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Off the chart anxiety attacks?


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We are investigating PANDAS/PANS for DD 19--her brother ha slong been dx'ed with classic case. She has mild OCD and phobias, but what is really major, besides worsening agoraphobia, is her anxiety. Triggers seems to be things to do with school or friends (fear they'll abandon her or that she'll look like she's abandoning them, and being confronted with major rule infractions (usually denied). I've googled anxiety attacks and the ones she has seem way beyond anything I read about. There is hyperventilation and passing out several times during the course, but also crying jags, brief bouts of paranoia and rage, self-injurious behavior (hitting herself in the face, taking clumps of hair in hand and pulling hard), and hallucinations, mostly visual but sometimes auditory as well. One time she attempted to jump out of a second story window in what appeared to be an extreme flight response. The longest an attack goes on is an hour or so--sometimes it may be only 15 minutes or so.

 

I've never had a satisfactory answer from the various P docs that have seen her--except she's complicated and is definitely not psychotic--she has hallucinations outside these extreme episodes. She is also definitely not bipolar and does not present as depressed though she sometimes says her life sucks--there are other physical ills going besides the anxiety so that's understandable. The current consensus of Pdocs is she should go to a psychiatric facility, which she refuses (over 18--her right.)

 

Am I on the wrong track of thinking this could be PANDAS/PANS at work? ARe any others of you experiencing anything like this? Am feeling rather desperate this--I had to call 911 last week and she ended in a hospital psych unit for a week--with absolutely nothing to show for it in terms of dx or treatment.

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I saw this with one of my daughters. it was horrible. yes, I think you are on the right track. you are waiting to take her to dr l, right? steroids, pex, abx, intensive therapy (only AFTER medical tx made her somewhat reasonable) brought her peace.

praying for you and her.

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Am I on the wrong track of thinking this could be PANDAS/PANS at work? ARe any others of you experiencing anything like this? Am feeling rather desperate this--I had to call 911 last week and she ended in a hospital psych unit for a week--with absolutely nothing to show for it in terms of dx or treatment.

 

My DS8 had many of these behaviours - extreme anxiety, fight-or-flight type reactions to seemingly insignificant or imagined causes, rage, aggression, self-injuring, OCD, debilitating phobias, agoraphobia, crying jags, paranoia, auditory hallucinations, etc. He also tried to jump out a 2nd story window and I had to restrain him which made him panic more. Oh, your post brought back many horrible memories. Countless p docs, every psych label you can imagine, psych meds, etc. Nothing worked. Until he ended up on amoxicillin for strep throat. On days 4-10 of that course of amoxicillin we had a happy, calm child. The difference was so dramatic that it was frightening (kinda the reverse of the PANDAS onset experience). That led us to PANDAS, and later to lyme. A year ago he started aggressive combination antibiotic therapy for lyme, bartonella, and chronic strep. Within 2 months he had changed dramatically. He no longer met the criteria for his alphabet soup of psych labels. His psychiatrist discharged him. He had an amazing and successful year. It's still a work in progress, but looking back to 12 months ago I can't believe he's the same child.

 

If something in your gut is telling you to pursue PANDAS, then definitely listen to your gut!

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Thanks for sharing your experiences. I felt the meltdown that took her to the ER last Monday was a big setback--she had been on clindamycin for five days when it happened. Her titers were tested at 656 three weeks before the Clindamycin was prescribed--took a while to wheedle the prescription. They questioned it at the hospital but gave it as was prescribed by one of their ENTs. She had a far less severe anxiety attack while in the hospital after five days when she found she couldn't get out because they's put a 48 hour hold on her. Maybe I was expecting too much too soon from the abx--but her brother said clindamycin didn't really help him until he'd taken it two or three weeks. And perhaps we need more patience as this has been going on a long time with no treatment--if she has PANDAS/PANS she's pretty chronic at this point.

 

We don't have an appointment with Dr. L until October 2. Given this latest crisis, I feel I can't wait to make more progress--got an appointment with Dr. T for next week to tide us over until we can get to Dr. L.

 

Interesting thing about the gut--I only really first thought of PANDAS/PANS for her in March and brought it up with her Pdoc--he thought it interesting but too late to do anything although he said he would investigate the right antibiotics and prescribe them. I didn't really go after this until Dr. L in going over my DS's case in June brought up her view DD should be evaluated (the reason I got DD's titers tested). Going through old records I found notes from two different doctors from three years ago saying DD acknowledged having OCD and phobias and stated her concern that she had the same thing as her brother. Not that anyone (including her) said anything to me! Arghh--so frustrating--the Pdocs at the hospital also didn't seem to know what to do with the possible PANDAS angle--i guess understandable as they deal with adults so PANDAS is pretty foreign.

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Personally, I would be looking into other things, too, such as the possibility of mold (we just found a large source in our house, and may also have it throughout our a/c ducts as well.) When it was stirred up (by the handyman removing it improperly when he found it, and didn't tell me,) we all became extremely ill. DS is having a huge increase in anxiety,OCD, had a massive rage attack last night (attacked his brother out of nowhere...hasn't done that in a very long time,) and many more symptoms. We did not suspect there could be mold, but there's now no question it's playing a role. Also, I would consider checking for Lyme. Maybe Dr. T. could put your DD on a combo of abx to tide you over, but I would also honestly suggest you get her and DS tested for Lyme. Again, this was not something we ever expected to find, but it turned out that both of these, plus other co-infections, as well as strep, and who knows what else, are all turning out to play a role.

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tpotter,

Thanks--she tested negative on Western Blot and i think tested neg on Igenex three years ago. But things have worsened since then so maybe time for a retest of Igenex. I don't even want to think about mold but we live in an older house so it's worth considering.

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tpotter,

Thanks--she tested negative on Western Blot and i think tested neg on Igenex three years ago. But things have worsened since then so maybe time for a retest of Igenex. I don't even want to think about mold but we live in an older house so it's worth considering.

 

 

I know how you feel about mold, and older houses. Unfortunately, I finally realized we will never get well until we get rid of all the mold. One place to check is your HVAC and ducts. Look for water leaks (that's the first thing we found by accident!)

 

Also, concerning lyme. I wouldn't spend the money on Igenex until you consult with an LLMD. Our LLMD did not think it was necesary, because lyme is a clinical dx, and if your dd has bartonella, it can hide the lyme and co-infections, anyway, so the tests will be negative. Also, if she actually has congenital lyme, the tests may not show up as negative, because her body may not recognize it as foreign, so may not set up a response. Many LLMD's are also actively looking for mold at this point, as well. I am just starting down the mold path, so I can't give you lots of details, but check with "Red" who seems to know more about it.

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Thanks for sharing your experiences. I felt the meltdown that took her to the ER last Monday was a big setback--she had been on clindamycin for five days when it happened.

This sounds like a die-off/herx reaction to me. Psych and pain symptoms show a definate ramping up several days after an Abx switch/increase for DD10 (lyme/bart). Her first (when first starting Abx) was definately the worst and put her in a wheelchair for a couple of weeks. This was before I knew anything about detoxing. Her teacher was scared to death by the anxiety attacks.

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Wow! A herx reaction--hadn't thought of that--gives me some hope the abx may be helping after all. The one thing I got from all of this is that there were medical witnesses to her meltdown in the ER, including hallucinations. I sometimes think doctors think I am making this stuff up and I am a Munchhausen (sp?) by proxy mom. In reality, things sometimes get so bizarre one really could not make them up.

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Wow! A herx reaction--hadn't thought of that--gives me some hope the abx may be helping after all. The one thing I got from all of this is that there were medical witnesses to her meltdown in the ER, including hallucinations. I sometimes think doctors think I am making this stuff up and I am a Munchhausen (sp?) by proxy mom. In reality, things sometimes get so bizarre one really could not make them up.

 

I agree, this could be a herx if she had recently started clindamycin. DS had some horrible herxes with med additions and increases - particularly from rifampin. He would get extremely agitated, sometimes totally berserk. Rifampin hit him so hard he couldn't walk for a day. Then the next day all h@ll broke loose. But after riding out the herx - the worst one lasted 2 weeks for him - we always saw great improvement.

 

I know exactly what you mean about the validation when a professional witnesses what you've been saying. I was worried too. Near the beginning, DS could hold it together in front of other people and saved his worst for me. Doctors would give me that condescending "sure I believe you" kind of nod, that drove me crazy! I took to secretly video-taping a lot of DS's episodes because I was afraid of the same thing. Eventually he just got so sick he couldn't hold it together for anyone anymore so the videos were no longer necessary. Then docs started taking me seriously, but just ended up referring him to psych. Getting a PANDAS and then lyme diagnosis was an uphill battle. Hopefully having a son already diagnosed with PANDAS and having access to professionals like Drs L & T will make the road so much easier for you and your daughter. Thinking of you!

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