Lacy

A quick update... Just started little girl back on her antibiotics last night. Usually it takes at least a few days sometimes weeks to kick in - IF it will even work. Keep your fingers crossed! Meanwhile, she has an appoitment with an immunologist next week. I tried contacting the doctor in Phili that was on that news bit (see thread: http://www.latitudes.org/forums/index.php?showtopic=4589) and was bummed out that she never responded. Then again I'm not sure whether or not I'm surprised.

Media attention - this is fantastic! Good luck and keep us posted if you are able to get your Charlotte buddy on board with a story.

Oh my goodness that 4 minute bit was perfect! I couldn't help getting choked up while listening and watching. I feel connected to everyone here, but actually seeing you, your DD and DH and seeing the pain in your DH's eyes, and you're beautiful DD and her description of how she felt... oh my goodness I was just so emotionally overwhelemed. PANDAS needs so much more media attention.

I will eagerly be standing by, waiting for the link!

I wonder why that is about the OTC meds (Advil and such)? She was on the abs for those 9 months (Sept 2007 to May 2008) and she did great. We decided to take her off the abs to give her body a break and also to see how she'd do off them. She did fantastic for 4 more months and then around Sept 2008 she just flat out tanked with her behavior. I noticed (coincidence or not) that this happened about two weeks after everyone around her got a flu-bug. Since then we've all been in an emotionalhell. We are planning to put her back on the abs but I've been dragging my feet since she rebounded a little bit from the change in splitting her Lamictal. The main reasons for dragging my feet are: I hate to add to the medicine mix (1 med, 2x a day doubled), and then I also wonder what will happen if she mellowed back out and returned back to her "normal" cheery self - in regards to the doctor's responses. If that makes any sense. Ultimately, if things go South with her behavior (which feels inevitable), then I'll call in that refill of the abs.

My daughter is on prophilactic abx. Lamictal is famous for keeping people up at night. I give her evening dose early in the evening for this reason. Also give melatonin and valerian at bedtime. Even so, last week she had terrible issues with night waking...resolvd by increasing CLO. Do you think the Lamictal is responsible for the nightmares or strep or something else? We got the chronic strep under control before we tried Lamictal. Sure hope the field trip goes well for your daughter. The rages can be so much worse in a public place, the "normal" ways of dealing with them aren't available in those settings. The nigtmares definitely appeared to be linked to the Lamictal. Since having split the dosage, they've decreased significantly. She's back to her normal routine of sleeping through the night. It's probably too early to know for sure that we're out of the woods with the nightmares though. Sabrina doesn't appear to have strep the way she did. In fact, it's been a long time since she's had a positive test result. So it's possible that it's all still flying under the radar in the guise of the elevated (but not as high as it used to be) ASO/Titers levels. Those never really got into the 'normal' range. We had a tough weekend - no major rages, but just a lot of defiance. Nothing we can't live with, but it gets tiresome after all the tug of war episodes. Luckily she did really great on the field trip - I'm not certain if we have the Lamictal to thank for that or not. I still haven't warmed up to the idea of having her on psychitropic meds. Sabrina has an appointment with the psychiatrist in two weeks, followed by a first time visit with an immunologist. I'm certain she'll want to take blood. I don't know about all the other parents, but I absolutely loathe subjecting her to all of these blood tests. Poor thing. It breaks my heart that she's experiencing stuff that any "normal" kid wouldn't have to experience until much later in life. ((sigh)) I'll keep ya'll posted.

Sabrina's psychiatrist put her on Lamictal about 6 weeks ago. We started off really slow (because of the rash side effect - so far we've been lucky, no rashes), and as of St. Patty's day she's been on 50mg (2 pills) a day. Almost immediately after she was put on the 50mg, she started waking up with nightmares (she's rarely ever had issues with nightmares). When she went back to school that Thursday things go increasingly worse (rage-wise), and then Friday, much worse and then Monday it got so terrible that we had to come pick her up from school. Desperate, upset and ready to do anything I called her psychiatrist who recommended splitting the dose - 1 pill before bed, and 1 pill at breakfast... so far I think the combo might be helping, but I'm not going to hold my breath. If this doesn't work, we will be adding back the Ceflexin (sp) to see if that helps. I'm really nervous today - she's got a field trip to the zoo. She's been running off away from the teachers lately and I'm worried about her doing the same today. I feel a little better that the school assigned her, her very own teacher to watch over her. Sad that it has to be that way, but it breaks my heart when she's missing out on so much of her childhood. I think DH and I are hanging in there (sanity-wise). Our biggest concern is if we can't get this nipped in the bud as she gets closer to puberty... I'd hate to think on that too much. [Edited to include:] On a side note, our results with the SSRIs were extremely negative. It appeared to enhance the energy Sabrina put into her rages. She was completely out of control. [sorry, Edited again to include:] Wow guys, sorry I totally missed my note on this thread... I find that I am in denial and sometimes avoid the forum - I think in an attempt to avoid the topic altogether... my escape from reality. Sad. Sorry again. I did notice on the link http://www.autism.com/treatable/supplement/megson.htm that was included, the doctor who wrote that is directly in my area. I am almost positive I tried contacting her, but never recieved a response - that's been a few months back. I may try and call her.

My DD's infectious disease specialist put her on a 9 month course of Cephalexin (250mg 2x a day). That seemed to work miracles until 4 months after we stopped. She got a nasty cold and now Cephalexin no longer seems to be working and DD's mood swings are getting more violent than ever. Good luck!

I am so sorry to hear about the setback! Our DD Sabrina did fantastic on Cephelexin (9 month course), and then when she went off - everything was great for four months and then after she caught a nasty cold that was going around, that was all she wrote. Since then the antibiotics stopped working and Sabrina's moods have been in full downswing motion since this past November. Good luck with everything!! Keep us posted

Thanks Dedee for the kind words! I should be grateful that this was my first extremely negative experience with a doctor - so blantant. Arrogant was a perfect adjective to describe this neurologist. I'll keep everyone posted! Lacy

Went to the pediatric neurologist yesterday and was completely appauled. This guy was so inconsiderate, callus and seemed to take joy in talking over my head. He spent most of our appointment time downing Dr. K (a doctor he didn't even know, but actually dismissed himself from the room so he could research Dr. K), and then he spent the other time acting openly taken aback that our psychiatrist was going the route she was with the Lamictal. This guy was horrible. He wanted to subject Sabrina to another 24hr EEG (ok, no big deal for her - just another bad hair day), and then he wanted to put her out for another MRI - which was by far the worst day of my life. He asked why and I told him what happened with the Verset (sp?) they dosed her with and how it affected her - she couldn't walk for nearly 4 hours after the MRI and was tripping and was sky high - it was AWFUL). He seemed unmoved and shrugged it off saying it was necessary and he would recommend Verset again. It was like this man was purposely trying to send me over the edge. Even the student shadow that sat there looked mortified. Everyone who is sensitive to swearing - cover your eyes, but this guy was flat out a pr!ck! ARRRRGGGHHHH! Ok, I feel better now. I did call Sabrina's pediatrician to tell her I've had it. I'm done playing medical repository for Sabrina and subjecting my baby girl to all of these tests - most have been unnecessary. The pediatrician wanted to know what I wished we could do... and I freely told her if I had my choice - we would have diagnosed this issue when it started years ago, and we would be focusing on how to subdue the meltdowns so she could live a normal child's life. I also told her that of all these tests she's had - the one that keeps coming back with alarming results (the titers tests) - everyone keeps flipping ignoring them. Grrrrrrrr So I'm waiting on Dr. K's secretary to contact me back - I don't think she will though (that's another story). Meanwhile I'm making an appointment with another new doctor who is in the area and supposedly has experience with PANDAS children. Just one more "Argh" for the road - AAAAAAAAAAAAAAAAAAAARRRRRRGGGGHHHHH! Ok, I feel much better now.

Good morning everyone! I don't have an internet connection at home (the only fallback to living in the country) but this was the first place I went to when I got to work this morning. Thank you to everyone for your notes - I appreciate every single one of them! Before I left work on Friday, I wrote Dr. K a thorough e-mail. He surprised me by writing back on Saturday saying it sounded like a clear cut case of PANDAS to him. He thought IVIG would be the way to go, but I need get in touch with his admin and let her know that we haven't tried the steroid bursts yet. I'm trying to lay out in my mind which direction to go next. I'm frustrated still with Sabrina's pediatrician and I really don't think she's my source for reliable help. I'm thinking about the Infectious Disease specialist - maybe he might be the right one to go to. And then Sabrina has an appointment with a pediatric neurologist today... I'm asking myself whether we should be wasting time with that one. The only reason I'm moving forward is because the last PN found inconclusive results around her "sleep center" in Sabrina's brain - it seemed indicative of seizures around that part. Oh! Desperate Mom... we live in central Virginia (about 20 minutes West of Richmond). One last thought... I talked to DH about Dr. K's e-mail and he said we ought to try and consider taking Sabrina to Chicago to see him - if IVIG is what needs to be done. I'm wondering though... will Sabrina be in any kind of shape to be traveling after a procedure like that? I really don't know what's involved with IVIGs so I'm off to research for now. I lied.. seriously, the last thought... Sabrina got her blood test results late last week and nothing came up for the basic food allergies, arthritis or celiac disease. I can't for the life of me remember what the other tests were, but I think one was another to look at strep. Her last titers test she got was in November '08. He said that her levels were considerably lower at that time, but they were still elevated considerably where they should've been. I'm off to get some coffee to wake up. Thanks again all! I'll keep you posted.

She was on Cephlexin (sp?) during that 9 month period. I think it was 250mg and the ID specialist didn't feel comfortable at the time giving her a higher dosage (too much for her weight). She's not on antibiotics now - just the Lamictal We haven't tried the steroid burst... can you give me the skinny on what it's all about? It's funny (not haha funny), but I feel like I've lost control of the situation altogether. I told DH that I'm ready to just stick her in the best children's hospital on the East Coast and tell them I'm not leaving until they figure out what's wrong with my baby! Oh man... I'm a mess today - I keep feeling the tears trying to let go even as I type. What type of doctor is the best to discuss the steroid bursts with? Honestly I'm losing faith in Sabrina's pediatrician. I think she'd blow it off. Almost as if it were a sign that I was right about the pediatrician (and her grumpy office worker bees)... I tracked down Sabrina's blood test results with the lab that took the blood... they couldn't fax me the results, but they offered to fax them to the doctor - apparently one test was holding everything up and I said to just send what they had. Well, I called the doctor's office and they grumpily informed me that they gave them to the doctor and that she'd call me when she was ready. Unsympathetic [enter a slew of explatives here]. GAH!

It's been a really long time since I last updated everyone, and I feel kind of like a traitor because mentally I think we abandoned the idea of Sabrina's 'issues' as being PANDAS. I also feel a little guilty because I've been AWOL from the forum for so long, and now here I am looking for shoulders to cry on. Let me try my best to quickly update everyone... Sabrina had the typical symptoms with no tics. Her most pronounced symptom were the severe rages that she would blow into. When witnessed, people looked into her eyes and it was as if Sabrina was gone, and nobody was home. Her eyes were blank and it was extremely frightening to witness. Sabrina has seen numerous specialists, doctors, psychologists, psychiatrists... The last ray of hope we had was when Sabrina's Infectious Disease specialist prescribed her a long term course of antibiotics. She was on them for nine months before we decided to take her off. After taking her off the antibiotics she was great and everything was "Normal" until about 4 months later when her moods starting going South. We called the Infectious Disease specialist and after seeing her again he prescribed another round of the pink stuff. This time after a month or so, we saw no changes and if anything, her behavior was getting more unpredictible and more violent. She was telling the assistant principal she wished he would die, and that she wanted to cut his arm off. She started hitting other children... her meltdowns were becoming more calculated and angry. This is about when we started getting desperate and veered off course from the PANDAS. During this time, Sabrina began to get inconsistent but frequent belly aches, headaches and joint aches. We had Sabrina see a Developemental Pediatrician a couple hours up the road from us. During the appointment Sabrina experienced a severe case of nausea that seemed legit, but the staff at the office seemed unmoved and were determined to evaluate her. We felt conflicted over the evaluation continuing because she really looked sick, but we did drive a couple hours up the road. Money is tight. The evaluation came back focused on the emotions they felt were a problem: anxiety, anger, depression, bi-polar, and OCD. They even suggested that some of her tests seemed to indicate Asperger's. Of course they didn't really have any answers on how to 'fix her'. In the past couple of weeks she's seen a psychiatrist who put her first on Zoloft... ((sigh)) I felt like the worlds worst mother. My gut says this is medical, not mental health issues. But I can scream it from the highest mountain top and nobody - NOBODY is listening. Well, you guys are. ((sniffle)) The Zoloft caused Sabrina's emotions to tank even further. The final straw was when she was so upset I witnessed her bite herself in the car. That was it. I emotionally broke down with her. My poor baby girl was hurting herself for reasons I'm sure she couldn't even figure out. I called the psychiatrist who told me to immediately stop the Zoloft. She wanted to put her on Lamictal - a medication for epilepsy and for maintenance treatment of bipolar I disorder. While the Lamictal started to stabilize the crazy mood rages at school, we were still dealing with her bellyaches and joint aches that seemed to be getting worse. We took her to see her pediatrician who ran a huge panel of blood tests (10 of them... the few I recognized were Celiac disease, arthritist and basic food allergies). So our baby girl got stuck with another needle. I wouldn't mind so much if I knew it was going to show us something, but they never do. They just always leave more questions. She saw her psychiatrist again yesterday and they want to increase her dose to 50 (she's on 25 now).. mg I think. She felt encouraged that Sabrina seemed to be more in control of her moods at school (there was one incident where she ran outside of the building, but never melted down... the principal was encouraged that she seemed to be holding it together). Today started off a little worrisome. She was grouchier than usual, and she was being hateful to me. I was able to calm her down and get lots of kisses before I left her with the sitter. I just got a call about 30 minutes ago from Sabrina's teacher at school. She was raging and melting down. She hit a boy in the head with her shoe. She was tearing apart the in school suspension room (they call it "PAR" - positive attitude room), and they just couldn't calm her down. The school refuses to put Sabrina on the bus when she's in the middle of a fit - so I got the phone call that we needed to come pick her up from school. We live out in the country - her school is an hour away from my work. DH was at home in the middle of a flooring project, but he was my only option. I called him to pick her up and he finally popped his lid. We're both at our wits end and we keep saying how this has got to stop, but we know it never will. Or at least it feels that way. (Geez, I'm tearing up here at work... I feel like an idiot) Back in December we got Sabrina an appointment with a different pediatric neurologist (she's already seen one, and this was our chance to get a second opinion). The soonest they could see her (despite the waiting list) was 2/23. I've been calling almost every day to get that bumped up - no luck. I'm not sure what I expect to happen this go around. All of these false starts. I'm so lost guys. I don't even know if this is PANDAS anymore. I hate to keep subjecting my baby girl to all of these stupid @#&^! random tests and pulling up ZIP! ZILCH!! NADA!!! Even if we couldn't "cure" her of these horrid meltdowns, it sure would be a nice relieving step to at least be able to say... we know what this is. Alrighty.. I'm stepping down off my pitty party soapbox for now. Thanks for your shoulders to lean on.

Wow, I thought it was just us who experienced the rage-stripping. DD did it a couple times in class and they were having to practically drag her out so she wouldn't "flash" the rest of the students. She doesn't do it often, but it has happened. We are driving to Charlottesville, VA on Thursday to meet with a Developmental Pediatrician. I'm hoping that's not just another false start. The false starts are what really wears me out... and my car... and my gas card.

How frustrating. I've been in the same shoes as you with our DD (7 years). We have her Developmental Pediatrician appt coming up on the 15th, and then a second opinion from a different pediatric neurologist. Over the holidays while she was out of school the negative behaviors and OCD picked up with a vengence. I'm so tired of all of this that I'm starting to feel numb. She also has another appointment with the child psychiatrist in February. Luckily for us this doctor doesn't easily prescribe meds to 'her kids'. Every flippin doctor that we see always ends up telling us that we need to revisit that route. The only reason we are this time is because the Geneticist DD saw a couple weeks back gave me a smart rationale on why I should. It's a long story, but I'll give it a try. Why are we all stuck on this goofy island? Where's the boat so we can get off and go back home to "normal".

Do ya'll ever feel like me where there is so much I want to tell you all, but I'm so overwhelmed by everything that I just don't even have the energy to type it up? We're getting so many false starts and false hopes that I could just be sick!

Hi there! We had a stall on the tonsillectomy surgery because DD ended up with strep. She received two weeks of antbiotics, and then had the surgery. After the surgery they gave her antibiotics for recovery. I'm not sure if they dosed her up at the hospital with any antibiotics in her IV, but after about 4 weeks of antbiotics in her system she seemed good to go in the mood department. Her surgery was in May 2007, and the 9 month antibiotic course began in early September. She had a couple slip ups during the summer, but in August 2007 was when we noticed the turn for the worst. Her 9 months of antibiotics began September 2007 and ended May 2008. She did great all summer long and then we noticed her moods started tanking quickly around October. She's been put back on antibiotics (just the cephlaxen) since late October, but we haven't seen much improvement. Wednesday she'll be seeing a sleep neurologist... in the past she's seen a pediatric nuerologist who found results in her EEGs & MRI of patterns in her sleep area that were indicitive of seizures, but then he felt that it wasn't enough to go on to make a diagnoses and basically dropped us. ::sigh:: We're hoping round two with a different pediatric SN doctor that we'll have better luck. We're also going to talk to DD's Infectious Disease specialist about changing her antibiotics to the azythromicin (sp?) to see if that helps. A few on the forum have suggested it.

Our DD did fantastic after her recovery was completed (she had a painful recovery for about 1.5 weeks). Then after the strong course of antibiotics wore off, she was back to the same. This is when our Infectious Disease specialist was recommended to us by DD's pediatrician and he put her on the 9 month course of antibiotics. It worked great for those 9 months and then 5 months after... now things have gone downhill fast. I was pretty spoiled with how great things were for that timeframe, but now the antibiotics aren't working, and we're starting again with the calvery of doctors to try and find how we can get the next reprieve.

Oops! Sorry, I didn't notice that you had asked me a question. I'm in another world today. DD is allergic to penicillan and the doctor had the best luck with Cephlax (sp)? The doctor was a little wary about putting her on the "z packs"... isn't that what Azithromycin is? I could be totally wrong. So much to remember.

I feel for all of you who are dealing with the rages... my DD (7 years old) just started back up with the rages. They come out of nowhere, and anything seems to trigger them. When she has these rages they don't happen every day (knock on wood), but the reprocutions usually last a day or two. DD hasn't had them at home, and usually does it at school or out in public. When they escalate it usually takes at least 30 minutes for her to come down... with help. Just like someone in an earlier post mentioned, she's like a wild animal. The last meltdown I witnessed her eyes looked unusual... dialated and one of the eyes almost appeared lazy... very scary. After she calmed down she was exhausted, and almost sad-like. Because there were irregularities in her EEGs and MRI in the sleep area when we went to a pediatric neurologist almost two years ago... we decided that she should see a new one. Next week she'll be seeing a pediatric sleep-neurologist. I still have hope that there is something we can do to rid DD and our family of this nightmare.

Update... I talked to the pediatrician late yesterday afternoon, and while she still pushed the psychiatrist again (and I pushed against that), she gave me some other options. This time we're bringing out the cavelry (ahem.. again), and we're getting DD set up with appointments with a Pediatric Neurologist (take two) Pediatric Sleep/Neurologist Pediatric Psychiatrist who has had experience with PANDAS children DD was able to get an appointment for next week with the Pediatric Sleep/Neurologist - so that was good. The regular Pediatric Neurologist is scheduled for February (yuck), but she'll be on a waiting list for cancellations - usually something comes up sooner. And the Pediatric Psychiatrist's office is forwarding me the necessary paperwork that I need to fill out before making an appointment. So I'm going through all the motions - hoping something new will come of this. My Mommy-radar-gut-feelings tell me that we can do something for DD... I just need to find someone who can help. The antibiotics aren't working this time, but she's still on them... for now. I'll keep everyone posted.

Hello all! Thank you so much for the well wishes, and kind words. I'm sorry for the long hiatus, but I was internet-less for a few days - how awful! The ID specialist came back with some interesting results. He said that the last time we ran these blood panels, the levels were off the charts. While they're still not in the "normal" range, they've come down considerably. ::sigh:: Yes, this is good news... but what does it tell us?! The antibiotics don't appear to be helping like they did last time which is really frustrating and leaves us feeling hopeless. DD has had two grand mal meltdowns in the past two weeks and I only see things getting worse - not better. Today she had a completely meltdown at school... she was hissing and clawing at her teachers, she was trying to spit, hit and kick. It was terrible. She hid under desks, and cried uncontrollably. I tried talking to her from under the principal's desk on her speaker phone and I couldn't coax her out. Finally we gave up and DH went to pick her up. ::sigh:: When I talked to her ID specialist a week ago about her test results, he said that if nothing changes in her behavior in the next 4 to 6 weeks (max), then the antiobitics probably aren't helping like they did last time, and we are basically starting at square one. He's told us that he doesn't believe he'll be able to further assist. ::BIG SIGH:: So we're starting all over. I called her pediatrician this afternoon and left a message asking that she call me back. I'm just waiting on that call now. I also called the pediatric sleep doctor's office and they're saying that they're only taking sleep apnea (sp?) patients - I don't think DD is having that problem. I did a Google search and called an office that specializes in Pediatric Mood Disorders, but I still don't feel like I'm on the right path. Where's my sobbing smiley face when I need it?? I'll keep you all posted as updates come up. No child or family should have to go through this nightmare alone. I feel so blessed that you all are here with me, and I feel so sad that you all are here experiencing the same/similar problems. Hugs to everyone...

Thank you for the well wishes! In the beginning of all of the nightmare - about a year and a half ago, we did have two EEGs done on her. The first one was the 20 minute one and they discovered some questionable patterns that would be indicitive of seizures surrounding her sleep areas of the brain. They then did a 24 hour one (minus the video)... that still gave them reason to want to do a MRI. The MRI results were clear and the pediatric neurologist explained to us that there wasn't much more he could do. Historically on her blood tests for ASO/Titers levels, they've been off the charts. I can't recall the levels of where the different tests should've been but they were always astronomical... they never wanted to go down. Finally after the 9 month course of antibiotics they lowered a little bit, but nothing near 'normal'. I'm waiting on her Infectious Disease specialist to call me back - hopefully today. Not that knowing what her ASO/Titers levels were is really going to help me, but I am curious if they're back up to the astronomical numbers again.

I'm completely depressed. Without going into full details (because I have in various other places on the PANDAS forum already), our DD has PANDAS, however until just recently she appeared to be in remission with the aide of a 9 month course of antibiotics. After 5 months she started showing signs of behavioral issues, and just recently we restarted the "Child Studies" meetings at school. Over the weekend DD had what in the beginning we dubbed, a "grand mal meltdown". The "lights went out" in her eyes, and she threw an ever-loving rager in the middle of a store. I stayed calm (thank goodness for my Lexapro keeping me even-keeled) and ushed DD to the closest bathroom. Of course everyone stared at what I'm certain they thought was a "special needs" child. I also couldn't help but wonder if they thought I was kidnapping some poor helpless child. It took me and my DH to get her to the bathroom - she was thrashing around so hard and screaming "NO! NO! NOOOOO!!". It was terrible. Once in the bathroom I gave her a hard swat to the behind - it used to be the only thing that would jolt her back to reality. The light slowly came back in her eyes - just enough for me to soothingly tell her to look me in the eyes. Her eyes almost appeared dialated - seizure like as I've told many doctors. I kept coaxing her and finally she looked me in the eyes. I asked her if she wanted me to 'kiss the button' (the middle of her forehead - kisses seem to calm her down more), and she sort of nodded - still coming down. Finally I got her to calm down enough to kiss her, and she just grasped onto me in a huge hug. Of course this made me feel like breaking down myself, but I kept control. We cooled down her face with a wet paper towel and exited the bathroom after 10 minutes from entering. Today I'm just feeling so down. I called her Infectious Disease specialist to see if he can tell me how her ASO/Titers blood work came back. About a week and a half ago we took her to see him and he ran the blood work and put her back on her antibiotics. I know I'm just preaching to the choir, but I really wish there was a magic solution to everything. I'm so tired of my poor DD being a pin cushion for all of these blood tests that I feel tell us something, but nobody can interpret it. I hate that she's not able to have a smoother time in school. I hate that she is going through this nightmare... us too. Ok.. sorry. Just had to release some tension and throw a pity-party for me.