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looks like I am back in the "club"...


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Giant thank you to all who offered so much support to me after our visit with Dr L. We have since consulted with Dr T and he tells me this "club" is exactly where I belong. He has confirmed a diagnosis of PANDAS (classic onset at age 6-7) that has now broadened into a somewhat complex PITANDS situation. We are still going to follow up with the neurolgical testing recommended by Dr L, but Dr T is going to run some more labs to dig into my son's immune system a bit further to see if we can find any specific trigger. Also met with our psychiatrist and therapist, neither one of whom feels my son fits the bipolar criteria. Our therapist in particular is excited about Dr T's "exorcist" observation as a neurological storm of fight or flight chemicals released as he feels this very accurately describes my son's experience. He observes that my son is able to manage his obsessions when he is healthy, but not when sick. And he seems to be ALWAYS sick this year. To me, it's as if the virus/bacteria enters his system, we have this rage/terror attack and then a few days later the physical symptoms show up. As is his pattern, my son had another one of the "exorcist" episodes on Sunday after going 8 days without. And yesterday - sick AGAIN!! THis time looks like a cold (congestion, hacking cough, no fever). I'm assuming its viral since he's been on Omnicef for a month, and am hesitant to drag him into the ped. only for her to frown at me and tell me it's viral.... I wish I could figure out why he having so many upper respiratory problems this year!!! On the bright side, he is calm, as usually when the illness hits he feels so icky he can't muster up the energy to do anything much but whine... Thanks again to all (especially Dr T!) for your help and support.

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Giant thank you to all who offered so much support to me after our visit with Dr L. We have since consulted with Dr T and he tells me this "club" is exactly where I belong. He has confirmed a diagnosis of PANDAS (classic onset at age 6-7) that has now broadened into a somewhat complex PITANDS situation. We are still going to follow up with the neurolgical testing recommended by Dr L, but Dr T is going to run some more labs to dig into my son's immune system a bit further to see if we can find any specific trigger. Also met with our psychiatrist and therapist, neither one of whom feels my son fits the bipolar criteria. Our therapist in particular is excited about Dr T's "exorcist" observation as a neurological storm of fight or flight chemicals released as he feels this very accurately describes my son's experience. He observes that my son is able to manage his obsessions when he is healthy, but not when sick. And he seems to be ALWAYS sick this year. To me, it's as if the virus/bacteria enters his system, we have this rage/terror attack and then a few days later the physical symptoms show up. As is his pattern, my son had another one of the "exorcist" episodes on Sunday after going 8 days without. And yesterday - sick AGAIN!! THis time looks like a cold (congestion, hacking cough, no fever). I'm assuming its viral since he's been on Omnicef for a month, and am hesitant to drag him into the ped. only for her to frown at me and tell me it's viral.... I wish I could figure out why he having so many upper respiratory problems this year!!! On the bright side, he is calm, as usually when the illness hits he feels so icky he can't muster up the energy to do anything much but whine... Thanks again to all (especially Dr T!) for your help and support.

 

Boy, am I happy for you, if that makes sense. I can hear the hope in your words. He's a great doc, no question about it and who knows what he'll dig up when looking more closely at his immune system. You have direction and that's so important. By all means keep us posted. I'm sure sorry he's feeling crappy now but hope the downtime can supply you with some peace and time to focus on the answers that are surely coming.

 

Gat's mom

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I'm sure you'll figure out a lot from the immune blood workups, but all the infections could be allergy driven. The IGE results will prove or disprove this situation. My sons IGE were really high and he always had upper respiratory and sinus infections... and ear infections (thank goodness for ear tubes) And I was thinking like Vickie, the Mycroplasma P.

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What is IGE? Is this different than basic immuno stuff? We had the basics done, as well as allergy testing - all fine.

 

I'm sure you'll figure out a lot from the immune blood workups, but all the infections could be allergy driven. The IGE results will prove or disprove this situation. My sons IGE were really high and he always had upper respiratory and sinus infections... and ear infections (thank goodness for ear tubes) And I was thinking like Vickie, the Mycroplasma P.
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WELCOME BACK

 

I guess???I think there are worse clubs you could belong to lol

 

Melanie

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We did an immune IG panel to see if my son had any definciencies with his immune system (Immunglobins). IGA, IGG and IGE. If these numbers are low, then his immune system could be compromised. IGEs are related to allergens and your body fighting off the foreighn substance. If this number is high, then the immune system is having an allergic reaction to 'something' and working hard to get rid of it. With Panda kids, it seems you want to have a strong immune system and keep it 'calm'... easier said than done. There are many topics on IG testing and results... I don't have any links to refer you to, sorry.

 

It sounds like Dr. T will be going this route.

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The "exorcist syndrome"... did Dr T say which chemicals are released? norepinephrine??? Any other way to stop this other than antibiotics / or big pharma drugs?

 

Our son gets these too. Used to be several times a day, now it is occasionally since antibiotics, but just horrific! Sort of look like seizures!

 

Laura

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My son also has high IgE levels. His are in the 450ish range. He never actually had symptoms of allergies. How are you working on you child's IgE levels to bring them down? I am nervous about doing any allergy shots since we just did IVIG.

 

Elizabeth

 

Hi Elizabeth,

The dreaded Allergy Shots is the recommendation from our immunologist, who works with our Pandas Doctor. Our Allergist is local and not familiar with Pandas, but I gave him lots of information to read. We already knew my son was extremely allergic to seasonal stuff b/c we had him tested him 4 years ago when he started blinking a lot and I thought he had itchy/dry allergy eyes. No one told us after 4 doctors that his blinking was an eye tic... urgh. Anyway he is allergic to pine, oak, mites, molds, etc. When I explained to the allergist that I don't want to aggravate his immune system and I'm nervous about his pandas symptoms returning and we need to keep his system calm. He looked me straight in the eye and said does your son's 300 score on the IGE show his immune system as calm? I knew he was right... the answer was no. So we started him on daily Veramyst and shots this past Friday. We go twice a week and he has 2 shots per visit. My immune doc said give it 6 months. So that's the plan.....

 

Like I said before, he has strong IGs in the other subsets, so I feel okay about this decision.

 

I know every test has different ranges, but if your 450 score was flagged high on your test, then there is an allergic reaction going on somewhere... his body is trying to fight something... it could be seasonal or food related?

 

Shannon

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Glad you're getting things sorted out. Is Dr T aware of the hacking cough? Are you taking him to a ped to listen to his chest. I'm starting to get "Mycroplasma P" paranoid about all these kids!

please help me understand how mycroplasma p affected other pandas children. my daughter had it in the fall and symptoms did increase. any info will help Thanks

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Mycro P has gotten a lot of attention here lately. It seems some cases of PANDAS may actually be caused by having Mycro P as the original trigger. Granted, it would them fall into the PITANDS catagory more, but I still group them together. That's why it has been talked about here more. A few recently have had blood tests show their child have/had it. Some w/o symptoms. Then more have started to mention a hacking cough (w/o the mention of why they have the cough). My non-PANDAS son was dx with it a couple weeks ago and, hence, why I am paranoid.

 

If the child has PANDAS with the original trigger of strep, they could then begin to have PANDAS symptoms surface with other infections. As is the case with my PANDAS son. Whether they be viruses, allergies, sinus infection, the list goes on. So, honestly, I would not be surprised if a PANDAS child contracted Mycro P and had a PANDAS exacerbation as a result of it.

 

What med did she go on and for how long? How are her PANDAS symptoms now? Did they improve in the weeks following the Mycro P infection or have they not gotten better? Is she currently on any abx?

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Vickie:

 

have not taken my son to the ped yet. She has not been very helpful and I am so tired of hearing the "its probably viral". Dr T plans to test for Mycro P soon so I am going to wait on this unless this cough gets worse or does not remit in the usual 7-10 is my current feeling.

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