sosudden

I have a 9 year old daughter as well! She she has finally been able to go back to school for partial days for the past 2 weeks. She has hypersensativity to, well, everything, since her PANDAS diagnosis. We tried shortened days but eventually had to do homebound - her teacher came to her 5 hours a week. It worked out great! Hugs to you!! Feel free to PM!!

Thank you!! I will do it!

Question about antibiotics: I read on the forum that people just increase the antibiotic when there is a flare in symptoms or child has been around strep, etc. My question is how are you able to do this? Do you have doctor that you can just call and ask for more antibiotics? My daughter received IVIg in february and the Augmentin that was prescribed had to be changed to Zithromax 2 weeks ago. So she is down to 9 pills and I can not get this doctor to answer me about refills!! Every time I go to her general pediatrician it's somewhat of a struggle to get him to prescribe antibiotics (although he eventually will). He just doesn't understand why the IVIg doctor is not prescribing... does that make sense? i just am getting so nervous that she will run out before someone refills this for her!

I live in KS. Seems every resource I have checked no Doctor's in KS show up. Are you in the midwest?

Hi! So happy you have a plan! That eases things ever so slightly - although it is still brain-numbing to watch this happen to our kids!! IVIg is working for our 9 year old daughter! Keep us posted!

I need help!! Getting frustrated and a bit scared! I would love to find a PANDAS Dr close by!! Daughter had IVIg in February with Dr K - she was very severe! I read on some topics how people actually have doctor's that know of PANDAS, what to order, how to treat, what to do if there is a flare in symptoms or if your child needs to go to the dentist. My daughter's pediatrician has been open to Dr K's suggestions but does not "treat" it himself. My daughter had to go 4 days without antibiotic because her ped would not call it in without Dr K's approval and could not get in touch with Dr K!! The Augmentin she had been on since IVIg tearing up her stomach and worsening her anorexia and she began actually throwing up. It took 4 days for dr to call in zithromax. Long story short - any suggestions for PANDAS Dr in KS or MO? Thanks!

I am a daily reader of this forum and am so thankful for all the helpful and caring people on here! I have a question about treatment. Looking back and now that I know about PANDAS I know my daughter had been accumulating bad antibodies for some time. It wasn't until October 2012 that her symptoms became SEVERE and she had her "falling off a cliff" episode. In Aug and Sept DD had developed sudden EYE-ROLLING and sever separation anxiety. We noticed she would also have to say the same things at the same time, for example when I picked her up from school she would ask the same question the same way. When she would go to bed she would have the same routine and ask the same questions every night. Then we noticed her mood - SO DEPRESSED!! Color was PALE. Had constant migraines and needed ice on her face and eyes NONSTOP. She withdrew drastically. Had phobias and panic anxiety. Couldn't make it through a whole day of school. Made appointment with psychologist. Had to wait weeks to get her in Diagnosis was sudden and severe OCD and transient tic disorder vs Tourettes!!! That night DD opened up and told us ALL of her fears and rituals --- poor thing!!! There were LOTS! She was NOT doing good and nothing was helping! No one could tell us what was going on. She was writhing on the floor. Doing headstands constantly -- in the car, on the floor, on the couch. Twisting her head and neck in these painfull "yoga-poses." She couldn't walk more than a few steps before falling on the floor and twisting and writhing. And I use the word "walking" but it was actually hopping and spinning, tapping and touching, eye-rolling and humming or screaching. OK I am getting sick just thinkning back to those days :( There was so much more awful stuff going on but I will stop with that. Then December 6th 2012 she had a dentist appointment. I somehow got her there and she had to have a filling. By the time we got home she was COMPLETELY GONE! She was RAGING and kicking and hitting and angry and wild and screaming and hiding and moving nonstop and wanting to just make it all stop She was gone! Couldn't make eye contact. And I couldn't do anything to comfort her. I slipped in to her room and called my BFF and just bawled!!! What was happening to my baby!!?? I told her pediatrician and psychologist about this right away. Pediatrician had no advice or anything to offer. Psychologist is awesome and kept saying "There just HAS to be something MEDICAL going on!!" I kept asking "What is all of this WRITHING AND STRANGE MOVEMENTS???" "HOW DOES THIS RELATE TO OCD?!?!" Plus her pupils were dialated, she would not talk unless you asked her a simple questions and her answers were always very short. She looked terrified and distracted ALL OF THE TIME. The point to all of this history is no one could help us! I finally googled "OCD and MOVEMENTS" and Saving Sammy story popped up. I read just a few sentences and then watched the video of Sammy moving and screamed!!! This is what our DD has!!! How come no one knew about this?!? The very next day I took her to Pediatrician and presented my info - he started off by saying "You know, PANDAS is controversial.." How can anyone dispute the FACTS!!?? A normal 9 year old SUDDENLY DEVELOPS A MYRIAD OF PSYCHIATRIC SYMPTOMS? I did get Dr to prescribe some antibiotics - Keflex for 20 days. By day 11 on KEFLEX DD had a few moments of "clarity." She would seem more present for just a few minutes at a time then she would disappear back into her writhing movements and headstands and hiding and just be "gone." SO I researched like crazy. Found this forum. Pursued IVIg with Dr K. We are now 11 weeks and 4 days out and she is continuing to improve. After the IVIg the writhing was GONE! The headstands were GONE! And within a few more days the painful "yoga-poses" were gone!! I will stop there but like I said she continues to improve in a stair step manner. Does anyone out there feel like they are still struggling to get the help they need? Even when it when it seems so obvious AND IVIg helped? I mean, DD had IVIg in Chicago but that is 8 hour drive away. I just can't seem to find one doctor locally who knows how to treat this?! I read Dr T's comments on here as well, but he is halfway across the country as well I just want local support and don't know how to go about it?! ((HUGS)) to all!!!

Does anyone out there have a 9ish year old who you think it would benefit to have an email buddy? I have yet to place my daughter's whole story on here. She was officially diagnosed with PANDAS January 2012 but we believe she had been suffering since August 2010 :( She had IVIg Feb 16th & 17th with Dr K. I just think it might be nice to "talk" about things other than PANDAS with someone that understands. Send me a message if you think this would be beneficial for your kiddo!

In retrospect, yes, my daughter had all of those things. We believe she has had PANDAS for years :( Had that "falling off a cliff" exacerbation in Nov 2011. Looking back thought, she had hives, stomach "pain", heart racing, and urinary frequency. At the height of her peeing all of the time (2 years ago) I even questioned if she could have diabetes and check her blood sugar several times.

Hello and welcome to this amazing forum! There is so much help for our children here! My daughter had the same exact eye rolling. I watched your video of your daughter's concert & it brought such a wave of emotion back to me I just had to post. My 9 year old daughter has PANDAS. This last December she was in a little concert too and we videoed it as well and she had non-stop eye rolling. You sound like you are an amazing mom so just remember that - you know your daughter!!! "Mommy instinct" is VERY REAL!! Keep researching & arm yourself with knowledge! My daughter is considered severe, she has every symptom on the list of criteria and then some poor girl!!! Her fearful OCD thoughts are just awful I had to spend much of my time researching & presenting information to her doctor. He was supportive enough saying he couldn't "rule out PANDAS" but thought it was still a controversial diagnosis. ((Which I just can NOT understand this?!?!) I found Dr K in Illinois - an amazing PANDAS specialist!! I have to say it is such a great feeling when you can talk to a Dr who knows & accepts & understands what is happening to your child & has a WAY TO HELP THEM!!!

Hi! We live in Kansas City area. Anyone have experience with a PANDAS doctor in this area? Thanks!

Pow, Thanks for the reassuring comments! There's certainly not a "lack of emotion", it's just not the emotions we've grown used to over the years..Thanks again for your comments!

Hello All, My DD has a much shorter temper towards everything these days, is easily angered, depressed, but rarely cries about what she's going through. Our psychologist even made a comment that she saw no tears when my DD got pretty upset during a session. The comment certainly irritated my husband and I, but got my husband wondering, which brings me to my question. Have any of your children showed a lack of emotion (mainly crying) while their symptoms were in high gear? My DD is strong minded and has been fighting this will all she has, but hasn't shed a tear since it all started! It seems like the majority of PANDAS stories I've read state that children will become much more emotionally labile with increased crying. I certainly don't want her crying all day, but everyone has a breaking point, Right??? I'm thinking that this is due to the basil ganglia being affected, but would love to hear any of your thoughts....

We have an appointment Friday with an immunologist that treats PANDAS kids. I found him on one of the OCD websites. I was compiling a (huge) list of questions for the Dr and wondering if there were some important questions I should ask that I may be missing?? It seems Dr appointments always go by so fast and I don't want to forget anything!!! I have talked with the office a few times and they seem very nice One thing they did mention is that this Dr takes the holistic or naturalistic approach?? Can anyone fill me in on this? Thanks!

Ah thank you!! Going to hold off for now for sure! She actually had the best day she has had in MONTHS!!! Still probably just 1% back to the DD we knew but I will take it!! To see her smile & interact again is priceless...

WOW!! Your description of your DD takes my breath away! We are on day 10 of her 1st round of antibiotics. Stumbled on Saving Sammy just 2 weeks ago & that was my A-HA moment!!! Someone out there was describing what I was seeing in my bright, outgoing, comedic DD!! But how you describe her rapid downword spiral, well, I couldn't describe it better for us She had a possessed look - - SO SAD & SCARY! Just knew something bigger than OCD was taking hold of my DD!! I felt her slipping away I am seriously wondering if she will need IVIG... Seeing some improvement on abx but OH I want my DD back!! Thank you for sharing about flumist. August 2011 was my DD 1st dose of flumist & her spiral started shortly after...hmmmmm

Thanks! That was what I was thinking too!

Has anyone had their child on Abilify? Psychiatrist suggested this to help calm the vocal & physical tics. My husband & I are not totally on board with this as she is on day 10 of her 1st round of antibiotics & though the tics have become more frequent --- her mood & OCD/panic is improving a smidge every day! What to do?? Don't like the thought of "antipsychotic" medication -- although Psychiatrist assured me at such a tiny dose (1.25mg) it would just calm the physical "urges." BTW, I must celebrate that DD big brown eyes are able to look more & more "at" us instead of "thru" us!! And she is smiling more every day too! And she is on board with eating more protein (BMI has taken a hit as she has a fear of being fat:( Thanks for your thought on this!!

Hi! Thanks so much for moving this up & for those who responded! I believe the support on this forum is going to help me tremendously!! We do want an MRI so hopefully we can get one. Pediatrician wrote for 20 days of Keflex so 12 more days til I need to make sure I have him on board to keep treating her with more if needed. We have an appointment with a Dr on Feb 10th ~ found him on an OCD website link! He is an allergist & immunologist & treats PANDAS patients!! So excited yet nervous to get my DD to him ~ time is in sloowwww motion. He was the only one in our state by the way which is just CrAzY to me!!! That being said, I think there is a little tiny more sparkle in those big brown eyes of hers. Still anxious, nervous, ticcing, moving, screeching BUT able to interact with me & her dad & siblings (who have missed her too of course:() I will share our story soon! DD staying home from school today because there is a substitute so I don't want her reading over my shoulder. May all of our littles have a piece of peace today!!

I am new to this forum and my brain is bursting with questions! My 9 year old has "disappeared" into this awful thing called PANDAS. I am just trying to piece everything together to present to her Pediatrician (who has willingly started her on antibiotics!!) Question 1 is has anyone had an MRI to see inflammation of the basal ganglia? Question 2 is has Keflex (cephalexin) worked for anybody? That is what my DD is on. Day 7. There are moments that I think I see the old sparkle in her eye...few & far between. We are getting copies of her medical records and starting to put things together---trying to trace back as far as we can remember. I believe she has had this since 3 or 4 years old. that's 6 years!!! :( Question 3 is will she come back!!?? She used to love life!!! Now she looks pale & petrified and pissed off 95% of the time!! ((Note that up until a week ago she looked pale & petrified & pissed off 100% of the time)) I am screaming inside a lot of the time!!! Help these kids!!!! Thanks for any reply & support