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

[michelleb]

Our 11 year old son was finally diagnosed with PANDAS after a horrible year of depression and suicidal ideation. He does not have classically recognizable tics or OCD (except for being obsessed with committing suicide). He has been to therapists, psychiatrists, ERs, and psychiatric hospitals - none helped. Finally our pediatrician suggested PBDAS. He has been on antibiotics for 10 days and steroids for 7 days now but he seems to just be getting more violent and upset. We are trying to be patient and just wait this out to see if the medicine works but it is so difficult.

 

The night before last we were in the ER because he was hallucinating something terrifying and actually started convulsing. His rages the last week have gotten extremely difficult to handle. It takes two if us to hold him when he becomes intent on hurting himself.

Any suggestions on how to get through the next week? What if this doesn't work?

[fuelforall]

Get ibuprofen down him if you can. If it really is PANS, it should help.

[michelleb]

Thanks. I will try.

[Surfmom]

Michelle, I am PMing you now.

[melmix]

While my son is getting better on antibiotics we have been given prescriptions for clonodine (a BP medicine) and Atarax (a histamine blocker).

Clonodine just makes him tired but it helps on the days we are getting him through a flare. Atarax seems to have helped also although it is too

soon to tell. He has actually been given Ativan and Xanax both which did nothing and he has a bad reaction to Benadryl and Claritin so we have

settled with these two.

Melmix

[Mayzoo]

My kiddo does not rage, but has high stress/anxiety resulting in a vocal tic, crying, and tremors. For stress/anxiety (which some believe is an underlying cause of the rage) we use Melissa Lemon Balm, CBD oil, and ionic magnesium regularly. Intermittently we use one of these: Ex-Stress, Sleep Relax, benadryl, or Klonopin. Kiddo is in a minor flare right now, so we just started her back on zoloft 12.5mg daily to hopefully take the edge off the anxiety.

 

I also just bought some essential oils to try by Young Living called Stress Away in hopes it will help with her tic and remaining anxiety. I would love to not have to react to a bout of what kiddo calls "the upsets". I would much rather get them under regular control with medication and herbs instead.

[Surfmom]

I have PM'd michelleb, but wanted to let anyone else in this situation that the only thing that broke our daughter out extreme rages ended up being a low dose of Risperidone. The pills come in a dissolvable form which means it can be administered in the middle of an episode without water. It takes about 15-20 minutes to take effect.

[riffleshell]

Could it be 'steroid rage'? I agree that you should try ibuprofen 3x a day for a week or so. That will help you know if it really is PANS/PANDAS, as the previous poster mentioned.

 

And if it is, see a PANDAS specialist (as listed on the pinned thread or on pandasnetwork.org) right away. It's excellent that your pediatrician helped you with the diagnosis, but s/he shouldn't be managing treatment.

[PowPow]

Risperdone was also helpful when our daughter was raging. We had every form in the house and would put the liquid in her drinks or food.

Have you had any labs done to look for cause-autoimmunity, infection, other?

[nicklemama]

Until you can get a prescription for something else, ibuprofen. At 11, he is likely old enough to take 1 200mg tab. My son is 11 and he weighs enough. Give it every 5 hours. You can do this for a couple of days.

[michelleb]

thanks all - just thought I would give an update. Our doc did prescribe Risperidone. It hasn't helped much. Also gave us Valium - no effect.

 

Had his tonsils out a couple of weeks ago - was calm for a week. Maybe the Oxycodone, pain that distracted him? Don't know. As he stopped taking the Oxy - his suicidal pleading and rages have returned.

 

He is tkaing Ibuporfin now that it is cleared post surgery. We'll see if that helps.

[trintiybella]

Not sure if this will help you and it probably seems to simple but vitamin D really helped calm the rages. I always thought that perhaps it was helping to kill viruses. Not sure really though. When my daughter rages, goes into depressions (with treatment) nothing can pull her out except time. I try to have family members close by at these times. Thinking of you....

[dasu]

I am sorry to hear about your son, you all are going through a lot. I assume the rage continued after the end of steroid, correct? Like your own case, the rages got worse after introduction of the antibiotic, clindamycin.

 

We have used Risperdal for the rages, and saw marginal improvement. We did notice it was more effective if given 2x day. Epsom salt baths have helped as well as lemon balm. Many PANDAS kids have trouble sleeping and that exacerbates symptoms. But really in the end we end up stopping everything else we do in life to mollify their anger - doing anything that they find enjoyable, massage and joint decompression therapy, sitting and watching them play video games. I realize your son doesnt have OCD but it can also be a tool to distract them from themselves and fixate on a neutral idea.

Edited March 15, 2015 by dasu

[4Nikki]

Our dd raged 4 months straight until she was given antibiotics for strep. Then started back after two months and was given antibiotics for bacteria infection. She raged on a cycle with this treatment but the rages stopped after the dosage. None of the ssri class drugs worked with her and even made it worse. Benadryl was the first thing to actually help her through the night. Ibuprofen helped curb the intensity. We learned using pillows for blocking worked better because restraining make her more intense. Ibuprofen with a stimulate worked best for our kido. We tried using just the stimulate but it didn't work with out the ibuprofen. One ER doctor prescribed a anti seizure med that worked through nasal delivery. It was the stuff used in surgery and works on anyone, but a difficult prescription we had to get it at a compound pharmacy. I think the only reason the doctor prescribed it was because dw is a or nurse. We had to put everything away no shape objects or things to be thrown. Dd would try to pull her hair out of her head. Or choke it out of her. She would wind cords so tight around her hands and arms it cut off circulation. She broke everything. Ripped a bedroom door right off its hinges and threw it down the stairs. She tried slamming the door on her hands. It took us a year to understand services that could help. Some of these people can be dangerous to your family life, because not all are well informed, but there maybe times, they can be just the help you need. Service help can vary greatly depending on where you live. I haven't come across any good information on restraining, except from one experienced Emergency response team. We had them come to our home and do an assessment. They had recommended a specific home that could help if we were to overwhelmed. One other thing, pay attention to his diet. Sugar exacerbated dd's rage. We found gluten free also helped dd.

Edited March 15, 2015 by 4nikki

[Q_is_my_world]

Oh my God, what a nightmare. I have no advice or help to offer, but I just feel so sorry that you parents and those poor children have to go through this. I don't know how you cope and remain functional. I just wish you the absolute best and pray that your children recover.