browneyesmom Posted February 18, 2011 Report Share Posted February 18, 2011 Full blown OCD/rage episode here; she attacked me again... got Risperdal emergency dose in her quickly as I could, got the dog out of the house and locked myself in the bedroom... thought she might actually break down that door a couple times. This one only lasted about 15 min, I guess, but given yesterday and today, it's crystal clear we are due for another IVIG... 5 more days. These rages are tough... I am literally shaking inside after they are over. So. Completely. Out of character for her. I don't think she realizes what happened - seems she lost about 45 min there... unless she asks me directly, I'm not going to tell her this time either. It's all I can do not to cry right now. Days like this, sometimes I am so scared wondering if I will get her back in one piece. Link to comment Share on other sites More sharing options...
peglem Posted February 18, 2011 Report Share Posted February 18, 2011 (edited) Full blown OCD/rage episode here; she attacked me again... got Risperdal emergency dose in her quickly as I could, got the dog out of the house and locked myself in the bedroom... thought she might actually break down that door a couple times. This one only lasted about 15 min, I guess, but given yesterday and today, it's crystal clear we are due for another IVIG... 5 more days. These rages are tough... I am literally shaking inside after they are over. So. Completely. Out of character for her. I don't think she realizes what happened - seems she lost about 45 min there... unless she asks me directly, I'm not going to tell her this time either. It's all I can do not to cry right now. Days like this, sometimes I am so scared wondering if I will get her back in one piece. Is she on abx? How often do you do IVIG? Edited February 18, 2011 by peglem Link to comment Share on other sites More sharing options...
Guest pandas16 Posted February 18, 2011 Report Share Posted February 18, 2011 When you say rage? what exactly do you mean? Link to comment Share on other sites More sharing options...
browneyesmom Posted February 18, 2011 Author Report Share Posted February 18, 2011 Yes, Dr. B has her on Omnicef 300 mg, twice daily. She is due back there at 28 days - next Weds for her next 2 day infusion... I am wondering if she needs 21 days at this point. We saw her declining about the same point after her Christmas hospitalization when she received her first HD IVIG. Link to comment Share on other sites More sharing options...
browneyesmom Posted February 18, 2011 Author Report Share Posted February 18, 2011 When I say "rage", I mean: Complete fixation on hurting me... usually includes any of the following: hitting, kicking, pinching, clawing (if she has any fingernails at all... fortunately, they are rather short atm), biting, spitting, pulling hair... did I forget anything? Oh, often she will tell us that she is going to kill us... in that guttural, sort of demonic voice. I realize probably everyone here on this forum is shocked by similar issues at their own house... just so totally opposite who she is/was... before PANDAS. She was the sweetest, most giving, loving and considerate child. Also, I am sick today and I suspect that it not helping... she may be reacting to my illness... I have a bad cold. Link to comment Share on other sites More sharing options...
laure Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Denise, Looking back at your earlier posts....did you get the results from Igenex yet? Because this sounds suspiciously like my daughter, who much to my surprise, came back positive for lyme, (after negative Western Blot on the standard Quest test). Big big difference, (those rages are gone) since treating for lyme since early December 2010. Link to comment Share on other sites More sharing options...
browneyesmom Posted February 18, 2011 Author Report Share Posted February 18, 2011 Hmm... no, actually we are waiting on the Igenex results. She tested negative via blood and spinal fluid, but my understanding is that Igenex is more sensitive/specific, so I'm eager to find out those results... as well as the myco and others. We drew them all at once. I hope they will have those when we get there next week for IVIG. I'm glad you mentioned that... I thought if kids had LD, the IVIG could make them worse. Is that correct? It is crystal clear that she improves with IVIG, so I was wondering about that. Regarding the rages... if anyone else is present, she will attack them as well... whoever happens to be there - including the dog. Today, I was the only one home with her when it began and I got the dog out the back door fairly smoothly... as these things go. Link to comment Share on other sites More sharing options...
nicklemama Posted February 18, 2011 Report Share Posted February 18, 2011 No words of wisdom, just support. I've been there. The raging was the first clue that something was terribly wrong w/ my son. Link to comment Share on other sites More sharing options...
browneyesmom Posted February 18, 2011 Author Report Share Posted February 18, 2011 No words of wisdom, just support. I've been there. The raging was the first clue that something was terribly wrong w/ my son. Thank you, my personal resources are spent right now and I deeply appreciate support! For us, the rages were also the first clue that there was a serious problem with her - I'll never forget it - early Jan 2009... just before she went back to school. She told me the day prior that she did not feel well when we were out walking and next day - BOOM! She was positive for strep - had not cleared an infection from before Christmas. Link to comment Share on other sites More sharing options...
Fixit Posted February 18, 2011 Report Share Posted February 18, 2011 Browneyes..i have not dealt with this. but wanted to say i am so sorry and understand wanting to break down... YOur a mom and that is your child. You are doing all the right things and it just might take a longer time than any of us like. Link to comment Share on other sites More sharing options...
peglem Posted February 19, 2011 Report Share Posted February 19, 2011 Yeah, I think the 1/2 life on the IgG proteins is @ 21 days, so maybe every 3 weeks would be better. Watch out when she's coming down from the risperdal- mine gets headaches that can send her back into meltdown. Ibuprofen helps. Link to comment Share on other sites More sharing options...
amyjoy Posted February 19, 2011 Report Share Posted February 19, 2011 HI Denise I can't help but think that with pandas there is of course the herx-y stuff from the treatments but also, the inflammation aspect, at the core of the symptoms, right? I always come back to that. Even if it looks like a child is having psychotic-appearing behavior, if its due to pandas then its due to inflammation, not chemistry, right? (NOt that a child obviously can't have both). But anyway it makes me think of doing major anti-inflammatory support. maybe as soon as the ivig starts to cycle out your daughter exhibits these symptoms due to the inflammatory rebound, just like the wearing off of a steroid burst. I would think, cytokine storm. Dr. schweig and i were thinking about this the other day with another child having severe reactions in between treaments. And with my son, that is always the direction I head when he has an increase in symptoms. Pandas is, by definition, inflammation. Does that make sense? Do you have anything you can use / are using for that? Link to comment Share on other sites More sharing options...
Megs_Mom Posted February 19, 2011 Report Share Posted February 19, 2011 HI Denise I can't help but think that with pandas there is of course the herx-y stuff from the treatments but also, the inflammation aspect, at the core of the symptoms, right? I always come back to that. Even if it looks like a child is having psychotic-appearing behavior, if its due to pandas then its due to inflammation, not chemistry, right? (NOt that a child obviously can't have both). But anyway it makes me think of doing major anti-inflammatory support. maybe as soon as the ivig starts to cycle out your daughter exhibits these symptoms due to the inflammatory rebound, just like the wearing off of a steroid burst. I would think, cytokine storm. Dr. schweig and i were thinking about this the other day with another child having severe reactions in between treaments. And with my son, that is always the direction I head when he has an increase in symptoms. Pandas is, by definition, inflammation. Does that make sense? Do you have anything you can use / are using for that? We did not have the kind of rages you are talking about - our dd was more inwardly directed, which presented it's own challenges, but my heart goes out to you. I'm glad you are doing the igenex testing, as I do tend to think more in a lymey direction when I hear about the intense rage. But that observation may just be because of the small sub-set of people I know. When our daughter had panic attacks, her instinct was flight, not fight. But I think we are describing a similar trigger. This may be silly, but other parents have observed similar things. When I first saw it coming (she changes colors, her eyes change, her lips change, I would almost say her facial structure changed - it was a very distinct look), we would ask her to eat peanuts - peanut butter was easier for her. It seemed to slow the cytokine storm that is referred to above. I did not know about Motrin at the time, now I would do both, but I am not sure I could have rushed the Motrin, as she was so severe re contamination. I carried nuts or peanut butter crackers with me everywhere we went. At the time, I thought it was a protein low or sugar low & kept having her tested for that, to no avail. Anyway, try the nuts - so long as she is not allergic , shouldn't hurt anyway. Hope today is a better day. Link to comment Share on other sites More sharing options...
KaraM Posted February 19, 2011 Report Share Posted February 19, 2011 I don't have any IVIG or other advice to offer - but just wanted you to know you are in my thoughts. Kara Link to comment Share on other sites More sharing options...
melanie Posted February 19, 2011 Report Share Posted February 19, 2011 My 2 cents We do IVIG every21 days The 1/2 life is 21 days .We definitly saw the need about day 19-20.Kept great records on a small calander for about 10 months.Theres a pattern so look for it and tell Dr B .I asked him why he does it every 28 days and he didnt have the same answer our MD did ,I think it was thats what he sees that works(dont quote me) We have done over 1 yr of IVs and theres no end in site.Dans doing great for a 16 yr old who has had this for 13 yrs un DXed.Slowandsteady dontlook for the quick fix listen to your head and heart.Dr B is great but we dont use him. Dans rages were horrible to worse than horrible.Wanted to send him to a boarding school (almost did) I havent seen any in a while ,small bursts of anger here and there,look for mycroplasm infections(rage big time)Dr T is a great MD to speak with on that. Dont know what to say except keep posting here thhe people on this site are about the best human beings I have ever not met... Melanie Link to comment Share on other sites More sharing options...
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