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monarchcat

Help! Are there ANY anti-anxiety meds, etc that work for PANDAS ki

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Could it just be straight puberty symptoms, then?

Definitely more than just puberty, though I'm sure puberty is wreaking havoc as well. This is severe depression, body dysmorphia, eating disorder (orthorexia heading toward anorexia). He won't play video games or watch tv or movies ever because he feels they are not good for him. He is obsessed with how "unhealthy, fat and lazy" he was in the past (he wasn't) and terrified that he will be that way in the future.

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Monarchcat -- Your DS's obsessions sound like a form a "scrupulosity," an obsession with doing everything perfectly, always doing the right thing, being the right kind of person. When religion is a significant force in the household, scrupulosity generally manifests as a concern with doing the "Godly" thing or facing dire consequences, but for those for whom formalized religion isn't a major part of the lexicon, scrupulosity can still come forward in other terms. Our DS had a turn with scrupulosity of his own, and it was always about being the best person, doing the right thing 100% of the time, etc.

 

Again, I think all the avenues you're exploring (medical, methylation, maybe anti-anxiety meds to get through the tougher times) are great and appropriate ideas, but you might want to talk with a therapist, too, about some ERP for confronting the scrupulosity. A good one will have some ideas for you and your DS for pushing back at those obsessions.

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I want to try hypnosis, i saw a documentary on sective mutism where the cause is said to be anxiety. They were trying with some success a hypnotist . We just been sobusy with relocation we havent had time to track ome down.

Edited by 4nikki

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This all sounds very familiar. Our DS (14) has been battling with scrupulosity OCD for a few months now. However, in the last six weeks, it has been an all time high since our journey began with PANS back in late 2013. He is pretty much overcome with doubting his faith and doing a number of compulsions to "overcome" the obsessive thinking. It has become pretty much non stop the past few days and is starting to effect his work and ability to focus. We started our journey on azith for high myco p and my son initially responded almost immediately and we saw almost immediate relief and we stayed on for a few months and came off, using only for flares. However, it seemed that it was no longer effective when we picked it up this spring, so we switched to biaxin....did nothing for the 30 days we took it. We have now been off abx the past week or so...but have talked with DR about going minocycline or doxy. He wanted us to try a round of inositol dosing for 6 weeks before looking at going to new abx. Well, the inositol has done nothing over past three weeks and seems to make it worse. At this point, we are just trying to dampen things so that CBT can be effective. We are using NAC, vit c, probiotic, omegas, and multi vit. I don't want to go SSRI unless absolutely necessary and like earlier post I would be interested in something fast acting to take the anxiety down some to we can at least get through therapy sessions. Any suggestions or am I missing something that may need to be addressed?

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I didn't see ibuprophen on your list...have you tried that? Makes a huge difference for our kiddo, even though I'm trying to find a longer term alternative (more fish oil, and going to try the Bravo yogurt, Swiss protocol someone recently posted about...

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Have you tried antivirals?

 

When our ds flares we normally try azithromycin and if that doesn't work, we go to acyclovir. Gave up years ago trying to work out the triggers for my 2 kids.

 

Now we just go with what works and for some reason for ds (not so much dd) acyclovir will often bring him out of a flare.

 

Our pediatrician feels it's safe and he certainly takes it with no noiticeable side effects. We get the liquid and he even says it tastes nice. :)

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ladymavs-

 

It didn't help us- but helps some. A beta blocker propanolol is used off label to help with anxiety. Fast acting. Little to no side effects. You could try it-

 

My daughters are both on Prozac (SSRI). It hasn't helped with the ocd or anxiety, but was a game changer as far as mood and emotional lability. If you have any of that along with the ocd I would urge you to try at a low dose. Prozac start at 5mg, increase to 10mg after a couple of weeks. I resisted for a long time, and am so sorry I did.

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My dd used Propranolol for 9 months. It is meant for fight or flight (startle reflex) type anxiety, not GAD type symptoms. It's used by performers for stage fright.

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My dd used Propranolol for 9 months. It is meant for fight or flight (startle reflex) type anxiety, not GAD type symptoms. It's used by performers for stage fright.

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We also use and like propranolol.

 

For social and general anxiety -- what I've been told is that it may reduce the negative feedback loop of high anxiety -> blood pressure / racing heart -> noticing the physical response -> more anxiety.

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I was the OP on this thread so I thought I'd pop back in. I haven't been on the board for a while so I didn't realize this thread had been bumped back up. We never did SSRIs or anti-anxiety meds. In a moment of absolute panic I convinced his dr to prescribe lamictil based on several posts on this board, but I never gave it to him. His therapist at the time didn't think he was a danger to himself so we just held on and tried to get through it. We were seeing a therapist (which he hated) and a adolescent specialist weekly for weight checks. As his nutritional status and weight improved, the body dismorphia and the depression lifted. Based on my own research on anorexia, I started him on zinc supplements, and that is the thing I think made the most difference in the long run with getting him over the anorexia and depression. He just sort of came through it. After doing 23andMe and a billion hours of reading/research I find I still don't understand most of the methylation stuff but we are making some progress. We haven't had a repeat of that awful 6 months at least. He currently takes Azith, lithium orotate, Magnesium, Zinc, hydroxy B12, CoQ10, Iron (he's a vegetarian), and probiotics. I'd like to tweak that list a bit but I'm scared to rock the boat. I did a HTMA on him a while back and there are some issues there, but I haven't had time to really figure it out and determine what else to add in. He also basically refuses to take any more supplements than he is taking now.

 

We also tried Inositol in the past and it didn't help, probably because it's a methyl donor and he can't tolerate methyl donors, even though he needs them desperately (very confusing genetics). That could be why your son doesn't do well on it either.

 

You might give lithium orotate a try, along with B12 and magnesium. If you haven't done MTHFR testing, probably try hydroxy B12 rather than methyl B12. Or try small doses of methyl B12 and watch to see if it makes him flare. None of it is a magic fix, at least for us. It's been slow going and just trying to get incrementally better.

 

 

This all sounds very familiar. Our DS (14) has been battling with scrupulosity OCD for a few months now. However, in the last six weeks, it has been an all time high since our journey began with PANS back in late 2013. He is pretty much overcome with doubting his faith and doing a number of compulsions to "overcome" the obsessive thinking. It has become pretty much non stop the past few days and is starting to effect his work and ability to focus. We started our journey on azith for high myco p and my son initially responded almost immediately and we saw almost immediate relief and we stayed on for a few months and came off, using only for flares. However, it seemed that it was no longer effective when we picked it up this spring, so we switched to biaxin....did nothing for the 30 days we took it. We have now been off abx the past week or so...but have talked with DR about going minocycline or doxy. He wanted us to try a round of inositol dosing for 6 weeks before looking at going to new abx. Well, the inositol has done nothing over past three weeks and seems to make it worse. At this point, we are just trying to dampen things so that CBT can be effective. We are using NAC, vit c, probiotic, omegas, and multi vit. I don't want to go SSRI unless absolutely necessary and like earlier post I would be interested in something fast acting to take the anxiety down some to we can at least get through therapy sessions. Any suggestions or am I missing something that may need to be addressed?

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We did MTHFR testing (not the complete 23andme), but came back heterozygous for a1298c.  According to what I have read, this is often seen as something of no big concern.  However, we did find some multivimin with methy form of b12.  I would like to find a magnesium and zinc and b6 supplements as I am sure he probably does not have enough of these.  What dosage of B did you use?  I wish the azith had not pooped out on us...because we have not been able to find an abx that knocked out the OCD like azith seemed to do initially.  

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