IVIG? Rage issues...and other questions

[jdude]

I haven't been here for a while, but after seeing aerials 2 yr review, I was thinking of our year and half review. Short history-DS (11-will be 12 in June) had sudden onset of OCD in May 2010, followed by tics (more like ritualized movements of head/arms), separation anxiety (had to touch me constantly). Diagnosed with PANDAS in Sept 2010, after antiobiotics and a steriod burst, symptoms went away. Since then has had exacerbations of other OCD (constantly touching things), that went away with another steriod burst, then handwriting issues, different OCD behaviors, decrease in math skills, and now the wonderful (insert saracastic tone here) rage episodes. His PANDAS doc, a local pediatric neurologist, hasn't recommended IVIG since his symptoms since the onset have been relatively mild (compared to say, Sammy from Saving Sammy). He is currently taking 1 250mg tab lg Pen VK. She also has kept him on Clonidine which was initially prescribed for the tics, although he hasn't really had many tics since the initial onset. She has recommended we take him to a Psychologist for CBT to manage the OCD when it's prevalent as well as the anger/rage issues. My husband questions how this can help if the cause is the PANDAS. My son's rages aren't constant, but can blossom out of nowhere, and often if we are reprimanding him. Last night's rage was due to TV privilages being taken away since he ignored my directive to not take food into the guest bedroom and he then told me "I sucked" and also used the F-word to his brother. I took him in for an initial consult, the psych recommended one of his groups for the rage/anger issues (which my son said he would refuse to go to...he's embarrassed and doesn't like to talk about things, so not sure how this is going to work...)

 

So...my question is, should we consider IVIG even though symptoms are relatively mild? I realize this is a chronic condition ,but it just seems like he takes a few steps forward only to take those steps back. Also, what are your opinions on CBT and therapy for anger management/rage issues for PANDAS kids? Any advice/thoughts would be appreciated.

[NMom]

My son has a similar story - fairly mild issues in comparison to some but big enough to affect his life. His initial onset (May 2010) started with tics but progressed quickly into OCD that quickly became overwhelming for all of us. In the process of confirming PANDAS, we started ERP therapy with a child pyschologist who specializes in OCD and ERP therapy. I'm a big believer in ERP now. When my son is in the middle of an exacerbation...the therapy is tough and not as helpful but he has developed skills that help him cope better. When he's stable there is still some residual OCD (has now morphed into intrusive thoughts)and the ERP therapy gives him the tools to deal with it much more effectively. Our doctor is also great at identifying when something is a tic vs OCD. Some of what we thought was OCD intrusive thoughts is actually tied to a tic. She can reassure him in a way that I can't and sometimes he relaxes just because she tells him something he's worried abotu his normal. And sometimes I go to her by myself for advice on how to cope when the OCD is not responding. She was not a believer in PANDAS but she is now! My son just turned 8 and has been doing ERP since he was 6 1/2. I think it has empowered him to deal with his OCD more independently - as much as I'd just like it to all just go away I have to be realistic that it might not be that easy. And he's now able to tell when something is becoming an OCD issue and we start working on it right away. Last summer he told me that he felt the need to keep washing his hands. We had a phone consult with our doctor and developed some ERP 'homework' very quickly and it never took hold as a full OCD ritual. That in itself was worth all the time, money and energy we've spent on therapy.

[dcmom]

Hi Jdude.

 

I have become more conservative the longer I am dealing with pandas.

 

I have two daughters that have pandas induced ocd, with some tantrum (not quite "rage) behavior and depression.

 

I agree with norcalmom that we have found ERP to be a HUGE part of our treatment protocol. We find it is much more difficult when in the middle of an episode, however "baby steps" can always be taken, which at least gives the child a sense of control. Once medical treatment starts working, the ERP is a lot easier, and very helpful in shedding the ocd. We have found having a REALLY knowledgeable, experienced and tough therapist key- and we have had to travel from NJ to FL to find this The therapist also helped us with the mild defiance and tantrum behavior we were seeing. Personally, I find great solace in having someone to bounce ideas of during an episode, even if things do not immediately help the child, it keeps me centered.

 

Our number one lifesaver, though, has been steroids. So, when I saw that steroids have worked for you in the past, it makes me wonder why not try them again. We saw a really rational neuro, who does not treat pandas but helped us out- his thought was to try treatments from most benign to most risky- he felt this would be: antibiotics, steroids, high dose iv steroids, ivig, plasma pheresis. We have followed this since we have seen him, and have had the good fortune of our kids really responding well to the steroids so far. I have also heard of a doc in my area that treats a child with a 5-day steroid burst every month.

 

In our experience, the low level symptoms really begin to affect the child's happiness, and the family as a whole. I also feel it leaves them vulnerable to getting worse very quickly (we have seen this). So these days, if I see that it is more than just a few days bump in symptoms, I start thinking seriously about steroids.