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Member Profile of PANDAS kids


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hello all,

 

I really want to try to get this member file started, I know it would help us all out when we want to refer to someones history or to find comparisons for our own child. having all our info in one place for reference would greatly help me, so I hope everyone will take time to fill this out. I know I for one, am so interested in each of your stories, so knowing all your background infor would really be helpful and save time.

 

This thread is for a quick reference of each posters "history" and pertint info that we may be interested in, now or later. so feel free to fill in your own box, and edit as you go along. here is a basic outline of info to be entered. its basically a documentation of your child's history regarding PANDAS. discussions concerning anything you want would be on a new thread. this is just for reference.

 

Here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. specific dates would be helpful too.

 

**(this section could be copy and pasted onto your post and then fill out as you go along).

 

Poster name:

Location:

Childs year of birth/present age/gender and weight:

Brief history of symptoms/when they started

Any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc.

Camk number (if done)

Antibiotic use history:

 

Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful)

Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.)

 

Steroid trials and detailed experience:

 

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too.

 

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

no discussion on this thread, direct questions elsewhere. Just fill out your own post and any info you have should be there and you can come back and edit any time with updated info. anything you feel you want to share with others.

 

Thanks so much. please feel free to add whatever you like.

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Poster name: mati's mom

Location: Northern VA

 

Last update: 11-1-09

 

Childs gender/year of birth/present age: male/1997/12

 

Brief history of symptoms/when they started: Started showing OCD Feb/09 after bad case of flu (or so we think?)

 

Any previous diagnosis, i.e. autism, asbergers, pdd: NONE

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) OCD/anxiety

 

Results of any testing done:

ASO: 415

Dnase: 680

Strep: (Stool Test) Alpha Hemolytic Streptococcus - Moderate / Corynebacterium species - Rare

SIgA: 17 (normal between 400-800!)

CamKinase: hope to have this Nov09

Other

 

Antibiotic use history: (include weight as a guideline - 80 lbs)

Amoxicillin (took for 2 months - no longer taking this)

Cefuroxime 250mg 2xd

Plaquenil 200mg 2xd

Vancomicin 125mg 1/2 capsule every other day

 

Tonsils Out: YES (Aug09)

 

Doctor and what protocol they suggested:

Dr. Zachrison/Dr. Mian - Antibiotics and lost of supplements to boost immune system/help detox

Tons of testing to see what other things may be contributing.

 

Other doctors that were helpful and why:

We will see Dr. Latimer Nov. 18 for second opinion

 

Steroid trials and detailed experience: not there yet!

 

Special section on those persuing IVIG or PEX and what the details were:

 

Additional therapies sought:

 

Supplements used:

 

Other meds used:

Nystatin for enuresis

 

Any 'other' pertinent info:

 

 

I don't have time to fill it all out now but will work on it during the week. Feel free to post your own and come back and edit as necessary.

 

HTH,

 

Isabel

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Poster name: Faith

 

Location: New York

 

childs year of birth/present age: born 1999, currently 10 1/2, male

 

Brief history of symptoms/when they started: First tic seen at 3 1/2 (facial grimace), which lasted a couple months, and seemed to subside, however followed by a flurry of eye blinking, sniffing, short cough, shoulder hunching. I did not know anything of PANDAS at this time. I was even afraid to go to a neuro. Symptoms of tics waxed and waned over next few years, but were on the mild side. I see now he had the separation anxiety during these years, sometimes worse, sometimes better, but always there. Tantrumy behavior hard to gauge as this is probably normal for 3 5 year olds, however I am recollecting several that were over the top at 3 and 4 yrs. old. Also would not sleep alone in his room in his bed and this continues to this day, we tried it all. Also bedwetting til 9 yrs old. If he had any strep at these years, I do not know, but I see in his medical file (I had copies made from peds office) he did have wet coughs, fever and bronchitis a couple times, (a couple months before the first tic episode at 3 1/2, so maybe this was the start?) Definite strep at 7 yrs old with a definite waxing of eye roll tics and hyper behavior, did abx and tics/behavior subsided within 2 days. upon investigating PANDAS route, titers and cultures were subsequently low and no further treatment was recommended or sought. I did try abx 2x in the following year when he waxed with tics just to satisfy my own hunch, but symptoms did not subside absolutely, so I dropped it. He does not get sick often, but mostly a virus once or twice a year with fever, vomiting and lethargy for about 24 hrs. and then fine. (if he waxed with symptoms subsequent to these illnesses, I am foggy on when as I was not tracking it, howver obviously he did at some point, because I never had a year without tics or other symptoms).

 

Any previous diagnosis, i.e. autism, asbergers, pdd:... none

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): .... Main presentation is tics, both motor and vocal, with vocal being the prominent one. Also shows ocd tendencies, attention/focus problems which seem to decline more each year, severe time management problems, irritibility and sensory (which seems to cause the irritiablity), separation anxiety, rigidity and 'creature of habit' behavior, tantrumy and meltdowns when things don't go his way, defiance to mother only, had bedwetting til 9 yrs old (getting better, he now 'catches' himself in the mornings), picky eating, underweight.

 

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but positive culture?, immunology results, etc.: ........ We have one documented case of strep throat at 7 yrs. old. (which was actually diagnosed without swab as the physical signs were obvious), he had a definite increase and start of a rapid eye roll/looking up and very hyper behavior the weekend this was diagnosed. he told me his throat hurt the day after I saw this eye roll tic start. we were prescribed amoxycilin at the time and the eye tic subsided within 2 days. This started me on the road to investigating PANDAS. We were refered to an Infectious Disease doctor for consult, and upon testing, titers were low and subsequent swab and culture were negative. end of story. I treated him as tourettes/ocd ever since, and am now since October 09, am going down this road again.

 

Camk number (if done): ....... 179

 

Antibiotic use history:

- Did amoxycilin with the strep he had at 7 yrs old, symptoms did decrease, however subsequent testing seemed to not indicate PANDAS. I did not persue it, however I did manage to get two more trials of antibiotics (amoxycilin, 10 day course) during the following year when during waxing of tics to see and satisfy my own hunch, however I did not see complete cessation, so again, that was that, I assumed abx did not work for him.

- Currently doing Augmentin 500 mgs. 2 x day (prescribed by our ped. as I thought he showed signs of strep, but it was negative, altho we started the abx and doctor agreed to give me 2 refills to see if it made any difference in his symptoms.....he does not agree that I should do this if no strep is present and symptoms have not abated after 10 day course, but said I wanted to continue til I saw a specialist (Dr. L.).

- Dr. L. prescribed to continue on Augmentin (400 mgs. 2x per day)

 

Doctor and what protocol they suggested: .....Currently had first visit with Dr. Latimer 11/3/09.

 

Other doctors that were helpful and why: Our other docs such as Ped, Neuro and ENT and DAN! doc are helpful if just to give their opinions and knowledge re PANDAS, and to provide balance and common sense, even if they are not the treating doctors. They are needed and invluable for my son's overall healthcare.

 

Steroid trials and detailed experience:..... Dr. L. has prescribed continuation of Augmentin 400 mgs. 2 x per day, and a month of prednisone. I have not started the prednisone as I am nervous about side effects. awaiting advice from her to see if I can do it after the holidays...in the meantime I want to see what happens on the Augmentin.

 

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too.: ....... None

 

Additional therapies sought: ..... Naturopathic, Dietary restrictions, supplements, chiropractic, NAET, Igg food sensitivity testing and elimination of those foods. Some success for management of symptoms, but not absolute.

 

Supplements used:..... Have tried a variety over the years, but feel less is better for my son, as we have had some reactions in the way of increase in tics, especially while trying amino acids. same with fish oil. Currently give Tall Tree (by Country Life) multi vit/min which seems fine. Also magnesium and b6 seem to be okay.

 

Meds used: ..... never did any medications

 

Any 'other' pertinent info: Has 504 plan implemented in 3rd grade due to tics/ocd/anxiety.

 

 

 

last updated: 2/7/10

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Poster name: Suzan (Susan)

Location: Charlotte, NC

Last Updated 11-12-09

 

Childs year of birth/present age/gender:

 

DD8 - 2001, Age 8, Female

DD7 - 2002, Age 7, Female

 

Brief history of symptoms/when they started

 

DD8 - First documented Strep infection around 16 months old. Soon after, manic, inappropriate laughter while pulling out hair, sticking fingers down her throat, gagging herself with food. Hysterical fear of flies, separation anxiety. Sensory issues, temper tantrums, poor sleeper

 

DD7 - First documented Strep infection around age 12 months old. Symptoms started as she grew...Very poor sleeper, silent temper tantrums, very strong willed and stubborn, slow to eat solid food and very picky, slow hair and teeth growth. Early obsessions with snow globes and other heavy things, lots of lining up and organizing. Always wanted to be held. Separation anxiety

 

Any previous diagnosis, i.e. autism, asbergers, pdd -

 

DD8 - Sensory Processing Disorder, gluten intolerance/possible celiac

DD7 - Sensory Processing Disorder, mitocondrial markers, gluten intolerance/possible celiac, low muscle tone, epilepsy

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

 

DD8 -

OCD - I don't fully understand how OCD affects her right now but as I'm learning, I think this is the primary issue

Separation anxiety

Sensory issues (clothes don't feel right, socks, shoes, underwear, pants, you name it)

Raging, facial grimacing, self injury

Roving pain

Perfectionism

non-verbal at times

 

DD7 -

Food hoarding

Food restriction, loss of taste senses

Age regression (acting like a baby, sucking her thumb, not talking or talking like a baby, wanting to be held, putting her feet on you or in your face)

Sensory Issues (no water in face or on head, don't want hands messy, no grass touching feet, etc.)

OCD (probably all of the above is related to OCD)

Separation anxiety

 

Results of any testing done: i.e. Aso & dnase, strep results (always positive? always negative swab, but Positive culture?, immunology results, etc.

 

DD8 -

Positive rapid strep throat and vaginal

Elevated ASO / DNASE (slightly elevated. I'll update numbers and all test results when I get them later this month)

Failed most Strep Pneumo serotypes

Low normal IgA

IgG and Subclasses normal

Camk number (if done) - 134%

Anti-neuronal Antibiody Titers (180 min)

Anti-Lysoganglioside - 620

Anti-D1 - 4000

Anti-D2 - 8000

Anti-Tublin - 2000

 

DD7 -

Recurring Vaginal Strep A positive cultures (rapid and culture when both tested)

Normal ASO/DNASE titers

Low normal IgA

Camk number (if done) - 118%

Anti-neuronal Antibiody Titers (180 min)

Anti-Lysoganglioside - 320

Anti-D1 - 4000

Anti-D2 - 8000

Anti-Tublin - 2000

 

Antibiotic use history:

Both girls have lots of antibiotics starting very young for strep, ear, sinus and chest infections. Started zithromax for PANDAS in July 2009.

 

DD8 - Rapid improvement on antibiotics but they are not working long term.

DD7 - Very successful with antibiotics. She is about 95% now.

 

Doctor and what protocol they suggested:

 

Dan! Doc treated based on Dr. Cunningham's test results. 250 mg zithromax daily for 6 weeks and then taper off as much as possible.

 

Other doctors that were helpful and why:

 

Pediatric Neurologist (first suggested PANDAS based on recurring vaginal strep infections but he does not treat). New Immunologist is interested in PANDAS and is researching and working with us. I'll update later on this.

 

Steroid trials, IVIG, PEX and detailed experience: None

 

Additional therapies sought:

 

OT for sensory processing disorder, chiropractic

 

Supplements used:

 

DD8 - Attend and Extress by Vaxa, probiotics, L-Theanine, Kirkman's Spectrum Complete

DD7 - Probiotics, Caprylic Acid (for yeast), Kirkman's Spectrum Complete, Omega 3, 6. 9, (weaning off - taurine, biotin, zinc, alpha keto glutaric acid)

 

Meds used:

 

DD8 - 200 mg ibuprofen 2x a day, benadryl, zyrtec, zithromax

DD8 - Zyrtec, zithromax

 

Other:

DD8 - Tonsils and adenoids out age 5, ear tubes age 3, appendix out age 8. Became very OCD after nitrous oxide for a tooth filling. Emotional, angry and unreasonable after general anestesia,

DD7 - Ear Tubes age 2, Hemangioma birthmark on forehead and back. Laser surgeries from 4 months old, steriod foir 1 month at 3 months old, generalized seizures (absent, no convulsing), assumed "cured" by going gluten free

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Poster name: Denna

Location: St. Louis, MO

Childs year of birth/present age/gender: 1997/12/male

Brief history of symptoms/when they started strep 9/1 just did Keflex thought nothing of it never dreamed PANDAS would happen again, H1N1 likely 9/7, PANDAS started about 9/11

Any previous diagnosis, i.e. autism, asbergers, pdd No previous dx of anything although I've thought and studied asbergers for a long time - socially fits that mold.

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) two huge episodes, one in 2007 one in 2009 - rage is the biggest issue. Fits of rage that involve breaking things putting holes in walls, threatening himself, I mean 'call the cops' kind of rage, cursing during the rage doesn't curse otherwise, the evil look, OCD in terms of it has to be his way or it can't happen even if it means what time we leave the house, where we park, etc. Very minor tics, knuckle popping, hair rearranging, HUGE sleep disorder, enough to keep him out of school, takes 2-4 hours to fall asleep, can't wake up in the morning, nightmares all night, tics while he sleeps. Severe ADD with last episode enough to start Concerta.

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. Strep tests negative including culture, but after PANDAS began, titer said he DID have strep in that 3 week window of 9/1. No other testing done.Camk number (if done)

Antibiotic use history: Keflex 500 mg bid, switched to Augmentin at the advise of some = symptoms got a little worse, back to Keflex. Azithromycin 500 mg 1 week, then 250 from then on at the advise of Dr. K in Chicago IVIG two day infusion 11 hrs first day 9 hrs secondDoctor and what protocol they suggested: Regular pediatrician said 'find someone that knows more' but was open to anything we offered him, Dr. K in Chicago, recommended IVIG.Other doctors that were helpful and why: St. Louis Children's Hospital ER in 2007 discovered strep wasn't gone when we thought it was, they orginally said PANDAS yet were completely useless in treatment and actually took custody away from us for 72 hours to make sure he was 'safe' so they locked us in a room with a guard WITH A GUN for 72 hours, then released us after one neurologist checked him out and a STUPID psyciatrist.

Steroid trials and detailed experience: Steroids makes him nuts on a good day much less while in PANDAS mode.

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. Did the IVIG, about day 10 noticed improvement, day 11 started Concerta to help get back into school work. Now 11/11 and things are fairly good - hate to commit to that statement but appears okay.

Additional therapies sought: PRAYER PRAYER AND MORE PRAYERSupplements used:

Meds used: keflex, augmentin, keflex again, zithromax, melatonin for sleep, Concerta just as things started getting better helped with the learning disability that kicked in.Any 'other' pertinent info: willing to talk to anyone who needs an ear to bend they can email me at dkriese@sbcglobal.net and I will give them my phone number

hello all,

 

I really want to try to get this member file started, I know it would help us all out when we want to refer to someones history or to find comparisons for our own child. having all our info in one place for reference would greatly help me, so I hope everyone will take time to fill this out. I know I for one, am so interested in each of your stories, so knowing all your background infor would really be helpful and save time.

 

This thread is for a quick reference of each posters "history" and pertint info that we may be interested in, now or later. so feel free to fill in your own box, and edit as you go along. here is a basic outline of info to be entered. its basically a documentation of your child's history regarding PANDAS. discussions concerning anything you want would be on a new thread. this is just for reference.

 

Here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. specific dates would be helpful too.

 

**(this section could be copy and pasted onto your post and then fill out as you go along).

 

Poster name:

Location:

Childs year of birth/present age/gender:

Brief history of symptoms/when they started

Any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc.

Camk number (if done)

Antibiotic use history:

Doctor and what protocol they suggested:

Other doctors that were helpful and why:

Steroid trials and detailed experience:

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too.

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

no discussion on this thread, direct questions elsewhere. Just fill out your own post and any info you have should be there and you can come back and edit any time with updated info. anything you feel you want to share with others.

 

Thanks so much. please feel free to add whatever you like.

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Poster name: SFMom - Wendy

 

Location: Bay Area Suburb

 

Last update: 02-07-2010

 

Childs gender/year of birth/present age: male/2004/5.75

 

Brief history of symptoms/when they started: Sudden onset, TICS - Mild OCD/June 24th, 2009, mild TIC of coughing/clearing of throat 1 year prior, got really sick after exposure to RF in Nov 2007, got better on his own, went untreated.

 

Any previous diagnosis, i.e. autism, asbergers, pdd: NONE perfectly healthy child, never on any antibiotic until July 2008 at 4 1/2

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) TIC/OCD/Anxiety

 

Results of any testing done:

ASO: 244 post illness, 205 as he improved

Dnase: Negative

Strep Antibody Titers: Deficiencies in 10 of 14

IgG Subclasses: Low Normal

Got extremely ill in 2007 after exposure to RF in 2007 but went untreated

Cam Kinase: 124 (11 days post 5 day steroid burst)

 

 

Antibiotic use history: 45 pounds since August 11, 2009

Azithromycin: 250, 375, 500 m.g.

Tonsils Out: NO

 

Doctor and what protocol they suggested:

Dr. Kovacevic: IVIG September 2009, IVIG November 2009, IVIG January 2010.

 

Other doctors that were helpful and why:

Dr. Margo Thienenmann for antibiotic and steroid script, Dr. Fredrick Lloyd Pediatrician, Dr. K

 

Steroid trials and detailed experience: Steroid was effective but wore off approximately 3 weeks after 5 days course. Used as diagnostic tool by Dr. Kovacevic

 

Special section on those persuing IVIG or PEX and what the details were: IVIG September 2009, IVIG November 2009, IVIG January 2010. Doing really well with only mild TIC of occasional cough or rapid eye blinking.

 

Supplements used: High Dose Probiotics, B12, Bentonite Clay, Fish Oil

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  • 2 months later...

Poster name: mati's mom

Location: Northern VA

 

Last update: Mar-1-2010

 

Childs gender/year of birth/present age: male/1997/12

 

Brief history of symptoms/when they started: Started showing OCD Feb/09 after bad case of flu (or so we think?) and possibly strep

 

Any previous diagnosis, i.e. autism, asbergers, pdd: NONE

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) OCD/anxiety

 

Results of any testing done:

 

Jul09 Oct09 Feb10

ASO: 415 371 261

Dnase: 680 480 404

Streptozyme: 200 100

 

Strep: (Stool Test) Alpha Hemolytic Streptococcus - Moderate / Corynebacterium species - Rare

SIgA: 17 (normal between 400-800!)

 

CamKinase: 168

 

Other:

 

Antibiotic use history: (include weight as a guideline - 80 lbs)

Amoxicillin (took for 2 months - no longer taking this)

Cefuroxime 250mg 2xd

Plaquenil 200mg 2xd

Vancomicin 125mg 1/2 capsule every other day

Cipro for 10 days after tonsillectomy

Augmentin 875 2xday (Dec 2009)

Augmentin XR 1000 2xday (Jan 2010)

 

Tonsils Out: YES (Aug09)

 

Doctor and what protocol they suggested:

Dr. Zachrison/Dr. Mian - Antibiotics and lost of supplements to boost immune system/help detox

Tons of testing to see what other things may be contributing.

 

Dr. Latimer: Changed abx to Augmentin, tried steroid burst with great results but we keep having set backs with re-exposure. But overall, much better with just the change in abx.

 

Other doctors that were helpful and why:

We will consult Dr. Barbey-Morrel (infectious disease specialist) to figure out if we have a carrier

 

Steroid trials and detailed experience: 1 month burst w/taper down (40mg/30mg/20mg/10mg). 99% back to normal by the end of it. Quick relapse due to sister getting impetigo (his syptoms started a couple of days before she showed any signs!)

 

Special section on those persuing IVIG or PEX and what the details were:

 

Additional therapies sought:

 

Supplements used:

Colloidal silver

Multigreens

Bio-Inflammatory+

B-complex

Extra b-12

Fish Oils

Digestin

TG-100

Night-Rest

GastroThera

Klaire Labs Complete Powder (probiotics)

 

Other meds used:

Plaquenil for joint pain/swelling

Nystatin for thrush

 

Any 'other' pertinent info:

 

 

Isabel

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Thanks, Faith. I hadn't seen this before; it really will be helpful/useful. Wonder if we could get it pinned?

 

Poster name: MomWithOCDSon (Nancy)

 

Location: Suburban Chicago

 

Childs year of birth/present age/gender: 1997/12/male

 

Brief history of symptoms/when they started: Diagnosed with OCD at 6; first full-on, largely uncontrollable exacerbation at 7; latest fierce exacerbation at 12

 

Any previous diagnosis, i.e. autism, asbergers, pdd: OCD; recently identified as "high functioning autistic spectrum"

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): OCD, minor verbal tics, general anxiety

 

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, immunology results, etc.: asymptomatic for strep, ASO titers = 483

 

Camk number (if done): not yet

 

Antibiotic use history: Augmentin 875 mg. 2x daily for 2 trials of 3 weeks each; within 8-9 days of being off the abx, behaviors returned; most recently on Augmentin XR 1,000 mg. 2x daily for 3+ months and counting

 

Doctor and what protocol they suggested: local pediatrician who has agreed to review material I've gathered for her, "Saving Sammy," etc. and agreed to "Saving Sammy" dosage and protocol, at least for now (uncertain as to whether or not she's consulted with some of the PANDAS specialists with regard to protocol, though I've given her their contact info)

 

Other doctors that were helpful and why: psychiatrist - skeptical but helped order initial titer blood tests and will continue to assist when I press

 

Steroid trials and detailed experience: None

 

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too.

 

Additional therapies sought: Used CBT off and on through September 2009; switched to intensive ERP October 2009

 

Supplements used: NAC, B-complex, probiotics (FloraStor, super-acidolpholus), green foods supplement, Vitamin D3, melatonin

 

Meds used: Augmentin XR, 1,000 mg. 2x daily; 200 mg. Luvox; 2 mg. Intuniv; Ibuprofen as needed

 

Any 'other' pertinent info: DS12 in public school with IEP in place

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Poster Name: kcdc (Kim)

 

Location: Central NC

 

Year of birth/age/gender/weight: 1999/10/Female/78 pounds

 

History: (Very brief) OCD symptoms started within 30 days of a "suspicous" strep throat at age 6. Negative throat culture/negative swab, but still "suspicious" per doctor. Antibiotics given, but told to stop using them due to negative culture. OCD symptoms waxed and waned for 2 years. Major burst of OCD at age 8 - not able to function. Another burst at age 9. Tics after a documented strep infection at age 9.

 

Any previous diagnosis: Possible ADHD - but I think this is a mis-diagnosis.

 

PANDAS symptoms and order of prominence: OCD (continuous), anorexia (continuous, but some days better than others), Tics (have come and went concurrent with abx use, but currently continuous), clothing sensitivites (continuous), urinary issues (continuous), separation anxiety (at height of symptom burst at age 8), Hallucinations during height of exacerbation (age 8 and 9), Difficulty with math, handwriting (varies with exacerbations). emotional lability (only during exacerbations), rages (only during exacerbations), Oppositional (varies), Panic Attacks, Dilated Pupils, "Deer in headlights" look when exacerbation is coming on. At extreme height of symptoms - "Exorcist syndrome" - that is probably the scariest and worst. Thank God we have not seen that in a while.

 

Results of testing: ASO - always low; Dnase - high after positive strep, trends down over several months. Currently at 166 (4 points from "high" according to lab. Only one "documented" positive culture, but I think there have been several others that we did not catch. She cultured positive at the time it was positive with no symptoms. Ferritin levels - consistently low (on Ferrous Sulfate supplements); Currently awaiting results of Lyme, EBV, IGG's, etc.

 

CAM #: 166 out of exacerbation

 

Antibiotic use: Amox. 500 mg BID for 30 days after positive culture in July 09. (Resulted in 100% turnaround within 5 days, but then a regression. - Tics also came on at the time of this strep infection. Zith 250 mg/daily for 30 days (Resulted in another turnaround quickly, but then another regression). Zith 500 mg/daily 20 days - (no additional positive results). Currently on Clindimycin BID 10 days. (Currently no positive results)

 

Doctor's and protocols: Psychiatrist was 1st consulted at age 8. Did not believe in PANDAS, would not pursue. Pediatrician believed in PANDAS, but would only treat with a positive culture. Saw a Neuropsychiatrist, who diagnosed her with PANDAS and a sleep disorder - gave the Zith but he can no longer be reached for treatment. Currently with a pediatric neurologist who is treating with steroid burst, Clindimycin and has ordered additional testing.

 

Steriod trials: Currently doing a 5 day steroid burst - 40 mg / day for 5 days. No results yet. Has one more day to go.

I understand that results can come as long as 3 weeks after 1st dose.

 

Additional therapies/supplements used: Tried SSRI (Zoloft) - made things MUCH MUCH worse. Tried St. John's Wort, Omega Fish Oil, Inositol, various natural remedies - no difference. Currently using Advil therapy - too soon to report any results. Currently on Ferrous Sulfate supp due to low Ferritin.

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Poster name: simplygina

Location: SLC, UT

Born Jan. 2000/ age 10/ male/ 78 lbs.

 

History: Lots of ear infections as a baby. Tubes at 20 months. Started talking like crazy immediately following. Some sensory integration issues as a pre-schooler. Had strep several times a year from Kindergarten on. 1st grade: chewed shirts to shreds. Began a stomach tic. started having contamination issues about how clean his brothers car seat was. 2nd grade: begins bringing his garbage out of his room. begins shaking his head whenever he is around garbage. begins contamination issues about whether or not he has germs on his hands after going to the bathroom. begins asking me about eating feces and urine. Diagnosed with OCD in February. Major sleep disturbances and separation anxiety. We do ERP in regards to the garbage and it helps. By summer he is pretty much symptom free. 3rd grade: one strep infection after another. new therapist because compulsions are back. need for symmetry in everything! finally decide to get his tonsils out . pre operation he comes down with strep again and a sinus infection. takes 10 days of antibiotics, has operation 1 week before Thanksgiving. amazing calm and rational about it. post-op antibiotics. best christmas of our history. he is happy, not anxious, no ocd or tics. begins sleeping in his own room again all night for the first time since Kindergarten. school starts again in january and it all starts up again. therapist recommends ssri. son starts zoloft. by summer he is doing well again. stop therapy for the summer. his zoloft is slowly bumped up to 100 mg. I'm not seeing a difference. summer is pretty good, gets along with with brother. 4th grade: tests into the low math and middle reading classes after previously being in the high clases for both each year. handwriting is atrocious. starts telling me about disturbing violent and sexual thoughts. find a new therapist that recommends inositol. starts vocal tics and several new motor tics. begins twirling between steps. brother tests positive for strep. i realize that there seems to be a correlation. talk to his pediatrician in october about PANDAS. he says he's had one other little girl that they caught immediately, treated and she's been fine. throat culture is negative. we bump up the zoloft to 150 mg. tics worsen and he seems manic. i decide to go back to 100 mg with immediate difference. decide to wean him zoloft entirely because he is gaining weight. begin taking bonnie supplements with some success. notice red dye is a trigger. the inositol starts working wonderfully and disturbing thoughts disappear. no difference in tics or other compulsions. cbt works on the swirling while walking. january 2010 i read Saving Sammy. I sit down and write out his history and realize that there is a definite correlation between symptoms and strep infections. make appt. with pediatrician.

 

Diagnosis: still pending really. on a 10 day course of Augmentin 875 mg. doctor is willing to entertain the idea that it could be PANDAS. He is on his 3rd day and we feel like we are already seeing a difference but I am charting everything just to make sure.

 

Previous diagnosis of OCD and tic disorder.

 

Test results: still waiting

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Poster name: DebC

 

Location: Plano, TX

 

Childs year of birthL 9/2000

Present age: 9

Gender: Female

Weight: I'm guessing 55 to 65 lbs.

 

Brief history of symptoms/when they started: First onset of symptoms was probably when our daughter was 7 and in the first grade. She started obsessively cleaning her room after a case of strep. We didn't link the two and thought it was a great phase as her room was extremely neat. In January of 2009, during 2nd grade and at the age of 8, our daughter had her major exacerbation. She went to bed on a Wednesday evening a perfectly "normal" child on an antibiotic for strep. She woke the next morning consumed with fears of things getting into her eyes, ears, nose, and mouth. Theses fears continued to mount until she was nearly non functional a week later. Her symptoms are OCD based and CBT has helped somewhat during flare ups.

 

Any previous diagnosis, i.e. autism, asbergers, pdd: No previous diagnosis

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): Limited to OCD although I have recently noticed her scrunching her nose and don't know if this is a tic or just a habit.

 

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc.

Camk number (if done): Just positive rapid strep tests

 

Antibiotic use history: On antibiotics nearly continually from age of 6 months to 3 when she finally received ear tubes for recurrent ear infections. She has been on a prophylactic dose of antibiotics during strep outbreaks at school. I have not been able to find anyone to prescribe the higher doses.

 

Doctor and what protocol they suggested: Our pediatrician, Dr. Charles Goebel provided the diagnosis but he does not treat. We saw Dr. Majeed, a children's neurologist to check for tics. We see Dr. Debra Phalen, a child psychologist who works with teaching our daughter CBT. Our ENT, Dr. Roger Skiles has recently been prescribing prophylactic antibiotic after I wrote him and our pediatrician a letter begging for their help in treating/preventing future exacerbations.

 

Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.)

 

Steroid trials and detailed experience: None

 

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. None

 

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info: Our daughter developed shingles after a varicella vaccine when she was in the first grade and her round of strep with first episode of OCD cleaning started shortly thereafter.

 

(anything else anyone would like to add or have info on.)

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Poster name:Melanie

Location:NJ

Childs year of birth/present age/gender and weight:1994/15/Male 140lbs

Brief history of symptoms/Rage and eye tics 11/Cursing 12 1/2

Any previous diagnosis, ASD /Aspergers

PANDAS symptoms; and order of prominence, Rage/cursing OCD

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. Many tests many strep

Camk number (if done)NA

Antibiotic use history:Clindimicin

 

Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful)

Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.)

 

Steroid trials and detailed experience:Yes

 

Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. We are doing monthly iV

 

Additional therapies sought: Tried everything nothing helped

Supplements used:

Meds used:

Any 'other' pertinent info:

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