Rage attacks and depression how to handle until meds kick in?

[HopeinHIM]

This was our son to a tee. Rages only stopped after we we began treating for Bartinella.

He is 1 yr into treatment and also 11yrs old. No school for 1 yr either. We tried many psych meds as well and none worked but many people have luck on some form or another. Its just a matter of finding what works and going very slow and low!!! Steroids made him worse too. He is on Rifampin and lots of detoxers along with low low Buspar and 40 drops a day of Bluejay CBC oil. All lab work came back inconclusive for Lyme's but the LLMD treated anyway thank GOD!! I am so sorry and please feel free to email me anytime. Hang in there. Your little girl is inside there. Please believe that!

[HopeinHIM]

oops, your boy I meant!

[MVPansMom]

Hi.  I realize that this post is a couple of years old but I am wondering if you can give me an update on your son. We have a kid that has PANS (one of his OCD's is suicide as well).  We are not in a flare but we are trying to get all meds and treatment in order so I would love to know how you handled your sons suicidal ideation?

Thank you.

[michelleb]

Sure.  We have been through but are finally on the road to recovery.  We did IVIG and Plasmapheresis. They helped with rages but did not really help at all with the suicide obsession.  My son continued to beg us to help or let him die every day. Then we finally did Rituxumab.  Eight weeks to the day from the last infusion he stopped begging to die.  Since then he has been making VERY slow but steady progress.  I think the inflammation has been receding steadily but he has a lot of healing to do.  He was sick for a very long time before we knew about PANS and then were able to stop the inflammation.  Our neurologist says we should expect at least a year of healing time for each year that his brain was on fire.  He also has what I think may be permanent damage (but who knows, she says it could all come back) with cognitive and executive functioning.  His new learning memory is very weak - and used to be very strong.  He also has major PTSD.  I know people say they do not remember - but my son does, and he especially remembers the hospitalizations - or at least still has the trauma from it so that is something we will have to work on when he is ready. 

For now - he no longer has rage, or begs to die.  No more hallucinations.  All that is great.  He still does not like to leave the house and cannot sit at the dinner table with the family.  He spends most of his time in his room alone.  He does play with other kids on line but that is the only interaction with anyone out side the immediate family.  Food issues have gotten better and he now eats pretty normally - although he is a bit picky. 

He still does not go to school but has gotten a little better about doing some work.  We managed to get through 7th grade math on line (it was mostly review for him which is why he could do it - when we got to new material he got stuck). 

Hope this helps.  Happy to answer any questions.  I still get really down and desperate - but we are in a MUCH better place than when I sued to comb through these pages daily in desperation. 

If you don't know about them - there are many closed or private facebook groups that have been very helpful.