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Violent rages and ODD


dasu

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We have two PANDAS kids a daughter age 5 and son age 7. Both have been out of control for a month and a half. We saw our specialist who gave us steroids for my son. They helped on week 2 then he went back downhill. My daughter got worse too. We made another visit to the specialist who scheduled both kids for IVIG in two weeks and prescribed clindamycin for a month. It seems like time is standing still waiting. It takes both parents to care for kids, and my performance at work is pretty poor.

 

Their worst symptoms are ODD and violent rages, and paired together it magnifies the issue. These episodes come on with no seeming pattern. During rages they threaten us with various grotesque and violent ideas, and my son will also try attacking us hitting, kicking throwing things etc. sometimes he is able to convince his sister to join in, sometimes he will attack her. We had to restrain him for almost 6 hours today to keep him from attacking his sister or us. My arms and hands are sore from being hit. Even my parents needed to come as we were worn out. Yet even while restrained screaming and squirming and trying to hit he stopped to laugh and say "a butt" when my mom bent over to pick up some toys. Tonight we started risperdal for my son and tomorrow we will try to get our daughter on it too.

 

So...is there anything to do beyond risperdal? We are doing herbal anti-inflammatories and lemon balm is on it's way. We used herbal antibiotics until this flare. We are wheat and dairy free. They watch nothing violent, until recently they saw a Benji movie. Restraining him works in the short term but seems to enrage him. We are concerned that if we take him to a per psych unit they will keep him and have read that will be counter productive. Are we missing anything? Is this something beyond PANDAS?

Edited by dasu
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Do you have a Integrative pedi you can get to? Lithium orotate st Johns wort, all natural supplements have been huge. I really recommend that getting to a DAN or integrative pedi that can assess thoroughly your kiddos situation.

 

Feeling for your situation and hoping for the best for you and your kiddos. Let me know if you have any other questions.

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Very sorry to hear what you are going through. ds15 had a psych. hospitalization where they really just over-sedated him w/Depakote. Med 'balancing' was kind of a joke and he was undiagnosed PANS at the time, it turns out. The main thing was that it gave us a 12-day break to try to regroup and figure out next steps for our family.

 

Fast forward 2.5 yrs. later and PANS treatment since March 2014 where we occasionally have to use Risperdal-M (rapid-melt pills) 1 or 2 mgs. for uncontrollable violent outbursts but don't have him on it regularly. We also keep Trazodone on-hand. We decided it was better to have some PRN meds. to control things rather than go back to either a psych. ward or residential placement, or getting hurt ourselves, again.

 

We've been able to wean off all the anti-psychotics and are working w/an integrative PANS practitioner with success.

Good luck to you.

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I used benedrill when my ds was in the thick of it. I hated the thought that I was drugging him, but honestly, the crazy behavior was just too much to handle for any great length of time. It worked.

 

I am sorry that things are so rough in your household right now...

 

Best of luck with IVIG. We had great, lasting results with it

Edited by qannie47
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Right now we could use a hospitalization to recoup. This had drained us completely with them constantly defying, fighting, screaming (high pitch and loud) etc. it's odd because both are about the same.

 

What was the PANS integrative doc? Our specialist just isn't all that available, we had to get risperdal from primary care.

 

Will try Benadryl, crazy again this AM.

 

At what point do you go to a ped psych?

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You really need to get to the bottom of the infection. Lamictal helped our son but the one thing that stopped the raging anger was treating lyme and coinfections. IVIG tamped the raging down some too, but two IVIGs were not lasting. See a MAPS doctor, in addition to working on the PANS. MAPS docs used to be called DAN docs.

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I am wondering if the rages were occurring prior to steroids? The worsening with steroids can "sometimes indicate" there is a chronic infection that is not being addressed properly. When you suppress the immune response "sometimes" these infections get a leg up.

 

Additionally, clindamycin is an antibiotic that can really pack a punch because it cross treats...... hence an intense herx that might result in rages. My children have bartonella and when we treated it aggressively their herx's were rages.

 

Rages are predominate symptom of Bartonella for us. Have you checked for TBI co-infections?

Edited by sf_mom
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We tried to get in with the one expert child psychiatrist in our area for 2 yrs. and finally did this year - he's helped immensely, more than our dev. ped. was able to. He also believes in PANS and is up on the research. Mind you, ds15 has a complex neurological/dev. disability profile also (not all caused by PANS).

 

Benadryl used to be our go-to also, but less effective as ds15 has gotten older and stronger.

 

Integrative NP works on controlling inflammation, autoimmune issues, herbs for calming, de-toxing, etc. Some of what you are already doing it sounds. We are holding off on steroid bursts and IVIG for now since he is improving. Working on boosting his immune system (elderberry, colostrom, Beyond Balance formulas, etc. etc.).

 

We researched the child psych. units in our area (only a few choices), picked the best one where we had full access to ds15 and the treating staff. Still not enough, since PANS was happening and all the pscyh. meds. don't work same way as in mental illness without PANS. And they tend to over-sedate, b/c what else can they do in only 10-12 days?! Don't get me started about our mental health/healthcare system.

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    Right now we could use a hospitalization to recoup. This had drained us completely with them constantly defying, fighting, screaming (high pitch and loud) etc. it's odd because both are about the same.

    What was the PANS integrative doc? Our specialist just isn't all that available, we had to get risperdal from primary care.

    Will try Benadryl, crazy again this AM.

    At what point do you go to a ped psych?

     

Edited by tj21
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Hi, I'm so sorry you are going through this. Our son had rages until we started treating him for Lyme and Bartonella. We had to hide our knives and fireplace tools because he threatened me and himself with them. I know it's heartbreaking.

 

When do you get your Lyme and Mycoplasma test results back? Did you test through Igenex? Did you run a Baronella test? Although the lab test has a relatively high rate of false negatives, Bartonella is often a culprit when kids are raging. Make sure you get a copy of your test results and run them by the forum. Many doctors don't know how to read the results properly, especially if there are INDs (indeterminate results) on the test.

 

Also, many of these kids have paradoxical reactions to psych meds (worsening), so be on the alert for that with the Risperdol.

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Went to ER today only to learn that we need to work on our parenting techniques and make a psych exam. No tests, nothing, not even meds. Nurse came and yelled a couple of times at them. The doctor claimed that PANDAS should be primarily OCD and Tourette's and as we didn't talk much about that it didn't seem the proper diagnosis. So helpful.

 

The kids didn't see rages like this until after steroids and, for my son, on clindamycin.

 

Where do you find MAPS doctors and integrative NPs?

 

We are getting blood work done soon, it's been put off due to craziness. We are ordering lymes and co infections from Igenex, mycoplasma and a couple our doctor recommended.

 

I truly appreciate all of the replies, in fact need to go through and retread to see what we can do. You are a great bunch of folks!

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Just thinking a few things for immediate help:

 

What antibx have they been on besides clindamycin?

When I first put my dd on Azithromycin 6 years ago (daily) it was like a miracle- całm, level, etc.

Last Spring, after having been off antibx for a long time, started giving daily Biaxin, boom! immediate calming. It was unbelievable. Both are a macrolide antibiotic, perhaps it was an anti- inflammation aspect (she's never had Myco P) but never had that immediate and gratifying effect with any other antibx.

 

Also, yesterday, my dd9 had an accident. Long story short (she is okay) we ended up taking her off antibiotics yesterday (and today) and instead gave her Naproxen (prescript anti- inflam. like Aleve, I guess, but prescription from Dr. yesterday because of her accident) 250 mg 2x a day, and I dosed dye free Motrin off shelf 2x a day in between that-

Completely calmed her down. She needs to rest her back, and today she sat all day and rested, off antibiotics and on these anti- inflammatories.

Benadryl didn't help us the few times we tried it.

Good thoughts, hang in there, maybe you can call your Dr. ASAP and communicate your dire condition (actual hospital visit) and ask for immediate change of prescriptions to try--

Edited by SSS
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www.medmaps.org

 

You can put your zip code in and find docs in your area. Ours treats for lyme.

 

I'm really sorry for your ER experience. I had a similar one several years ago.

 

I would also echo that clindamycin is a big gun. Perhaps your are seeing a big herx. Lyme and coinfections can be a culprit in raging. In fact, it seems to be the rule. Thats not scientific just my observations after 4 years on this board and a raging son.

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