For those that have followed our story...

[sf_mom]

Brief overview: Playdate in 2007. Adrian had RF and P.J. had an active strep infection when we all got together for a playdate. Adrian and P.J. most likely shared the same strain of strep because parents are dating and they had spent the previous night together before meeting up us. One week later my older son got very ill for 5 days but seemed to recover on his own. One week after that our younger son (6 months old at the time) became extremely ill, hospitalized for 6 days, diagnosed and treated for Kawasaki's hdIVIG 2 m.g./kilogram over two days. He was not checked for RF. My older son's symptoms were identical to my younger son's BUT EVERYONE AT THE HOSPITAL told me Kawasaki's wasn't contagious. 6 months later older son had first tic, one year after that full blown PANDAs and sudden on-set.

 

DS1 - 6 years old: CaM Kinase 127 (blood drawn 11 days post steroid burst) is 98% recovered after 3 hdIVIG treatments with Dr. Kovacevic,

 

DS2 - 3 years old: CaM Kinase 148, improving TREMENDOUSLY on antibiotics - Azithromycin 200 m.g. per day

 

DD - 3 years old: CaM Kinase 157, improving on antibiotics - Azithromycin 200 m.g per day.

 

Adrian - 6 years old: CaM Kinase 147, improving, 1 week post 3 hdIVIG treatment with Dr. Kovacevic. Adrian had Asperger 'like' traits and was by far the sickest through out his young life.

 

PJ - 7 years old: CaM Kinase 126 - Anti-DNase-B high 300s, NOT CURRENTLY BEING TREATED. Clinical symptoms AD/HD, restlessness, inability to sleep well, separation anxiety, transient eye tic, periodic suicidal thoughts, extreme acrophobia. WITHIN THE LAST THREE WEEKS: PJ has taken on a regular breathing/sneezing TIC per his father (I have not personally seen him yet).

 

Anyway, my children are not full biologically related.... I find it highly unlikely that all five children would have a predisposition for PANDAS. We live over an hour away from Adrian and P.J. and the kids play with each other very infrequently (once a year... maybe).

 

-Wendy

Edited June 4, 2010 by SF Mom

[Kayanne]

Thank you so much for the update! I'm really overjoyed for the successes that you have had, and pray that ALL of your children will be 100% soon!

 

Thank you so much for your invaluable contribution to this site, and for the general PANDAS cause

[Mary M]

What a story...terrifying really...hoping for the best outcomes for all of you. I can't imagine living with this with more than one child exacerbating at a time...one is all encompassing.

[Kay]

Can I ask on your son and daughter that are improving on the antibiotic has it only been the antibiotic that has been used and the same dose and how long has it been?

 

I ask because we have only used antibiotic so far and have had some good results.

Thanks.

Kay

 

Brief overview: Playdate in 2007. Adrian had RF and P.J. had an active strep infection when we all got together for a playdate. Adrian and P.J. most likely shared the same strain of strep because parents are dating and the had spent the previous night together before meeting up us. One week later my older son got very ill for 5 days but seemed to recover on his own. One week after that our younger son (6 month old at the time) became extremely ill, hospitalized for 6 days, diagnosed and treated for Kawasaki's hdIVIG 2 m.g./kilogram over two days. He was not checked for RF. My older son's symptoms were identical to my younger son's BUT EVERYONE AT THE HOSPITAL told me Kawasaki's wasn't contagious. 6 months later older son had first tic, one year after that full blown PANDAs and sudden on-set.

 

DS1 - 6 years old: CaM Kinase 127 (blood drawn 11 days post steroid burst) is 98% recovered after 3 hdIVIG treatments with Dr. Kovacevic,

 

DS2 - 3 years old: CaM Kinase 148, improving TREMENDOUSLY on antibiotics - Azithromycin 200 m.g. per day

 

DD - 3 years old: CaM Kinase 157, improving on antibiotics - Azithromycin 200 m.g per day.

 

Adrian - 6 years old: CaM Kinase 147, improving, 1 week post 3 hdIVIG treatment with Dr. Kovacevic. Adrian had Asperger 'like' traits and was by far the sickest through out his young life.

 

PJ - 7 years old: CaM Kinase 126 - Anti-DNase-B high 300s, NOT CURRENTLY BEING TREATED. Clinical symptoms AD/HD, restlessness, inability to sleep well, separation anxiety, transient eye tic, periodic suicidal thoughts, extreme acrophobia. WITHIN THE LAST THREE WEEKS: PJ has taken on a regular breathing/sneezing TIC per his father (I have not personally seen him yet).

 

Anyway, my children are not full biologically related.... I find it highly unlikely that all five children would have a predisposition for PANDAS. We live over an hour away from Adrian and P.J. and the kids play with each other very infrequently (once a year... maybe).

 

-Wendy

[Debbie1]

Hi Wendy,

 

So glad to hear your children are doing well. My son and daughter are six weeks and three weeks post IVIG#1, respectively. (I'll have to post an update on them seperately). I was wondering about the timing/spacing of your IVIGs (ie did you repeat at 2 months, three months or some other interval)? Can I ask what you were seeing that convinced you to do IVIG#2 and #3 - was your son better and then relapsed or was he partially better and you repeated to try to get to 100%?

 

Thanks,

Debbie

Edited June 4, 2010 by Debbie1

[Fixit]

Thanks as always SF

 

1)i too wanted to ask about kids just on abx....when you say improving...50% better 80%.....

 

2)have you not done ivig for them because of age or because of continued improvement with abx??

how long have they been on abx???

when ds would get strep...and then tic...once we started abx i could see a change in 24 hours...then by the end of abx 10-14 days, 50% or more recoverd...by end of 4-5th week....complete remission.....we have done this at least 8 times with positive swab and another 4-6 times with abx and no positve swab...

i don't know if i could wait 6 months on abx with out 100% because i was so spoiled i guess....

maybe i could if you are 90% and just trying to get that last bit???

 

3) not trying to pry...or a maybe you don't know...or they are waiting for what ever reason.....why isn't PJ being treated...or maybe just between what type of therapy to do next...

[sf_mom]

Thanks everyone... It been a rough 10 months and I was sicken by the news of PJ's most recent TIC in the last couple of days and just needed to share my exhaustion/frustration/fear.

 

One twin has been on antibiotics since November 2009 and the other twin since January 2010. They both take the following supplements daily.

 

* 1.3 trillion units probiotics multi strain

* 4 o.z. of Bentonite Clay

* 4 o.z. of Kefir (mixed with bentonite and juice)

* 25,000 m.g. B-12

* 1 homeopathic anti-viral

* 1000 m.g. fish oil

 

Just today we retested the following on our little girl: CBC, Iggs, Circulating Immune Complexes, ASO, Anti-DNase-b and we'll be retesting CaM Kinase on all our children in August. Our DD labs were terrible.... total Iggs in 300s and I'm actually looking forward to seeing what I suspect to be improved results.

[norcalmom]

Wendy,

Thank you for sharing. I will have to dig back through your posts to look at symptoms and the full story...it sounds like the past 3 years must have been ###### for you. Also sounds like your situation may give researchers some clues about what is causing this.

 

How do you feel about the "sudden onset" criteria for diagnosis? You said that one son had tics 6 months, and then 6 months later "sudden onset"...I would think that having a tic for 6 months would mean it wasn't "sudden onset" ..he had a symptom for 6 months...and then added OCD/sep anxiety/other symptoms on top it?

 

Seems the other kids didn't have sudden onset?

 

My son did not have overnight onset..I would say I noticed symptoms over a period of several weeks (I think sudden onset also has bit of subjectivity to it - since some parents are less observant and some may be more flexible in their views on what "normal" childhood behavior and "phases" are.)

[sf_mom]

Older son is 98% recovered and 130% in areas we didn't realize was PANDAS. He has one remaining TIC of rubbing his nose/blowing that comes in a flair.... in has changed drastically in intensity, frequency, timing (its fading away).

 

Twins: Are 85% to 90% better. Both have a sandpaper rash on checks, DD still has Livedo Reticularis but it has faded and mostly on extremities, DS still has some residual unfounded fears (we have not had a single RAGE since our older soon was exposed to strep in early Feb).

 

We hope/pray we will avoid IVIG for the twins. P.J.'s father is a single parent and was not overly concerned until most recent TIC started. He just thought P.J would outgrow current symptoms. PJ also wasn't as bad as Adrian was in terms of presentation so maybe he has always been making the comparative.

 

 

-Wendy

Edited June 4, 2010 by SF Mom

[sf_mom]

Our sudden on-set could have been the coughing TIC but we missed it. IT WAS HARD NOT TO MISS his next episode: Multiple TICs (head rocking, ear flicking, rapid eye blinking, arm winging, etc), Handwashing, Hair Pulling, Separation Anxiety, Nightmares, Contamination Fears, ETC. I'm missing a lot of his symptoms at the time.

 

I do believe there was a lot of low level stuff for 1 1/2 years prior. Playdate November 2007, 'recognized' sudden on-set June 24th, 2009

 

Dr. K seems to think KAWASAKI's 'might' be the most immediate and extreme presentation of PANDAS but typically halted with hdIVIG first 10 days of on-set.

Edited June 4, 2010 by SF Mom

[deby]

Thank you for sharing you story, I am happy that your kids are doing better after such a nightmare. I wish a fast recovery for your kids, and that PANDAS will be behind you.

Thank you for all your help, 2 weeks ago I was hopeless,heartbroken. I am still very worried about my son, but now, thanks to you, I have hope and a path to follow.

Lets hope I am in the right way!

[Kay]

Thank you Wendy for the additional information, the supplement information as well. I am glad your children are doing better. We have been hoping too that the antibiotics will hold out for us too.

Kay

 

 

Thanks everyone... It been a rough 10 months and I was sicken by the news of PJ's most recent TIC in the last couple of days and just needed to share my exhaustion/frustration/fear.

 

One twin has been on antibiotics since November 2009 and the other twin since January 2010. They both take the following supplements daily.

 

* 1.3 trillion units probiotics multi strain

* 4 o.z. of Bentonite Clay

* 4 o.z. of Kefir (mixed with bentonite and juice)

* 25,000 m.g. B-12

* 1 homeopathic anti-viral

* 1000 m.g. fish oil

 

Just today we retested the following on our little girl: CBC, Iggs, Circulating Immune Complexes, ASO, Anti-DNase-b and we'll be retesting CaM Kinase on all our children in August. Our DD labs were terrible.... total Iggs in 300s and I'm actually looking forward to seeing what I suspect to be improved results.

[Fixit]

Ditto...from me too

 

Thank you for sharing you story, I am happy that your kids are doing better after such a nightmare. I wish a fast recovery for your kids, and that PANDAS will be behind you.

Thank you for all your help, 2 weeks ago I was hopeless,heartbroken. I am still very worried about my son, but now, thanks to you, I have hope and a path to follow.

Lets hope I am in the right way!

[MomWithOCDSon]

Congratulations on all the success, Wendy! Terrific news for your family!

 

And I want to add my thanks to you for all the contributions to the forum! Where else would I have learned about the value of bentonite clay and high-dose probiotics! Many thanks!

 

It seems, when it comes to doing good and receiving good, what goes around comes around!

[sf_mom]

A deep breath, a few tears and gratitude for the kinds words...... There is hope.