not nearly to the extent he did prior. It did not help w/ his OCD.

 

The upside is, if your child is not allergic to lamictal, it has a very safe profile and its FDA approved for children w/ seizures. For PANDAS, its off label. You should know that it carries a risk of Stevens-Johnson syndrome, which can be life threatening if you don't recognize the symptoms. Sounds very scary but its actually a very small risk, but mostly a risk during the 1st 8wks of taking lamictal.

 

We saw some benefits w/in the first couple of weeks.

 

The downside is, you have to go low and go slow to avoid the risk of SJ Syndrome. Do a lot of reading if you choose lamictal, on its potential risks so you are aware. The other downside it has taken DS a long time to get off it. We started the 1st of August. He was on 50mg bid. We just did another reduction on Wed and he is now on 12.5mg bid. When we reduced larger amounts and faster, we saw lots of irritibility and anger.

 

At the current rate, he will be off lamictal completely in 6wks. Its going to take 4.5months to get him off.

 

I know another mom here had a son get sick and couldn't keep anything down and they went cold turkey w/out side effects at all. Its really just child dependent, according to the pdoc.

 

Pdoc talked about risperdal or lithium but I just was not comfortable w/ them. The risk of risperdal or any of the antipsychotics is permanent movement disorder and huge weight gain. That said, if your child needs relief, you need it and you may have to choose an antipsychotic.

[Kiera]

nicklemama, thanks for that insightful info. May I ask, why you are taking ds off lamictal if it's been helping? If symptoms return, are you planning on resuming? Is it because you've done pandas treatments in the mean-time which are relieving symptoms? Thanks.

[peglem]

dcmom, thanks for your insight! I'm afraid we may be in the chronic stage already! DS never really got back to baseline since April exacerbation, plus, to complicate things, he has had many other multiple diagnosis prior to pandas, but pandas symptoms are the worst. Feel like we're just in a holding pattern for months and months, waiting to see new Drs, finally getting ivig ordered, waiting insurance etc, time keeps marching on and daily life is difficult with ds lashing out and nothing happening in school, need to do something to remedy the present, for quality of life for all in house!

The risperdal sublingual tabs- as low as .5mg did work well as a rescue med as long as we didn't use it too much. Also, have had rx'd diazepam (valium) for several years now, which is fairly fast acting- does not need to build up in system.

[mtmom]

When my son went to see Dr. K he was on Abilify and Straterra a very low dose of each. Dr. K mentioned that he needed to come of the meds to see the effects of the IVIG. Did you ask the Dr. prescribing the IVIG their thoughts on this?

[nicklemama]

We are taking DS off lamictal because we don't feel he needs it any longer. He is doing extremely well 6 months post IVIG. The anger and irritibility only last a few days to a week after a reduction. It seems to take DS's brain time to adjust to each reduction. The last reduction, three wks ago, we saw no change in him at all. We don't know if its because we did a smaller reduction and took more time (3wks) between reductions or if he's now taking so little of the med that its not having any effect at all.

 

He's been on lamictal since June 2010. He had IVIG in May w/ Dr K but weren't required to get him off before IVIG. Dr K does want him off the lamictal. He said we won't know what his baseline behaviors post IVIG are until he's no longer taking it.

 

Should he have a relapse, I would consider other things before placing him back on psych meds. Namely, we would do IVIG again. When he went on lamictal everyone thought he had a psychiatric disorder not an infectious/autoimmune disorder. I'm not saying I would never again use psych meds but I know now I have other options to explore.

[petie_tk]

My son had Strep Throat Oct. 11, 2011 and quickly exhibited OCD symptoms within a week which worsened as the weeks have passed. He was diagnosed with a severe case of PANDAS thru Dr. Thomas Lin in Irvine and went on high doses of Antibiotics and a Prednisone Steroid Burst but I didn't see much improvement. Prozac did wonders for the Depression and Anxiety (10 mg.) and has improved his mood greatly. The OCD was not getting better though as he has a major fear of contamination so we added Zyprexa to the mix(2.5 mg) which after 1-1/2 weeks got rid of a great deal of the OCD. Unfortunately, he gained 8 lbs. in two weeks so the doctor is now switching him to Abilify(2 mg.). He's only taken it for 1 night at that dose and his OCD returned once he weaned off Zyprexa. Hopefully the Abilify will work the same and kick in within 1 week or so. If not, we might try Risperidone and hope it doesn't cause as much weight gain as the Zyprexa. If the Abilify or Risperidone don't work, we'll have to put him back on Zyprexa temporarily. My son does have elevated EBV Titers so we are trying to figure out a natural remedy to address that. The Strep is completely erradicated but the antibodies did the damage and created this madness. We live in Santa Clarita in So. Calif and there aren't many doctors in the area that are PANDAS experts.

[Bill]

Hi all,

Though I hate to go this route I need advice on pschy meds to calm ds down! Ped neurologist has ordered high dose ivig (ds will be first) so awaiting insurance confirmation, which may be a problem. In the meantime, she recommended a pschy consult for meds to help with explosive behavior, ODD, getting nothing done at school etc etc. Even if ivig is approved, it may be awhile before seeing positive effects, also "Saving Sammy" did some pschy meds during his 3yr healing period, I'm not opposed to meds to make life livable while at the same time tackling the root cause. He's already on low dose prozac (has been since prior to pandas for anxiety) but what other meds have you seen sucess with, or ones to definitely avoid. Many thanks for responses!

 

I initially felt the same way with our son who was 7 turning 8 when we made the decision to try medication. In hindsight, not really a hard choice when your 7 year old child threatens both parents....low dose Zoloft helped initially. After 3 years it just stopped working. Took us 3 months to find that low dose Prozac worked. These worked for the anger; nothing touched the OCD. Between the Zoloft and the Prozac, we tried a number of other drugs/combinations but nothing worked. Very interesting for us was that we saw immediate - as in 2 hours - dramatic effect on our son when starting the Zoloft. It was 2 or 3 days most before we realized the Prozac was working. The doctors didn't believe us of course. I've since seen studies confirming that some patients are super responsive. (There's a clue in there for us somewhere....)

 

Son was eventually diagnosed with Pandas and Lyme though the doctors do not agree which came first or for how long....

 

For comparison, between age of 8 and 11 (50-70 lbs), 12.5 - 25mg Zoloft. 11 and 13 (70-95lbs), 40 - 20mg Prozac. We were able to lower the Prozac from 30mg to 20mg after the 2nd IVIG. I think we could lower again but the psychiatrist wants to wait a little longer.

 

bill

Edited November 26, 2011 by Bill

[JAG10]

Very interesting for us was that we saw immediate - as in 2 hours - dramatic effect on our son when starting the Zoloft. It was 2 or 3 days most before we realized the Prozac was working. The doctors didn't believe us of course. I've since seen studies confirming that some patients are super responsive. (There's a clue in there for us somewhere....

 

 

Bill,

 

Hi. This was our experience as well....almost the opposite of what should be expected. Meds would work great nearly immediately when they should have taken a couple weeks. After a couple of weeks, that's when they would either stop working or yield some undesirable side effect. Perhaps the build up of what should have produced the desired result was too much for my girl. This has always made me buy into the belief of pandas kids needing low, low, low dose. But let me share with you this....

 

My dd11 (almost 12, sigh) had been at 90-95% for quite some time after multiple ivig's w/Dr. B. Her remaining symptoms were ADD type of symptoms and not that severe. So, I thought....well, maybe she just had some ADD that wasn't related to this autoimmune/infectious based issue. So, we tried some low dose Strattera......nothing much happened. Then, we tried some low dose stimulant (concerta) and within hours, my girl who hasn't had tics in over 18 months starts with facial/mouth tics. I don't give her the stimulant the next day, tics gone. I believe that psychiatrist in CA, Dr. Jori Goodman stated if a child gets tics from ADHD meds that's a clue those symptoms are really pandas. I think he may be onto something there.

 

So, after her last ivig, we did a steroid taper and that did it, that got rid of those remaining, lingering ADD type symptoms. So, I suspect the conclusion for my girl anyway, is that ALL of her symptoms are related to pandas/pans and there is no underlying condition. I guess that would be great news, but the steroids do come with side effects. She is fighting some weight gain, acne and moon face from the taper which can also be tough on a preteen girl.

 

Anyway, long story short....the way your child responds to psych meds may very well be a huge clue. It was for us; heck, if they worked "properly" we would have stopped there years ago!!! But I caution folks not to waste too much time buying into the idea that they just "haven't found the right med yet."

 

Jill

[tpotter]

Kiera-

 

I hate to be a negative voice, but we wanted to try this route last spring. Our daughter was in a pandas episode, and we needed help fast- any way.

 

I have NO issue whatsoever with psych meds. I don't see why anyone would, frankly, more than any other med- just important to do the typical risk vs benefit evaluation.

 

Well- we couldn't find the "band aid" we were looking for.

 

We tried low dose zoloft, with no effect (other than some initial difficulty in getting to sleep).

 

The main issue, I think, is- most of the preferred meds take a month to see their effect. PANDAS kids, especially, should be started at a very low dose, and slowly titrate up. This means, theoretically, it could be twelve weeks before you are to a level that starts making a difference.

 

For us, with medical treatment, an episode is over, or WAY calmed down before twelve weeks. ALso, during an episode and the medical treatment and healing process- there is so much movement in symptoms and severity, that it would be impossible to tease out if it was the psych med, or the med treatment (IVIG, steroids, pex, etc) that was causing improvement.

 

Due to these factors we stopped the zoloft about five weeks after beginning, without trying a higher dose.

 

I think your energy might be best spent in getting IVIG fast. I don't know that a psych med will help with a spike in symptoms post ivig. I think psych meds are an excellent option for issues that become "chronic".

 

I am not aware of any relatively "safe" med that would work fast, and be able to be removed fast If you find something- PLEASE keep us posted.

 

I have to completely agree with DCMom. We had terrible experiences with our DS on psychotropic meds, and after I saw Dr. Murphy's article years later...it all made sense. In fact, when my dad (who died from Parkinson's this year) was given some heavy duty meds and became violent, I even told his doc about the article (and the fact that I suspected he had probably had PANDAS/Lyme all these years...my DS18 is almost a carbon copy of my dad), she was extremely interested in reading up on the article, and also stopped my dad's meds.

 

It's not that I disagree with psych meds, it's just that many kids are put on them without ruling out other diagnoses that the meds may be contraindicated for. In my DS's case, he became horrendously violent (swung a metal pole at my head in a split second), and the doctor actually INCREASED the dose. But, when we finally had a diagnosis that more clearly matched the clinical picture (PANDAS first and then Lyme as well), and started him on abx, his symptoms went away in as few as 1 hour! As that wasn't enough anymore, we added in 1 PEX, and now have done multiple IVIG's. But, he's a different kid now (not 100%, but at least 75%.) I would focus on getting the IVIG quickly. If you have problems getting the authorization, PM me, and I'll give you some hints...we found very hard, and finally got it.

[smartyjones]

very interesting thread -- this topic is often discussed but i wonder if we could somehow pin this. do we have somewhere here or on pandasnetwork that discusses these experiences of jag, mom, tpotter, dcmom - and others?

 

is there any published literature on psych meds with pandas?

 

we discovered this was pandas early on -- only due to one savvy behavioral therapist. otherwise, i think we would have definitely been lost in other diagnoses and treatments.

 

we've had recent trouble at school and from those with no proper ability to diagnose trying to slap on labels that aren't correct just b/c they don't know and understand pandas - or actually anxiety for that matter. certainly with underlying expectations that medication is the answer.

 

good luck with your decisions, kiera.