New to PANDAS need help

[3pandas4me]

Wow. I just recently stumbled into the information on PANDAS through my research for my autistic children. I can't believe I've never heard this before! My two oldest children are high functioning autistic, and my youngest is neurotypical. We just started biomedical treatment for my oldest two. It seems to me that my younget two children definately have PANDAS...my oldest I'm not sure about yet. I haven't been able to find much helpful info yet. Will they always have PANDAS? Do I only need to treat it when they have a strep infection? I saw something today that said they medicate neurotypical kids who have PANDAS the same as they would somebody with tourettes or tic disorders. Woah! I do not want to medicate my one NT child! She only has symptoms when she's sick. How do I handle PANDAS with her? Do I get special medication when she gets a strep infection? Thanks for any info

[peglem]

These threads give a good overview of what we here have learned about PANDAS/treatment. I would say most of us have not seen success w/ regular psychiatric treatments.

 

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

 

Welcome to this sight. Looking foward to getting to know you and your children.

[thereishope]

Welcome.

 

The links listed above will answer your questions. PANDAS is an autoimmune disorder so, in my opinion, it can go into remission and the child can go to live a "normal" life if it is treated, but the possibility of it resurfacing will be there. As to what happens after puberty, I really don't know. It is said that PANDAS may "go away" after a child hits puberty. I have read stories of PANDAS children who are young adults now and seem to be doing fine, so I am very hopeful this is the case. The staus of the immune system and "where the child is at with their PANDAS" during puberty probably plays a role in how they are in adulthood.

 

You ask whether you should only treat on a as needed basis when infection comes along. Well, the problem is that not every exacerbation may be the same. The more times it happens, symptoms may be worse, recovery may take longer, or more intervention may have to be sought. So, in my opinion, the ideal is to have the child be on a prophylactic antibiotic in hopes of preventing another strep infection.

 

As for how to treat a PANDAS child vs a child with OCD or TS...often a PANDAS child would not respond to therapy during the midst of an exacerbation. Some find, that you can learn some coping skills the child may benefit from. Some find that things liek CBT or ERP help their child when they are in the recovery period, perhaps more towards mid or tail end of recovery. As for SSRI's, some PANDAS kids have adverse reaction to SSRI's so they should be used with caution. Just becasue yourPANDAS child has OCD or TS, it doesn't mean they need SSRI's. Luckily, my son has been 3 exacerbations with bad OCD and never used them. I'd also like to add the clause that are some PANDAS kids who take SSRI's and do fine with them. Just be careful with them and with dosing.

 

As for whetehr a PANDAS child needs any type of special treatment when they have a strep infection....it seems a huge portion of PANDAS kids do not respond to penicillan or amoxicillan for strep. they often need something like Augmentin or Zithromax.

 

Do your kids have a DAN! dr? if so, this is something you can definitely discuss with them as well. A lof of DAN! dr's are aware of PANDAS and amy be able to help guide you. Also there is a list of doctor who have helped kids on this fourm. You may see if any are by you.

Here's the link to the dr list...

http://www.latitudes.org/forums/index.php?showtopic=6428

 

 

Finally, many PANDAS kids do not get classic strep symtpoms, their behavior changes are the only thing that tells parents they might have strep. If one has strep, all family members need to be tested. PANDAS kids may react to exposure only and even have setbacks with viruses, allergies, and whenever the immune system is activated.