Teri

I have to chime in here. We see Dr.B and he is an amazing Dr.! He is brilliant, compassionate, and professional. We have been traveling to Ct. Since March of 2012. Dd 7's onset was 9/11. I believe the issue with the secretaries is that the practice has grown tremendously. Half of his practice is dedicated to Allergy patients and he also sees a large number of PANDAS patients (I have heard in the neighborhood of 1,000). I don't think they can handle the demands. So it's not just you - I have been on the other end and felt the frustration. Insurance coverage was one of the first questions we asked as we made our appt. We waited 3-4 months for our initial appt with Dr.B. and he is well worth the wait.

The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.
 
All future IVIG will be covered.
 
MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.
 
YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr. B has to do the initial consultation after her sees you once then you can schedule appointments with his PA. We've also had nothing but rudeness from the secretaries. We complained and when we did we heard that we weren't the only ones having problems. Dr. B is a pioneer and we are lucky to have him, but it's beyond frustrating dealing with his staff.

I don't have much time to write, but wanted to welcome you to the forum. You don't sound nuts at all! There are others here who saw a sudden onset of PANS after a vaccine. I'm sure they will respond when they see your post. And 7 - 9 is a very common a age period for the onset of PANS.
 
Our sons have a lot in common. My ds was also diagnosed with asthma, sensory processing disorder, and auditory processing disorder before he developed PANS just before his 9th birthday. He also had chronic constipation from about age 2 - 5. Kids can develop OCD/tics as part of an autoimmune response to things other than strep - vaccines, viruses, mycoplasma, Lyme and its coinfections, etc - often it's some combination of the above. You might want to get on Dr. B's wait list and then see if you can find a Lyme doctor (LLMD) in your area in the meantime - they know how to test and evaluate for all these infections, including chronic manifestations of them, which may be what you're dealing with since you've been seeing symptoms for over 4 years.
 
In our case, Lyme and company turned out to be the underlying problem, and we've seen much improvement through that treatment, including treatment for coinfections and chronic viruses.

Hi! You're definitely NOT "nuts," and I encourage you to dig in deep. If your pediatrician is open and intellectually curious, perhaps you can enlist her help in the meantime/during the absence of openings among some of the PANDAS/PANS specialists; that's what we were able to do, and it definitely helped us out. Among the pinned threads here, there is a host of materials . . . research papers, doctors' accounts, etc. that you could download and share with your pediatrician. I might also suggest you get a couple of copies of "Saving Sammy: Curing the Boy Who Caught OCD" by Beth Allison Maloney. It is a true story (biography), written by a mom about her son, and she provides information in the book about the course the illness took, symptomology, treatment protocol ultimately prescribed for Sammy, etc. This book was a key in my being able to secure a course of treatment from our local ped because, initially, she was concerned that she didn't have a protocol for treatment, and she'd never seen another "PANDAS child." Reading about Sammy and seeing all the similarities between he and my son helped her, I think, cross that bridge between "crazy internet mom" and our having a legitimate concern.
 
When it comes to psychiatrists/psychologists, I would be wary. While CBT (ERP) can be a very helpful tool for helping our kids address the OCD behaviors, few psychs are well-versed in PANDAS/PANS and could potentially prescribe meds at dosages which would be inappropriate for your son and could potentially make things worse, as opposed to better.
 
In addition to the pinned threads here on the forum, I would check out the International Obsessive Compulsive Foundation's web site (www.iocdf.org). They have a page specific to PANDAS/PANS with information you can print out and take to providers, and they also have a "Find Help" page that might give you some more information on psychologists and psychiatrists in your area that not only treat kids, but are also PANDAS-aware.
 
Good luck, and hang in there!

You can go ahead and test. The titers will stay elevated for weeks. For your Mycoplasma, you must get both a IgG and IgM or you really will not know what you are dealing with. The IgG will only tell you that she has had a past infection. You already know that. You need to know if there is current infection which is what the IgM shows.
 
As far as the physician is concerned, throw him out with the bath water. Those who don't believe in PANDAS / PANS aren't worthy of your time at this point. There won't be any convincing them. PANDAS / PANS is well documented with evidence based medicine and providers with their head in the sand aren't worth your effort. You need to seek a PANDAS specialist or a LLMD immediately. You say your child has OCDish rituals and does things till they feel right. This is very classic. The therapist at the PANDAS clinic calls this "Just Right" OCD and evidently it's very common. The child really can't explain exactly why they do something but they just know that they have to do it to feel "just right". OCD is very hard to identify in kids and there are probably many things going on that you aren't aware of that fit into that category.
 
You are on getting a good start with getting the labs but you need to get an appointment with someone who will know what to do with the results. You can go to the pandasnetwork.org site and get a list of providers. Best of luck.
 
Dedee

Folks really need to stay away from hospitals if at all possible. They won't help you. If your child ends up in the hospital for a non-pans reason, use your judgment to keep from sharing as much pans related info as possible.
 
I read on one of the FB pages that Lovely CHOP is coming out as the first hospital in the country formally against all vitamins and supplements because they are not FDA regulated. Thanks for nothing, once again CHOP!
 
We pulled up next to a van last week with a CHOP sticker on the side of it with the motto "Give the gift of childhood". I was driving, staring out my side window with a feeling of disgust inside, but i said nothing. Then I hear my younger girl behind me say "I hate CHOP." How dare they be so committed to everyone else's children but ours!!!!!!! How dare they!?!?
 
I am so grateful and thankful to the Lord for my girls' health! We tried it "their" way, conventional medicine, dutifully trying one drug after another. IT DOESN'T WORK! If it did, we wouldn't be here. I thank God for the tenacity to keep pursuing effective treatment solutions and the handful of docs who are bold, brilliant and helpful.

Sounds very familiar. My son had titers of 1800 and many of the symptoms you have stated above at age 8. . We saw Latimer in 2009. She recommended plasmaphoresis due to his extreme presentation and the high titers. We were back to baseline after 5 days of plasmaphoresis and I thought we left cured. Four months later he relapsed (not as severe) after a flu shot, and ultimately needed some IVIG to retrain his immune system. We too, had not had a positive strep test since 2006. For us it was clearly autoimmune.
Both azithromycin and steroids worked for us to buy some time until we could get the IVIG. They did not fix things, but allowed him to get back in school. They were a band aid for him.
He is 12 1/2 now and doing phenomenal. He had no current issues, and has not had any for years. See Latimer. She saved us.

DS, 14, had a victory moment on Saturday. He participated in the junior high marching band in a parade competition and really enjoyed it! He marched carrying a sousaphone (tuba) and was able to keep time and play the notes. I am so excited for him.
 
He was very tired, but that is typical for him.
 
We are down to only one antibiotic-Augmentin and we are in the process of scheduling his tonsillectomy. Things are looking up.

If your child turns out to have PANDAS, 10 days of amoxi will be nothing. My son has been on antibiotics for 3 years. The risk of further amplitude of PANDAS symptoms/behaviors is a lot worse than a 10 day course of amoxicillan.

Timing is everything. My dh and I had a meeting with the school principal, resource teacher and classroom teacher today. My son performs above grade level, so no IEP needed. Over the 3 yrs of his diagnosis, I have kept the school apprised of PANS by giving them appropriate publications and talking with his teacher and the principal. Today was the first time we've sat down together since his diagnosis in 1st grade. He's older now and the expectations are increasing but his emotional/ social development is still lagging some and it becomes more apparent plus he does have some executive functioning issues like remembering his lunch bag, turning in papers ,etc... We explained to them how things have been going, treatments, etc....and asked for some accommodations.
 
We found out a great deal about our son and what accommodations have been out into place automatically without our formal request. We are lucky our school is so proactive.
 
Here are the things we asked for and were granted today
 
1- alert letter sent home to each classmates parent
2- reminders of frequent hand sanitizing ( we asked for just our son but it's going to apply for every kid)
3- daily sanitizing of his desk and the desk in the adjacent room where he receives science instruction from another teacher)
4- allowance for fidgeting (found out every classroom now has fidget toys and every teacher received instruction on use)
5- develop and implement a hand signal for distress with classroom teacher
6- designate a safe place to go when signal is given
7- no loss of recess or PE for behavioral or academic infractions
8- seating away from high energy/distracting students( they cause his anxiety to ramp)
9- allowance for excessive absence (found out this has already been implemented, I wondered why I never got the letters last year, principal withheld them)
10- parental input on teacher selection
 
We talked about future possible needs such as when the hand writing requirements increase and a few other things.

Thanks so much Dedee. I am just blown away by the wonderful doctor I met with today. He was compassionate and took the time to not only listen but explain so many things. I am beyond thrilled! The most important thing I learned from him is that we shouldn't be chasing the titres. He said the ASO can be elevated for a while year or two and is not an indicator so long as the numbers fall, however slowly. He recommended we check every 4 months unless we have a significant reason to look, such as fever sore throat, ect. But not to check blood just to follow the titres. I think we were expending a lot of energy wondering why the titres are still positive after all these months on abx. We are switching up their antibiotics. we are going to treat DS for an active infection on Keflex for 500mg BID for 10 days and then keep her on 250 BID for long term. (She's 4 and 42 lbs) DS is going to remain on Keflex 500mg BID. We will see how they do. He also referred DS for an immunology consult that I am excited about. This dr does administer IVIG if its appropriate. I couldn't be happier with how this appointment went. It gives me great comfort to know we finally have a PANDAS specialist that understands and cares.

Hi Teri!!
 
For us it(Pandas Progression) was as follows:
 
ages 2-5 irrational fears, sep anxiety, mild behaviors and somewhat Oppositional defiant, quirky, irrationality overall emotional lability.
ages 5-6 severe oppositional defiance in addition to above with increased intensity of all above.
Dec 2010 at age 6.5 came down with severe eye,nose forehead, eyebrow scrunch and roll of eyes post strep tic diagnosis that was preceded in earlier week(s) with severe emotional distress....dark thoughts...truly scary.Penicillin took care of this tic and over all symptoms improved. kept on Pen till school got out in May of 2011
Sept 2011 Mild ticcing same as above started. We noticed a constant head nod (as if saying yes)
Sept to Dec 2011--this progressed into full blown head nod, roll with shoulder and arm chorea like movements that were uncontrolled flapping of her arms.
 
I say all that to say that I think until you can help the body:
1) Debulk any infection----------abx
2) Chill out the immune system------also abx but also figuring out immune triggers------foods, allergens, etc....
3)***** Beginning to strengthen body and immune system.
4)***** Controlling inflammation and preventing future infections(best you can)
 
I am not sure about what your doing other than what is stated above.....but wanted to just chime in and say we are with ya and wanted to give any info that might help. For us it has been MANY SUPPLEMENTS......I am not sure what has been the biggest contributors to our success, but I would not change what we have done thus far. We have all three out kiddos with it.
 
PM me if you want more info. Keep your head up!!!!! Keep fighting!!!!!

No ideas but wanted you to know I am going to be praying for you! So sorry you feel so bad, but I am glad you are reaching out to this group too.

I am deeply concerned about the Bipolar dx for a 3 year old. What testing has been done? Has he received all pertinent tests for PANDAS/PANS only excluding the Myco and genetic testing? Myco is a pretty big one - I would get him in to the lab asap for it if you can. Has he been tested for tick borne infection? Is the neurologist a PANDAS specialist? My son was dx at age 2.5 and at no time would I have ever considered a Bipolar dx, although I could see why some of the symptoms might have caused a less experienced eye to try to do so. If you are not seeing one of the 'big gun' PANDAS speciailsts, I suggest you get an appt. and do the traveling if necessary. It sounds like your child's future may depend upon it. He needs further testing for infection and if that stone leaves nothing unturned, then further genetic testing. I suggest that you add an immunologist/PANDAS specialist to the treatment team.

I'm making my PANDAS awareness to do list as it pertains to my work at the RI dept of ed and here are some of my initial thoughts for a to-do list:
 
info packet on math and writing learning disabilities and connections to PANDAS/PANS for special ed directors and school psychologists (I'm point in our office on developing guidance to school districts on learning disabilities, other health impairments, and emotional disturbance in the state)
 
awareness brochures and or table display or something at an upcoming statewide summit on social emotional health being co-host by Bradley hospital and RIDE August 2nd (we're inviting school district leaders, reps from school guidance programs, social workers, psychologists, school resource officers, and more and working with CASEL on putting together the day with the goal of developing a statewide action plan to support social emotional education in our schools in RI)
 
continue the stream of info we've started to school nurses and special ed directors and to heads of school psychology programs at URI and RIC
 
build parent resources related to PANDAS at both the RI Parent Information Network and Parent Support Network
 
bring awareness to the RI Special Education Advisory Council facilitated by my co-worker
 
get in front of legislators with educational and mental health interest - this needs more thought of course, but it won't be hard for me to connect
 
I'd welcome any suggestions, angles, critical pieces to include, things left out in my thinking.
best,
Emily

Thanks, Nancy. I guess I really thought that the inflammation would have gone by now. So it surprised us how fast things returned. Going back to the 500 until school is out. Then thinking of switching to 500 in the daytime and 250 at bedtime to see what happens. Also thinking of talking to the doc about another steroid taper to see if we can get rid of the inflammation once and for all. We'll see what she says. Hoping not to go backwards at this point.

He'll likely draw blood right there in his office, so you may need to prepare for that. He is very thorough, he'll take a full history, and take the time to understand what is happening with your child. He sometimes runs behind (which I don't complain too much about because when he's with you, he takes his time and doesn't rush to get back on schedule, so it's comforting to know he takes that time with everyone.) so you may want to make sure you have something for your child to do if you are stuck waiting a while.
 
He may also ask to draw labs on the whole family, he did for us.
 
Good luck, my son liked him, and we just were there last month for our first IVIG - which has worked wonderfully so far!

I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts.
 
The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I.
 
So don't beat yourself up. I think you did the appropriate thing.

We tried the spray, but my son didn't like it. We also used the cup - it's called the Oralflo cup for anyone interested. sometimes though, the pill would get caught if the sippy part of it wasn't completely dry - which was a challenge if more than one pill needed to be taken at a time. (we used a hair dryer to dry it out if needed).
 
Within 3-4 months of using the cup, my 5 year old decided he could swallow pills without it, and has been doing it ever since - even swallows those horse Augmentin pills and multiple pills at a time.
 
It really was very helpful.

We tried something similar when my son was first diagnosed, and the augmentin worked great. We then switched to keflex once daily as preventative and his symptoms all started to return. Amoxicillin alone does not work well for a lot of pandas kids, like you said your child got strep while on amox. Mine did too. So, don't be surprised if the augmentin works great and then there is a relapse. My son needs long term augmentin to help him. You are really on the ball, hopefully you can nip this in the bud early....

Just dropped DS off at the prom. He's going with several friends. Never would have dreamed this several years ago.