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landamom

Do you use any anti anxiety meds for your pandas kids?

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Hello all. My dd8 is on daily Zithromax and Augmentin. Her main symptoms are vocal and motor tics, but lately she has been having a lot of anxiety. She is saying things like she can't stop worrying about dieing. I don't know what to do for her. We are awaiting preapproval for IVIG but who knows when/if we will get that and even when we do, Dr. Bs office is already booking in February. Do any of you use any anti anxiety meds, along with the abx to help with this? I am not the kind to "cover up" symptoms... I want to treat whatever we can, but I am at a loss and hate to know that she is feeling this way. Thank you in advance for your help

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Some have found SSRIs helpful, but we tried them with both our DC and they didn't help. DS got new symptoms from them that took a long time to go away. Some have found that Pepcid and/or Benadryl (nightime) help. I would try those first. If SSRIs are going to work it takes quite a bit of time. Also, if you go that route, be sure to start with a very low dose and increase it very slowly.

 

Ko's Mom

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Thanks! That's interesting... So what is the idea behind Pepcid working? I thought it was an antacid? I get benydryl, I'm assuming that it just makes them subdued? Also is something like Xanax an SSRI?

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Landamom,

 

A couple of threads on Pepcid.

 

http://www.latitudes.org/forums/index.php?showtopic=17525

 

http://www.latitudes.org/forums/index.php?showtopic=17088

 

http://www.latitudes.org/forums/index.php?showtopic=15445

 

Xanax is not an SSRI but a benozodiazepine. This class of drug can be very addictive, but can be helpful if used on an as needed basis for extreme anxiety attacks. Ativan is a similar drug; some have reported very adverse reactions to Ativan (on an as needed basis) in Pandas children.

 

Ko's Mom

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Just a follow-up on the difference between a "benzo" and an "SSRI." Benzos can act almost immediately in terms of "calming" and are sometimes prescribed for things like fear of flying, panic attacks, etc. But like ko's mom has said, they can be addictive, and they aren't intended for long-term use.

 

Meanwhile, SSRIs -- selective serotonin re-uptake inhibitors -- are supposed to slow down the rate at which the brain absorbs serotonin, thereby leaving it available in the brain for longer periods and hopefully improving mood, lessening anxiety, etc. by virtue of that. SSRIs, however, can take up to 4 to 6 weeks to reach full efficacy, so they are by no means a "quick fix," and finding the right dosage can be tricky, especially for our kids. Dr. M. has authored a prominent paper on PANDAS kids and SSRIs, and the advice, if you decide to try one, is "go low and slow."

 

My DS takes a low dose of Zoloft (an SSRI), and we do see that it helps him. But we started him at a very low dose -- well below what the docs said was appropriate for him -- and took 4 weeks between any dosage changes -- until we found the dose that seemed to be optimal for him.

 

We hope he won't always need it, that between addressing methylation and immune issues, we'll be able to make it possible for him to do without it eventually. But for now, it helps him be happy, productive, engaged, etc.

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We used to give it in the morning with the other meds, but on the threads I posted, as I recall, some people give it at night right before bed away from all meds. My kids are older and chasing them down for meds three times a day was hard enough without adding a fourth dose for pepcid before bedtime. I am not sure that it really matters.

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At various times, we have used Gaba and Tryptophan for anxiety. Others also find 5-HTP helpful. (Not to mention motrin).

 

I'm also a big fan of CBT (cognitive behavior therapy) for anxiety. Highly recommend What to Do When You Worry Too Much by Dawn Heubner and Freeing Your Child from Anxiety by Aureen Wagner. Also search the forum for old threads on CBT, particularly those written a few years ago by MomwithOCDSon, SmartyJones, Meg's Mom and me. It's not discussed as much as it once was but it used to be discussed on this forum quite a bit and can be very, very helpful.

 

Breathing techniques can also help calm the physical response to anxiety and so can "color therapy" where you have your child imagine a "happy" color. Then have them imagine dipping their toes into a puddle of that color and sucking in, like they're a straw. They suck the color in up to their knees and hod their breath for the count of 10, letting the color soak in. Then they blow the black, anxious color out. Then they suck the happy color in again, up to their belly. Hold for 10, blow out the black. Suck again, drawing the happy color up to their armpits....blow bad stuff out. Keep going until they've flooded their bodies with happy color. The deep breathing and visualization helps calm them and gives them an element of self-control over the overwhelming feeling of anxiety.

 

I also tell my kids to stay away from people and situations that make them feel black and chose things that make them feel happy colors. This is what CBT is all about - shifting your thoughts so that you feel kike you have more control and in the process, calming the physical response to fear.

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one of ds's main presentations is anxiety. we have at various times and are again using Rescue Remedy. you can get it at whole foods or the vitamin shoppe. there are many versions - we ue the original drops in the children's version. it is the same as the adult but the adult version tastes quite a bit of alcohol. it was one of the first things i tried way back when when ds first had sudden onset and we were trying to figure things out. at that time, he had severe overreactions. he was 4.5 and did say rescue remedy did seem to help him a little. that was 4 years and many treatments ago.

we are also big fans of motrin but i worry about the effects of long term use.

 

ds is currently doing quite well although seems to have had an exacerbation beginning around halloween and pulling out of now. we just saw our integrative MD who believes a couple viruses have come back to bother him -- herpes and CMV. i should have known it -- at the time of the ramp up, his mouth was broken out but it had gotten cold so i thought chapped. hindsight is 20/20, right?!

 

anyway - we were doing motrin in the am just because things have been going so well at school and i wanted that to continue. 2 weeks ago, i started RR in the am instead of the motrin. he says he feels good with it. don't know -- could be or could also be just b/c pulling out of it.

 

ds10 has had some anxieties around school -- new math class, changing friends, yada yada - 5th grade. . . i was giving it to him also and he seemed to feel better going to school.

 

so - to make a long story longer -- i think it can help with some general anxiety. i would by no means call it a heavy hitter. it's only about $10 a bottle, so easy enough to try and see if it helps take the edge off.

 

GABA was very activating for ds8. he energy tested a while ago as troublesome for inositol - but seems okay now, but i have not tried. we have never tried SSRIs. i am huge supported of LLMs comments and she, ocdmom and meg's mom are my heros and have been invaluable supports for us in our anxiety journey -- sad so say, mostly much more so than the professional psych world. i also love anxietybc.com as a grand help for anxiety issues.

 

Good luck!

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Thank you all of you - you've given me lots to consider and try! I really appreciate the time you all took to give your suggestions. As always, you guys are so helpful and generous with your time. Thanks :)

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Landamom - My son is currently taking an SSRI and I am trying to slowly wean him from it. It is not at all helping. We slowly tapered up and tried it for a few months and there was no decrease in his anxiety level (or ocd). It actually got worse. So, I agree with the above advice. Try it if you and your drs think it is a good choice for your child but go very slowly. I recommend keeping a journal so you can write down any significant changes in symptoms or behaviors as you increase the dosage (wish I had done that earlier). I know for myself when I try to think back I can't remember if I added something like a vitamin and is that when I saw an uptick in behavior or was it when we increased the meds..???? My son also gained weight from it.

 

My older son reacts very positively to the Rescue Remedy drops (less so w/ the candy). We give it to him when he gets very upset/anxious about something and can't control himself. He takes the drops and is calmer with in a few minutes.

 

FYI, I have given my younger son (12) Ativan in order for him to be calm enough to see his at home teacher (he has school phobia). It worked a little but when it was wearing off he had some very odd and scary behaviors.

 

KO's Mom - I think I am going to try the Pepsid at night. I also have difficulty corralling my boys to take their meds several times a day so adding it to their nighttime dose would be good. Thank you!

Edited by StillHopeful

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