kos_mom

Dawn, So sorry about your son. Is there anyway to keep him out of the system for medical reasons? You really don't want him in the state's hands--it is highly unlikely they would do the appropriate medical care, which he clearly needs. Have you contacted a lawyer? It is unfortunate but untreated PANDAS can result in adolescents making very bad choices because in the words Dr. L told me, "They are very scared." She has a PANDAS patient, now in her 20's, whose parents sent her to wilderness camp and a residential treatment center, but she ended up running away and getting pregnant when she was 18 or so. Finally, Dr. L found PANDAS and she is slowly putting her life back together. Ko's Mom

Lauren, I don't know if this is useful, but my DS was once put on Tenex and absolutely everything was slow like that. The only other bit I can offer is that while I am not typically allergic, when my siblings and I went to clear out my parent's house by the sea I got an allergic reaction to something--probably some kind of mold. The whole week I was there I felt my mind was moving through molasses and was doing everything in slow motion. Ko's Mom

Hayley, There is only so much doctor going one can do. In your place, if I were to choose just one adjunctive therapy I'd go with the tried and true: exposure response prevention (ERP). Norah

Two years ago DD was evaluated for POTS but she didn't fail the tilt table test so it was ruled. Does failure to fail the tilt table test rule out dysautonomia as well?

Hayley. Good to take the precaution of a phone consult with Dr. T. As you know, we too are waiting on Dr. L, but will see Dt. T on Tuesday to tide us over. I hope your pediatrician will agree to the abx, but even if he/she does, I think you will find it useful to to talk to Dr. T. He may order a lot of tests--getting these could put you in good shape for Dr. L. Ko's Mom

Identifying an asthma attack is actually very difficult unless you have some equipment. My DD was dx'ed with asthma five years ago. Initially she was put on the asthma medication but the allergist insisted that we keep checking in so we could get her off as soon as feasible. We were able to do so when her severe sinus condition cleared up after two surgeries. Thereafter, I viewed asthma as a mere footnote to everything else; she continued to carry a rescue inhaler, which she seldom used. She had severe pneumonia in May, which I guess weakened her lungs. In July I had to take her to the ER twice. The first time she felt chilled and tingling all over but no fever and she demanded to go to the ER. It turns out she was having a bad asthma attack, which they could tell from her racing heart, blood oxygen level,and wheezing in her lungs. The second time she had chills and a 103 fever and her lips turned blue--I though from the chills. I could barely get her to the ER--all she wanted to do was lie down. Again, turned out to be a severe asthma attack. In neither case would I have guessed asthma was the problem (well I guess not the fever--still think that was strep although ER doc wouldn't test--her titers came in sky high two days later). A friend of mine who has asthma says he doesn't know when he is in the danger zone--he has to use a peak flow meter to determine that. He also uses a little gadget that you put on your finger that measures your blookd oxygen and heart rate. When the former drops to a certain point and the latter rises above a certin point you are in trouble and need to get help. He gave one to my daughter. Another cause of shortness of breath is vocal chord dysfunction--the vocal chords fold together when they are supposed to open. It usually appears in adolescence. A lot of exercise induced asthma is actually VCD. It doesn't seem to be very well understood; it could be exercise induced and sometimes appears related to anxiety, as well as other things. A fair number of people with VCD also have asthma, making it more difficult to distinguish what might be causing an acute problem. The treatment is breathing exercises--good luck getting a teenager to do that. My DD had what seemed like an asthma attack once when we wre on a cruise and conveniently happened to be with a pediatric pulmonologist--she coached her through it and later told me she thought it might have been VCD. We reported this to the ENT who suggested a voice coach whom DD refused to see again after the first visit. So another footnote to everything else. Maybe VCD will show up someday in lists as a symptom associated with PANDAS.

As econd on the advice to try for the NIH trial. My DS too did not qualify but he was dx'ed by Swedo herself--the dx cannot be questioned after that, a most valuable thing.

WE did not ask for keyboarding--writing was not a problem for DS. We easily got the ability to circle answers in the test book instead of filling in the grid--he spent so much time trying to make the fill ins perfect on lower level standardized school exams, the school actually asked us to request this. I doubt he would have gotten through ten questions without the accommodation. Betrween tics and OCD we got time and a half--the school, which was parivate, filed for us once we provided documentation that they supplemented. I don't know ;what the school said, but it must have been good as there was no hassle at all in getting the extra time.

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.

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.

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.

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.

i too am in the DC area and waiting on an October appointment with Dr. L for my DD; my DS already is a patient. For various reasons, I feel that I cannot wait that long for a better dx, so we are going next week to NJ to see Dr. T, with whom it is easier to book an appointment. Over the long run, though, we will stick with Dr. L--she is wonderful and is close by. From this forum I have learned that many parents consult with more than one PANDAS/PANS specialist and nobody takes offence. I agree with doing azithromycin full time. I am pm'ing you with the name of a pediatrician in case yours is not on board with this, together with another suggestion MDmo sent me.

Dr. L's office is helping us arrange at home IVIG for DS because our insurance won't work for her office.

My DS also responds to abx, albeit over many months. When he saw Dr. L in June she said his classic case combined with good response to abx made it a "no brainer" for him to have a T and A. We got that done in June and she is now advising IVIG, which we hope can be accomplished next week. She said he will continue on abx after IVIG--not sure how long. We'll probably check back in December. For reference, DS is 22.

Both my kids are on 300 mg Clindamycin three times a day. I am giving them each one capsule of Florastor. I vaguely recall the doctor may have said to give them the probiotic twice a day. Does that sound right--should I be giving them another capsule? Thanks.

Rachelle, Welcome to the forum! I'd suspect PANDAS/PANS in any child who suddenly came down with OCD or tics or ADHD, either singly or in combination. My DS had a couple of OCD/tic episodes and then had an episode of sudden and extreme ADHD without either for a month only to be replaced with the OCD/tics. Run, don't walk, to get throat culture, ASO titers, and antiDNase B titers done at your pediatrician. If these are positive you should be able to get abx. PANDAS/PANS dx does not require elevated titers but obviously it is easier to get treatment from your pediatrician if you get positive results.

Jp Dad--sent you a pm.

DD has all those symptoms plus shortness of breath upon the slightest exertion, gait disturbance, swallowing problems, and frequent nausea/gastric probles in addition to the anxiety, OCD etc. There is a big overlap with lupus symptoms. A month ago DD's ANA was tested and was negative--no level was given on the results I received. But in any case, lupus is ruled out for the time being and so we are still searching for explanations. She had a tilt table test two years ago and didn't faint so POTS also seems ruled out. Anxiety can cause the postural tachycardia and stomach/breathing problems, but seems a stretch for other symptoms. DD does not have new patient appointment with Dr. L until October 2. I did manage to very briefly to bring DD up when I took DS into Dr. L this week. She advised going to a neurologist to have an EMG and NCV/SSEP (think I have that right) done. But DD can only get into the neuro she recommended in December so I'm regrouping a bit to figure out an efficient and effective strategy to get this done--DD is really sick of doctors and so I want to avoid visits that do nothing to move this thing forward. (DD went to neurosurgeon this week to have an evaluation of an irregularity on a spinal MRI--he said he wasn't a specialist in that area of the spine and advised a consult with another neurosurgeon!!!) Have you thought about taking your DD to a neurologist?

Like Moody in the Harry Potter series, I'd advise constant vigilance. My DS's symtoms died down by the time he was 12 or 13--ten years ago--only to come back when he got strep after his freshman year in college and again after his junior year. I'd been assured that PANDAS pretty much went away by the time kids were 16 or 18 that I didn't initially even connect the dots for two months when his OCD came back his first summer home from college. DS's ENT did a T and A this sumer and told us he had noticed he is seeing more college age kids with PANDAS.

JP Dad, Sorry about your son. I understand how hugely frustrating this is. My DS showed his first PANDAS symptoms in 1997 and had a huge explosion in 1998. No one knew anything then and there was very little they could do to help. Sometimes I think it is worse today when the condition is pretty well understood but still it can be so hard to get proper treatment. I think there are very few pediatricians that would do IVIG--you'd generally have to go to a specialist. The closest to you is probably Dr. Latimer in Maryland. I'd go ahead and make an appointment, but you probably won't get in until December. You could also try Dr. Trifelletti in NJ, who may be available earlier. He also does phone consults, which would be useful especially if you could get a sympathetic pediatrician to work with his recommendations. In the meantime, you might do what I had to do at one point--call up every pediatric practice in your area and ask if any of the pediatricians have expereience in treating PANDAS. If you are willing to travel I could give you the name of an ENT in the DC area that works with PANDAS--from what you relate I don't think he'd have a problem with the tubes and perhaps would do T and A as well. Finally, your DS's outbreak may be recent enough that he might qualify for the IVIG trials at the NIH. I'd call them up and see if you can get your DS in. It's definitely worth a shot.

JP Dad, Sorry about your son. I understand how hugely frustrating this is. My DS showed his first PANDAS symptoms in 1997 and had a huge explosion in 1998. No one knew anything then and there was very little they could do to help. Sometimes I think it is worse today when the condition is pretty well understood but still it can be so hard to get proper treatment. I think there are very few pediatricians that would do IVIG--you'd generally have to go to a specialist. The closest to you is probably Dr. Latimer in Maryland. I'd go ahead and make an appointment, but you probably won't get in until December. You could also try Dr. Trifelletti in NJ, who may be available earlier. He also does phone consults, which would be useful especially if you could get a sympathetic pediatrician to work with his recommendations. In the meantime, you might do what I had to do at one point--call up every pediatric practice in your area and ask if any of the pediatricians have expereience in treating PANDAS. If you are willing to travel I could give you the name of an ENT in the DC area that works with PANDAS--from what you relate I don't think he'd have a problem with the tubes and perhaps would do T and A as well. Finally, your DS's outbreak may be recent enough that he might qualify for the IVIG trials at the NIH. I'd call them up and see if you can get your DS in. It's definitely worth a shot.

I agree this sounds more like PANDAS then a conversion disorder. The latter really should be a diagnosis of exclusion--and probably often is made as a result of failure of medical imagination and curiousity. His symptoms in any case don't seem to square up with conversion disorder--syptoms for that cannot be limited to pain. The school thing sounds definitely OCD-ish. My DS is classic PANDAS and one of his worst current OCD symptoms is, as you put it, the tape playing in his head of how terrible his old school was. The shower thing is interesting--obviously the water could not be causing pain but he nonethless felt it and the image of the nails being pounded in is striking. Could this have been some kind of a hallucinatory episode? Not that uncommon in PANDAS.

Thanks. I do wish I'd known about the possibility of a positive rapid and negative culture as we just did the culture. Too late now! In any case, the Pandas friendly ENT gave her a scrip for 30 days of clindamycin.

Interesting topic on IQ decline. At 5 my DD scored 128. On standardized testing she was >99 percentile at ages 6, 7, and 8. At 7 qualified for JHU Gifted and Talented program through special test. Subsequent standardized test scores through elementary and junior high all in high 90s. And then in sixth grade she did IQ test (took place one week after a pneumoia that had her home sick for a week)that put her at 108. The tester insisted that that test was much more representative of her IQ than any standardized test but could not provide explanation for test scores muh higher than expected for that IQ. In seventh grade she took SAT and scored 480 in each of English, math, and writing. DD fell apart in high school--can't remember ACT scores but remember high in reading and writing, and much lower in math, science, and grammar.