PANDAS without Step

[tygertoo]

My DS (age 8) was diagnosed with Tourettes and OCD. He has alot of the "tell tale" signs of PANDAS beside tourettes/OCD. High anxiety, poor eye contact with people his is not comfortable around, immature at times, bed wetting. He is a very high functioning little boy in school who is very sociable with his friends and plays sports. We have never explored medications with him but he does go to therapy (which has helped him cope using CBT).

 

the question I have is he has never had Strep nor has anyone in our family. However, he does get pneuomonia (micro-plasmic) yearly since 10 months old.

 

We just took him to see Dr. K in Chicago Friday and he feels that my son has PANDAS. Since we are new to this, what are the thoughts out there and any advice from parents? We are getting some blood work done next and then will be looking at doing a steroid burst when he has a large episode (which Dr. K believes will be this fall). Then if it is confirmed this way looking at IVIG??

 

Thank you everyone!!!

[peglem]

I think you are in good hands w/ Dr.K.

[ajcire]

Is it still considered pandas if there really is no strep connection? or is that what pitands is? Have you actually ever had him cultured? I would never have known my son had strep if I hadn't just asked for him to be checked one day when everyone else in my house had it..... it was before I knew about pandas or I would have asked for him to be checked based on behavior and tics but at the time I didn't realize it could be connected. I was surprised he tested positive when he had no sore throat or fever. He has had negative cultures before but has had several with no typical symptoms of strep.

[momaine]

Even without a positive test it could still be strep. Maybe it's hiding out in the nasal passages or tonsils. Or maybe it is the mycoplasma. Either way, I think treatment is the same. PITAND/PANDAS...same treatment I believe. Targeting the right infectious agent would be key though, would it not? (as well as IVIG)

[sf_mom]

Just the other day Buster posted 10 articles linking mycoplasma pneumonia to psychiatric symptoms. I've attached the link. The S. pyogenes, M protein strains of strep can also cause pneumonia. You are in fantastic hands with Dr. K. There might be slight variation in antibiotic but I believe the long term treatment plan is basically the same for PANDAS/PITANDS unless its Lyme.

 

http://www.latitudes.org/forums/index.php?...art=#entry63708

[tygertoo]

One other thing...is it possible for a tick to cause any of this? I recently found out I was bit by a tick (ehrlichia chaffeenis) I do not know when and is even remotely possible that could be causing this for my son - somehow I passed this to him? I may be reaching, but I want to look at all possibilities...

[Doug]

You are in good hands with dr K

Trust him he knows what he is talking about

We are in week 9 of having ivig with him for

our daughter and she is (knock on wood) doing GREAT

Tracie&Doug

[thereishope]

Welcome. Like others have said, strep can be in numerous places...the throat, the gut, sinuses, ear infections, peri anal strep, strep on the skin. It's ridiculous.

 

Then there's PITAND. Let's say PITAND is like the parent of PANDAS. PITAND is catagorized as a general "infection triggered". PANDAS specifically says strep. Mycoplasma P specifically has been linked as the main and original trigger of some PITAND kids on here.

 

Then there's Lyme, it doesn't hurt to rule out Lyme with your son since sometimes you never see the tick or the bite. I don't think you could have passed anything onto your son (if it was induced by Lyme) unless you were bit while you were pregnant when you contracted Lyme.

 

Is your child on antibiotics right now?

Edited April 19, 2010 by Vickie

[tygertoo]

Welcome. Like others have said, strep can be in numerous places...the throat, the gut, sinuses, ear infections, peri anal strep, strep on the skin. It's ridiculous.

 

Then there's PITAND. Let's say PITAND is like the parent of PANDAS. PITAND is catagorized as a general "infection triggered". PANDAS specifically says strep. Mycoplasma P specifically has been linked as the main and original trigger of some PITAND kids on here.

 

Then there's Lyme, it doesn't hurt to rule out Lyme with your son since sometimes you never see the tick or the bite. I don't think you could have passed anything onto your son (if it was induced by Lyme) unless you were bit while you were pregnant when you contracted Lyme.

 

Is your child on antibiotics right now?

 

 

Hello vickie

 

No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify??

 

Thank you!!

[thereishope]

PITAND-Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder ........... See how that acronym is more generalized? So, that means an infection, like Mycoplasma, caused the same reaction as strep does in PANDAS kids, but the original, main trigger was different. Sometimes, people will use the acronyms interchangably. So, even though Mycoplasma might have been the main, original trigger the child will still be referred to as PANDAS. The acronymn PANDAS is just more known.

 

The thing with Mycoplasma, as I'm sure you know since he gets it so often, is that some meds (like Augmentin) that kids take for strep won't work for Mycoplasma. I have read that IVIG should help with Mycoplasma P as well.

 

It's confusing at first,but in time it will make sense.

 

 

Welcome. Like others have said, strep can be in numerous places...the throat, the gut, sinuses, ear infections, peri anal strep, strep on the skin. It's ridiculous.

 

Then there's PITAND. Let's say PITAND is like the parent of PANDAS. PITAND is catagorized as a general "infection triggered". PANDAS specifically says strep. Mycoplasma P specifically has been linked as the main and original trigger of some PITAND kids on here.

 

Then there's Lyme, it doesn't hurt to rule out Lyme with your son since sometimes you never see the tick or the bite. I don't think you could have passed anything onto your son (if it was induced by Lyme) unless you were bit while you were pregnant when you contracted Lyme.

 

Is your child on antibiotics right now?

 

 

Hello vickie

 

No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify??

 

Thank you!!

[tygertoo]

PITAND-Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder ........... See how that acronym is more generalized? So, that means an infection, like Mycoplasma, caused the same reaction as strep does in PANDAS kids, but the original, main trigger was different. Sometimes, people will use the acronyms interchangably. So, even though Mycoplasma might have been the main, original trigger the child will still be referred to as PANDAS. The acronymn PANDAS is just more known.

 

The thing with Mycoplasma, as I'm sure you know since he gets it so often, is that some meds (like Augmentin) that kids take for strep won't work for Mycoplasma. I have read that IVIG should help with Mycoplasma P as well.

 

It's confusing at first,but in time it will make sense.

 

 

 

Thank you Vickie

 

It makes a little more sense....I just would like to see lab work that confirms either strep or Mycoplasma or something before I consider IVIG. IVIG seems like such a big step to me for some reason....

 

I guess I will see what the strep/lyme test comes back as. I do not think that Dr. K ordered anything related to testing for Mycoplasma P. for some reason. This has been so overwhelming to me but I appreciate all of the support on the forum!

 

-Karen

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Welcome. Like others have said, strep can be in numerous places...the throat, the gut, sinuses, ear infections, peri anal strep, strep on the skin. It's ridiculous.

 

Then there's PITAND. Let's say PITAND is like the parent of PANDAS. PITAND is catagorized as a general "infection triggered". PANDAS specifically says strep. Mycoplasma P specifically has been linked as the main and original trigger of some PITAND kids on here.

 

Then there's Lyme, it doesn't hurt to rule out Lyme with your son since sometimes you never see the tick or the bite. I don't think you could have passed anything onto your son (if it was induced by Lyme) unless you were bit while you were pregnant when you contracted Lyme.

 

Is your child on antibiotics right now?

 

 

Hello vickie

 

No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify??

 

Thank you!!

[thereishope]

I think Dr K has ordered Myco P tests for kids before, so he might have. I totally understand wanting and needing to figure out what triggered all of this. Also, the antibiotic choice may depend on the infection and if your child has two infections at once, the doctor and you would them know it may be harder to erradicate. Let us know how the tests pan out once you get the results.

[tygertoo]

I think Dr K has ordered Myco P tests for kids before, so he might have. I totally understand wanting and needing to figure out what triggered all of this. Also, the antibiotic choice may depend on the infection and if your child has two infections at once, the doctor and you would them know it may be harder to erradicate. Let us know how the tests pan out once you get the results.

 

 

 

I emailed Dr. K and he did order the Myco P test...so it is just me being a "newbie" to all of this. I just want to make sure all of the Ts are crossed etc.

So now we wait for the results.

 

Thank you to everyone for the responses....this forum has been a wonderful thing to find and very comforting for me that we are doing the right thing for my son!