Does my son have PANDAS?

[Santi]

Hello, I am new to this forum. I have a 7 year old son with multiple DX's: ADHD, Anxiety, Tourettes, Sensory, Language Disorder and OCD issues. Occassionally his tics/OCD become alarmingly severe and he has violent outbursts. We had the following tested: ASO (score 984) and D NASE B (score 284) so they were both high. What do we do now? His regular pediatrician doesn't know about PANDAS and he plans to refer my son to the infectious disease department at KAISER (have a feeling they won't know either). We live in San MAteo (CA) which is near SF. Are there any experts out this way? Not sure what to do. Please help. Andrea

[peglem]

One of the things you might try (or see if you can get your pediatrician to try) is a month of full strength abx...most PANDAS parents find that either augmentem or zithromax work best for PANDAS. If you see obvious improvement w/ abx, then that is a good indication that your son's behaviors are the result of an infectious agent. Also, to check for autoimmunity, a steroid burst is often tried, which suppresses the immune system (including auto-antibodies). I hope you will not just be passed from doctor to doctor, like so many of us here have been. That tends to happen when they don't know what to do....

[fuelforall]

Hello, I am new to this forum. I have a 7 year old son with multiple DX's: ADHD, Anxiety, Tourettes, Sensory, Language Disorder and OCD issues. Occassionally his tics/OCD become alarmingly severe and he has violent outbursts. We had the following tested: ASO (score 984) and D NASE B (score 284) so they were both high. What do we do now? His regular pediatrician doesn't know about PANDAS and he plans to refer my son to the infectious disease department at KAISER (have a feeling they won't know either). We live in San MAteo (CA) which is near SF. Are there any experts out this way? Not sure what to do. Please help. Andrea

 

 

See pandasnetwork.org.

Talk to Diana, she's in the Bay Area.

[Santi]

One of the things you might try (or see if you can get your pediatrician to try) is a month of full strength abx...most PANDAS parents find that either augmentem or zithromax work best for PANDAS. If you see obvious improvement w/ abx, then that is a good indication that your son's behaviors are the result of an infectious agent. Also, to check for autoimmunity, a steroid burst is often tried, which suppresses the immune system (including auto-antibodies). I hope you will not just be passed from doctor to doctor, like so many of us here have been. That tends to happen when they don't know what to do....

 

Thanks. Its so nice to have the specifics. I will try it. Andrea

[Santi]

Hello, I am new to this forum. I have a 7 year old son with multiple DX's: ADHD, Anxiety, Tourettes, Sensory, Language Disorder and OCD issues. Occassionally his tics/OCD become alarmingly severe and he has violent outbursts. We had the following tested: ASO (score 984) and D NASE B (score 284) so they were both high. What do we do now? His regular pediatrician doesn't know about PANDAS and he plans to refer my son to the infectious disease department at KAISER (have a feeling they won't know either). We live in San MAteo (CA) which is near SF. Are there any experts out this way? Not sure what to do. Please help. Andrea

 

 

See pandasnetwork.org.

Talk to Diana, she's in the Bay Area.

I appreciate it. Andrea

[EAMom]

Welcome,

there are a bunch of us in the bay area. SFmom and mama2alex area also bay area. I would definitely get a current throat culture of your son as well as family members (esp. siblings)...and also get blood tested through the Univ. of Oklahoma (Dr. Cunningham) CaM kinase ll and anti-neural antibioties.

 

Here are some helpful threads:

 

FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

 

and an flow chart of things to do if PANDAS is suspected:

http://www.latitudes.org/forums/index.php?...art=#entry52997

 

Here are some bay area docs:

http://www.latitudes.org/forums/index.php?...art=#entry37591

 

In general, there are not big PANDAS experts in CA (like in the EAst, which has Dr. K., DR. T. and Dr. L).

 

Definitely talk to Diana Pohlman (pandasnetwork) as well.

[sf_mom]

Yes, there are several of us in the Bay Area near by you and can help. I concur with EAMom.... check everyone in the house for strep both rapids and cultures. AND, secure a month long prescription for Azithromycin or Augmentin from your current Pediatrician until you can get help from other Dr.'s locally. My son is 45 pounds and currently on 500 m.g. per day of Azithromycin.

 

-Wendy

[Santi]

Yes, there are several of us in the Bay Area near by you and can help. I concur with EAMom.... check everyone in the house for strep both rapids and cultures. AND, secure a month long prescription for Azithromycin or Augmentin from your current Pediatrician until you can get help from other Dr.'s locally. My son is 45 pounds and currently on 500 m.g. per day of Azithromycin.

 

-Wendy

 

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea

[peglem]

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea

 

No, I don't think they are. The recommendation of those particular abx's is comes from experiences discussed by people on this board.

 

Here are some threads that you may find particularly useful if you are new to PANDAS:

 

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

And, of course keep asking any questions you have!

[EAMom]

Yes, there are several of us in the Bay Area near by you and can help. I concur with EAMom.... check everyone in the house for strep both rapids and cultures. AND, secure a month long prescription for Azithromycin or Augmentin from your current Pediatrician until you can get help from other Dr.'s locally. My son is 45 pounds and currently on 500 m.g. per day of Azithromycin.

 

-Wendy

 

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea

 

Azithromycin and Augmentin are 2 of the more popular abs on this forum. Some PANDAS kids do have success with other abs (such as amoxicillin, keflex, penicillin etc.) But, Augmentin and Azith. are among the "stronger" antibiotics and tend to have higher sucess rates for PANDAS treatment. Some docs prefer to start with "smaller gun" antibiotics such as penicillin or amoxicillin but bear in mind that they don't work with many pandas cases. And even with the stronger antibioitics (augmentin, azith), many pandas kids end up needing more: IVIG, plasmapheresis, steroids...

 

Have you read Saving Sammy? Sammy started with penicillin (I believe) but eventually needed to be on high doses of Augmentin XR to get good sustained improvement in symptoms.

 

For us, Azith. was the most effective antibiotic (it was the 4th one we tried). Amoxicillin did nothing.

 

There is a fair amount of amoxcillin (and thus pennicillin) failure in strep. Here's an article that explains it: http://www.entrepreneur.com/tradejournals/.../169459644.html

[Santi]

Yes, there are several of us in the Bay Area near by you and can help. I concur with EAMom.... check everyone in the house for strep both rapids and cultures. AND, secure a month long prescription for Azithromycin or Augmentin from your current Pediatrician until you can get help from other Dr.'s locally. My son is 45 pounds and currently on 500 m.g. per day of Azithromycin.

 

-Wendy

 

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea

 

Azithromycin and Augmentin are 2 of the more popular abs on this forum. Some PANDAS kids do have success with other abs (such as amoxicillin, keflex, penicillin etc.) But, Augmentin and Azith. are among the "stronger" antibiotics and tend to have higher sucess rates for PANDAS treatment. Some docs prefer to start with "smaller gun" antibiotics such as penicillin or amoxicillin but bear in mind that they don't work with many pandas cases. And even with the stronger antibioitics (augmentin, azith), many pandas kids end up needing more: IVIG, plasmapheresis, steroids...

 

Have you read Saving Sammy? Sammy started with penicillin (I believe) but eventually needed to be on high doses of Augmentin XR to get good sustained improvement in symptoms.

 

For us, Azith. was the most effective antibiotic (it was the 4th one we tried). Amoxicillin did nothing.

 

There is a fair amount of amoxcillin (and thus pennicillin) failure in strep. Here's an article that explains it: http://www.entrepreneur.com/tradejournals/.../169459644.html

 

 

Thanks for the article! I know it can vary, but how often are PANDAS kids generally treated with abx yearly? Is it recommended to follow with pro-biotics. The antibiotics worries me especially if its too much. What's the word on that? Andrea

[EAMom]

Many kids on this forum (including my dd) are on long term abs. One doc we saw (a pediatric rheumatologist) called PANDAS "rheumatic fever of the brain". With rheumatic fever prevention of future strep infections is critical...I believe the same is true with PANDAS.

 

Also, many parents find that subsequent exacerbations (even if the first one is treated with abs) to be more severe and resistant to treatment (and there may be a "baseline change" where the child doesn't return quite to normal after each exacerbation)...thus prevention is key.

 

And yes...most on this forum also use probiotics.

[thereishope]

Welcome. May I ask the timeline in which you saw all the disorders surface? I'll give my son as an example...always had a severe speech disorder, but the OCD, ADD, ODD, rages, all came on at once. Perhaps he always had slight sensory (as is common with speech disorders) but nothing to the point of concern. However, when PANDAS surfaces, the sensory is extreme.

[Santi]

Welcome. May I ask the timeline in which you saw all the disorders surface? I'll give my son as an example...always had a severe speech disorder, but the OCD, ADD, ODD, rages, all came on at once. Perhaps he always had slight sensory (as is common with speech disorders) but nothing to the point of concern. However, when PANDAS surfaces, the sensory is extreme.

 

Hi Vickie,

 

My son has had behavioral problems since age 2. It started with sleep problems and language delays. At 4 he got a PDD-NOS diagnosis which was disputed by Dr. Siegel 1 year later. At age 6 he got an anxiety and adhd diagnosis from UCSF. He has always struggled with hyperactivity, impulsivity, anxiety, aggression, anger. The tics and OCD really started surfacing around age 6 more significantly but I think he had it earlier and I didn't recognize it. Today, every so often his tics can be so alarmingly that I think he'll end up in the hospital because of necks jerks. He also does, jumps, claps, vocal noises. His sensory issues somedays are so bad that he is driving to school naked in the car because he can't handle wearing clothes. His violent temper can be alarming at times. There are holes in our doors, broken lamps, you name it he's done it. There have been a few times I wanted to call 911 but just couldn't bring myself to it. Then, as if transformed overnight, he's mellow, compliant, handles clothes, no tics. Ahhhh, that felt good to get off of my chest. That's what I've been dealing with to say the least. I'm looking desperately for some closure. Andrea