What do we/our PANDAS kids have in common?

[laurenjohnsonsmom]

Ok, so I hope these aren't to personal questions to ask but almost all the PANDAS doctors/specialists we have been working with have mentioned a pre-disposed/genetic link, possible to PANDAS. (i.e.: family history of tics/ocd, etc..)

 

A lot of parents have also told me that there child's sudden onset/manifestation was during or soon following what they thought was a cold/virus/flu, etc.. Finally, what do you do (did) for a living? I also can't count how many parents have to me that they have some sort of engineering background.

 

Since you can only ask 3 questions per poll, I will ask the others via a seperate poll. Please, add comments or elaborate in your response if possible.

[sf_mom]

Just wanted to clarify our history.

 

- First TIC of a cough occurred 6 months exposure to RF and getting sick, 3 weeks post vaccinations and what appeared to another strep related illness. The first TIC was missed as a TIC and I was told it was Psychosomatic. We tried two short rounds of antibiotics to abate cough

 

- What appeared to be sudden on-set was one year later, again 3 weeks following vaccinations and strep throat (sore throat, high fever for 4 days). He was rocking and rolling within a week of fever with all kinds of TICS and only mild OCD.

 

For us, I think its was a series of events that finally caused his immune system to start losing the battle.

 

-Wendy

[Kayanne]

1. I answered sudden because it was within a two week window. Her teacher distinctly thinks the change occured after she returned from Easter break (April14). We were seeing the changes happen at home....inability to make decisions and emotional lability.

 

2. Yes. She was being treated for a strep throat. She tested positive with a rapid strep test on March 11th, and three more times thru May.

 

3. Yes. I have four children...my PANDAS daughter's (6yrs old) antiboitics were not prescribed properly in the beginning. That is why I think she was hit the hardest.

 

Two were also on anitbiotics three times each, and I have seen signs of mild PANDAS in my 9yr (stomach aches, mild emotional lability, mild anxiety), and in my 5 yr old (refusing to write when before he was interested in it, eating problems, bed wetting, cognitive inflexibility--more importantly theses problems "resolved themselves").

 

My baby never tested positive for strep, but was put on 5 days of Omnicef, when his throat looked red--the dr didn't do the rapid at that time because he assumed it was strep because the other kids had it....after that he always tested negative--rapids and cultures. He is a very particular child..his personality is a lot like my PANDAS dd...so I am watching closely.

[harmony]

Ok, so I hope these aren't to personal questions to ask but almost all the PANDAS doctors/specialists we have been working with have mentioned a pre-disposed/genetic link, possible to PANDAS. (i.e.: family history of tics/ocd, etc..)

 

A lot of parents have also told me that there child's sudden onset/manifestation was during or soon following what they thought was a cold/virus/flu, etc.. Finally, what do you do (did) for a living? I also can't count how many parents have to me that they have some sort of engineering background.

 

Since you can only ask 3 questions per poll, I will ask the others via a seperate poll. Please, add comments or elaborate in your response if possible.

Wasnt sure what to put for #2- it was a strep infection. (2 days after positive strep test). I put "no" because It was strep- not virus or cold.

Hope I did this right......

[smartyjones]

Kayanne - what year easter break was that? you're near philly, right?

[Kayanne]

Kayanne - what year easter break was that? you're near philly, right?

2009

 

Yes, I live ouside of Reading, PA....An hour and half from Philly....I'm a Philly girl myself.

 

~Karen

[P_Mom]

Same as Harmony...I was confused on #2...I put no because it was not a cold or virus....it was documented strep.

[laurenjohnsonsmom]

p.Mom

 

I think it would be safe to say that the majority of the manifestations started with diagnosed strep or a cold/virus, that could have been strep (undiagnosed)..

 

Did you notice question #3 is tied, even! CRAZY! There are just as many families out there that have more than 1 PANDAS child than the families that have just one!

 

This is fascinating to me!

 

 

 

Same as Harmony...I was confused on #2...I put no because it was not a cold or virus....it was documented strep.

[thereishope]

You wonder how many families have more than one PANDAS child but will never know. Once you have one, you become more paranoid and hopefully that will lead to catching things like strep very early on and PANDAS will not have a chance to ever surface for the others.

 

I say for my other 2 kids that to my knowledge they do not have PANDAS. The first and second time my PANDAS son had strep, neither of the other 2 did. When my PANDAS son had it the third time, both the other kids tested +. I probably caught it very fast because of my son's PANDAS symptoms. I took them all for test the day after an evening meltdown. Thus another reason why it's so important to test all family members. You don't want to chnage undetected strep lingering in their bodies.

 

I do wonder how long it takes from contracting strep to having PANDAS symptoms come on. Meaning how long does it take for the inflammation to occur to the point of causing behaviorial changes. I ask because my kids do not get strep symptoms so my PANDAS son behaviors it what prompts us for a strep test.

[P_Mom]

Laurens Mom,

 

I have two boys with PANDAS........I believe there is no doubt a genetic link to this.

 

I do think the number 2 question will have thrown people off. Some kids have onset after a virus, vaccinations, flu, etc.

Some kids have onset after strep..... those are different onsets and the Strep has been called PANDAS (of course) and the other onset (due to viruses,etc.) has been referred to as PITANDS. My answer to #2 would still be no....... because it started with strep, which was not included in your question. Anyway...just my thoughts because I am not sure if you were looking for strep onsets or viral onsets.

 

Hope all goes well.

[laurenjohnsonsmom]

I know, Uuugh! I meant to put strep infection in the question but was thinking just "illness" to be broad, as many of us know now, that our children did have strep just prior to onset but it wasn't diagnosed immediatley so we thought it was a cold or other virus, etc...

 

Laurens Mom,

 

I have two boys with PANDAS........I believe there is no doubt a genetic link to this.

 

I do think the number 2 question will have thrown people off. Some kids have onset after a virus, vaccinations, flu, etc.

Some kids have onset after strep..... those are different onsets and the Strep has been called PANDAS (of course) and the other onset (due to viruses,etc.) has been referred to as PITANDS. My answer to #2 would still be no....... because it started with strep, which was not included in your question. Anyway...just my thoughts because I am not sure if you were looking for strep onsets or viral onsets.

 

Hope all goes well.

[TessaKrista]

Number three needs to be modified. It asks about other chidren with pandaas, and then offers the response as 0-1 child. I have one child, not another one with pandas. Perhaps it could be worded differently, or have another option. Perhaps I misunderstood.

[AmySLP]

Im response to #2-My daughter had a rash that after being treated with various topicals without any change, was eventually cultured and found to be strep. So I said yes, hope that was right.

 

About siblings-My husband & I have jokingly said maybe she has PANDAS too regarding my 3 y/o daughter when her behaviors have been really extreme. She has had sensory problems for which she received OT, but these have heightened again since her d/c and is extremely clingy. She has an extreme temper which escalates so quickly. I always thought it was just her personality. She had never had a positive strep until this past MArch with an area of Impetigo which was found to be strep when cultured eventually when nothing else worked to get rid of it (so similar to the story of my 5 y/o daughter). Dr. B thought strongly about testing her with the full work-up of lab work and I dragged my feet just getting it drawn last week. He created a chart for her and part of our re-visit appt with him next week will focus on her. I can't stop praying that it's just personality, as I can't imagine battling PANDAS with a second child.

[tantrums]

Hi PA folks Lehigh Valley here...

 

I also do consider ours sudden onset bc it was within about a 2 week period that everything showed up. But no - in my house it wasn't that he woke up one day with ALL of it. It continued to escalate as I watched wondering wth H1N1 did to him

[laurenjohnsonsmom]

(Bump)...I keep getting PM messages regarding question #2.

 

Strep was meant to be included but I think a lot of parents read it otherwise so its turned out not to be a very effective poll question. I thought this poll was lost in the archives but someone had resurrected it recently. I thought about starting it all over again.

 

Thanks to everyone who has recently taken interest.

 

Lynn

www.pandasresourcenetwork.org

Educate, Communicate, Cure

 

 

 

I know, Uuugh! I meant to put strep infection in the question but was thinking just "illness" to be broad, as many of us know now, that our children did have strep just prior to onset but it wasn't diagnosed immediatley so we thought it was a cold or other virus, etc...

 

Laurens Mom,

 

I have two boys with PANDAS........I believe there is no doubt a genetic link to this.

 

I do think the number 2 question will have thrown people off. Some kids have onset after a virus, vaccinations, flu, etc.

Some kids have onset after strep..... those are different onsets and the Strep has been called PANDAS (of course) and the other onset (due to viruses,etc.) has been referred to as PITANDS. My answer to #2 would still be no....... because it started with strep, which was not included in your question. Anyway...just my thoughts because I am not sure if you were looking for strep onsets or viral onsets.

 

Hope all goes well.