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monarchcat

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

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We are in probably the worst flare we've ever experienced. DS 12 1/2 has had PANDAS since he was at least 5, treated starting at age 8 1/2. We did 3 IVIG treatments with Dr. B 3 years ago with great succeess. Never back to 100% but really, really good. The past few months he's been sliding into major depression and an eating disorder. He has perfectionist OCD. In the past he's had minor OCD, mostly in his thinking so it was never really noticable or overt. These days he is completely obsessed with healthy eating, calories, reading labels, exercise, etc. He feels hopeless and worthless and is alternately angry, irritable and beligerant and then crying and desolate. In researching I found the term "orthorexia" which fits him perfectly.

 

We used to see Dr. B, but don't have health insurance anymore that will cover him (and I believe I heard he's not accepting insurance anymore for PANDAS patients?). We are also four hours away from Dr. B. I do have a pediatrician who will work with me on any treatment course necessary but doesn't know a lot about PANDAS/PANS. He's also been seeing a therapist for several weeks who, while she doesn't know much about PANDAS yet, is willing to learn and works with many adolescents and uses CBT. Currently DS is taking biaxin (switched him back off minocycline last week to see if it would help), Sam-e, magnesium, vitamin D3 and zinc.

 

I have resisted more traditional "psych meds" for obvious reasons, but I'm desperate to help him feel better. He does ok during school days, but weekends are HORRIFIC and we have just started the 2 week holiday break (and the morning has been beyond terrible). Do you think there is anything I can ask the Dr. for that would give him some relief? Is there any kind of fast acting anti-anxiety med, etc that won't backfire?

 

I feel like we probably need IVIG again. I am not sure how to make that happen without insurance (probalby wouldn't be approved anyway). We are currently in a very serious financial crisis so paying out of pocket is not possible.

 

I'm not sure how we are going to make it through this vacation at this point - something has got to give! I

 

 

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So sorry your DS is facing so much anxiety again! Yes, it sounds like maybe he needs some more medical intervention . . . perhaps a fresh exposure or hidden infection that the biaxin doesn't address?

 

In terms of psych meds, if he's taking SAM-e currently, you'll need to be pretty careful about any SSRIs, since they essentially do the same thing. Also, traditionally SSRI's take 4 to 6 weeks to reach full effectiveness, and you can't just stop them abruptly, either. So I'm not sure that's a viable answer for what you hope is a more or less temporary situation. I know some people who've used meds such as risperadol and/or clonopin, which can quell the anxiety pretty much immediately, but these can be pretty "heavy hammers." At a low dose, risperadol didn't do anything for our DS, and at a higher dose, it put him to sleep.

 

You might ask your doctor/therapist about a low dose of lamictal; we found it tremendously helpful with our DS, and it works more or less immediately. It didn't actually take away the OCD, but it gave him the ability to be more objective and less emotionally attached to it, so when his therapist or we would suggest (coach) him to let go or move past some obsession or ritual, he was more able to do it. He didn't melt down over the anxiety anymore. Lamictal is thought to help modulate glutamate, and that's been a benefit, as well.

 

Hang in there!

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Sorry to hear. Since you were doing well and his eating is healthy, non GMO, I would check for a infection either in him, family member or good friend. I posted yesterday under anorexia. Our DS lost 35lbs in 2 months at 11. Found 3 infections and life threatening allergies. I suspect Lyme too.

 

Is he eating grains instead of meat? They can be very high in pesticides, arsenic, and mold.

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Sorry to hear that. We can relate as my son who is 8 has similar patterns if holding together In school. We had him on low dose Zoloft for white some time. It it was slightly activating and made him even more agitated and bizarre but it did help take the OCD. Not complete. We took him off about 5 weeks ago because of the NIH study and now realize how much the Zoloft really did help as its pretty awful now. But he has less side effects do its a catch 22

 

Next in the list to try is abilify. If that doesn't work I'm done. As far as finding a med that won't backfire there is no such thing. You have to be willing to try if that's the direction you want to go in. I knew after 1 week that Prozac was a nightmare and I knew after 2 days that an increase in Zoloft was a disaster. I agree that it does take 6 weeks to get the whole therapeutic dose in but if its not a good fit you will know much much sooner. The prob with these meds is that are are very activating and can make everything worse. Zoloft was helpful but hurtful at the same time for us. We still to back and forth but finally decided that his real symptoms are better than side effects if we had to make a choice.

 

Well be trailing abilify when we get home from NIH. Will let you know.

 

You didn't mention if your child is being treated with abx

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So sorry. My daughter has been on many, many psych meds over the course of four years. Most of them were horrible,, especially the antidepressant. The one thing that did help quite a bit at times and at other times not so much (and she is back on a 7.5 mg / day) was Abilify. Clonipin did absolutely nothing for her.

 

I will say that my son, who has some of the same issues but has just recently gotten almost to her level of rage and irritability, has taken 12 drops of grapefruit seed extract morning and night with some significant improvement at times. Right now it 's not working as well but for a while, it was gold. You might try that first in a little water or juice. Again, you'll know pretty quickly if it's goi g to do anything--or we did. It is apparently a pretty potent anti-fungal and anti-viral, so.....?

Good luck!

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My daughter (s) have taken or currently take clomipramine, at a low dose. It is an older, tricyclic antidepressant that has been shown to help OCD. I think it does.

Maybe you can try that?

Low and slow.

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Thanks for all the input, guys! Ugh.. this just sucks so much. He's miserable and I'm a stress-ball. He has had high myco-p numbers for a year and a half, but no real symptoms. He had a fantastic year last year. These past few months feel very different from past PANDAS episodes. It's textbook depression and eating disorder, which we've never really dealt with before. I'm wondering if puberty is changing the way PANDAS expresses itself (he's most definitely in puberty). We switched from Biaxin to Minocycline for several months to try to bring the myco numbers down, but I could see that he was heading in this direction even before we switched the med.

 

I just don't know whether to ask for MORE abx (maybe a combo of some sort?) or what to do next. Maybe I need to take him back to see Dr. B and pay out of pocket somehow. Can't swing IVIG but definitely need guidance. I'm scared to death of psych meds, but will go that route if it's needed and can help.

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I'm not sure how much you've read on methylation, but if infection doesn't feel like the most prominent issue, and money is tight, then it may be something worth exploring. It's possible that SAMe is helping one part of the methylation cycle but maybe there are other cogs in the system that aren't moving smoothly.

 

Dr James Greenblatt has a book about eating disorders where he focuses on mineral and vitamin deficiencies, particularly zinc. http://jamesgreenblattmd.com/

 

It's possible that as he goes through puberty and his body changes at different and rapid rates, any deficiencies could go from moderate to severe, since the body is needing more of this or that as it grows. Suddenly, what was workable nutrition-wise isn't enough anymore and you see things fall apart.

 

Tryptophan and 5-HTP can be helpful, but since you're already using SAMe, I'm not sure I'd combine them. Sublingual methylB12 might help but knowing his genetics would probably be a big help if you decided to look at methyaltion supplements. Despite the bad press on 23andMe lately, you can still get the test done for $99. The FDA prevents them from giving you reports, but the value of the test - running raw data thru genetic genie or livewello - is still there. This was my Christmas present to myself last year and made a huge difference for my kids.

 

Good luck on the break! Been there. It still makes me shudder to remember "old times".

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Please consider purchasing Stephen Buhner's book on the mycoplasma and bartonella coinfections, especially because you know you are dealing with mycoplasma.

 

Buhner's premise is that these bacteria act as parasites, removing nutrients that they need through tissue inflammation; and that the resulting destruction and nutritional deficiencies cause the symptoms our children are suffering.

 

http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083

 

It's relatively cheap and gives a good overview of the effects of these infections. His suggestions on diet and herbal treatment are tremendous and can be used in conjunction with abx therapy.

 

He has had high myco-p numbers for a year and a half, but no real symptoms.

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I'm actually waiting for his 23andme results, but will probably be another month or so. I'm convinced he's undermethylated, but haven't wanted to push too many supplments without really knowing the big picture. I see interesting things about anoxeria and zinc deficiency. I have started zinc and magnesium over the past couple weeks, but no change (things are worse actually). I just ordered P-5-P: http://www.amazon.com/gp/product/B0019GXQK0/ref=oh_details_o00_s00_i01?ie=UTF8&psc=1 and 5-methylfolate http://www.amazon.com/gp/product/B001LQY9ZO/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1 and I have methylB12 at home that I can start as well (1000mcg sublingual)

 

I know the rule is one supp at a time and "low and slow", but I wonder if I should start the above supps together since they work together?

 

So - He would be taking:

Biaxin

Saccaromycces Boulardii (probiotic yeast given w/ biaxin 2x day)

Sam-e 400mg (200mg morning and 200mg evening)

Zinc Picolinate - 15mg

Magnesium ("Natural Calm" drink - about 150mg day)

Vitamin D3 - 2000 i.u. as liquid drops on spoon or in drink

B12 as methylcobalamin - 1000mcg sublingual (this would be NEW)

Folate as 5-methylfolate - 400mg (this would be NEW)

B6 as P-5-P - 50mg (this would be NEW)

 

 

I WAS giving inositol but even at a low dose he complained of vivid dreams and he actually wet the bed for the first time in many, many years (he said every night he kept dreaming of using bathrooms in strange places lol)

 

Any thoughts on that regimen? :-)

 

And I will definitely look at that book on Myco-P and Bart... very interesting stuff.

 

 

 

I'm not sure how much you've read on methylation, but if infection doesn't feel like the most prominent issue, and money is tight, then it may be something worth exploring. It's possible that SAMe is helping one part of the methylation cycle but maybe there are other cogs in the system that aren't moving smoothly.

 

Dr James Greenblatt has a book about eating disorders where he focuses on mineral and vitamin deficiencies, particularly zinc. http://jamesgreenblattmd.com/

 

It's possible that as he goes through puberty and his body changes at different and rapid rates, any deficiencies could go from moderate to severe, since the body is needing more of this or that as it grows. Suddenly, what was workable nutrition-wise isn't enough anymore and you see things fall apart.

 

Tryptophan and 5-HTP can be helpful, but since you're already using SAMe, I'm not sure I'd combine them. Sublingual methylB12 might help but knowing his genetics would probably be a big help if you decided to look at methyaltion supplements. Despite the bad press on 23andMe lately, you can still get the test done for $99. The FDA prevents them from giving you reports, but the value of the test - running raw data thru genetic genie or livewello - is still there. This was my Christmas present to myself last year and made a huge difference for my kids.

 

Good luck on the break! Been there. It still makes me shudder to remember "old times".

Edited by monarchcat

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I'd really consider stopping the Sacc Boulardis as a first step. My DS has horrible experiences with this one. It gives him OCD, tics, rages and hyperactivity. I know it's a "good" yeast, but I've tried it several times and get the same result each time. Try eliminating that and using a different, non-yeast probiotics for a week or so first. Then try the P-5-P while you wait for the 23andMe results.

 

I know you're dying right now, but trust me, you'll be glad if you can wait on the results before introducing the methylfolate and methylB12. Stopping the Sacc B and introducing a new probiotic and P5P will use up a few of those weeks. You don't want to introduce the methyl forms of B9 and B12 without knowing for certain his MTHFR status. If you give these to him and he doesn't need them, it could introduce mood issues of its own. Also, when you start, consider using a 1/2 tablet of the metafolin. My DD9 takes only 67mcg every other day. She gets very angry and bipolar on a higher dose. Your DS may indeed need 400mcg or even more, but you do need to start low or you can just make things worse. Have some niacin on hand as well while you're in experimenting mode. If you overdose him with methyl groups and get a sudden metldown, 50mg of niacin can be a re-set switch within hours.

 

My opinion, FWIW - stop the Sacc B now, introduce a new probiotic in 5-7 days, start the P5P in about 2 weeks. Give that 1-2 weeks and then when you get the 23andMe results, if he has MTHFR issues, introduce 200mcg metafolin + 1000mcg sublingual B12 every other day for 2 weeks and observe while you pour over other methylation results. Then go from there. Just my two cents and lord knows I've made my own mistakes, so I'm no final authority. But from my own mistakes, I can tell you that starting several things at once rarely works as hoped. It's cost me more time and I just end up having to start over, one thing at a time.

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Thank you so much for your advice. It sounds like a good plan. Interesting on the Sacc B. He's been on it for years (through the good and the bad) but I'm definitely willing to stop it and see what happens. I know inherently it's a bad idea to try to rush things. Really can't wait for the 23andMe results!

I'd really consider stopping the Sacc Boulardis as a first step. My DS has horrible experiences with this one. It gives him OCD, tics, rages and hyperactivity. I know it's a "good" yeast, but I've tried it several times and get the same result each time. Try eliminating that and using a different, non-yeast probiotics for a week or so first. Then try the P-5-P while you wait for the 23andMe results.

 

I know you're dying right now, but trust me, you'll be glad if you can wait on the results before introducing the methylfolate and methylB12. Stopping the Sacc B and introducing a new probiotic and P5P will use up a few of those weeks. You don't want to introduce the methyl forms of B9 and B12 without knowing for certain his MTHFR status. If you give these to him and he doesn't need them, it could introduce mood issues of its own. Also, when you start, consider using a 1/2 tablet of the metafolin. My DD9 takes only 67mcg every other day. She gets very angry and bipolar on a higher dose. Your DS may indeed need 400mcg or even more, but you do need to start low or you can just make things worse. Have some niacin on hand as well while you're in experimenting mode. If you overdose him with methyl groups and get a sudden metldown, 50mg of niacin can be a re-set switch within hours.

 

My opinion, FWIW - stop the Sacc B now, introduce a new probiotic in 5-7 days, start the P5P in about 2 weeks. Give that 1-2 weeks and then when you get the 23andMe results, if he has MTHFR issues, introduce 200mcg metafolin + 1000mcg sublingual B12 every other day for 2 weeks and observe while you pour over other methylation results. Then go from there. Just my two cents and lord knows I've made my own mistakes, so I'm no final authority. But from my own mistakes, I can tell you that starting several things at once rarely works as hoped. It's cost me more time and I just end up having to start over, one thing at a time.

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Thanks for all the input, guys! Ugh.. this just sucks so much. He's miserable and I'm a stress-ball. He has had high myco-p numbers for a year and a half, but no real symptoms. He had a fantastic year last year. These past few months feel very different from past PANDAS episodes. It's textbook depression and eating disorder, which we've never really dealt with before. I'm wondering if puberty is changing the way PANDAS expresses itself (he's most definitely in puberty). We switched from Biaxin to Minocycline for several months to try to bring the myco numbers down, but I could see that he was heading in this direction even before we switched the med.

 

I just don't know whether to ask for MORE abx (maybe a combo of some sort?) or what to do next. Maybe I need to take him back to see Dr. B and pay out of pocket somehow. Can't swing IVIG but definitely need guidance. I'm scared to death of psych meds, but will go that route if it's needed and can help.

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