putting together the piece

Sounds like an underlying infection weakening the immune system and allowing everything to hit him hard.
Did you check for Lyme?

Congenitally passed lyme or coinfections could be the issue for your daughter. Our LLMD diagnosed DD14 with such after clinically diagnosing me with bartonella as well.
 
As I have treated DD with bartonella and babesia antimicrobial herbs, I have treated myself as well with the same dosages and symptoms have improved dramatically.
 
My "menopause" symptoms (diagnosed by both a PCP and an endocrinologist) which started shortly after DD was born have resolved. These included vertigo, palpitations, hot/cold flashes, tingling extremities, headache, almost continuous flu-like feeling, derealisation, brain fog, panic/anxiety attacks, loss of cognitive/executive function (especially multitasking) ie. getting lost going to the grocery store and forgetting how to spell simple words like "apple", forgetting how to turn off a light switch, word drop, joint pain in the lower back and elbows, raging, fatigue so significant that I could not walk up stairs without sitting down, insomnia. And more, but it's been so long now since I have had these symptoms that I don't care to try and remember the rest.
 
Many of DD's initial symptoms were various motor delays and sensitivities to stimulus.
 
For your allergic-type reactions I would investigate Mast Cell Activation Disorder:
 
http://www.healingwell.com/community/default.aspx?f=30&m=3438440
 
There are several links in this post by one of the moderators on the HealingWellLyme forum which are worth reading.

My ds's OCD behaviors include a lot of special steps before stepping over thresholds or into/out of shadows on the floor. It looks like a strange dance (LOL, yes once in a while when I'm in a certain mood I will bust out laughing, which is never good but it sure beats screaming or crying). He was careful to hide it at school in the past, though his then-teacher had a degree in psychology so she was able both to notice the minimal behaviors and to "get it," which was awesome.
 
One of his biggest compulsions is triggered by certain sounds (my voice! and the voices of a couple of siblings) so that issue isn't a problem at school. However, sound sensitivity can be a problem.
 
Now in a middle school situations, executive function is becoming a huge issue, i.e. organizational stuff that would be typical for, say, a child with adhd (forgetting homework, doing the wrong assignment, not finishing, not writing the work down). He's in a difficult position because he really needs to pull it together; it's hard to explain to a teacher that medically it's not his fault. I guess I'd shoot for adhd-sorts of recommended supports. I'm becoming afraid that we may have to get ed psych testing done and get official accommodations.

trouble making decisions (yes, Melmix!) excessive erasures on paperwork quick frustration (result of perfectionism) extraordinary, non-age-appropriate, worry/concerns about things (will that chalk dust hurt my lungs? will the glue on my hand soak in through my skin and poison me?) withdrawal from social activities (fear that he/she won't do things/play "right") In our case during the elementary school years, that "flash frustration" was the biggest issue, and the teacher would sometimes attribute it to acting out or temper or whatever. But what it truly was was perfectionism and an enduring lack of satisfaction with his own work product. Even in kindergarten, he thought his art pieces were supposed to look like Picasso's, and his handwriting was supposed to match the Times Roman font displayed on the bulletin board at the front of the room!
 
I whole-heartedly recommend Gail B. Adams' book "Students with OCD: A Handbook for School Personnel." It is excellent and an easy reference book that addresses not only OCD-variant behaviors that teachers are likely to see, but also the appropriate accommodations that can be made when those behaviors appear. I gave copies to DS's principal, social worker and school psychologist.
 
Good luck!

One of the biggest things my son has an issue with is deciding. For example if my husband wants to take him to the movies, my daughter will say yes and he will say no,yes, no, yes and then will immediately want to go when they are gone. He also had a problem transitioning from room to room for classes - he seemed to not want to step over the threshold. He used to pack up his stuff a lot in bags. He used to want to keep all of his papers and even some boxes for toys that had pictures on it.
Hope those help.
Melmix
DS8 PANDAS/Lyme

I think that an IEP has more legal backup (it is governed under the American with Disabilities Act)- so I have been led to believe the school takes those more seriously. If you have the money to hire a special ed attorney, or advocate, it may be helpful. Also- Beth Maloney will consult with you and your school district as an advocate.
 
Good luck!

Also-
 
An IEP can MODIFY school requirements, whereas a 504 will ACCOMMODATE the students needs but not change requirements

Sent you a pm.

Emst is correct. If your child has not already been evaluated that is step one. You as a parent can request an evaluation directly from your child's special education department. After the evaluation if you are denied an IEP follow my prior advise on crafting a letter.

Go to webpediatrics.com read the information on PANDAS/PANS/PITAND you can craft a great letter pertaining to your childs needs based on a lot of the information Dr K. has published on this site. Have your doctor sign it. Send it in with a request for an IEP. If you are denied ask for mediation. You may get offered a 504 plan instead of an IEP initailly if this is the case case also ask for mediation.
A 504 plan is good but an IEP is much better. You will be asking for OHI (other health impaired) as your disability.

What state do you live in?
Getting an IEP is more involved then just a letter.
Find someone local who can mentor you because the already know the ropes. It can be a friend
of another parent or you can hire a mentor or a lawyer.
A book like "From Emotions to Advocacy" is a good start as is the book "How to compromise with your school district without sacrificing your child."
(Sadly) I'll suggest that you not assume that your school district has your interests in mind.
Go in to your meeting with a list having done your homework asking for all the services that you think he needs and behaving as if you have a seat at the table (which you do you are a member of his team) vs. many people go in just wondering what their child will get or be given from the district.

This is 100% legal and both DS's neurologist and his integrative neurologist were both so encouraging for us to try.
 
I know that I probably sound a bit like a snake oil salesman, but something here has been shaken up! Wednesday he asked me to cut his hair, I bought clippers at target yesterday and he insisted I do it last night. He looks so handsome and he shaved and he looks human. He still has a long way to go, like sleeping in his own bed (he's sleeping on his sisters trundle now), going outside, synagogue, school, etc). But he's pushing himself and we are over the moon. Praying it continues!!
 
T.Anna

"I fully expect the behaviors to resurface once he is home."
After reading his case history, I too belive this to be the case. BUT you do have something to work with.
He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.
If it were my children, I would use the possibility of going back to the hospital as a stick.
I would also stay away from any psych drugs for as long as possible.

Glad to hear @nicklemama 's experience w/Lamictal, in same class as Trileptal and Topamax. We were going to go to Lamictal if Trileptal didn't work for ds15. Gradual increase is needed with most of these meds, but unlike the SSRIs and antispychotics needing to be uber-low doses (per Dr. Swedo), the anti-seizure meds can be dosed higher, at least w/our PANS child.

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal.
 
My son has Lyme, too.

I'm so sorry. We had a 12-day psych. hospitalization for ds15 when he was 12. Then we had to place him in a thx residential center in Utah for 2 yrs. Unfortunately this was all before we had our PANS dx (SO glad you already have that going), so I'll just speak about our experience at hospital, and what is working now for us. BTW, we were not accepted at Rogers Memorial b/c ds15 has a developmental disability.
 
 
X Depakote is the go-to for many in-patient facilities, which basically sedates the patient. Didn't help us long-term at all but was fine enough to give us some breathing room to figure out what to do next.
X Celexa didn't help w/anxiety at all.
X We'd previously tried Zoloft, Seroquel, Topamax (helped but it dulls cognition), Lithium, Risperdal, and many other meds., unsuccessfully.
 
 
His current cocktail along w/a bazillion PANS supplements and Augmentin that is working very well:
X Trileptal (anti-seizure med but helps mood stabilization, way less side effects than the antipsychotics)
X Anafranil (old school tricyclic antidepressent) is helping w/anxiety and OCD.
X Risperdal-M (rapid melt) PRN if things get really bad. It basically knocks him out.
 
 
I wish the best for you. Sorry I can't speak to the 23andMe, though we did all the MTHFR testing as well thru another lab.

Just a couple of thoughts: 1) Do you have a case manager with your insurance or is there a special needs coordinator? You may find them helpful in advocating for appropriate care--but remember, they still work for the insurance and will not necessarily have your child's best interest all the time. 2) If there is some medicine that they want to give him that is not appropriate for his particular condition or previous bad reaction, then you might find dropping the term "contraindicated" into your conversation with the doctor such as "Hmm, I thought Risperadal is contraindicated given his previous reaction to it." 3) Is he on or has he been given any anti-inflammatories? Do they help him? If not, you might insist that they try one prior to trying any anti-psychotics. I still can't believe the difference it makes for my kiddo. 4) You might also ask the treating physician point blank "How many PANS patients have you personally treated?"
 
Also, there are state based advocacy groups for kids with special needs. I have found them to be extremely knowledgeable and great resources. You might want to find them and make a call to a family advocate. They can be helpful in connecting you to resources and helping to know your child's rights and how to advocate for them. They may also know about alternative settings or the possibility of home healthcare to help keep your child safe but at home...
 
Wishing you the best,
 
Sirena
 

If I may,
 
First say, how sorry I am that you have to experience this situation. I pray that your son gets better.
 
If you do not have a relationship with anyone in the facility, I suggest you might need an advocate. Preferably from the facility. I have found when dealing with any agency they follow the rules and are always on the defensive. The purpose of this posture is safety first. Which is what you seem to need. Our DD raged for 4 months straight, and I could not blame DD mom, if she admitted her but she stuck with it and so did DD's big brother. We knew nothing about how the system works and when we learned about how they can take control away, we needed to know what our alternatives were. I found with some people in my work that are set in their ways, can be difficult to work with and defensive.One of the easiest ways to break down walls is to ask for assistance. It seems to feed what they need. I found this to be true for other situations as well.

You can search specific medicine names in snpedia and perhaps turn up rs id#s to compare with your results (search the text file for the rs id):
http://www.snpedia.com/index.php/Seroquel
http://www.snpedia.com/index.php/Risperdal
 
You may also put the 23andme results into promethease.com for $5. I recall promethease turning up a couple of rs id #s that indicated something about SSRIs and some about anti-depressants. The person would be "more likely to respond to" certain meds, or not, though my fear in the language is that perhaps "more likely to respond to" indicates more likely to overreact - it's unclear to me without going to the actual medical studies though the studies should be linked at snpedia. (My own child's results are confusing - some results indicate more likely to respond, some less likely)
 
These rs id#s have something to do with anti-depressants:
http://www.snpedia.com/index.php/Rs1360780
http://www.snpedia.com/index.php/Rs2032583
http://www.snpedia.com/index.php/Rs2235040
http://www.snpedia.com/index.php/Rs7787082
http://www.snpedia.com/index.php/Rs7997012
http://www.snpedia.com/index.php/Rs1532701
http://www.snpedia.com/index.php/Rs12720067
http://www.snpedia.com/index.php/Rs4148740
http://www.snpedia.com/index.php/Rs3892097
http://www.snpedia.com/index.php/Rs908867
 
SSRIs:
http://www.snpedia.com/index.php/Rs6311
http://www.snpedia.com/index.php/Rs1364043
(should probably search for more)
 
Hope this helps...

What a horrible situation to find yourselves in; I'm so sorry.
 
We, too, found Risperdal to be a poor choice for our DS when he was in a bad place; he was prescribed Seroquel, also, for a short period. I won't say that we liked the Seroquel, but it did basically put him to sleep for a couple of days and gave all of us a chance to catch our breath. On a lower dose, though, it just sort of "dulled" him out, made him not himself, and we didn't think that was a good answer.
 
I'm sorry that I'm not well-versed enough in 23-and-me or the genetic results in general to speak to any of that and the possible match or mismatch with SSRIs. However, the thing is that, even if you can find the right SSRI and the right dose (low) for your DS, it is unlikely to have a quick enough impact for the hospital; those generally take between 4 and 6 weeks to come to full effectiveness, and especially because you'd want to begin with a very low dose and increase very slowly, if at all, that's a luxury you're probably not going to be afforded in the current situation. They want him quiet and compliant ASAP; unless it's a research or teaching hospital with doctors well-versed in PANDAS/PANS, like Mass General or USF, for instance, I doubt they want to or can afford to address the subtleties of his condition and therapeutic needs.
 
I think reaching out to Beth might be a very good idea, as dcmom has suggested. Holding insurance coverage over your head so that you will agree to anti-psychotics is both unfair and unfortunate, but without a lawyer or advisor to help you advocate for a different "standard of care" relative to a PANDAS patient as opposed to a standard "psych" case is likely to be tough. Another suggestion I might have would be that you try to set up a private appointment with the staff/attending psychiatrist at the hospital? Speak with him directly and get a feel for both his/her level of PANDAS awareness as well as the willingness to think outside the box? Also, if you have a treating psych that you've worked with before on a private basis and whom you trust at all, I would ask them to consult with the hospital staff in that regard, as well.
 
Sending positive thoughts and cyber hugs to you and your DS.

I am so sorry you are dealing with this. You are between a rock and a hard place, and certainly the first priority is his safety.
 
That being said, we had a very bad experience with an emergency room this year, which has lead me to be very distrustful of doctors and hospitals. I do not know your situation, but I would consider the following_
 
Are you able to change facilities? The only residential treatment facility that I would trust with my daughter is Rogers Institute. I believe they are in Wisconson. Is moving him there a possibility?
 
I would consult with your insurance company. I have heard that they try not to cover much time for inpatient hospital stay (not surprised, insurance companies suck). Once the facility states he is no longer in crisis (their opinion, not yours) the insurance co will want him released, will not cover.
 
consult an attorney? I don't know your financial situation, but I know the ER totally misrepresented their rights regarding my daughter when we were there. I would not trust what the hospital tells you. Is it possible for you to consult an attorney regarding exactly what your rights are?
 
Treatment? I have also heard that there is not a lot of therapy at some of the hospitals, it is more a "holding" facility until the patient stabilizes. If this is the case, I would look in to following up this hospital stay with a longer residential stay in a therapeutic setting of your choice.
 
I am sorry I have given you more questions than answers. I think Beth Maloney could possibly consult for you, after her medical kidnapping cases she is probably pretty experienced in this area, and we know she understands pandas.

Can anyone who was at the conference share what they learned? In the past, there have been videos released to the public, but I understand the speakers declined to be taped.
Someone on the forum mentioned there was new information regarding immune abnormalities.
 
Always curious about the latest research.
 
 

Yes a doctor in Pa. is doing LDA and LDI for our family. We are having good results.

Steroids often suppress the immune response and can give a chronic infection a leg up. Hence the information you have heard regarding Lyme/steroids.
 
I too have Lyme and all three of our children have gestational Lyme. We did do a steroid burst with older DS prior to our Lyme diagnoses for Pandas. He seemed to be slightly better while on them but then returned quickly to his prior baseline after we completed 5 day burst.
 
I was given steroids while pregnant with twins which triggered high blood pressure and seizures. I was 36 1/2 weeks pregnant and they had to deliver the twin as a result of my bad state (I did not know I had Lyme).
 
A good friend who has chronic Lyme as well has been using a LD steroid for adrenal fatigue for over 1 1/2 years now.
 
Our LLMD has used steroids but only at doses that don't suppress the immune response.
 
A single use antibiotic will not treat Lyme and probably why you are not seeing any real gains from current antibiotic of Augmentin.
 
We have not used steroids with our children since initial 5 day burst and Lyme Diagnoses due to my personal experience and the symptoms it triggered for me. We use other natural anti-inflammatories like Enhansa or Turine.

According to the Mayo Clinic a low WBC count can be due to:
 
•Viral infections that temporarily disrupt bone marrow function
 
If she is flaring, it may be that her immune system is engaged and is fighting off a virus. My suggestion would be to wait for the flare to end and retest the WBC count.