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Member Profile of PANDAS kids


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Poster name: LaraM

Location: Melbourne, FL

Childs year of birth/present age/gender and weight: 2005, 5 years old, Male, 44 lbs.

Brief history of symptoms/when they started Symptoms started late Nov. 09 or early Dec. 09. He started with extreme anxiety and crying jags lasting 2 hours, wanting to go to Heaven and obsessed with talk of death, then OCD started with obsessive handwashing, nightmares, separation fears, wouldn't be alone in a room, ADHD behaviors. Now it's a lot of permission asking type behavior (can be pretty severe at times--10+ times per minute) and flat affect at times.

Any previous diagnosis, i.e. autism, asbergers, pdd- None...he was a happy go lucky, well adjusted child prior to this

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): Currently OCD...no tics

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc.: Two throat cultures, both negative, titers within normal range (don't know numbers though)

Camk number (if done)

Antibiotic use history: 16 days of Omnicef in Dec. 09 by local pediatrician

 

Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful) We start seeing Dr. Tanya Murphy next week (whew!) as part of a Cedfinir vs. Placebo clinical trial. She is located in St. Petersburg, FL (2 1/2 hour drive one way, but I think it'll definitely be worth it) I don't know how they'll proceed, but I am hopeful now!

 

Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.) Our local pediatrician was the one that first suggested PANDAS and even prescribed antibiotics before his blood work came back. Once we received a "within normal range" reading on titer levels, he wasn't willing to commit to the PANDAS diagnosis. He had only seen two other kids with PANDAS (both with severe tics) and they both tested positive for strep, so his experience led him to the conclusion that something else was going on other than strep. We sought Dr. Tanya Murphy on our own (after seeing her name on these posts--thank you, thank you). She felt our son was a strong candidate for PANDAS and invited him to participate in the clinical trial. We were suppose to go last week, but my son had a bad case of croup that caused us to cancel and have to reschedule for Feb. 18th.

 

Steroid trials and detailed experience: None--we're pretty new at this

 

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: EEG performed...normal. We're moderately restricting his diet (no milk, wheat, artifically colored foods, no refined sugars). It helped with ADHD symptoms, but not OCD or anxiety.

 

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

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Poster name: Heather

 

Location: Denver, Colorado

 

Childs year of birth/present age/gender and weight: 2003 / 6 / Male 43lbs

 

Brief history of symptoms/when they started: First noticable symptom was rapid onset eye blink tick at age 4 1/2

 

Any previous diagnosis, i.e. autism, asbergers, pdd: Previous diagnosis of Pancreatic Insufficiency, Celiac disease, Cyclical Vomiting Syndrome, Frequent Sinus infections, mild food allergies

 

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) Tics both motor and vocal , Anxiety - Separation Anxiety, Unwillingness to leave the house, OCD - Mild to moderate includes counting, schedule preoccupation bathroom rituals, Rage - moderate but quick to flare and tantrums over things not tantrum worthy, Urinary frequency with one episode

 

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

ASO - 11

DNASE-B AB <60

IGA - 34 range (33-235)

IGG - 615 range (592-1723)

IGM - 72 range (36-314

 

IGG1 349 range (288-918)

IGG2 160 range (44-375)

IGG3 71 range (16-85

IGG4 1.9 Range (0.4-98)

IGG serum 604 (Range 592-1723)

 

Only swabbed for strep during last 3 epsiodes - First was negative but mom was positive for strep, Second episode culture grew out Strep B, Third rapid was positive for strep

 

Camk number (if done) - Not yet done

 

Antibiotic use history: - Has responded very well to Azithromycin in the past. Not on continous antibiotics due to allergies and Drr's unwillingness

 

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.)

 

Pediatrician is still on fence, has seen a neurologist in past for CVS and tics, has seen a neuropsychiatrist as well to rule out other conditions.

 

 

Steroid trials and detailed experience: Not tried yet

 

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

 

Additional therapies sought:

Supplements used: B50 Complex, Chewable Multi vitamin w/ Iron 3x daily

Meds used: Ultrase Mt 20 (for Pancreatic Insufficiency), Lcarnitine and CoQ10 (For Cyclical Vomiting), Zyrtec, Nasonex and Nasal Washes for Sinus issues. Advil also really helps the tics and behaviors

Any 'other' pertinent info:

 

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

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Greekmomof2

Maryland

2003, Age 6, Male and weighs 50 lbs

Brief history: Started in August 2009 with Urinarary Frequency Syndrome. After he began Kindergarten about 2 months later started exhibiting "Confessions" OCD. He tattled on himself about everything he thought or did that was bad. I started my own cognitive therapy with him and it made it milder but it was still horrible. In beginning of november he broke out in hives which was Scarlet Fever from Strep. At this point my doctor gave me information on PANDAS. He went on Amoxicillan for 10 days. He was completely better after 3 days on antibiotics. After the cycle was done, about 4 days after he was done he started the OCD again. We took him and got tested again and he was positive for strep again. Another Keflex was prescribed and he was better again within 3 days. We did a follow up at the 11 day mark and he was still positive. So we concluded he was a carrier. A 21 day cycle of med were prescribed and he was negative for strep. That was about a month and 2 weeks ago. He recently started doing "confessions" again and the urinary frequency has started mildly.

 

No other Diagnosis.

PANDAS symptoms; and order of prominence,: OCD "Confessions" Urinary Frequency Syndrome

Results of any testing done: i.e. Aso & dnase, strep results : So new to it all. We have had 3 positive strep cultures and one negative (not sure about the culture).

 

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: Pediatric Group. Dr. Nuygen. He is the pediatrician that brought it to my attention. I am currently looking into getting an appt with a PANDA specialist.

 

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: N/A

Supplements used: I am going to try Ibuprofren

Meds used: N/A

Any 'other' pertinent info:

 

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

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Poster name: Kerry

Location: West Chester, PA

Childs year of birth/present age/gender and weight: 1999/10/F/60 lbs

Brief history of symptoms/when they started 1/09

Any previous diagnosis, i.e. autism, asbergers, pdd None

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

Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. ASO 248 dnase greater than 1360, strep negative after onset. ASO and dnase taken 1/10

Camk number (if done) Awaiting kit

Antibiotic use history: RSV, double ear infection, double pneumonia at 4 months, recurrent ear infections through first 3 years including use of prednisone and albuterol for recurrent bronchitis. Bronchitis induced asthma about 1 time a year

 

Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful) Dr. Trifiletti pediatric neurologist steroid burst and zpak.

Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.) None yet

 

Steroid trials and detailed experience: Steroid burst stopped on 3rd day (dose pack) Helped OCD thoughts but bad for anxiety/anger/jittery

 

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

 

Additional therapies sought:

Supplements used: Omega 3's and Culturelle

Meds used: 75 mg Zoloft (sertraline)

Any 'other' pertinent info: Varicella vaccine 12/1/08

 

(anything else anyone would like to add or have info on.) Prior history of allergies and sensory issues

 

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.

 

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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