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Ok, I'm have absolutely no idea if what I'm doing has an effect. My DD has been raging or would have intence crying episodes and I've calmed down from my panic enough to notice the times over the course of her antibiotics. She raged about every 4-5 hours and averaged 3 times a day within the 1st hour of waking up. I would give her ibuprofen 600mg, if I could get her to take it or quercitin first in the morning after we got something in her tummy. And 50 mg of Benadryl at bed time to help her sleep through the night. For the most part I think this was effective or at least not as intense as the fist part of the year Jan-Feb. It may also have been the same and I was just more overwhelmed as it was a bit of a shock. So yesterday I decided not to give her any ibuprofen mostly because she was refusing in the morning so I though she might be right and it's a good idea. Then I decided not to give her any Benadryl and she made it through the night without any sleeping problems. This morning she awoke more aware than she has been over the past month. I'm hoping the raging is starting to subside. Because it's Motherday, I was cooking in the kitchen and an episode started to hit her again. I've learned that letting her self manage with encourgement is way better than just restraining her from chocking herself and pulling her hair out. Apppearently just blocking her arms is enough she is much less combative which keeps her from going into a full rage and. Although I still have to be on guard. At the time for the next eposide she was doing her OCD thing and I decided I would try and break her mode before she went too far. It seemed to work she went through the time period with out any mood swings. So I'm wondering if this is what is meant by Cognitive Behavioral Therapy? i.e. Changing thier thinking behavior to something else. Also I'm wondering if this is what it is then why wouldn't hypnoTherapy work as well?

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Update: It worked but then didn't work. I was able to delay or skip a cycle but not keep it from happening. We had a lot of fun playing and DD tried her best to control her outbursts in her bed. She is staying by her bed always now. "My heart breaks when she is screaming, “I can do it anymore! I want to change my life! LEAVE ME ALONE!" I think I lost 5 lbs from this last episode. The stress is exhausting. I did not have to restrain her but she was going absolutely berserk. I gave her pieces of paper to tear because seems like it helps as a form of venting. During her first onset, back in November, she would run and break things. Tearing paper is much better than breaking windows.

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Sorry if I asked you this already, are you dealing with bartonella? Have you tried burbur from nutramedix?

 

I'm sure we haven't checked for bartonella. would it have shown up on the bacteria discovered in her urine or does the labs have codes for it? Also shouldn't the Augmentin/Amox have cleared it out? What does burbur do?

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Bartonella is frequently a cause of raging. It is a Lyme co-infection but is also transmitted by fleas, lice and cats - a simple scratch from an infected cat or kitten can do it. I will send you some links later today. It is also called cat scratch fever, however as with Lyme what's on the internet says it can be cured in 30 days which has not been our experience. The first line of treatment is typically Rifampin/Doxy or Rifampin/Zith. I am not sure how Burbur works, it is used for detox, but in our case it has really helped with rages. Bartonella tests may be negative even in an infected person. The most accurate test for Bartonella seems to be from Galaxy labs but you need to be off abx for 4 weeks to try it. Typical symptoms from Bart are raging, long bone pain, foot pain (especially upon waking), visual disturbances, and purple stretch mark looking streaks. Augmentin/Amox do not address Bartonella as far as I know.

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DD is mostly not able to articulate how pain, othen than my tummy or head hurts. By visual disturbances would light or obsessing over the position of a window shade be a disturbance? DD has a small dog so.i immagine she may have gotten bit or scrached especially when she is in a naughty mood and wants to pull his tail. So uncharacteristic of her because she normally is super sweet. DD will be retested again I'll ask Dr. B to include stuff that can come from bug bites and dogs.

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Do you know what her infectious trigger is? Are you treating strep, lyme, myco p? How long has she been on antibiotics? It does sound like she could benefit from CBT / ERP. It takes a trained professional to help your family institute that process. It isn't easy to get started but the results are amazing. If it is OCD that is starting her rages (and many times it is), she desperately need some coping skills to help her deal with those urges. There are a couple of really great programs, one is USF/ Rothman in Florida and another at the Cleveland Clinic in Rochester, Minn. Several families on this board have been through these programs with life changing results (including my family). It's worth considering.

 

Dedee

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Do you know what her infectious trigger is? Are you treating strep, lyme, myco p? How long has she been on antibiotics? It does sound like she could benefit from CBT / ERP. It takes a trained professional to help your family institute that process. It isn't easy to get started but the results are amazing. If it is OCD that is starting her rages (and many times it is), she desperately need some coping skills to help her deal with those urges. There are a couple of really great programs, one is USF/ Rothman in Florida and another at the Cleveland Clinic in Rochester, Minn. Several families on this board have been through these programs with life changing results (including my family). It's worth considering.

 

Dedee

 

We haven't gotten a definitive for her infectious trigger. This is the second time she has had rages, the first we did know anything about infections and we went through about 3-4 months of them before we noticed her inflamed throat and got her a prescription of amox. She was pretty much rage free with odd anxiety attack or emotional liability after the antibiotics for two months. We were able to take her bowling a few times but she still has anxiety with large crowds. I think you may be right about CBT and ERP we are still waiting for more tests and recommendations from her assessment by UCLA.

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DD is mostly not able to articulate how pain, othen than my tummy or head hurts. By visual disturbances would light or obsessing over the position of a window shade be a disturbance? DD has a small dog so.i immagine she may have gotten bit or scrached especially when she is in a naughty mood and wants to pull his tail. So uncharacteristic of her because she normally is super sweet. DD will be retested again I'll ask Dr. B to include stuff that can come from bug bites and dogs.

By visual disturbances I mean double vision, blurry vision etc. Dogs can carry ticks and fleas but I don't think they transmit Bartonella the way cats do. Just use tick protection for your dog and check for ticks. Dr. B. is familiar with Bartonella and how to treat it. Good luck with everything I hope you get some answers.

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Does she have "stretch marks" anywhere on her body. Typically, they would be deep purple or red, and if so, they may be a bartonella rash instead. Check out these pictures for examples: http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=27:bartonella&Itemid=331

 

Also, does she have foot pain (mine was the bottom of my feet, and particularly when I awoke in the a.m.) This is another symptom of bartonella.

 

Additionally, mycoplasma pneumonia and babesia can make one rage. Symptoms of babesia include low WBC, elevated liver enzymes and enlarged spleen.

 

Sounds like she may be herxing very badly, and you may need to cut back on the abx, and increase detox to allow her to not herx quite so badly.

 

Godo luck.

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I am not sure if I mentioned this previously but we have at least 5 Dr.'s in the Bay Area that treat PANDAS/PANS. 4 are extremely versed at looking for all of the potential chronic infections (definitely the rage component), understand mold, environmental toxins, heavy metals, detox, methylation, genetic testing, implications of yeast/gut issues, etc. 4 of them are considered integrative and 2 of those Dr.'s will prescribe hdIVIG if needed. The other Dr. treats similar to Dr. B in CT but also has an interest in the inflammation aspect for PANDAS/PANS.

 

I am sure you have a comfort level for Dr. B but it is a long flight to CT. If you ever need a second opinion or would like to save the time, energy and money from travel back east please feel free to PM. I can also connect you with others seeing these particular Dr.'s.

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I know we are talking about treating the infections on this thread, but what led me to

pay cash for 2 high dose IVIG's, administered 6 weeks apart,

was the very real component of 'PANS'

that was the

'Exorcist Rage Episodes'

Before our IVIG's,

it was this issue that scared me senseless.

If I was home alone when these rage episodes occurred, my dd was out of her body and mind,

and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP.

At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic.

I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called.

After this happened twice, I refused to leave the house with her without another adult.

Shortly after, we did HD-IVIG.

I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results)

I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed'

wore off when the IVIG wore off (6 weeks later)

BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.

Edited by S & S
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Wow! I really appreciate all the responses. Yesterday morning was her last rage. She has now past 6 times without a rage. She has had some emotional swings but only a little brain fog. The last three days I have just been giving her Quercetin rather than ibuprofen. It's been a heat wave here and she actually wants to go outside for a shaved ice cone. She is laughing again. Our little girl has started coming back. We actually made it to and from the shaved ice and fruits restaurant where there was a small crowd and she had no anxiety. This is simply amazing! She refused to eat anything I think because she is scared to have a reaction. She only eats rice and fish and now won't touch sugar or bread. Even if mom and dad want to let her try. Let's see how she sleeps and if she can make through another morning.

 

Update: Mom with DD's Aunt wanted to take DD on another short trip and DD was so excited. She changed right away and was ready and waiting for mom and aunt to be ready, but it was taking way to long DD was waiting for an hour and started getting anxious. As she started with her motor mouth routine it was obvious she was trying to control herself from out bursts but for the fist time aside from constantly repeating a word she had a verbal tic, that sounds like a honk, during a mild anxiety attack that turned into a crying session. This only lasted about 10 minutes. DD calmed down and one hour later they are off on their trip. I wished mom would wait for a while longer before riding the horse but that ain't going to happen.

Edited by 4Nikki
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I'm new to the forum, and we're desperately trying to find drs that treat PANDAS/PANS in the Bay Area. We on a wait list to see someone at Children's Hospital Oakland in 6 months. Our Ped doesn't believe in PANDAS/PANS so we can't get the needed referrals to see the group in Stanford. Would you mind PMing me the name of the 5 MDs you know of.

 

thanks.-

 

I am not sure if I mentioned this previously but we have at least 5 Dr.'s in the Bay Area that treat PANDAS/PANS. 4 are extremely versed at looking for all of the potential chronic infections (definitely the rage component), understand mold, environmental toxins, heavy metals, detox, methylation, genetic testing, implications of yeast/gut issues, etc. 4 of them are considered integrative and 2 of those Dr.'s will prescribe hdIVIG if needed. The other Dr. treats similar to Dr. B in CT but also has an interest in the inflammation aspect for PANDAS/PANS.

 

I am sure you have a comfort level for Dr. B but it is a long flight to CT. If you ever need a second opinion or would like to save the time, energy and money from travel back east please feel free to PM. I can also connect you with others seeing these particular Dr.'

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I wouldn't waste your time with Children's Hospital in Oakland. I only know of one sympathetic Dr. and not sure she has treated many PANDAS/PANS kids.

 

Dr. Lynn Mielkie in Pleaston is the closest. She is very familiar with PANDAS/PANS and knows all the tests to run. http://www.developmentalspectrums.com/

 

There are others but one is north in Petaluma. The other 3 are at Stanford or near Stanford. We have a decent network of parents in the Bay Area and you are always welcome to PM through the forum (upper right hand corner of screen) if you have further questions.

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