minimaxwell

@ Vickie--roommate is having crohns flare up and possible infection from stoma. I know she is not contagious. She is vomiting from the antibiotic which does not agree with her. @ Kiera- we saw slight changes after a few days. Less rigidity,less panic ,less ocd.

so, a little history. DD had pancreatitis earlier this year. it was pretty severe, 3 days in ICU and a total of 8 days in Childrens Hospital Boston. She had just started Biaxin so they thought that might havr been the trigger but honestly they had no clue. 6 weeks later we headed to Dr K for her first lVlG treatment. After a few days really bad headaches and nausea. Started prednisone which helped, eight days later she had pancreatitris again. Looking back I started thinking perhaps the prednisone was triggering the pancreatitis. (she also did a burst before starting the Biaxin) She got 70% better, it was amazing. Week 10 post lVlG she started slipping about 10%. Then she had swollen glands and some congestion,she did not get worse but thought i would mention it. she started begging for more lVlG. She is almost 18 and wants some control over medical decisions. Can't really blame her. So now fast forward..we are having lVlG done inpatient. Running lVlG very slowly, 21 hours each day for 2 days. Running continious fluids as well. Hoping this will avoid bad side veffects. I will keep you updated. DD (Drew) is all about spreading awareness. She has been giving the entire staff here quite the education on PANDAS. So here is the part only a PANDAS parent will understand and find humor in...Drew's OCD all revolves around a vomit phobia. We checked in to the hospital last night because they were going to start lVlG at 7AM. Her roommate starts getting sick at 6PM last night. Dry heaving constantly. Drew tried covering her ears but that did not last too long. Roommate assures her she never throws up just heaves. Drew leaves the room and finds the nursing station where she insists on changing rooms. (very politely I might add). We switch rooms and start to relax. Then at midnight new roommate starts vomiting!! Now there are no more beds to be had,no rooms to switch to. Drew finally comes back into room and roommate feels better. Extra dose of klonopin and Drew falls asleep only to wake at 2AM to sound of vomiting again! That was it for her, spent the rest of the night on a cot in the parents lonuge and I slept in her bed. Now a year ago when she was doing ERP at OCDI showing her a picture of vomit sent her into a panic attack and pulling out her hair. We were able to laugh at all this , only thing that brought her this far was lVlG. Roommate just mentions she is not feeling well again and Drew is ok staying in this room.. Thanks for all the prayers and well wishes we really appreciate them . This forum has taught me so much and we are truly thankful. We will continue to pay it forward. ((hugs)) Tiffani

Dr Cunningham told me she hopes it will be open this fall.

Slow down the infusion rate to no more than 2 gms per hour (we typically infuse at about 6-8 gms/hr) Infuse over 36 hrs as a slow drip, during a two-day hospitalization. Give zofran for nausea, lasix and/or diamox for headache. Avoid steroids entirely Any reason not to proceed this way? concern is for pancreatitis with steroids. She needed them last time for headache/nausea.

It is my understanding that lVlG is ok as long as IGA is not below 20. If the child has low IGA Gammunex is the preferred brand. Perhaps others will weigh in. These are from my notes with dr. K.

This is the study I recently mentioned. Dr. Geller will be doing this at Mass General Boston soon too!

Not a good idea for PANDAS kids, I asked one of the PANDAS experts. Sorry ,I can't remember the reason,perhaps someone else can weigh in on the "why" My brain can only hold so much info these days Once I heard it was not an option I let it go..

Her CD57 was fine, I don't remember the c4a/c3a. I will check tomorrow. I remember my Dad taking Zofran during his chemo,really helps nausea. I will look into the other ones. Kind of wishing we could continue iv fluids at home for a few days.

Hi Nancy, You are not a nag, I totally appreciate all of your wisdom. Finally sent in igenex yesterday, I was going to call them tomorrow to find out how long it takes to get results. Dr. Walter will be overseeing it but Dr. T is calling the shots.Just got this email from Dr. t--thoughts? Let's slow down the infusion rate to no more than 2 gms per hour (we typically infuse at about 6-8 gms/hr) Drew is about 50kg so she would need 75 gms. Infuse over 36 hrs as a slow drip, during a two-day hospitalization. Give zofran for nausea, lasix and/or diamox for headache. Avoid steroids entirely Dr. T

just curious whose protocol this is?is it for Immune defic.?

Does it look like Scarlett fever?

We just got the green light to do lVlG at Mass General in Boston! It will be her second lVlG. She improved 70% but then started slipping and was begging for more. A little history--DD17 did a 5 day steroid burst 1/24 with no improvement to PANDAS symptoms. 6 days later she was in ER with Pancreatitis. I thought at the time it was a possible reaction to the Biaxin she had started 2 days earlier. She spent 3 days in lCU and a total of 8 days in the hospital. We then decided to go for the lVlG which she had in March. On 2nd day of lVlG Dr. k gave her something in her iv to prevent headache, I think it was solumedral. He gave us a script for Prednisone to take home in case she got a bad headache. Sure enough 2 days later she woke with a massive headache and nausea. We started 5 day Prednisone. 8 days later she end up in Hospital again with Pancreatitis. Doctors can't tell me why,they ran tons of tests,scans,xray... So now I'm starting to wonder if it was the prednisone....Don't you love it when we have to become a combination of Sherlock Holmes,MD. So my question for all you smart PANDAS Mom's and Dad's. What can I use instead? Thanks in advance for all suggestions. DD will be 3rd PANDAS patient getting lVlG at MGH. Our insurance covers so President of Blood Bank gave approval.

Finally!! https://mghocd.org/ocd_pandas/ Click here for PDF The pediatric OCD community has recently been alive with discussion of P.A.N.D.A.S., or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. This long-winded mouthful of a condition is relatively new to the pediatric mental health world, and is still only in the hypothesis stage. Researchers both at MGH and across the country are very interested in exploring this relative of obsessive-compulsive spectrum disorders. There is an increasing body of evidence that suggests there is a subset of kids who develop acute-onset OCD with notable tic and motor symptoms. In the prototypical P.A.N.D.A.S. case, a child suddenly begins exhibiting OCD-like behaviors. Over the course of a few days or weeks, a previously asymptomatic child can become functionally incapacitated by his/her new obsesssions, compulsions, and noted motor tics. This rapid-onset condition can be very scary for families, and most parents don’t know where to turn for treatment. Sudden onset of OCD Challenges with eating, and at the extreme end, anorexia Sensory issues such as sensitivity to clothes, sound, and light Handwriting noticeably deteriorates Urinary frequency or bedwetting Small motor skills deteriorate – a craft project from yesterday is now impossible to complete Tics Inattentive, distractible, unable to focus and has difficulties with memory Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs. Suddenly unable to separate from their caregiver, or to sleep alone Screaming for hours on end Fear of germs and other more traditional-looking OCD symptoms What’s causing it? The PANDAS hypothesis is based on the notion that an infection may be causing rapid-onset OCD. Most commonly, a child’s strep throat (which may be so subtle it goes undetected) turns into a debilitating autoimmune condition. For this reason, any children experiencing sudden-onset OCD symptoms are now given a strep test. Clinicians are discovering that many cases of sudden-onset OCD may actually be caused by an underlying infection. The central hypothesis of P.A.N.D.A.S. derives from neurobehavioral changes associated with Sydenham’s chorea, a potential subsequent outcome of acute rheumatic fever. Amongst children who acquire rheumatic fever, some (20-30%) go on to develop Sydenham’s chorea, classically exhibiting uncontrollable tics and motor hyperfunction. Researchers noted that some previously asymptomatic kids experienced acute-onset OCD accompanied with tics and movements. These symptoms were similar to those seen in Sydenham’s chorea, and hence the hypothesis of P.A.N.D.A.S. was born. In these children, an immune response to group A beta-hemolytic streptococcus (GABHS) infections may lead to inflammation of the basal ganglia in the brain. The result is a sudden-onset condition that appears similar to both pediatric OCD and Sydenham’s chorea. The PANS Hypothesis: Broadening the Scope An even newer line of thinking has categorized all rapid-onset pediatric OCD cases into an even broader category known as PANS, Pediatric Acute-onset Neuropsychiatric Symptoms. With PANS, a recent and observable infection is no longer a requirement. Rather, the PANS hypothesis is a broader grouping that includes children with (all three): 1.) Sudden onset of OCD symptoms that impair family/social/academic function 2.) Neurobehavioral changes including (2 of the below): a. Anxieties b. Sensory/Motor abnormalities c. Behavioral regression (e.g. new onset impulsivity, hyperactivity) d. Deterioration in school performance e. Emotional lability/depression f. Urinary symptoms g. Anorexia 3.) Symptoms are not explained best by psychosocial, medication reactions, or outstanding metabolic disorder Treatment & Further Research into PANDAS/PANS As the PANDAS/PANS hypotheses are still in the developmental stage of scientific research, the medical community is only in the early stages of formalizing standard treatment protocols. At this time, most research is aimed towards treating the (potential) underlying infection. Anecdotal evidence suggests that an antibiotic regimen (such as azithromycin) may target the underlying infection and cause a reversal of symptoms, although a full-scale placebo-controlled NIH treatment trial has yet to be done. Monitoring of immune markers in the central nervous system may soon provide critical insight into the etiology of this condition. Stay tuned to MGH OCD for updates on PANDAS/PANS. Our pediatric OCD team is on the cutting-edge of this scientific research and we hope to help many of our young patients overcome this scary and debilitating condition.

My non-pandas son was also on the small side,then his height dropped off a little. blood work showed Celiac (also auto-immune),endoscopy confirmed this. I give Florstar and Cultrelle 2 hours apart from abx.

I agree with tpotter. you can also try getting into dr. Tanya Murphy who has a study in florida. Can't find the link to the study but i have posted it before. they provide a travel stipend and cover medical costs. Good luck,keep us updated. Also my vote is to give the abx. Tanya Murphy, M.D. Professor Director, Rothman Center for Pediatric Neuropsychiatry Contact Information Departments of Pediatrics and Psychiatry University of South Florida Phone: 727-767-8230 Fax: 727-767-7786 Mailing Address: Department of Pediatrics University of South Florida 800 6th Street South 4th Floor, Box 7523 St. Petersburg, FL 33701 Email: tmurphy@health.usf.edu Education M.D., University of Florida

We met with Dr. Geller and he is now back from his medical leave (although not able to work as many hours as before). He will be seeing PANDAS kids again. They are still working on getting abx trial up and running. in the meantime if you are having trouble getting abx i would go see him. MGH is not on board yet with lVlG but we are working on it.

Wondering if they will know what to do with this and how best to treat. We are also going to Dr. James Greenblatt also but will have to pay out of pocket for this.

Ladies, thanks so much for the education!! Do you know anything about this Dr. Ben? http://mthfr.net/mth...%28MTHFR.Net%29 Do you agree with his findings? MTHFR and Methylation Presentation – PDF Version Posted: 05 Jun 2012 05:06 PM PDT Many physicians have requested copies of various slides from my MTHFR and Methylation Presentation. I have accomplished this finally. Please respect my work and cite me as author: Benjamin Lynch, ND of www.MTHFR.Net Education is critical here – for all of us. You may share as little or as much with your physician as [...]

I have posted about this before but will post again I had asked dr T about it and he told me not to worry about it. I decided to do it anyway(not leaving any stone unturned any more). Turns out she is Positive for one copy of each. (the 2 they mostly test for,sorry too tired to remember exactly what they are called but someone will chime in--LLM??Nancy?? (they are much more knowledgeable.) Anyway--I circled back with Dr T, told him lots of PANDAS kids are showing this. He said he going to start adding it to the list. We are meeting with the genetics team at MGH as well as an Integrative (Dr Greenblatt) in a few weeks. I will update then. Getting my son tested now too. He is not PANDAS but DOES have Auto-Immune ( Celiac) Who are your PANDAS docs?

Thanks Nancy,yes we are on at wait list to see Dr. Buie in Newton-Wellesley, I am supposed to hear back from them tomorrow to see if they can see us sooner. What is the difference in seeing him there? I did not realize he is not DAN> Really hoping he can figure out the Pancreatitis piece of this for us.I need to find a dr. local to help with the MTHFR--too much $$ and time off to travel to other Dr.'s (even though Dr. Bock sounds amazing) Any other suggestions. Will the genetics team at MGH know how to treat this? Also, thanks for everyone chiming in ,we appreciate everyones help,escpecially those who know their replies might generate some heated debates. Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

Great Question! I am so frustrated about this. Can't get Dr. Greenblatts office to call me back (he is having some office staffing issues) I can't get into Dr. Buie from Mass General until the end of July. (He is the big GI Dr. who also is a DAN Dr. ) Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

@ AMYSLP--You need to request to be added on the PANS PANDAS PITAND fb page. @Mayzoo- thanks for the hug and kind words. Drew has been a Special Olympics Coach for 7 years and is also involved with Best Buddies. She also works with Quadrapelegic and Parapelegic children who are non verbal Last summer she worked as a one on one aide in a Special needs class room for an Autistic child.. It would not be a waste of her time, just let her know what works for you guys

My DD17 now mentors/penpals with younger PANDAS kids. Feel free to have them email her drewashleymaxwell@gmail.com or friend her on FB. there is also a private fb page for Pandas kid to connect with each other.

@tpotter... I thought we were the only ones that were dealing with pancreatitis!!! Any others?? Colleen, hope she gets well soon!

I saw NO positive change with NAC for my DD who is EXTREMELY verbal (always has been,speaking in full sentences as baby when her peers could only say a few words). Not sure if it made her "worse" since she was a mess back then anyway. We also tried Riluzole for OCD before we knew in was PANS. (well that and a laundry list of other meds,including Risperdal which made her start lactating!!) http://intramural.nimh.nih.gov/pdn/pubs/pub-25.pdf DD had been suffering for 11 years, the ONLY thing that helped was lVlG. Just found out she is positive for 2 copies of MTHFR. Strongly advise PANDAS kids to be tested for this. I spoke with Dr. T about it the other night, he said he is going to start adding it to his labwork!