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panic - anxiety - agoraphobia


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I know this question has probably been asked before. I have read mixed results and some very scary stories of psych meds making our PANDAS/PANS kids worse so I am very nervous to try anything :( I have been giving her valerian root extract once or twice a day and I think it helps a bit but not enough right now. This is the most non-stop OCD anxious she has been (am I going to die? Are my lungs going to stop working? Why does it feel like this or that?? and on and on)). She will stop in her tracks and clutch her chest. She will cry and look petrified for hours. One doctor mentioned resperidol. One doctor mentioned Luvox. Another doctor mentioned valium. None would actually prescribe though. Her psychiatrist appointment is not until Aug 29th.

Thanks!

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Tryptophan works well for my DD (along with motrin). You might also research Gaba. But I'd also try ERP. Feeling in control over your own emotions is a powerful "drug" that helps the supplements work that much better. But I'd research anything fully and check it against all meds she may be on. For example, I have no idea how tryptophan might react with valerian root. If you can, consider a visit to a naturopath while you wait for your appt. They often can take patients quickly.

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Thanks LLM!

I tried 5 HTP with her and the 2nd night it made her loopy!! She stayed on it 3 more days then her postural tachycardia started and we stopped it.

ERP!!!

I have a question about that. How do we find a good therapist? Do they usually take insurance? (Not that it matters!;))

And how do we do ERP when her fears are so "magical" or "transformational"? (as we have learned to call them). And now her fear is surrounding her heart and lungs and that they will stop working.

She has been seeing the same psycholigist since December which is when she had the sudden onset.

Some days just going about her day is ERP as she can have fears/OCD about EVERYTHING???!!!

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My DS11 had major improvement in anxiety when addressing his MTHFR deficiency with methylfolate (available online from iherb.com, among other places.)

Thanks LLM!

I tried 5 HTP with her and the 2nd night it made her loopy!! She stayed on it 3 more days then her postural tachycardia started and we stopped it.

ERP!!!

I have a question about that. How do we find a good therapist? Do they usually take insurance? (Not that it matters!;))

And how do we do ERP when her fears are so "magical" or "transformational"? (as we have learned to call them). And now her fear is surrounding her heart and lungs and that they will stop working.

She has been seeing the same psycholigist since December which is when she had the sudden onset.

Some days just going about her day is ERP as she can have fears/OCD about EVERYTHING???!!!

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SoSudden --

 

At his worst, our DS sounds very similar to your DD. He had his first and only panic attack, complete with racing heart rate, sweating, nausea, etc., that sent us to the ER, afraid there might be something besides anxiety behind it. After that, he was almost afraid to move for fear he would have those feelings again; he thought he was dying.

 

The abx were the major turnaround mechanism for him, so I wonder how your DD is faring with fighting her infection(s)? While some anxiety and OCD definitely remained for DS despite the abx therapy, it never again climbed to that panic/agoraphobic level.

 

We have used valerian root (seems to take the edge off but when anxiety is really high, it isn't powerful enough), and we, too, are working on a methylation theory with DS, boosting his zinc and B6. We are also one of those families who uses low-dose psych drugs, at least for now, as they seem to help and, at the right dosages, we're not contending with any negative effects at this time; DS takes Zoloft and lamictal. He had another dramatic jump in improvement upon our adding the lamictal, but I recognize that this is a serious drug and it and other meds like it need to be approached with research and caution. I will say, though, that at one point DS was put on risperadol, and it was not helpful and had side-effects we all were fearful of.

 

ERP is definitely a great help in learning to manage the anxiety and defeat the fears. Your current psychologist is not versed in ERP? Even when you find someone who claims to know OCD and ERP, I think it can be a little bit trial and error, finding the right fit for your kid and your family, and finding that therapist that has not only the skills but the relatability that draws your kid to value their advice and exercises. If you need to find someone new, I would start with the IOCDF; their web site has a "Find Help" section and you can search by location, specialties, etc.

 

IOCDF - Find Help

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My dd12 has a long history of anxiety. Most recently, we have dealt with panic disorder that not only keeps her out of school, but had her hiding behind her bed when her homebound teacher would come to the house. We've tried a few meds. Years ago, Zoloft (an SSRI) caused a horrible, sudden change in dd. I lost her completely for a full year--she had 4 stays on a child psych unit during that year. Beware of SSRIs! Ativan and similar meds caused strange thoughts/behavior. Desperate to get her back to school, I allowed a low dose of Abilify (like Risperadol, but fewer side-effects.) It worked! I could not believe the change! Dd even put on the 10lbs she had lost due to anxiety. That was at the end of last school year. I have since taken her off of it for the summer. Now, seperation anxiety is back. Next week, she will go back on Abilify in preparation for the start of school.

 

Dd was just dx'd with PANDAS last week. Dr. L. is treating her with long-term abx. She suggested that we continue the Abilify until winter break, wean her off then, and see if abx can carry her from there.

 

You and your dd have my sympathies. Anxiety can be so devastating, and as a parent, it's hard to watch.

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My son got sick when he was 7. He would complain that his chest hurt when he had "headaches". It was caught on tape when he was 8 during an ekg as a partial right bundle block. He was then referred to local children's hospital where they did full heart workup - xrays, more ekgs etc - heart normal. He is now taking small dose of proranolol for fast heartrate.

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ERP is crucial and speaking from experience, most of the psys we saw didn't k ow what they were doing. Contact dr Storch at USF and see if he knows a good therapist in your area. If not, go to Usf for a 3 wk intensive. It is life changing for these kids. Well worth it and most insurance cover it. As for meds, Zoloft helped for a while. Abilify was great but caused horrible side effects--30 pounds in six months and loss of menstrual cycles. Ivig worked. Erp was crucial.

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