cdklyn

Love this story...made me tear up:) Thank you so much for sharing, great ideas. I'm looking into the books now.

My 4 year old daughter is a recently diagnosed PANDAS case. So recent, that we're still in the testing phase to see what her triggers are. We have a recent order to have additional blookwork and another strep culture. She's been stuck with so many needles in the last 6 months, that it's the first thing she asks when she hears that she's going to the doctor. She gets this panic stricken look on her face when she asks. Bloodwork, tonsils out, MRI done, all involved shots or needles and required at least 5 peole to hold her down to get the needle in (she weight 33 lbs...yes, 5 adults to hold her down). Any suggestions on how to help her decrease this anxiety. I know it's unrealistic to wish a 4 year old would have no anxiety in these situations, but need ideas on what has helped with your little ones in explaining why we're doing what we are, and how to help them be somewhat calm during the process. A 4 year old, do you tell them before the appt or right before the needle prick? Lie when they ask if they'll have a shot...if i tell her yes we would have to tie her down to get her in the door of the doctors office? Any help is appreciated, we have one week before next set of labs.

We consulted with Dr. Murphy's office last week and among other things, part of our treatment plan is for my daughter to start a probiotic and omega 3 (fish oil)supplement. She's 4 and very sensitive to smell and taste. Most days it's a fight to get her to take anything...including her antibiotic. I heard there is powder form of the probiotic you can mix with milk and gummie omega 3 supplements. Any suggestions on brand, etc. that have worked well for your children?

So glad to hear you're having positive experiences with all of these doctors! Such a rare story to hear positive experiences in regards to doctors. We see Dr. M on March 21 and looking forward to it even more now!

Just curious about other experiences here. My daughter's journey began back in September of 2011. We took her to the ER because all of her joints were swelling, painful, had fever, etc. Had a positive strep test and elevated blood count indicating infection. Ran test for Rheum Fever, all came back negative. Has since had a cardio consult and all looks good with her heart. At that time they diagnosed it as Reactive Arthritis related to strep infection. Lab results at that time indicated a negative ASO test meaning her ASO level were normal. Has anyone else had this experience where the strep test was positive, but ASO negative? They're running more test next week to see where she's at now. Had tonsils out 3 weeks ago and no strep infection since then. Anyone have similar experience?

Our PCP has made a referral to an ped. neurologist that he can't confirm has extensive experience treating PANDAS patients. We've decided to move forward and schedule an appt with what we consider an expert in the disorder, Dr. Murphy in Florida. We have the appointment with her for the end of this month, but still have no referral to her from PCP and not sure we will get one. Anyone that has BCBSTX insurance coverage have a similar situation? Or if you have other insurance, any advice on how to handle??

airial95, Thank you so much for this information. Your experience reasures me we are on the right track! It's also very helpful to know what to expect when we get there. I'll be travelling with my daughter alone and she has a lot of anxiety about all medical environments now due to everything that's happened to her over the last 6 months. Your information helps me prepare her for what's to come and reduces my anxieties in knowing how to prepare her for the appointment. Just a quick question, did they only do blood work...any other tests I need to prepare her for. I already know she will protest the bloodwork, needles make her literally climb the walls and I mean she literally climbed over me last time someone tried to draw blood. She usually has to be restrained to do the tests. Thank you so much!

My 4 year old daughter was just diagnosed with PANDAS in January of this year and it is our belief she's a mild case. We make this distinction not based on medical opinion, but based on our own research of the literature and comparisons to many of the other stories on this forum. She had her tonsils removed the end of January and we hope this will significantly reduce her strep infections. She also finished her 6 week dose of antibiotic last weekend. Three days later we saw a significant decrease in her OCD behaviors and improvement in mood, and today, one week later, she has none of the OCD symptoms and her mood is mostly back to normal. She is still having issues with nightmares and saying she's scared to go to sleep because of bad dreams, but she does sleep. We're very happy about the improvments, and it's so obvious to us as well as our family and friends that our daughter, as well as the rest of our family, feel normal again. Ofcourse, today she woke up with an ear infection so she is on a 5 day dose of azithromycin; however, we're hoping for the best and that this infection won't cause another flare. Today I also received a call from Dr. Tanya Murphy's office for an appointment at the end of March. We live in Texas and travelling to Florida will be very expensive and more time off work, as well the possibly that it won't be covered by my insureance if my pediatrician won't refer us to her (which is a possibility since he's recommended a neurologist we are scheduled to see on March 8). My questions is, should we jump at this appointment and go to Dr. Murphy, eventhough our daughter is currently in a remission, or should we wait and see? My local doctors do treat with antibiotics and are in fact the ones that diagnosed her with PANDAS, but are by far not experts and not referring me to an expert neurologist. Would Dr. Murphy be able to do a thorough consult and develop a good treatment plan if my daughter is still in remission at the time of the appointment? Thank you!

Does anyone have experience with their child complaining of joint pain? The last week my daughter has complained of the back of her kneee hurting. Two days ago it was the left and yesterday it was the right. She had reactive arthritis in response to a strep infection in September of last year, so naturally I look at her joints anytime she complains about hurting, but this week i've seen no swelling. I'm just wondering how common joint pain is for kids with PANS?

This morning when I dropped my daughter (4 yrs old) off at pre school, her teacher brought to my attention the recent decrease in her handwriting skills. She showed me a comparison from early January to now and the decrease is significant. We are seeing a ped. neurologist in 3 weeks, but was wondering if anyone has suggestions on what we can do until then. Has anyone had success with occupational therapy to improve these skills? We are in the very early stages of all of this and need guidance from those who have been there:)

Does anyone have experience with Dr. So or Dr. Riela in Plano, TX? If so, recommended as an option to discuss PANDAS?? Thank you!

I'm noticing my daughters (4 yrs) movements/compulsions tend to occur most often on weekdays after school. She seems to have fewer on the weekends. I assume this is because her stimulation and arousal is less when she's at home and with mom and dad on the weekends. Just curious if this is common for other kids? We're very new to all of this and just now starting to see patterns and recognize triggers.

Thank you so much for the information. Will definately talk to ENT about abx during and after surgery. She's currently on cephalexin hoping to clear up current strep infection prior to surgery...we'll see next week if it's clear... I tried to find the list of Drs. at the top of the forum page and i'm having trouble locating the link...?

Funny you say that...that was my husbands exact statement when I told him what the neurologist said...

Thank you so much for the advice. I feel so relieved and reassured by all of the reponses and advice...a Godsend really. We live in North Texas, approximately 2 hours north of Dallas, we're willing to travel obviously. Anyone have recommendations for the Texas or Oklahoma area? If not TX or OK, we're willing to travel anywhere really. Just want some credible information from a professional...

I live in North Texas, about 2 hours north of Dallas, but am willing to travel anywhere once i get a good recommendation on a PANDAS Dr.

My daughter (4 years old) began displaying tics in early December of 2011. Arms extending (moving as if pretending to be a bird) hands fingers spread apart, and at times her legs replicate the same movement at the same time. She looked at times as if she were doing a spread eagle in a stationary and sometimes moving position. We noticed these seemed to occur more often over the Christmas break. She was also sniffing things often, especially new items. We decided to take her to her pediatrician, but before doing so I googled 'tics.' As I read the various articles, I began to see strep show up, then PANDAS. As i read the symptoms, I began to think back to all of her recent strep infections, we are aware of (dating back to September 2011) one infection causing her to have reactive arthirtis to the strep. I also began to think back to various smaller tics she's had over the last 2 years, eye, throat clearing, mouth, all that lasted only a month or less then disappeared. I was convinced it was PANDAS, but of course wanted the pediatricians opionion. He listened to our concerns, asked us a list of questions, and did a strep test that came back positive (though she had no symptoms). He at that time agreed with us and diagnosed her with PANDAS. He called a ped. neurologist to consult and informed us that he would call us back once he spoke with the neuro. The same date we were shceduled to have her tonsils removed to decrease the vulnerability to strep. Surgery will be at the end of this month. The next night, the pediatrician called and said he consulted the neurologist. This Dr. did not believe PANDAS is a true medical condition and believed instead that our daughter likely has Tourette's triggered by strep. When I asked if he believed it was PANDAS, my pedicatrician stated he just didn't know at this time, let's get her tonsils out, then see what happens over the next 2-3 years??? Needless to say, waiting that long to further investigate was disturbing to me so rather than wait 2-3 years to see if things get worse, i'm researching a Dr. i can consult that has knowledge of and will see my daughter. I'm not sure how severe the symptoms must be to diagnose. Any advice if my case sounds serious enough to contact Dr. who specializes in PANDAS?? Thank you!