can rages/compulsions be controlled eventually?

[pastacey]

Hi All,

 

I'm new but I've been at this for six years. Suddenly six years ago out of the blue my son developed rages, ticks, compulsions, disregulation, obsessions -- was a different person almost one day. I have not been working with a good doc and have been given some bad advice. They tried antibiotics three years and and it didn't help after a month so they took him off and stopped thinking PANDAS. Vitamins have helped and a bit of lithium but not much. Now suddenly rages are back after being gone several months. He's not safe with peers or in the community. We are considering a boarding school to help him learn to control himself. I realize that meds would work a lot faster if this is indeed PANDAS (I'm convinced it is). -- the question is can behavioral teaching help these kids minimize their compulsive urges, vocalization, or rages?

Second question: Can young people in their twenties begin to manage this behaviorally at all? What does it look like when one is an adult?

 

thanks,

pat

[dcmom]

Hi Pat,

 

I am so sorry to hear about the long struggle you have been through. There are many parents more qualified to talk to you about dealing with pandas in an older child- but I wanted you to get some response quickly.

 

My dd's both were diagnosed with pandas this year, after an overnight onset. We have been very fortunate to work with a great pandas doc, and get immediate medical intervention. Even though we caught this right away, antibiotics were not enough.

 

My biggest advice to you would be to do whatever you can to get with a pandas doc (dr K, or dr L). My children also had rages and some agression, which subsided immediately with serious medical intervention. (they had plasma pheresis).

 

I am sure others will chime in. You have come to the right place for support in your efforts to get your child well.

[peglem]

My experience is that w/o the proper medical intervention, behavioral interventions do not help and may make things worse. By setting unattainable expectations, anxiety is increased. For my daughter, the rages are like seizures-they just happen and no matter how hard she tries to stop them, they just take over. We had 3 months at the beginning of this year w/ a PANDAS remission- almost no rages during that time.