Joan Pandas Mom Posted October 4, 2010 Report Posted October 4, 2010 My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help?
Tamistwins Posted October 4, 2010 Report Posted October 4, 2010 My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help? Oh Joan I am so sorry for what you are going through. Boy do I understand a living ######. How old is your son? I think my son tried that medication. It didn't do him any good. So we stopped it. Is it for his tics? My son walks through the house like an elephant, he talks so loud and whenever he uses bathroom he slams the door and makes so much noise locking it no matter what time of day or night. I wish I could offer words of wisdom bit I am in the same boat. I am clueless myself. Just can offer some empathy. Praying for it to get better for all of us! Tamistwins
Joan Pandas Mom Posted October 4, 2010 Author Report Posted October 4, 2010 He turned 16 late August and has had this for 6 years. Do you wonder what we are missing? I find myself always trying to find the missing piece--it just isn't happening.
Joan Pandas Mom Posted October 4, 2010 Author Report Posted October 4, 2010 I should mention Pedi suspected PANDAS and or SC when this started, we went to NUMEROUS docs from there and everyone (like Sammy) said OCD. We had been treating it like OCD until Oct. 2009, when that incapacitating exacerbation aso titer was 1014.
KeithandElizabeth Posted October 4, 2010 Report Posted October 4, 2010 Joan: Have you done the IGENEX test on your son yet? Have you done the c3d circulating immune complexes test? I am so very sorry for your pain and I felt like I lived in constant pain last winter trying to find the missing link as well. For us, it was the lyme, mycoplasma, bartonella and babesia. Anyone one one these infections can create a systemic infection in your child's body and cause these "PANDAS" symptoms. I urge you to test for all of these infections. My thoughts are with you right now! Elizabeth
Worried_Dad Posted October 4, 2010 Report Posted October 4, 2010 So sorry for your ds and family, Joan! FYI: our son reacted terribly to all of the benzos (valium, ativan, klonopin/clonazepam). These are supposed to be anti-anxiety meds, but they made him much, much worse - magnified the rages, hyperactivity (non-stop pacing), crying jags, and overall emotional lability to a terrifying level. Dr. K advised us to taper off the ativan prior to 1st IVIG, and within 2 days of discontinuing, our son's emotional state was immensely improved. (Still had massive OCD, but the rages, crying jags, and endless pacing were gone.) I'm no doc - and every PANDAS kid is unique - but thought I should share this. For our son, at least, ativan and klonopin were like pouring gas on a bonfire. My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help?
tpotter Posted October 4, 2010 Report Posted October 4, 2010 Dr. Tanya Murphy published an article where she noted that kids with PANDAS do not respond the same to SSRI's. In fact, the SSRI's can make the behaviors worse. I found that with my son. Could it be that the Clonopin is causing an adverse reaction? I took my son off all that stuff, because it either did nothing, except take away his appetite and/or make him nauseous, or made him worse (in one case, he took a metal pipe and swung it at my head...in a split second! Once we got him off medication, all his symptoms improved.
PhillyPA Posted October 4, 2010 Report Posted October 4, 2010 My son took valium and was up all night. He had a paradoxal reaction to the medicine which I understand can happen with PANDAS kids. Ironically, hot tea with caffene calms him down. I won't let him drink the whole cup. Just about 1/4 of it. Give it a whirl and see if it works. Don't try it close to bedtime.
Fixit Posted October 4, 2010 Report Posted October 4, 2010 My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help? dear joan....i pray for your son...to find some peace... when i call my DAN for pan/pit ds...i spend an extra 5-10 min talking in confirmatory statements to affirm i am not crazy..it is worth the money as i am paying anyway..and if i had to run to a therapist...that would cost money too...and i only really need 5 minutes.....and i need it to be about pandas....a therapist would not help me..as my looneyness is wrapped in this condition...i need someone who understands this condition...to tell me i am not crazy in all i do regarding this....and when i see something ..pos or neg...that it is not me reading into it...i am probably seeing reactions in x time...from x ingrediant.... it is nice to have someone with a medical background confirm this...since i spent 7 years being told i was imagining things or reading into the correlations i did see.... maybe you need something like this... next..my dan said per last week as we talked....that anything i do may take up to 3 months...maybe 6 as that is how long in takes in gerneral to circulate things out of the system....(6 i guess if it misses the cycle and trickles into next as the system is regenerating and adding and that then has to get cycled out...this last part is my wording..i don't remember his) so if your son has had this for 6 years...i do not think he will be healed in 4 weeks... and those titers....he has alot to get out of his system... did you ever have something so dirty, you had to wash it 2, 3 times... and maybe you new it was dirty so you let it soak...well as its sitting there..some dirt is circulating back in...where as if it was in a stream..it would be in constantly flush/rinse mode.... so as you put something in his system to help clean it...i wouldn't be surpised if some are circulating back in.... this is just my theory... stuff i come up with when the hamster in my brain won't get off the spinning wheel i'm not saying this is it..but it's a good theory to me i think our expectations are too high in the amount of time it takes to heal... i know that is true for me..as, again, ds used to remit in 4 weeks...but this onset was more severe and got worse...and it is probably an acumulation of all his illnesses Patience for all of us...
Fixit Posted October 4, 2010 Report Posted October 4, 2010 i thought that the last ivig was weeks ago ..not months...my bad... it makes me think his body was just drenched in ick.. with that being said...again not ready to post...but T&A should be looked into if you haven't done it yet
Mary M Posted October 4, 2010 Report Posted October 4, 2010 Joan-I can so relate to the door slamming. Our dd12 is 3 months post IVIg and her door slamming has not gone away. Many other improvements but that slamming...I jump out of my skin with every slam. Your ds has been affected for so long...it seems logical that it will take a long time to see improvements (I tell myself this every minute of every day). I am contempleting a second IVIg based on yesterday's behavior flare. If your ds still taking abx? My dd's symptom flare seems in direct relation to the time since her last dose of abx.
Joan Pandas Mom Posted October 4, 2010 Author Report Posted October 4, 2010 His Igenex was negative. Mycoplasma IgG only was elevated on my son, his older brother and me.
Joan Pandas Mom Posted October 4, 2010 Author Report Posted October 4, 2010 He started the clonazepam Friday evening. It doesn;t seem to be doing anything. I think you are right. He a little more hyper. But he is soooo scary hyper in compulsions before Friday too. I can't calm him down. Nothing works. Thanks all of you for your prayers, help and concern. It helps.
thereishope Posted October 4, 2010 Report Posted October 4, 2010 Don't you love looking out the windows or doors to see if anyone has called the police yet? Oh, man. I was blessed they never got called to my house! My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help?
Tenacity Posted October 4, 2010 Report Posted October 4, 2010 (edited) So sorry for your ds and family, Joan! FYI: our son reacted terribly to all of the benzos (valium, ativan, klonopin/clonazepam). These are supposed to be anti-anxiety meds, but they made him much, much worse - magnified the rages, hyperactivity (non-stop pacing), crying jags, and overall emotional lability to a terrifying level. Dr. K advised us to taper off the ativan prior to 1st IVIG, and within 2 days of discontinuing, our son's emotional state was immensely improved. (Still had massive OCD, but the rages, crying jags, and endless pacing were gone.) I'm no doc - and every PANDAS kid is unique - but thought I should share this. For our son, at least, ativan and klonopin were like pouring gas on a bonfire. My son is opening and closing (slamming doors) for last 10 minutes. He is screaming out in frustration. This is 45 minutes after 1.5 mg of Clonazepam. I am in living ######. Is IVIG #2 really going to help? One of the drugs prescribed for my son when he was originally stricken by PANDAS (though we didn't know what it was at the time), was lorazepam (generic Ativan). We were warned, in advance, that sometimes it can have an effect -- especially on kids -- which is the very OPPOSITE of what is intended. Boy, did that ever happen to my son! Exactly as Worried Dad described. Anxiety and hyperactivity are not diseases, but symptoms, which can have different root causes. So there's no single treatment that will ease all manifestations of anxiety and/or hyperactivity. The process of trial and error with medications is painful, frustrating, and sometimes downright frightening, but it does have some diagnostic value. If what seems to work for the rest of the crowd doesn't work for you (or your child) -- well, maybe your problem is not the same as theirs.... My son has endured over 20 different medication trials over the past 4 years. We were told over and over that the rapidly-growing list of failed medication trials constituted evidence of how very serious his bipolar disorder was. Now, guess what! It turns out, it's not bipolar disorder at all, but a post-infectious autoimmune disease of the brain. No wonder nothing worked!... A sore throat and cough might be symptoms of any number of different bacteria, viruses, allergies, metabolic problems, cancers.... Any doctor worth a bean understands that, right? Why must there be such a grotesque double standard when it comes to anything even remotely "psychiatric"?... Don't they teach people in medical school that the brain is a part of the body? The worse my son's neuropsychiatric symptoms became, the harder the treating psychiatrist tried to argue that all these symptoms were "psychogenic," "hysterical," "conversion," etc. He bombarded us with stories about victims of child abuse and veterans of war. Yes, WAR VETERANS!... Surreal!... Forgive me, Joan PANDAS Mom! I swear, I'm not lecturing you, I'm VENTING! This is the only place I get to do it without someone interrupting me! PANDAS has transformed me into a MONSTER!... There's got to be something that will help. But it sure doesn't sound like this latest medication is the answer. HANG IN THERE! (Both you and your son!) Tenacity Edited October 4, 2010 by Tenacity
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