Question

[browneyesmom]

Question:

 

1. Is your child taking long term daily abx for PANDAS and if so,

2. which abx and what dose and

3. what is your child's age, weight and

4. number of severe PANDAS exacerbations - AND,

5. current status of remission at this point?

 

Thanks!

[KaraM]

Do you only want pandas (strep as cause) or pitand (including Lyme etc) responses as well? Would you also want to know what other infection are involved?

Thanks,

Kara

[MomWithOCDSon]

Question:

 

1. Is your child taking long term daily abx for PANDAS and if so,

2. which abx and what dose and

3. what is your child's age, weight and

4. number of severe PANDAS exacerbations - AND,

5. current status of remission at this point?

 

Thanks!

 

1. He did, though we have recently stopped. He took it for 2 years and 2 months.

2. Augmentin XR, 2,000 mg. daily

3. Began at age 12, 125 lbs.; ended at age 14, 140 lbs.

4. Three, counting the last one that brought us to the PANDAS world

5. We began weaning the antibiotics slowly in October 2011. He's been entirely off of them since early December 2011. He's good.

[blakes_mom]

Yes we are currently on antiobiotic since Sept 2011,PENICILLIN VK 500 mg 3 times per day.He is 10 years old and weighs about 65 lbs. This is his third episode of PANDAS. He is doing well right now but when I tried to taper his antibiotics last week his symptoms came back, so we will be on long term and then try to get preventative antibiotics for strep.

[browneyesmom]

Do you only want pandas (strep as cause) or pitand (including Lyme etc) responses as well? Would you also want to know what other infection are involved?

Thanks,

Kara

 

Good question, Kara. Strep is our battle, so I was really more interested in looking at that; however, I do want to know if docs are tending toward abx for this overall condition (PITAND/PANS).

 

Thanks for the input, everyone! We have a doc appt this week and I want to be well prepared. I'm also pulling research on this topic.

[KaraM]

Question:

 

1. Is your child taking long term daily abx for PANDAS and if so,

 

She was taking Zithromax daily for 10 months for PANDAS, then we discovered Lyme Bartonella and have been continuing daily abx the past 10 months (so 20 months total of daily abx)

 

 

2. which abx and what dose and

 

She is currently taking 200 mg of Zithromax 2x/day and 200 mg Bactrim 2xday for the Lyme and Bartonella. She also takes Tindamax on the weekends.

 

3. what is your child's age, weight and

 

She is 9, around 75 lbs.

 

4. number of severe PANDAS exacerbations - AND,

 

Two major exacerbations starting at age 7...not sure how many minor prior to that... maybe 3 or4...

 

5. current status of remission at this point?

 

I'd say she's functioning on average between 90 and 95%.

 

 

 

Thanks!

[PowPow]

For our clear PANDAS (strep) child-

 

1 & 2. she is on 250 mg Zithro daily and has been for over a year, easily.

She also did a month of clindamycin followed by 2 weeks of rifampin (though admittedly, she was not very compliant- clinda was TID and that is difficult to maintain!)

 

3. she is almost 13 and weighs about 120lbs

 

4. she had 2 MAJOR (with capital letters!) strep-associated exacerbations- smaller exacerbations not related to anything

 

5. I hate to say it (cross your fingers) she is about 90% or more better- this is one year post pex and 8 months post IVIG- it has been sawtooth, but we are at a really good place and have been for about 4 months or more.

 

How is your girl? Hope things are OK!

[dcmom]

This is for two pandas girls:

 

1. Both took daily zithromax for two years. Both never seemed antibiotic- dependent as far as keeping pandas away. When they got strep on zith and augmentin (at same time)- I totally changed my frame of mind. The were off ALL meds in the summer, and now both take zith twice per week, however I do plan to take them off completely this spring.

 

2. Both take the same, zith 500mg/ 2x per week.

 

3. One weighs 45 lbs age 8, the other 82 lbs age 11.

 

4. I would say they have had 3 severe-ish pandas episodes- they were diagnosed 3 years ago.

 

5. At this point their status is excellent. I would say they are 95% plus. The youngest seems to have started a slip last week, but am hoping to head it off with steroids if needed. Things have been relatively stable since August for both.

[P_Mom]

Two clear strep induced PANDAS boys:

 

Both on long term proph. antibiotics for PANDAS. (they are not antibiotic dependent at this point)

 

Both take Augmentin 250 mg a day. (very low dose and will see what PANDAS doc has to say about it at their annual next month....I am not sure it is even doing a thing considering their height and weight)

 

Younger PANDAS son is 8 and 85 pounds....older PANDAS son just turned 12 and is 127 pounds. (DCMom your girls are tiny! )

 

One severe episode for younger son and 2 moderate episodes for older son. Both presented very differently from the same strep weeks apart. They both had several mini episodes over the years.

 

Older son in complete remission and younger son symptom free most of the time but does show mild symptoms occasionally.

[bigmighty]

Question:

 

1. Is your child taking long term daily abx for PANDAS and if so,

2. which abx and what dose and

3. what is your child's age, weight and

4. number of severe PANDAS exacerbations - AND,

5. current status of remission at this point?

 

Thanks!

 

1/2. Yes - Augmentin 875 twice daily (has been on one antibiotic or more for the past 13 months)

3. 13 yrs old - 88 pounds

4. two - Dec 2010 & July 2011

5. In holding pattern at 60-70% functional, but only if ibuprofen taken 3x daily

 

 

Had IVIG in May & June 2011 and was 90+% well, then got strep in July 2011 while on azithro.

Edited January 23, 2012 by bigmighty

[oivay]

1&2. not daily, but 2x/week zithromax, 250 "at least until high school is over"

3.age & weight 12, about 100 pounds

4. about 5 severe debilitating exacerbations over about a year

5. no symptoms since plasmapharesis in March 2011

(couldn't use penicillin or augmentin due to allergy)

[BoyIowa]

Question:

 

1. Is your child taking long term daily abx for PANDAS: yes Also found Lyme and recently MycoP

2. which abx and what dose: Augmentin XR, 2000 and zith 250 (previously tried amoxicillin and augmentin, but switched to XR recently)

3. what is your child's age, weight: 8, 64#

4. number of severe PANDAS exacerbations: I don't know how to quantify. Nothing extremely severe like others I have heard, but exacerbation when tooth came out and strep in sibling and walking pneumonia in sibling and anything that looks like a cold in house. Been on an up and down roller coaster for 2 years; just when we think we might see a light, we hit another tunnel.

5. current status of remission at this point? On abx for 6 months and still on roller coaster. May have a carrier in home.

[boychildsmom]

Question:

 

1. Is your child taking long term daily abx for PANDAS and if so,

Yes. Initial dx PANDAS/SC. Subsequently switched dx to "strep" (resistant, systemic strep--not strep throat).

 

2. which abx and what dose and

Initial treatment (time of dx): one month clindamycin & rifampin

Prophylaxis: 250mg azith daily (currently weaning)

 

3. what is your child's age, weight and

Age 15 (dx'd age 5)

Approx 175-180 lbs...haven't checked lately

 

4. number of severe PANDAS exacerbations - AND,

First exacerbation very severe, didn't help that it took a year to get dx and treatment started.

Subsequent exacerbations treated quickly (10-day clindamycin & rifampin) so never exceeded mild.

In last two years, one mild strep break through requiring 10-day clindamcyin & rifampin.

 

5. current status of remission at this point?

Asymptomatic. No evidence he ever had severe tics or OCD.

Now he recognizes earliest symptoms of exacerbation (for him, OCD). Caught at that stage, he only needs a few days double dose azith (500mg) to knock it out.

(he is older than most on board; we did it for him as little boy; he does it better!)

[nicklemama]

1. Is your child taking long term daily abx for PANDAS and if so,

2. which abx and what dose and

3. what is your child's age, weight and

4. number of severe PANDAS exacerbations - AND,

5. current status of remission at this point?

 

 

 

DS has been on daily abx for 14 months. He has been on a prophylactic dose since June, after IVIG.

 

He has taken biaxin, augmentin and azith. Don't remember the biaxin dosage but his augmentin dosage was 500mg bid and his azith dosage was 250mg sid. Currently, his prophylactic dose of augmentin ins 250mg sid.

 

He is currently age 8 and weighs 60lbs.

 

He has had two severe exacerbations (before starting abx and having IVIG)

 

He is 8 months post IVIG and doing well, maybe at 90%. He's had 3 colds since Nov and several strep exposures which required us to give him treatment dose augmentin (500mg bid). He seems to recover each time but it takes a while.

Edited January 26, 2012 by nicklemama

[Kayanne]

1. Is your child taking long term daily abx for PANDAS and if so, -- yes

 

2. which abx and what dose and -- Omnicef 150mg once a day (half dose for prophylaxis)

 

3. what is your child's age, weight and -- almost 9, weighs about 55lbs

 

4. number of severe PANDAS exacerbations - AND, -- 2 episodes (March thru July 2009 & Feb/Mar 2010)

 

5. current status of remission at this point? -- full remission w/occasional sub-clinical OCD and I suspect very mild tics sometimes...but nothing that is readily noticeable