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Age of Diagnosis & Ability to achieve remission

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Guest pandas16   
Guest pandas16

What age did you begin to see symptoms of PANDAS? How long did it take to you to get the proper treatment? Were you able to see a complete remission in your child?

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1st symptoms -2 years

Correct Diagnosis and treatment begun - 11 years

Not sure what normal is for ds as he has had pandas 90% of childhood. However, since treatment : rages and separation anxiety are almost nonexistent. Tics and OCD continue but no longer control his day. Hand writing slowly improving.

Hope that helps

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Overnight onset of symptoms at age 2.9. Diagnosed with PANDAS at age 7. First remission (lasting 1 year) at age 12-13. Second remission at age 14. Diagnosed with Lyme Disease at 14. Not sure how long she has had LD, but I would guess at least a few years.

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First symptoms -20 months

Sought/started treatment - 26 months

We're currently 3 yrs old (40 months) and achieved 85% remission on abx alone. We've backslid to about 70-75% since taking him off abx last month.

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Hindsight: symptoms started age 3 or 4??

Diagnosed age 7

Just beginning treatment (3 months into abx)--no help. Likely PITAND.

 

Can we also add on here what treatments "worked" if you are in remission? Thanks

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Onset on 5th birthday.Asymptomatic strep infection diagnosed within a few weeks through culture (rapid negative). Put on antibiotics. Achieving remission of symptoms varied...each exacerbation took longer to recover from. Able to maintain remission without antibiotics. 100% better.

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Guest pandas16   
Guest pandas16

Onset on 5th birthday.Asymptomatic strep infection diagnosed within a few weeks through culture (rapid negative). Put on antibiotics. Achieving remission of symptoms varied...each exacerbation took longer to recover from. Able to maintain remission without antibiotics. 100% better.

 

 

Vickie do you know why each exacerbation takes longer to recover from by chance?

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Age onset: 3 or 4

Time it took to get PROPER treatment: 6 years

Remission: spontaneous remission of chorea movements for one year after acute onset; remission of motor tics and vocal tics for four+ years (but behavior stuff, ocd, imulsivity stuck around unrecognized as part of the syndrome) after second episode; remission of severe OCD (coprolalia) and vocal tics for 2+ years after 3rd major episode.

 

Still dealing with chronic trichotillomania, and new OCD stuff emerging. I was very ignorant about the disorder and didn't know that it wasn't ONLY tics. I didn't identify the ocd as such- didn't even know there was such a thing in young children

:(

Edited by Phasmid

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He's had 3 strep triggered exacerbations. There's a couple reasons why the second may have took longer than the first. In the scheme of things it wasn't long after recovering from #1. I don't think his body or brain had enough time to "prepare" for it, if that makes sense. Also, I wonder if getting his kindergarten vaccinations could have made #2 worse. Not only did #2 take longer to recover from, but it was also more severe symptoms.

 

Then forward to #3. That one wasn't as severe as #2, but he did now begin to react to other triggers which would set him back and keep him from making more progress. Also, in exacerbation #3, he experienced residual OCD. Most of the OCD shed on its own as it did in #1 and #2, but not of it went away that time. We did our own ERP under the supervision of a therapist and I didn't consider him in full remission until all the residual OCD was gone.

 

Onset on 5th birthday.Asymptomatic strep infection diagnosed within a few weeks through culture (rapid negative). Put on antibiotics. Achieving remission of symptoms varied...each exacerbation took longer to recover from. Able to maintain remission without antibiotics. 100% better.

 

 

Vickie do you know why each exacerbation takes longer to recover from by chance?

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Hindsight: 1st episode, anger, irritibility, age 4, lasted about a week, then complete remission. Took amoxicillan for ear infection.

 

Hindsight: 2nd episode,anger, irritibility, age 5, lasted a few months after another ear infection, complete remission, took omnicef for 10 days.

 

3rd episode, major exacerbation, anger, irritibility, rage, severe separation anxiety, ocd, age 5.5. No known illness, received FluMist vax. Lasted two months. Remission to about 85% of previous self. Spent a year trying to get proper diagnosis, knowing something was seriously wrong w/ him.

 

4th episode, major exacerbation, anger, irritibility, rage, severe separation anxiety, ocd, tics, age 6, after ear infection, treated w/ omnicef for 10 days. Did not remit until diagnosed PANDAS 8 months later.

 

Total time undiagnosed and untreated nearly 3 yrs. Currently doing well on Augmentin 500mg 2x day.

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Two girls.

J, diagnosed within a month of symptom explosion at age 5.5. Remission after 30 days abx. Relapse within two months with t&A. Full remission with pex, that lasted (mostly) for 14mos. Recent relapse, now at about 85%.

 

C, mild onset at age8.5 with major symptom explosion 9 mos later. Remission from antibiotics an steroids lasted one month. Relapse treated with pex, which gave almost full remission that lasted 9 months. Recent relapse, now at about 85%.

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What age did you begin to see symptoms of PANDAS? How long did it take to you to get the proper treatment? Were you able to see a complete remission in your child?

 

First exacerbation - around 18 months of age after adenoidectomy for chronic sinusitis.

Continued until 7 years of age with continued roller coaster of high dose ABX (no symptoms) / low dose ABX (lots of symptoms).

Age 7 - even high does ABX no longer worked to control neuropsych symptoms. Had tonsillectomy.

Age 7-10 - slow, gradual healing with diet, behavior modification, probiotics, etc. Off antibiotics Achieved about 85% "normal" (I'm not sure what 100% would look like). Still had trouble with handwriting and attention.

Age 10- Sudden OCD following URI (untreated mycoplasma?) Lasted about 6 months.

Age 10-12 - About 75% "normal". Executive function problems (attention / organization) and handwriting problems continued.

Age 12- exacerbation with sinusitis and sinus cyst. Cyst removed age 13. Recover to about 85%.

Age 13 - Recurrent increase in symptoms with allergic rhinitis and sinusitis. Return to about 75% with ABX and prednisone burst.

Currently - awaiting IVIG and hoping for longer- lasting breaks between exacerbations. Really hoping for more healing and ability to focus and complete work in school and have legible handwriting, but I am afraid to admit that to anyone but you guys.

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Hindsight: Probably began around age 2 with chronic ear infections; severe separation anxiety, fears, etc.

 

Age 6: Officially diagnosed with OCD due to excessive hand-washing; managed and nearly full recover of OCD behaviors with CBT and time

 

Age 7: First major wax/exacerbation, still diagnosed as OCD; "forgot" how to read, writing grew illegible, major OCD; back to CBT and added SSRI, plus time; nearly "full" recovery (subclinical OCD) for next five years

 

Age 12: Lost his mind in major exacerbation; various SSRI trials and extensive ERP therapy, no help; found PANDAS and convinced doctors to try abx. Augmentin XR at 1,000 mg., twice daily

 

Age 13: About 75%; back in school, OCD manageable, social again, handwriting legible, making honor roll, etc.

 

One month away from Age 14: Continues at about 90%; some OCD still lingering (scrupulosity, perfectionism), as well as separation anxiety; ERP ongoing, and low-dose SSRI (Zoloft), in addition to Augmentin XR. Had reduced abx dosage for several months during the summer, but cranked back up again in November due to strep exposure at school. Remains on full dose XR as of today, though hoping to reduce again in the next week or so.

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What age did you begin to see symptoms of PANDAS? How long did it take to you to get the proper treatment? Were you able to see a complete remission in your child?

 

First noticeable episode: 6rs old (I believe some "fussiness" around 3 - 3 1/2 yrs old in the past could have been PANDAS)

 

It took us about 2 months before she was on prophlaxis antibiotics and a monthly prednisone taper. During those 2 months she kept testing positive for strep, so she did take 5 different antibiotics.

 

Yes, she has been able to achieve complete remission twice so far, and is currently still there.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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      • A -
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      • AB -
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