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Raging


Indigo

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I'm wondering why raging is not seen as a symptom of PANDAS and if most of your kiddos have raging...and what has helped! When I first read about PANDAS it was in Dr. Kenneth Bock's book and he describes rages in a child that were so similar to my dd's. That's what led me down this path to PANDAS...after being on anti's now for a couple of months...and trying prednisone, worked!, and now waiting for dd's second bloodwork, the raging and OCD are what remain. The raging is getting worse, again. It's scary, draining, exhausting, and I'm so upset today! The separation anxiety has not come back since we started anti's. But the needing everything to be the same all the time every day and if not questioning and worrying and questioning again...I guess this could be considered OCD? I'm feeling quite lost. What exactly is it in the brain that is causing the rage attacks and what do I do about them?

 

Oh, and what has changed this week is just that she has gone off of the diflucan for the 10 days off, she'll go back on on Wednesday...I hope this isn't contributing, but I don't know. The singulair could be contributing, too, not sure about that either. Some parents have said singulair works for PANDAS and I've read others say it causes mood changes...it seemed to work at first for dd but now I don't know if it is contributing to it or not.

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Indigo,

 

My son was on zyrtec for quite a few years. It really seemed to help him and I'm thinking that I'm going to buy it over the counter if he shows signs of needing a daily med again, since insurance will no longer pay for it. I guess it's not the profitable drug for them now that it once was. The patient isn't what matters only profits, i guess.

 

I ran across this article just recently. Ironically they are talking here again about Gardasil (hpv vaccine) and profits, not patients well being. Bottom line, if this is a newer medication for your daughter and you think you see an increase in symptoms, I would get her off of it. There was supposed to be a study that basically exonerated singulair.

 

bolding mine

 

http://www.bloomberg.com/apps/news?pid=new...id=am85Fd2sVycU

 

``Gardasil needs to be doing better,'' said Barclays Capital analyst Tony Butler in New York, in a telephone interview. The vaccine ``has become increasingly more important from a profit standpoint because of the concerns over Singulair and Vytorin and Zetia.

 

and

 

Merck, of Whitehouse Station, New Jersey, is counting on Gardasil to help offset declining sales of cholesterol pills Vytorin and Zetia after a January study found they may work no better at unclogging arteries than a cheaper medicine. Sales of the asthma treatment Singulair, Merck's top-selling drug, have also slowed over safety concerns.

 

Hope you are able to get to the bottom of it soon. Hope you post what you see after the diflucan is restarted too.

 

Edit

 

This is some info on the study that I was referring to as exonerating Singulair. The results based on 569 people don't really reassure me a lot.

 

http://www.barrons.com/article/PR-CO-20080...l?mod=bolcrnews

 

American Lung Association Study Finds No Evidence of Depression or Suicide Linked to Asthma and Allergy Drug Montelukast

 

 

Of the 1,352 patients who participated in the double-blind, controlled studies, 569 of these patients had been randomly assigned to take montelukast. The researchers analyzed these patients' data and found no evidence of any deterioration of emotional well being in either the adults or the children who received montelukast. On the contrary, the research team found a positive effect on emotional outlook when comparing patients taking montelukast to those receiving placebo.

 

While the findings of this study are reassuring and produced no evidence to support the recent publicity regarding a link between montelukast and depression or suicide, the authors do not dismiss the possibility that there could be other unrecognized adverse reactions to montelukast.

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I've been dealing with severe rages for many, many years. The zith really helps with this (but yeah, yeast issues!). It got to the point @ 4 years ago that we seriously considered institutionalizing...it was that bad and my poor kid was so miserable, all the time! We tried a bunch of psych meds- they either did nothing at all or made it worse. The idea was that if we did have to send her elsewhere, I knew they'd drug her. So, I figured at least I would be more careful with the drugs. Once we discovered the strep problem aqnd found that the zith really helped...things have improved, but still, the rages happen a couple of times a week. (B4 they were constant all day occurances)

 

We still do give valium sometimes, which helps, but I find that valerian works pretty well, too. I know, I know, its stinky horrible stuff. I'm lucky, because I can get my daughter to take it. She's also on Lamictal, a seizure med that also is used for a mood stabilizer (this came after a 8 day VEEG). Another thing that helps for us is the vitamin A/bethanechol treatment. Bethanechol mimics acetylcholine in the body, stimulating the parasympathetic nervous system, which is the part of the autonomic nervous system responsible for calming (balancing, modulating) the sympathetic nervous system. The sympathetic nervous system is responsible for the rages (fight or flight). I believe that most times, the OCD is what triggers the rages for my daughter...when she can't "satisfy" a compulsion.

 

Behaviorly, my daughter now understands that I know this happens to her without her wanting it. I "help her be safe" (our magic words) by holding her in a safe place until she can get herself back under control.

 

I have found this website to be helpful in dealing with rages:

 

http://members.tripod.com/LeeLydon/rage.html

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My dd has very severe rages too. She had a real bad one last night and they are very scary and last a long time. She looks like a wild animal sometimes. We also just have to hold her snugly until it is over because it is very unsafe for everyone. Usually she doesn't have them at home, but she has had a few lately as we are weaning her off risperadol before we do a steriod burst trial. Risperadol is the only thing that did help change the quality of the rages so far, but we haven't tried a whole lot of other things yet.

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Hi, y'all:

 

This may not be applicable to others' situations, but we discovered the hard way that the psych meds prescribed by our local (ex-) psychiatrist (ativan and zyprexa) were making the rages, hyperactivity, and violent outbursts much, much worse. Dr. K warned us about this and recommended we taper him off before our trip to Chicago for IVIG. A few days after we tapered off these meds, our son was a totally different kid: much calmer, much more rational, a HUGE stress reduction on the whole family!

 

He still has angry outbursts sometimes - and did in the past - but they're extremely mild and brief compared to what we saw while he was on those particular psych meds. We're going to avoid those types of meds like the plague in the future, just from pure paranoia. (I've read that SSRIs in small doses can be beneficial to PANDAS kids, but we're too scared to contemplate more meds after 6 weeks of torment.)

 

Don't know if that's at all relevant for others, but wanted to share our own painful experience.

 

Good luck, Amy!

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We got her blood work back and her titers are the same and very high, even on the clarith. We switched to Azith last evening.

 

We've had an awful week...dd hurt her hand climbing a tree and we had to go see our local, non-PANDAS doctor and we got one at the practice that I always try to avoid. Dd is hysterical for any sort of procedure so this was no different. The doctor was so rude and disgusted with her and sent us to the ER to put her under in order to get stitches.

 

We didn't go, we went to our PANDAS doctor instead the next morning and he showed me how to apply glue and strips across the wound at home. He was so caring and understanding and said that it is to be expected with her PANDAS diagnosis.

 

We also did the dentist for the first time this week and the dentist was very angry at me for not getting x-rays, but I didnt' want to rock the boat any further since dd already had miraculously sat to get her teeth clean for the first time in 7 years. Again, he wanted both my kids to go under at the hospital to get more work done, but our DAN doctor is giving us supplements for rebuilding the teeth instead. The medical field other than our PANDAS/DAN doctor has proved over and over again to be so cold and callous towards my daughter because she doesn't comply easily. :(

 

Anyway, Advil is helping right now to keep her calm and off the singulair she is doing much, much better. But with the strep titers so high, it explains why she's still symptomatic, I think.

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The nurse forget to send for the ASO titer, so it was the DNABase titer and it was 480, the same that it was last time (the first time) we checked them. I think this was about 2-3 months ago. I don't know the last time that she had strep because she hasn't had a positive strep test or infection since she was 2 (she's now 7). She does react horribly though when any of us have had strep, but no one has been sick here in the past 2 months.

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I definitely spoke too soon on that one. The raging and screaming back at me is just awful. :wacko: I'm so upset tonight, I just feel like this is so out of my control and there is no solution. She has intense fear and reactions to any sort of doctor or hospital or prodedure, so it really leaves IVIG out of the picture. Her throat tic has been terrible this week and it always correlates to the hyperactivity, the OCD with her schedule, and the raging. I wish the anti's would work for us!! :angry:

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I feel for all of you who are dealing with the rages... my DD (7 years old) just started back up with the rages. They come out of nowhere, and anything seems to trigger them. When she has these rages they don't happen every day (knock on wood), but the reprocutions usually last a day or two. DD hasn't had them at home, and usually does it at school or out in public. When they escalate it usually takes at least 30 minutes for her to come down... with help. Just like someone in an earlier post mentioned, she's like a wild animal. The last meltdown I witnessed her eyes looked unusual... dialated and one of the eyes almost appeared lazy... very scary. After she calmed down she was exhausted, and almost sad-like. Because there were irregularities in her EEGs and MRI in the sleep area when we went to a pediatric neurologist almost two years ago... we decided that she should see a new one. Next week she'll be seeing a pediatric sleep-neurologist.

 

I still have hope that there is something we can do to rid DD and our family of this nightmare.

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  • 4 months later...

Just got off the phone with the psych about this issue and obsessing. Do you think prozac would help with this? We have been on the Abilify for a year and the rages keep returning as do the mood swings. Tried the ADHD meds and they also worsened the meltdowns. I am starting to think the antidepressant/anxiety meds might help. The psych has had a hard time with getting his meds right. I just keep leaving her messages a couple times a week. I am getting way frustrated and am waiting to get into another psych that deals with tics and aspergers. Mayybe she will get the PANDAS OCD better then the one we are currently using.

 

Lacy, have you found anything to help with the rages yet?
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Just got off the phone with the psych about this issue and obsessing. Do you think prozac would help with this? We have been on the Abilify for a year and the rages keep returning as do the mood swings. Tried the ADHD meds and they also worsened the meltdowns. I am starting to think the antidepressant/anxiety meds might help. The psych has had a hard time with getting his meds right. I just keep leaving her messages a couple times a week. I am getting way frustrated and am waiting to get into another psych that deals with tics and aspergers. Mayybe she will get the PANDAS OCD better then the one we are currently using.

 

Lacy, have you found anything to help with the rages yet?

 

What helps my daughter is 2 things- First of all lamictal (anticonvulsant/mood stabilizer). She first went on that because of suspected seizure activity. It did get rid of those episodes that we thought were seizures. I don't know if the mood stabilizing effects are what reduced the rages or if the rages were brought on by fear response to the seizure episodes and therefore were reduced when episodes were gone...but didn't someone else's child improve on an anticonvulsant?

 

We had tried numerous SSRIs and some antipsychotics. SSRIs did nothing and the antipsychotics made things worse. Keep in mind that all the SSRIs were tyried before we had her strep under control.

 

The other thing we do is CLO with bethanechol. Here is the info I brought to her doctor to get him to try the bethanechol:

http://www.autism.com/treatable/supplement/megson.htm

This especially helps with sensory processing. Again, I don't know if rages were reduced because the better sensory processing reduced rage triggers or if it is a direct result of the medication. For sure, though, it helps her to regain control more quickly when she does go into rage mode and it lessens the severity of the rages. If you do end up using an antipsychotic (is abilify one?) there was a study done using bethanechol to successfully ameliorate the SEs of antipsychotics as well. Allie's psychiatrist uses it with some of her patients for that. (not the doctor who prescribed it for us, though)

It just now popped into my head that maybe the abilify quit working because its blocking the cholinergic system....let me know if you want me to find the study about bethanechol and antipsychotics.

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She's also on Lamictal, a seizure med that also is used for a mood stabilizer (this came after a 8 day VEEG).

 

Sabrina's psychiatrist put her on Lamictal about 6 weeks ago. We started off really slow (because of the rash side effect - so far we've been lucky, no rashes), and as of St. Patty's day she's been on 50mg (2 pills) a day. Almost immediately after she was put on the 50mg, she started waking up with nightmares (she's rarely ever had issues with nightmares). When she went back to school that Thursday things go increasingly worse (rage-wise), and then Friday, much worse and then Monday it got so terrible that we had to come pick her up from school. Desperate, upset and ready to do anything I called her psychiatrist who recommended splitting the dose - 1 pill before bed, and 1 pill at breakfast... so far I think the combo might be helping, but I'm not going to hold my breath. If this doesn't work, we will be adding back the Ceflexin (sp) to see if that helps.

 

I'm really nervous today - she's got a field trip to the zoo. She's been running off away from the teachers lately and I'm worried about her doing the same today. I feel a little better that the school assigned her, her very own teacher to watch over her. Sad that it has to be that way, but it breaks my heart when she's missing out on so much of her childhood.

 

I think DH and I are hanging in there (sanity-wise). Our biggest concern is if we can't get this nipped in the bud as she gets closer to puberty... I'd hate to think on that too much. :(

 

[Edited to include:] On a side note, our results with the SSRIs were extremely negative. It appeared to enhance the energy Sabrina put into her rages. She was completely out of control.

 

[sorry, Edited again to include:] Wow guys, sorry I totally missed my note on this thread... I find that I am in denial and sometimes avoid the forum - I think in an attempt to avoid the topic altogether... my escape from reality. Sad. Sorry again. I did notice on the link http://www.autism.com/treatable/supplement/megson.htm that was included, the doctor who wrote that is directly in my area. I am almost positive I tried contacting her, but never recieved a response - that's been a few months back. I may try and call her.

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