bubbasmom Posted November 16, 2009 Report Share Posted November 16, 2009 Since the P stands for pediatrics, I'm curious if anyone that still visits this forum has a child that has past the pediatric stage and this just goes away? My other thought is, just what makes this a pediatric event? Does it have to do with post-puberty children not getting strep, or does it have to do with hormones developing during puberty? My son is 12, I guess I'm a skeptic, even though he had IVIG three weeks ago, I just will never be comfortable. I will always feel like we are one infection away from PANDAS. Even now, I'm not even sure the IVIG worked. Will I EVER relax again? My son gets serious serious, life threatening RAGE with PANDAS. Right now he's 12 and 140 pounds, I can't imagine him being 15 or 18 and maybe 200 pounds and me try to physically restrain him. Link to comment Share on other sites More sharing options...
peglem Posted November 16, 2009 Report Share Posted November 16, 2009 I think the "pediatric" part of it just means pediatric onset. Seems like there have been a few here who have been through it in childhood and don't have many problems with it in adulthood. The studies aren't there. Personally, I think adult onset would most likely be dx'd as schizophrenia. My hub has some relatives..... Link to comment Share on other sites More sharing options...
bubbasmom Posted November 16, 2009 Author Report Share Posted November 16, 2009 Please don't tell me you think this goes on past childhood! I can't handle that. I thought they had told me pediatric meant he'd outgrow it. I think the "pediatric" part of it just means pediatric onset. Seems like there have been a few here who have been through it in childhood and don't have many problems with it in adulthood. The studies aren't there. Personally, I think adult onset would most likely be dx'd as schizophrenia. My hub has some relatives..... Link to comment Share on other sites More sharing options...
FallingApart Posted November 16, 2009 Report Share Posted November 16, 2009 I have no scientific background for this but I have also had the term schizophrenia cross my mind many times during all of this. Does anyone know if they are actually related? Link to comment Share on other sites More sharing options...
dut Posted November 17, 2009 Report Share Posted November 17, 2009 Dopamine certainly seems to play a role in both PANDAS and schizophrenia. Off on a schizophrenia tangent but I read about this the other day... http://www.sciencedaily.com/releases/2009/...90311085151.htm Link to comment Share on other sites More sharing options...
peglem Posted November 17, 2009 Report Share Posted November 17, 2009 I think there just isn't enough info out there yet to get a good answer to that question. I hope its a "grow out of it" thing- but I haven't got any evidence that that is the case. I think if it goes untreated in childhood, it will continue into adulthood....just my thoughts though. Just mentioned the schizophrenia thing from a very personal, completely anecdotal observation that has no science whatsoever backing it up. My hub's sister has a schizophrenia dx...and I was around for 3 episodes of complete batpoop crazy breakdowns. I didn't know her when she was a child...so don't know anything about that. But, every one of her really crazy (I'm talking about very scary psychotic episodes here) "breakdowns" occurred during, or shortly after upper respiratory illnesses. I've often wondered what would have happened if they'd just given her high dose abx, though it would have been very dangerous to leave her w/o psych meds. Anyway, she has been stable on psych meds for the last 5 or so years. When she's not nuts, she's a terrific person! Even on meds, though, when she gets ill she still gets a little crazy. Not stark, raving, call the white coats crazy, but you can tell she's a little "off" - kinda fuzzy headed, out of touch, can't concentrate sort of thing. She says she hears voices when she's ill, but now that she's on the right meds, she knows they're not real. I don't know if it has anything to do with PANDAS... Link to comment Share on other sites More sharing options...
dabel Posted November 17, 2009 Report Share Posted November 17, 2009 Your son sounds like mine. He is also 12 and has rages that I am not even capable of describing. I am surprised that you are still able to restrain your son because I can't. He has many other symptoms as well. It is VERY dangerous for all involved! My son's psychiatrist told me a year ago when he was inpatient for being homicidal that he had never had a child like mine and thought that this could be the beginning of schizophrenia! Thank God I kept searching! They wanted to put my 11 yr old child on lithium. I politely declined and kept digging for the root of the problem. I am so glad that all of the parents on this forum have continued to search for the cause not just treat the symptoms. I was told that my child would not outgrow this because of the length of time he has had it, the severity, and his stage of puberty. It was explained to me that if it was not treated quickly and he went further into puberty (he hit puberty quite early) that this would be hard wired in his brain and he would be stuck with it. My son is scheduled for IVIG in a couple of weeks. I pray that this is the answer but I'm scared that it could come back too. Is your son showing any signs of healing? DeAnn Link to comment Share on other sites More sharing options...
FallingApart Posted November 17, 2009 Report Share Posted November 17, 2009 SO I have spent most of my stolen moments this afternoon looking at childhood schizophrenia. On schizophrenia.com there is a lot of good info. They also mention all the different illnesses that should be ruled out before you get to a schizophrenia diagnosis and they actually mention PANDAS on there. But for some of us who have super extreme cases, I am wondering if it is possible that we could get a PANDAS diagnosis when there might be something else/in addition to the PANDAS diagnosis. Things are so incredibly bad over here that I am just wondering if there is even more to this than "only" PANDAS. I have no idea if it is schizophrenia or if there is actually anything else. Maybe we just have one of the most extreme cases... Link to comment Share on other sites More sharing options...
dcmom Posted November 17, 2009 Report Share Posted November 17, 2009 Falling apart- I am so sorry to hear things are so bad. Has your dd recovered from the flu yet. Julia had it, and something is happening, I am definitely seeing pandas issues. Possibly that is why you never saw improvements from the pex. Did you consider steroids again? I am waiting on an okay to go ahead with steroids if this continues.... Hang in there... Eileen Link to comment Share on other sites More sharing options...
peglem Posted November 17, 2009 Report Share Posted November 17, 2009 dabel, We were desperate enough to try lithium- it made things worse, but back to our "normal" afterwards. She was only on it for a week. Link to comment Share on other sites More sharing options...
FallingApart Posted November 17, 2009 Report Share Posted November 17, 2009 So, Peglem, did it actually help in the end then, or would you have gone back to "normal" regardless. Dcmom, I am so hopeful that it is the flu that is masking any PEX benefit. But it is hard ot hold out hope still. I am still hanging on though. I will for a month. Link to comment Share on other sites More sharing options...
peglem Posted November 17, 2009 Report Share Posted November 17, 2009 So, Peglem, did it actually help in the end then, or would you have gone back to "normal" regardless. Dcmom, I am so hopeful that it is the flu that is masking any PEX benefit. But it is hard ot hold out hope still. I am still hanging on though. I will for a month. The lithium did not help- I meant we went back to the pre-lithium normal, which was still desperate. Just wanted you to know that it didn't cause any permanent "worse". Link to comment Share on other sites More sharing options...
Megs_Mom Posted November 17, 2009 Report Share Posted November 17, 2009 SO I have spent most of my stolen moments this afternoon looking at childhood schizophrenia. On schizophrenia.com there is a lot of good info. They also mention all the different illnesses that should be ruled out before you get to a schizophrenia diagnosis and they actually mention PANDAS on there. But for some of us who have super extreme cases, I am wondering if it is possible that we could get a PANDAS diagnosis when there might be something else/in addition to the PANDAS diagnosis. Things are so incredibly bad over here that I am just wondering if there is even more to this than "only" PANDAS. I have no idea if it is schizophrenia or if there is actually anything else. Maybe we just have one of the most extreme cases... You are a great parent - I know how hard it must be to consider this, nevermind to write it. The reality is that there is no reason that a child cannot have a problem, that is then overlaid by PANDAS, and dramatically increased as a result. Letting this possibility in is just smart because you want what is best for your child - and ultimately no one knows them like we do. But I will pray and hope that this is "just PANDAS" and that you will see results soon. We have only had to use Zith, but I am a big believer in the high levels of Augmentin as well. I hope something works for you very soon. We also wondered if we were losing our child in our darkest moments. Keep strong, and try to take care of yourself as well. I so hope to hear a positive result soon. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted November 17, 2009 Report Share Posted November 17, 2009 Falling Apart: Didn't you mention that you had 31 great days in between IVIG's? I am just wondering if you may need monthly IVIG's? My thoughts are with you...... This is so hard for the whole family!! Elizabeth Link to comment Share on other sites More sharing options...
michele Posted November 17, 2009 Report Share Posted November 17, 2009 Falling apart, Did you try the steroid burst and how did it go if you did? I have to say we have just added Prozac to his Risperdal and my son is finally settling down for the first time in awhile. The steroids never did improve him much. We were definately PANDAS in the beginning with the waxing and waning of tics and behaviors wih strep and fevers, but now I wonder if his PANDAS has progressed into a mood disorder or aspergers. My son also has opposite reactions to medications. Last month we tried klonipin which is like vallium and he was more hyper and mean. All stimulants made him worse. He has been angry and having meltdowns for sometime. Also he is hyper and has trouble focusing. The prozac and risperdal are really helping with both! I am thinking it is going to be awfully hard to get rid of this for good after 7 yrs on and off and things have only stayed worse with time. Antibiotics we have been on never really improved anything either longterm. The PANDAS adults I have spoken with on web blogs never outgrew it completely. Tha is why Sammy's recovery is such a mystery to me. I do wonder about the schizophrenia or mood disorder connection and if research has been done longterm on the likelihood of them with PANDAS. Good topic for discussion. Michele So, Peglem, did it actually help in the end then, or would you have gone back to "normal" regardless. Dcmom, I am so hopeful that it is the flu that is masking any PEX benefit. But it is hard ot hold out hope still. I am still hanging on though. I will for a month. Link to comment Share on other sites More sharing options...
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