Rage/Tourette/Exorcist breakdowns

[peglem]

We haven't seen a bad explosion since Sept 2010.

Wow! I want to live in that world!

[SSS]

Thank you, everyone, all very helpful to me, I have taken some notes.

She has her 6 yr. old regular checkup in 4 weeks- I am going to see how the IVIG works it's 'magic' over the next month, but I think I am going to have to try my insurance folks for counseling of some sort--

And, even though she hasn't had 'problems' in her 1/2 day K, I am putting together a letter/start a 504. It's feeling non-functional here, with the OCD and breakdowns. She gets to school, but it is so much effort, between being unable to shower regulary, have her hair combed, and wearing the same 2 shirts, etc, etc. And her anxiety there :-( So sad, because she really does want to go.

[airial95]

What we did not realize was we were interrupting an ocd or keeping things from being "just right".

 

That was our situation exactly!!! Our ped recognized it as OCD, and once we learned a bit more about OCD - we felt like complete idiots for not realizing that's what was happening!!!

[AmySLP]

I've really been on the fence about my 4yr old daughter &PANDAS, but these rages are just what I'm unable to write-off. SHe goes from being easy going and sweet, to a raging out of control child in minutes. Like all of you, I have "battle wounds" to show it (currently 3 large scratches on my face). I can see where the exorcist idea comes about, b/c that's just it-she's not even herself during these, but then again, they are occurring so much lately, that they seem part of her. Just like S&S-she is perfect at school! Then I arrive and they have seen a few times how she'll be ready to leave and then suddenly lose it-it's exactly that something did not go right. She gets more and more frustrated as we try to figure out what she wants or how exactly she wants something done. This post has helped me decided to fill the ABX rx I have and track her behaviors over a few weeks. In addition to these out of control rages...she has nighttime incontinence and almost always pees her pants during the rages, sensory issues (intense thumb sucker, sensitive to loud noises at times, hates the wind, etc). She had OT for about 9 months as a 2/3 yr old which started after PT, which she had for mild gross motor problems. I just don't have the diagnosed strep hx on her like I do on my 6.5 yr old, who definitely has PANDAS. Neither of my girls showed titer rise (despite this being done a few times in the midst of my older daughter having dx. strep for 6-7 months). ALso my 4 yr. old did have elevated cd3 (38) and poor response to the Prevnar vaccine, based on the serotypes. Also notelworthy is that my 6.5 year old delevoped PANDAS at age 4 but again with many, many known strep infections over 6-7 months.

 

I'm starting the ABX today and going to journal daily and see where we go with the rages. They seem to be about the only symptom that I can quantify in terms of how often she has them-in the past the bedwetting has not gotten any better with the ABX, but I realize that could still be age-based.

 

Thanks for this topic-hearing about your childrens' rages has really helped me to come around that this may be PANDAS.

 

Amy

[JJMom39]

S&S-My ds8 has been in OT since the fall and after realizing how much sensory processing problems are at the root of some of his issues, we were able to find things that have helped calm his meltdowns, and also his PANDAS-related rage, tantrum and meltdown issues. When he is in the throws of a meltdown or rage we do one or a combination of the following: wrap him tightly in a blanket; hold him tightly, like in a bear hug, with his limbs close to his body; lie on him; and/or heavily lean into him. The deep pressure from these things gives input to the proprioceptive system which is calming. The first time my husband lied on him his meltdown stopped cold. It has worked that well for me too. If he is in the throws of a rage it can be tricky to get him wrapped up or still enough for the deep pressure, but once the deep pressure input starts he calms right down. It has been our magic. And he doesn't seem to fight it as much now I think because he knows it will be calming. It doesn't prevent a rage from beginning but it has brought them to an end. To me it's like he has no control over himself, and then with the deep pressure input he is able to calm and come out of it. As some other moms have commented swinging can be very calming also.

[Malke]

This reminds me that back in the summer (maybe early PANDAS epsiodes, maybe reactions to pool and sunscreen chemicals, not sure) I used to hold dd in my lap using a pillow over her arms, when she was having her exorcist/out of her mind rages. The pillow gave me better traction, provided deep pressure (calming), and kept me safe from hits and scratches and bites. (lovely, I know, but it sounds like we've all been there) Anyhow, she'd tell me to stop so I would from time to time to see if she could really stop the hitting etc. If not, then used the pillow some more. Usually, after a while she'd be calm enough to be able to sit on my lap with out striking out, and wouldn't want my hands anywhere near her, but being on my lap and rocking (in glider) would help calm her down the rest of the way. Never happened while we were out, though, which makes it tougher as you know. I've also put her on the bed and a pillow on top of her torso, and lain on her too. Sometimes it made her madder, but more often than not, when she'd get up she'd still be mad, but more in control. The deep pressure brought her back to her mind and body a little, I think.

[browneyesmom]

I've really been on the fence about my 4yr old daughter &PANDAS, but these rages are just what I'm unable to write-off. SHe goes from being easy going and sweet, to a raging out of control child in minutes. Like all of you, I have "battle wounds" to show it (currently 3 large scratches on my face). I can see where the exorcist idea comes about, b/c that's just it-she's not even herself during these, but then again, they are occurring so much lately, that they seem part of her. Just like S&S-she is perfect at school! Then I arrive and they have seen a few times how she'll be ready to leave and then suddenly lose it-it's exactly that something did not go right. She gets more and more frustrated as we try to figure out what she wants or how exactly she wants something done. This post has helped me decided to fill the ABX rx I have and track her behaviors over a few weeks. In addition to these out of control rages...she has nighttime incontinence and almost always pees her pants during the rages, sensory issues (intense thumb sucker, sensitive to loud noises at times, hates the wind, etc). She had OT for about 9 months as a 2/3 yr old which started after PT, which she had for mild gross motor problems. I just don't have the diagnosed strep hx on her like I do on my 6.5 yr old, who definitely has PANDAS. Neither of my girls showed titer rise (despite this being done a few times in the midst of my older daughter having dx. strep for 6-7 months). ALso my 4 yr. old did have elevated cd3 (38) and poor response to the Prevnar vaccine, based on the serotypes. Also notelworthy is that my 6.5 year old delevoped PANDAS at age 4 but again with many, many known strep infections over 6-7 months.

 

I'm starting the ABX today and going to journal daily and see where we go with the rages. They seem to be about the only symptom that I can quantify in terms of how often she has them-in the past the bedwetting has not gotten any better with the ABX, but I realize that could still be age-based.

 

Thanks for this topic-hearing about your childrens' rages has really helped me to come around that this may be PANDAS.

 

Amy

 

Amy, would I correctly assume that you are having strep throat rapid or cultures done and they are negative so this is why you write that your younger daughter dose NOT have strep infections? If so, I wonder if she might have it in her sinuses or in her ears? Of course, there does not HAVE to be a diagnosed strep infection to have PANDAS - this from Dr. B when we saw him - he has it on cards in his office. She may have other infections, such as Lyme or Mycoplasma. Regardless, you may want to have other labs checked to rule out these infections.

[tpotter]

We went through what you are describing for many years (I even had my arm broken, and in order to avoid the questions form the hospital, I told them I was "messing around" with my son, and described the exact position I was in....luckily he's older, and "messing around" would be more appropriate.) Furniture and everything would go flying, and we had to escape the house several times.

 

Dr. K. told us to give him 5-HTP, and we have played around with quantity...we give him 300 mg prior to bed, and we give my other son who has mood issues, too, 400 mg before bed. I think it's helping with sleep, but the reason he said to do it was because PANDAS depletes the body of tryptophan when stressed. That was particularly interesting to us, because we had stumbled previously upon using PEANUTS/PEANUT BUTTER to stop the rages. My son hates the stuff, but we were trying to find something high in protein and fat (fat goes straight to the brain), and he didn't like meat. When my DH went into a rage, getting him to eat 1 T of peanutbutter or a small handful of peanuts stopped it within minutes!!! The hard part was getting him to eat it, because he didn't like it, but I would threaten him with taking away something really meaningful to him (like allowance), and luckily, it always worked. I had to wait for a break in the rage, and sometimes left pb&J sandwiches outside the bedroom. Luckily, several years of treatment (abx and now IVIG) have really helped, but he does start to rage when he's getting sick. Antiseizure meds also helped to slow down the change in mood, so we would have a few more seconds of notice that it was changing, and it also has helped him to become aware of when he's about to go off the "deep end." He runs to his room.

 

As in your case, this rarely happened outside of the home, and was primarily directed at me, but I think that's because I was the primary person to discipline. It's terrifying. Is your DD on abx or any other meds? Oh, and personally, I do NOT recommend psycotropic meds, but again, that's my personal opinion, and based on personal experience with my other son (and based on Dr. Murphy's article.)

 

But, again, I think our biggest success was always carrying peanuts with us, and getting a small handful into his mouth really fast. I would love to know if this works for anyone else. (btw...peanuts are full of tryptophan and fat, and I highly suspect that may be why they work so well.)

[Ozimum]

"PANDAS depletes the body of tryptophan when stressed."

"...personally, I do NOT recommend psycotropic meds, but again, that's my personal opinion, and based on personal experience with my other son (and based on Dr. Murphy's article.)"

"...peanuts are full of tryptophan and fat, and I highly suspect that may be why they work so well."

 

Hi tpotter,

I find this so very interesting. Our Biomed dr made the comment that SSRIs are problematic for our kids when they don't have enough serotonin for the SSRI to work on. And I understand that tryptophan is the precursor for serotonin (and melatonin). The metabolite and precursor for tryptophan is 5-HTP, an amino acid. I'm rapidly coming to the conclusion that the gut really has a major role...

[SSS]

Last year I tried 5-HTP, and Gaba, for my dd, and they did NOT work out- (and I wanted them too.)

One of the PANDAS Docs I consulted told me that these 2 things work on different areas of the brain, and he was not surprised we had negative effect- he recommended Taurine instead.

For us, gut is an issue. Been working on it for awhile. It's a tough one.

By the way, we do 1 mg. Melatonin before bed every night, and she sleeps well (hasn't always, of course, had our share of controlling thoughts ruling her for months on end.)

The 1 mg. melatonin works just fine for us.

Edited March 13, 2011 by S & S

[Ozimum]

Last year I tried 5-HTP, and Gaba, for my dd, and they did NOT work out- (and I wanted them too.)

One of the PANDAS Docs I consulted told me that these 2 things work on different areas of the brain, and he was not surprised we had negative effect- he recommended Taurine instead.

For us, gut is an issue. Been working on it for awhile. It's a tough one.

By the way, we do 1 mg. Melatonin before bed every night, and she sleeps well (hasn't always, of course, had our share of controlling thoughts ruling her for months on end.)

The 1 mg. melatonin works just fine for us.

It's a tough one, I agree. The challenge is working out why the gut isn't working as well as it should. Hang in there!

Edited March 13, 2011 by Ozimum

[SSS]

I guess I tend to look at my dd's gut issues, and her PANDAS, as 2 very separate things- although it is often quoted 80% of the immune system is in the gut....

We have the classical leaky gut over here- how it came to be, I don't know (aggressive US vaccine schedule as infants, my own gut while pregnant, who knows for sure)

Dysbiosis led to food intolerences- we are GF/CF/SF- when we pulled those 100%, her willingness to eat a variety of food opened up (to eating protein.)

[Ozimum]

We had no idea that ds had leaky gut until he hit crisis point...and he went PANDAS with strep throat. I'm tending to think they're related, at least in his case. Stool screening found that he had virtually no E.coli (should be 70-90%) and an overgrowth of strep, staph and clostridia. A researcher here is saying that E.coli in the gut produces chorismate acid, the precursor to tryptophan, among other things. With that in mind, our Biomed started ds on a protocol to deal with the overgrowth and also to replenish the E.coli, as well as diet and supplements. So far so good! Who knows what set it all off...?!

Glad the diet is helping. I'd never have believed it had I not seen it with ds.

Edited March 14, 2011 by Ozimum