Lacy

Hi Nicole... welcome, and I'm so sorry this has plagued you and your family! If all doctors aren't 'on board' with making your DD (dear daughter) better, then that just contributes to the all around stress. Before I go into the list of doctors working with us (in hopes that it might help you find the right one), I will say that even though their appointments for new clients are way off in the distance, tell them that you want to be on a cancellation list so that you can grab up something sooner if it becomes available. Every time I have gotten my DD in sooner when doing this. The doctors that have been involved in this nightmare have been... Pediatrician - She's been very sympathetic and has helped me in thinking of new types of doctors that can help, but she has been very open about not knowing much about PANDAS. She was the first to suggest the strep test (when DD wasn't sick, but was behaviorally tanking), so I'll always be grateful to her for that. Child Psychologist #1 - This lady was way too holisitc for me. I don't know how to explain it, but ultimately we didn't connect. She was of no help to us. Child Psychologist #2 - This was the school's child psychologist. She was a GREAT help. She recommended the next step to be taken should be a pediatric neurologist. She also spearheaded the child studies meetings at school to make certain that everyone involved with our DD at school fully understood what was happening. Child Psychiatrist - Believe it or not, this woman became an advocate for us not to put our DD on psychotrophic drugs. Her opinion saved us from the countless recommendations from various doctors to put our DD on meds. For us, we weren't ready to medicate our DD this way (and still aren't). Guidance Counselor - School's GC kept close tabs on our DD and helped everytime she could. She assisted the teachers in implementing breaks scheduled throughout the day - a type of "Reboot" for our DD. These 10 minute reboots really seemed to help DD AND the teachers to take a break and get back on track. Pediatric Neurologist - This guy was a no-nonsense approach doctor. He sat with us for about an hour talking about what to do. He recommended doing office scans of our DD's brain (I'm drawing a blank... it's not an EKG... shoot... sorry). DD did two and they found patterns in her 'sleeping' area of her brain that indicated she may be having seizures that we're not aware of. The P.Neurologist ordered a MRI. The MRI didn't show anything definitive and we haven't been back to the P.Neurologist since... he felt that he couldn't be of further help. Pediatric Sleep Doctor - We didn't actually go through with this one, but decided that if DD relapsed we would consider it. Pediatric Infectious Disease Specialist - This doctor by far was the most successful in helping us treat DD's symptoms. He did a bunch of blood tests and discovered that DD's ASO/Titers levels were completely off the charts. He wanted to start her on a 6 month course of antibiotics (that turned into 9 months). She's allergic to Penacilian, so he prescribed Cephlaxen (sp?). She was on that from Sept. 2007 through May 2008. He did checkpoint blood tests to see where her ASO/Titers levels were. They never dropped down to normal, but they were VERY SLOWLY dropping. There were others involved in the school and her special needs arrangements. Unfortunately DD just relapsed and we are visiting the Pediatric ID specialist again tomorrow to see what our next steps should be. I was thinking about asking him about the IVIG therapy but I'm not certain we're at that point yet. Side note.. we live in the Richmond, Virginia area and I would be happy to provide you with the names of the doctors if you're nearby?

In the beginning, DD was having episodes regularly. She'd be prescribed two weeks of antibiotics and the symptoms would go away, and then come back - sometimes even worse. DD's infectious disease specialist prescribed her long-term antibiotics (Cephlexan sp?) that began from Sept. 2007 and ended in May 2008. For five months we had our 'normal' happy-go-lucky DD back. Towards month 3 we stopped worrying about a relapse (dumb us). At the end of month five (around the end of Sept 2008), DD started slipping back into having tough days. Then after three weeks of increasingly negative behavior, she got sick. She was orally tested for strep - it came back negative (which isn't surprising - they usually did in the past then blood tests would show otherwise). She was out of school for a couple days trying to get over the flu-like symptoms. When she went back in, I got a phone call from the asst. principal that she had a 'grand mal meltdown' (as we've come to call them), and he wanted to suspend her for two days (we reduced her sentencing to two days of in-school suspension). This asst. principal is new and is a complete idiot. So to get him back on track we've reopened the Child Studies meetings at school (first one is scheduled for next week) and we've demanded that the asst principal attend. Grrrr Tomorrow DD has an appt with her ID specialist. I imagine he'll want to do another blood test. Thank goodness for L-M-X cream to help numb the area. DD refuses to have her tests done without the theatrics unless I bring her "magic cream". It breaks my heart... she's been subjected to at least 5 blood tests... I've sort of lost count. She's been stuck more than a pin cushion, and I hate that we may be restarting that. I'm going to ask her ID Specialist about IVIG therapy and see what he thinks. Anyways... that's my two cents for the moment.

I think it varies from child to child, but DD does say this filth. It's almost like she can't help it though. She seems to save the worst of it for the adults at school. It's quite embarassing for us when we hear that she did it to someone who wasn't familiar with her situation, but most everyone (except for the lousy new asst. principal) knows DD and what is going on with her. Maybe they do it for my benefit, but everyone just loves her despite her 'fits'. That makes me feel good. We had DD on a course of Cephlaxen (sp?) antibiotics for nine months - from Sept 2007 to May 2008. Aside from a small trip ups, we thought we FINALLY had this nightmare behind us until recently. So I'm completely guilty for sticking my head in the ground (a la ostritch) and pretending it went away. I recently came back to the forums - this one is a new one for me... much more activity here, to see what I could find out. Loads of great information of course! Tomorrow DD has an appointment with the Infectious Disease specialist that prescribed her the long-term use of antibiotics. It was about three weeks ago that we started seeing signs of our nightmare returning. We noticed that her 'fits' morphed into something a little bit darker and more calculated. It used to be uncontrollable fits of kicking, screaming, spitting, some hateful words (nothing as horrible as the stuff now), and throwing.. etc. Now the fits are inward rage that seeps out in hateful venom. She'll tighten her fists and give you looks that would kill on the spot if they could. It's quiet scary. So far it's been more tolerable emotionally because my own doctor started me on Lexapro for my anxiety attacks back in January. DH has been having a difficult time with all of this, and I've been more nose to the grind and a new and more determined outlook on getting DD back on track. Enough rambling for now... Thanks so much for the well wishes!

Oh my goodness - I had to make sure I wasn't reading a post from myself! Seriously, when I got to the "I'm so exhausted part"... it was a mirror image of what we've been through - right down to the various doctor's appointments or picking up DD from school. DD has an appointment tomorrow with her pediatric Infectious Disease specialist for a resurgance in her meltdowns recently. It seemed to have come on about two weeks before she got sick with a flu-like bug, and it's been downhill from there. Next week we have an appointment to restart the Child Studies meetings with the school... the new assistant principal is not up to speed with where we left off and how we'd deal with DD's meltdowns. . . instead he's in his own little world and making things so much worse on us and DD. I can't stand the man and I've told him so in a lapse of good judgement and frustration.

My DD would tell us during our darkest days that her brain would tell her to do or say the horrible things she'd do/say. It was almost spooky. In sad attempts to keep my mood light when telling friends, family, and doctors about this I would tease that I think she needs an exorcist and not a specialist. Her brain has been overactive again these days and she's becoming blantantly defiant. Almost like Turettes she spews awfulness like: I hope you die, I want to kill you, my Daddy will put you in jail, I hate you, I'm going to cut your hand off... very violent. It's gotten to the point that I'm starting to worry about me and my DH's safety if this continues into her teens... God only knows I'm worried that one morning I might not wake up. That sounds terrible, and I sure hope we nail this thing before then, but it's a worry that recently crept into my mind.

DD seems to save the outbursts you're experiencing for school. I've noticed that since her last flare up which was almost a year ago, her fits have morphed. It used to be violent - kicking, screaming, spitting, hitting, thrashing, riping stuff, and throwing... it was awful. Those fits have turned into mostly rage and venom.. she tells the various school administrators that she wants to chop off their hand, and kill them. Scary. It's really tough trying to discipline her. I know that it's not 'her', but the PANDAS talking. I still feel that she should be punished for the behavior. She's 7 and definitely knows better. I just don't know if she can help it. Anyways, when she has bad days at school we'll do the typical taking stuff away. If she doesn't have homework we've been known to make her do sentences - writing phrases like, "I will respect others".. it helps her practice her handwriting. DH has also had DD just lay in the spare room on the bed and stare at the ceiling for a cool down moment. If she refuses to behave or throws a 'grand mal fit' for us, she gets a swat to the butt. That usually jars her just enough to be complacent. I try to use the spankings for moments where she's going to seriously hurt herself, or another. Anyways, that's my two cents.

Michele, At first the teachers and administration at my DDs school didn't understand at all. It was infuriating because they kicked her off the bus and put her on the smaller special needs bus (after I fought to keep her on school transportation). They also kept putting her in out of school and in school suspension for behaviors that we didn't understand at the time. With the cooperation of the school's special needs teacher, guidance counselor and school child psychologist we started up Child Studies meetings. With those I mentioned along with our DD's teacher, asst. principal and principal we sat and discussed what was wrong with DD and how could we handle her outbursts more constructively and effectively for everyone. With the exception of the new [enter expletive here] asst. principal, everyone is doing everything they can to keep control of the situation and our DD. Unfortunately with a flare up of DD's symptoms we're going to have to restart the Child Studies meetings because the new asst. principal is not meeting eye to eye with us or our DD. Good luck!

My DD is all the 'good' things when she's not 'fitting' or raging. I think PANDAS only accentuates the negative behaviors. At least that's what I'd like to think.

Our 7y.o. DD had been symptom-free since May 2008 after a 9 month course of antibiotics. Then, about three weeks ago we started seeing minor warning signs with her behavior at school. She started becoming more inattentive, and defiant. Then last week they tried to suspend her because she had an episode where she started spitting out hateful words: I want to kill you, I want to cut off your arm... you'd have to know our DD - she's nothing like that - she's sweeter than pie. Late last week DD and I both got horrible sick - sore throat, snotty noses, achy joints... a really bad cold. We both went to the doctor and our tests came back negative for strep (not unusual for DD). Saturday we went to dinner where she played with her Nintendo DS at the table (we rarely let her do this, but since we were eating with friends we figured she'd have more fun playing her DS instead of listening to our jibber-jabber). Out of nowhere like the exorcists DD throws up everywhere. We took her home and she bounced back - she said she was hungry. Maybe it was a fluke, but I thought it might be worth mentioning. On Thursday DD has an appointment with her pediatric infectious disease specialist. I imagine he'll want blood tests to check her ASO/Titers... I'm betting their sky high.

I will do my best to answer your questions. I am a newbie to this board but not with PANDAS. Our 7yo DD (2nd grader) has been dealing with PANDAS and it's horrible symptoms now since she was a preschooler. Here we go... 1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) Sabrina was in pre-school when we started noticing that she was coming home with difficult daughter reports. She had just started Kindergarten (had just turned 5 y.o.) when we took her to the pediatrician who recommended a strep test - which came back positive. Sabrina had no other symptoms of strep throat so we were shocked when we got the results. She had not yet been diagnosed as PANDAS. 2. At what age did your child begin to speak? I don't recall the exact month, but she was on target with where she was supposed to be. Once she started talking, she never seemed to stop! 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? She really started drawing well in daycare/preschool. I'm going to guess she was 2.5 y.o. but maybe sooner. 4. Has your child had food allergies? To what? Not that we're aware of. However, Sabrina does have an allergy to penicillan. 5. Does your child have changes in bowel function during a PANDAS exacerbation? Not that I've noticed that I can't chalk up to her antibiotics when she's on them. I will note that she remained constipated most of her 2nd year. At this time of her life we didn't notice any PANDAS symptoms. 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? I haven't tested this. 7. Do you have joint hypermobility? As a matter of fact, I do. I can bend my hand down fairly far without pain. It frustrates my husband to no end when he practices his law enforcement tactical movements training. 8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? Wow, where to begin... Me (Mom): Anxiety issues - have been placed on 20mg Lexapro and it seems to be working. My Mother: Anxiety, Depression, Weight Loss, Alcoholism, and for the longest time we suspected bi-pol. My Mother's Grandmother: Demensia (sp?) My Father: Alcoholism My DH's Parents: Well, they're just plain crazy. 9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) DH: Eczema, IBS My Father & His Father: Rhematoid Arthritis My Mother's Brother: Had to take antibiotics for a year and everytime before he goes to the dentist... is that rheumatic fever? DH's Mother's Dad: Passed of Rheumatic Fever 10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? Not that I've ever noticed. 11a. Does your child have panic attacks? No, but she gets very stuck on certain discussions - for instance, we'll pass a graveyard and she'll start getting upset to the point of tears about the passing of her Granddad when she was only 2y.o. 11b. Is your child, or has he/she been, very separation anxious? Nothing that didn't seem normal. 12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? We are currently not willing to place Sabrina on any SSRIs. She was treated with an 9 month course of antibiotics (Cephlaxen - sp?) 13. Does anyone in your family have mitral valve prolapse? Not that I know of. 14. Does your child have any particularly striking "gifts", talent-wise? She is EXTREMELY artistic and creative. 15. How would you describe your child's "regular" personality? When Sabrina is having a "normal" day she's extremely sweet. She is polite, and loves to play with the kids. She has always been headstrong and loves to lead the group of kids. She's quick to tattle - like any other kid. She really strives to get positive attention from adults. If it helps, I'm happy to answer further questions. I'm most accessible through e-mail. Thanks!