mbruin

Hi everyone. It has been a long time since I posted. We have been dealing with PITAND with our 10 year old for about 5 years, and Lyme and all its "friends" starting in 2009. We have been rejected 2 x for IVIG - mainly because his titers aren't significant enough. Our son is just working through another flare and our Dr. has recommended we go inpatient for a 1/2 day for a high dose of solumedrol(?) and leave with a taper pack. Although I only talked to his nurse, she said that he had seen similar results to IVIG. I do not know enough about this to be comfortable, and a preliminary scan of past posts were mostly negative about it (they were 2009 posts). Anyone out there done this as opposed to IVIG? If so, what were the side effects and ultimate results? My son's symptoms currently are about a 6 or 7 out of 10. Any input would be GREATLY appreciated! Thanks ! Steph

Ohhh.. this is such a wonderful song. I've not heard Sarah M. sing it before. Do you know the name?

Hi Noelle, SO true about the marriage piece, and the perspective differences we can have at some points. And man, doesn't the perspective or understanding we make of our kids behavior determine how we react to it? So hard when we arent on the same page. I wanted to respond though to the Tenex - Last spring before we knew my son had Lyme and was the root of this latest exacerbation,we put him on Intuniv, which is a time released form of Tenex. It did NOTHING for the rage/inflexibility/non-cooperativeness. It *may* have even made it worse. Our psychologist (NOT our prescribing dr) swears that Tenex and Intuniv had made some of his clients really aggressive unless they went up to 10mg or so. We only did 3, at most. We took him off of it 6 months later once we discovered Lyme, and finally broke through our denial bubble about PANDAS. Truly, I kept conceptualizing that we were treating Asperger meltdowns.... maybe Intuniv would help in that scenario, but they certainly NEVER touched the PANDAS rage we were truly dealing with. It did make him more tired for a bit, and maybe slowed him? settled him? a bit.... not in a really bad way, but in an unnecessary way for him. If he had ADHD, it might have been helpful..but he doesn't ;-) Anyone know if Abilify makes PANDAS worse? Steph

Hi MegsMom - tried to PM you re: Charlotte docs but it says you arent able to receive them.... I will try to find the others you mentioned, or feel free to PM me! I would LOVE some Charlotte rec's etc; thank you!

Wow. This is pure GOLD. Thank you so much. We recently hired someone to be with our family several days a week so that when my oldest son goes into rage mode, my youngest son can be taken care of and go someplace safe and fun for him. I'm also having her go with my oldest son when he's calm/amenable so I can have one on one time with my younger son. We do talk a lot about Ben's rages, brain sickness, and Asperger's, but I think you have really reinforced my feelings that he needs an outside person to be with as well. I want to be so aware of how this effects him and never minimize it or lose sight of its impact. He needs just as much attention as his brother...but man does the squeaky wheel get the grease. Thank you again for weighing in on that - it really keeps things in focus. Steph

I am sitting here with goosebumps up and down and tears sliding down my cheeks. I truly have felt so alone in all of this - thinking we were so far from the norm that no one could relate - and if they heard our story - they would run the other direction. All of your responses have been so powerful and so grounding. I think the best part of hearing from all of you isn't just the validation I so badly needed, but that with your validation I tap into another fresh well of patience, calm and understanding to offer my son in the bad moments. I'm sure he would thank you too! I love the rock smashing idea, and the rewards following non-preferred tasks, and knowing that other people have siblings that go to their room and lock the door ;-} I also am relieved to know that some other kids ask to hurt or break things ... My son always says he wants to hurt something.. and he doesnt mean an inanimate object... When I offer a punching bag, pillow, couch, anything- it makes him even more frustrated. I've even offered him my arm to pinch and squeeze just so he can get it out. Ouch. How did anyone find an ABA therapist to come into your home? I'm thinking along those lines.. but every time I get close I think that with all of our "techniques" - they only work when he is not in the bad PANDAS rage stage. He is an AWESOME little guy and can make use of so much of the techniques etc outside of PANDAS flares - but literally our breathing bothers him in this rage stage. He has a cold and woke up an hour after finally going to sleep and had a HUGE tantrum just in his bed b/c the sniffles were bothering him. then our breathing bothered him. Ugh. I feel so comforted to know that other people have this same feeling about these time- I honestly feel they are traumatizing. I have no control over when they will happen, how, how to make them stop, and worst - to not be able to mother my child and "make it all better". And oooh the guilt I feel for my little one!! (6 as of yesterday). I read about Motrin on this board so gave it first thing yesterday morning to see if it helped him tolerate his brothers birthday.... WORKED like a CHARM!!!! Why didnt I know this sooner!!! Finally- yes he is on psych meds. Abilify (an atypical antipsychotic) and Prozac. Sad to say the Prozac has been on board for years, at a sub-clinical dose (1o mgs). Our psychiatrist who I really like has been really hesitant to take him off it. He is my only Dr. in Charlotte that believes in PANDAS.. so I'm going to bring him all this new info about the meds. Thank you for that :-) I know I'm lengthy - but I'm gushing with gratitude to you all - Thank you... and I'm going to keep reading all the responses!! Steph

Hi all! This is my first time posting so I'll say Hi! and Thank you! for all your collective support and wisdom I have been drawing from! My son just turned 9 and we have been dealing with PANDAS since he was 4. Of course, down here our first round of doctors/neurologist/psychiatrists/psychologists adamantly believed PANDAS didnt exist. Translation: they knew nothing about it so told us we were out of our minds. Happily, we persevered and have a great team, mostly up North - and have just started to see Dr. B in CT. My son also has Asperger's, so between the typical Asperger meltdowns and the PANDAS rages, we feel totally off the rails. Starting last August (09) our sweet, bright, affectionate son once again started to backslide with great inflexibility (a "nice" way of saying oppositionality!) , tantrums, obsessing over computer etc;. He maintains beautifully at school but I literally could not get him to the car before he started to rage. Rages changed for us. They took on new, scary features, such as threatening to kill us, getting (butter) knives out of the drawer, acting possessed, swearing curse words I had NO idea he knew, let alone that he could be so sophisticated and creative with them. His pupils dilate and he talks in a really creepy voice. So yes, we slipped into the Exorcism Syndrome, though didn't have those words at the time. I and his younger brother had a strep infection in November that increased all of this, though we had Ben on weekly Zithro for a long time. We finally found out that he has contracted Lyme disease - which of course compounded everything. This sounds so cut and dry when I read it but it has been a living nightmare. All of our energy has been used to quell the rage, protect our 5 year old from it, live through them, try anything to help him contain them so he didnt hurt us or himself or his poor little brother. We have not found a way to parent well through the rages. First of all, my husband finds it very difficult to see our son control it at school and when he gets what he wants etc; but not with us. The tantrum almost always follows a request for something that is denied, or a limit being set or a demand: ie: brushing teeth, getting dressed, turning off computer, not having another treat, I brought the wrong treat to pick up, anytime I say no. We are consistent but flexible, warm but firm, really knowledgeable at this point about all the challenges. Yet, it is so frustrating when the rage always follows these moments.b/c it still strikes the chord of a spoiled kid not getting what he wants. We KNOW thats not it, but it still pushes buttons, as does the disrespect and nasty name calling etc;. So this is my question: 1. How do you protect any siblings from the rages and how do you explain it? How do you think it is effecting them? 2. How do you NOT lose your temper when it is the bazillionth rage of the day, you can get nothing done, the sibling needs you, and you are being "beaten up" verbally and sometimes physically? We end up bringing our son to his room, after giving him several options, and eventually if he cant stop hitting or hurting me or saying evil things, I close the door and hold it - which makes him insane but eventually it allows him to quell and return to a semi-normal state where he is soooooo sad and apologetic and says the most self hateful things no matter all my assurances and understanding. We tell him he's loved, that this is a brain sickness we are trying to heal, that we understand it feels out of his control, that nothing he can do or say changes our love for him, to remembe rthe imtes when he is his true self and this doesnt happen - etc etc. There ARE times when we just lose it - and feel BEYOND guilty afterwards. I would appreciate any stories, techniques, support anyone can offer. I feel so isolated even though I have many friends and family who care, but no one can relate to this bubble of torment we are currently living in. Thanks in advance- Steph