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I'm ready to jump out of the window. How can this be...


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My ds 7. As I have posted, did beautiful after his IVIG 6/13/2013. A couple of small bleeps on the radar, but seriously, 10 of the first 12 he looked like the poster child for "a well balanced kid". I thought we were done. Then week 12, a 3 day flare. Then done. Two weeks later, last week, I had the school calling.....Oh yes, It took 2 teachers and the school psychologist to keep him in his chair. Acted like a nut job. Yelling, telling adults to get out of the room, rage, motoric movements off the chart. Banging his head on his desk....ugh..never saw that before. By the next day, normal. Just beautiful for 4 more days. Today? Same stuff. Although today, he took it out on his classmates. Telling them that he hates them. That he is going to kill them. Really? They had to remove him from the classroom. Lucky for me, today was early dismissal. For the last 6 hours, it has been . He is just out of control. Taking exception to everything and everything and all the same stuff. Made DAd take them to Karate.

 

I am crushed. How can this be? Yes, I had stomach flu last week, and his teacher had strep. But HE did not get sick. Had him tested. I know about the exposure theory....but by God, how can a child do so well, and then do so bad. Spoke to Dr. K, his pediatrician, doc friend at Chidren's whom has been converted by watching my child's journey...Maybe it is something else? I ask? They all feel that this is the only thing that fits the situation. Pandas.

 

Really? I mean Really? I just don't know how much more I can take of this.

 

Yes, I am being a Drama Queen. I am just so fed up.

 

There. Done venting.

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both of our kids just went through an exacerbation. ds has cold symptoms, dd nothing but PANDAS symptoms.

One important thing did happen with your ds, it lasted only one day. then he was ok. if symptoms came back the day after next, it could be a different virus.

my assumption is that if you see improvement over time in lessened intensity or extent, then you can call it improvement. and also, better measure will be a year after you did IVIG. looking back, you'll be able to say if it worked.

I assume that you are doing methylation supplements. I think I remember you posting about the importance of diet.

and no you are not being a drama queen, not in my book anyway.

all the best

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I'm so sorry to hear all you have been through. Is he in any other meds? We are dealing with med reactions now as you've seen. Can you ask the school to take careful notes to help figure out if there are any specific triggers? I'm also thinking a neurological eval might be a good idea. Has anyone seen this irradic and sporadic behavior associated with IVIG before?

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What freaks me out is that he also seems to fit the bi-polar diagnosis. Feel free anybody to discount this as I feel I'm just panicking right now. I don't see any real lows...but coming off his episodes, in retrospect, I remember thinking he was a bit melancholy....although...after a pandas episode, anything other then constant motoric driven activities with rages can look like the other side of the spectrum.....confused.

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sounbds like PANDAS to me.

have you tried using advil regularily for a few days. I would do that for sure.

So if Dr K thinks it is PANDAS, what did he suggest?

I imagine he would not jump into another IVIG at this point, but maybe steroids?

PANDAS can certainly look bipolar.

and psychotic.

and defiant.

and like a parent who does not "control" their kid.

and it can just look like a little eye twich sometimes. No wonder we are all exhausted from chasing and trying to squash it all the time.

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My DD had "bipolar" symptoms that had nothing to do with Pandas and everything to do with methylation. Her dramatic stabilization since addressing MTHFR and other genes is what's made me such a fanatic about the topic. I'd check his aso titers but if you don't feel it's infection related, perhaps consider methylation. BTW - mold also sent my DD into a tailspin. All of our window a/c units hadn't been cleaned in years and mold had built up in the drip pans. All summer last year, I was blowing mold spores into the house. It added to her struggles. Since it's fall, that could be a factor. Or if he's in a new classroom, there could be mold from water damage that no one has addressed. But from what you describe, it reminds me of my DD before we addressed methylation.

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In right there with you. I'm constantly wondering if DS is bipolar. Our pandas doc reminded me that my DS responds to Motrin. If you took a true bipolar kid and gave them Motrin if wouldn't help the episodes if rage, ect. But I still do contemplate the same thing, especially since he didn't tolerate SSRIS which is common with BP.

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We had this with my daughter after her first IVIG. She did really well right after the first IVIG then deteriorated a few months later after an illness. So I will give my advice based only on my experience. If you aren't currently giving a treatment dose of antibiotics then increase the dose of antibiotics immediately. I understand he didn't show positive, but Dr. Murphy told us that just the exposure will set off the same cascade of events in the body as actually having the infection. You may even consider changing the antibiotic. Also, if it has been 3 months post IVIG you can consider a steriod burst. If it hasn't been 3 months, your physician may be cautious about steriods due to their impact on the immune system. If less than 3 months be aggressive with ibuprofen three times a day. Give the highest dose allowed by body weight. Do this for at least 2 weeks. Steriods are preferred if allowed.

 

On the topic of his bipolar diagnosis.....I'm sure you have considered the fact that this could be a mis-diagnosis and simply symptoms of his PANS flare. I know that there have been several times that my daughter could have met the criteria for a bipolar diagnosis. This was the case during her worst PANS flare and when things calm down those symptoms disappear. It was specifically the reason we stayed away from psychiatry in the early days. I wanted to focus on the cause instead of the symptoms. I'm sure you know your son best. Just throwing that out there.

 

I am so sorry you are going through this. Sounds very difficult to handle. Hopefully things will settle down soon. Stay determined in addressing it. Sounds like you are on top of things. Best of luck.

 

Dedee

Edited by Dedee
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Hi sorry you are going through this. I've had these types of days myself. Did I read correctly to see that you had added a new supplement and then saw the behavior? If that's a yes then I would definitely discontinue it. Also have you considered Bartonella, which can exist without Lyme, and can definitely cause this type of behavior? It can also cause tics and OCD. It is spread not only by ticks but many kittens/cats are infected along with lice and fleas who also spread it. It is very hard to test for. Can cause these symptoms, rashes, stretch marks and foot pain. I used an herb from Nutramedix called Burbur to calm Bartonella flare ups like this. Five drops in water. It worked within 30 minutes. I would say if you try Burbur and it works then its worth considering a Bartonella evaluation with an LLMD. Sorry I can't recall if you have done that already. My DD has never tested positive for Bart but had symptoms so we treated and symptoms went away. Hang in there

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Is there any reason you are not considering another round of IVIG if this continues? My son is a pretty severe case, but because he was so young (2 yo) and his chronic strep history, we waited about 4 years from onset to finally pursue IVIG - partially trying to determine the cause of his constant strep infections every 6-12 weeks for 3 1/2 years! We finally pulled the trigger. Because of his history and how long we waited for IVIG, Dr. B, Dr. M, our ped and our local immunologist all warned us that it may take more than 1 to get him back. Dr. B suggested starting at every 8 weeks and go from there. He got us 4 HD treatments approved by insurance over 6 months. Within 48 hours of his first infusion he was 100%. His sister tested + for strep 2 weeks post infusion and we didn't even see 1 symptom out of him! It was wonderful. I scheduled his next infusion (accidentally) at 12 weeks instead of 8. Like clockwork, around week 8, he started to deteriorate. It wasn't as severe as he was pre-IVIG, but we saw many of his OCD and ADHD tendencies creep back in. After his 2nd infusion - 100% again. We were careful to schedule his next one right on target. And like clockwork, at week 7 he started to flare (his sister had tested + for strep the SAME DAY he had his first episode of throwing chairs at school.) We think he fell off earlier than the last time because of his sister's strep, but his infusion was scheduled for the next week, and just like the previous 2 - the symptoms revolved fairly quickly after the infusion. (My daughter got her first infusion at that same time, and is not quite 100%, but easily 85-90% better now.) We now have insurance approval for him for another 4 treatments for him over 6 months, and at this point plan to continue that pattern for at least that timeframe, before we decide to back off entirely, or slowly increase the time between infusions.

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I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unless you need it to get help/treatment. And while I am not exactly enamored with the psychiatric profession, I do think most PANDAS kids would benefit from the support of a PANDAS-knowledgeable pdoc on their team. The only problem is actually finding a pdoc who has a clue about PANDAS.

 

As for bipolar, I was diagnosed bipolar as a young teen. Looking back now, I realize I had PANDAS. My "bipolar disorder" disappeared when I went on antibiotics for 2+ years for acne. When I grew past my pediatric years the so-called bipolar faded away completely and never came back. I think I was one of the lucky ones who outgrew PANDAS. I'm desperately hoping the same for my son!

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