fightingmom

Thank you, airial95!! This has been very helpful, both the reassurance about the ibuprofen and the upswing with your husband. We considered marriage counseling, but have been so overwhelmed with doctor appointments and therapists and family counseling with my son that the thought of another freaking appointment just is so unappealing especially with the lack of results over the last 2 years. Though that was BEFORE we knew what we were dealing with was PANDAS/PANS. Like I mentioned, we have done family counseling, etc. already but hasn't made much difference because it's just the 3 of us, and until we can get my son's behavior under control we can't do much else -- additionally our family therapist was also my son's therapist. She recently suggested residential treatment for him since he didn't seem motivated to change -- I sent my son out of the room and tried to explain to her that we were headed down the PANDAS route and she nicely suggested I was wasting my time. So, that's the end of her! Maybe, now that we have eliminated her from the picture, we could try something like you described with a different counselor. Making it into a positive/date night event sounds great. I really like that idea. Last night my husband read through some threads here and I read a few things to him that I thought sounded very similar to my son. He agreed it sounded JUST like him. I feel like he finally had an "aha" moment. Not sure if it's because we had such a big explosive weekend in our house that we both realized this is going to end badly if we don't make changes, or if it's because we spent some time together at dinner that didn't revolved around this stuff and maybe it just centered things a little bit. Been getting some good advice from all of you. Thanks so much for sharing!!

Xlear is WONDERFUL get the one in the glass bottle, not the one in the plastic bottle. I've heard the glass bottle one does a better job of spraying. http://www.amazon.com/Xlear-Nasal-Spray-1-5-liquid/dp/B000M4W2E6 I used it recently when I got a sinus infection (from the flu). The doc has recommended saline nasal washes, which were unpleasant and did nothing! The xlear was so soothing! It has xylitol and grape seed extract in it. Both are anti-bacterial. After I sprayed it into my nose I would lie to the side or on my head (not really, I would put my head upside down, not the rest of me) and I could feel it move into my sinuses. Around here you can get it at Whole Foods and CVS...I'm sure many other places too. The xlear was recommended to me here. I bought it less than a week ago and have been using it religiously since and I have to say, it's helping me. I stopped taking the cipro that was prescribed for my sinus infection because it was making me feel weird. I was getting weird sore muscles or aches all over. First the top of my foot, then my neck, then my shoulder, then my arm. It was bizarre. Happened to me once before and I think looking back it was also cipro that did it. I had forgotten about it. Anyway, point being, I have been battling a sinus infection and I already feel like I can breathe more clearly and am don't have the pressure around my nose and between my eyes that I was feeling for a long time. It was $13.99 at Whole Foods. Probably cheaper at Amazon, but I wanted to buy it quickly. I bought for my son, too. Though he probably only has been using once a day.

It is. Though, I can't keep him on ibuprofen forever so I feel like I'm just buying time. Argh.

Are these areas raised at all, or just darker?

Sounds fungal to me too. They can be very stubborn especially with an already compromised immune system. We adopted a kitten that wound up with ring worm. She gave it to my son and I. My husband did not get it. Took us about 2 months to get rid of it. Tea tree oil helped a lot.

So, hubs and I went out to dinner and came home to find DS had cleaned his room, done his homework (a nicely typed 3 page paper) and did NOT even freak out at me for forgetting to plug back in his internet before I left. Actually, I had sent him a text apologizing because I had forgotten and when I got back home he told me not to worry about it that he had been typing his paper and it was "no big deal". This on on ibuprofen all day. Coincidence? I'm thinking not...

Thank you so much! I really appreciate this. I have just started doing what you suggested as of today actually. I gave my husband a link to a few threads here that sounds just like my DS and I also have a few things I want him to read (didn't want to send them all together, it's too much). You are right though, he needs to read it and not hear it from me. We also went to dinner tonight and spent some time alone. Much needed. We had a nice time.

This is going to sound really stupid, but could you swab inside the nose to check for strep with these?

This is a very interesting thread. I know this doesn't answer your question, but my own diet is mostly vegetarian and I am not a big dairy person either. My most recent bloodwork showed my LDL was high. I was shocked. Though in this thread I have learned that anxiety and stress could cause it AND inflammation. I have endometriosis and lots of other ailments that all are inflammatory in nature. Things that make you go hmmm....

I just wanted to say "good luck". I think you may be in a better position...you can continue on with USF and if down the line you want to go back the Dr. B. route you'll have two perspectives and an extra set of eyes. Sounds like a win-win. So nice that your husband is being proactive and involved.

Thank you for this. It does seem we have a lot in common, I know they say misery loves company and it's an awful way to be, but sometimes you do need to know you are not alone. Did you get any recommendations from Dr. B's office? I give you the okay :)Just be sure to give it with some food (not on an empty stomach).Hang in there!! Thanks, I gave the ibuprofen this morning at 600mg, and just now after school at 400mg. I'll see how it goes. A lot of wisdom in your response and now that I'm a bit more cooled off and not in fight or flight mode, you are right. I do try to listen to him and understand where he's coming from but it seems so difficult to make him happy while understanding that my son is sick and this can't all be handled the same way as the average child who is misbehaving. Where do you find that balance. I am no pushover with my son either, I do take things away and do set rules, and this is generally where the biggest wars and meltdown erupt from. If I nodded my head and gave in to his every wish things would be much more smooth sailing. Though, there are a lot of times like Bulldog describes in her paper towel incident that he just screams out of no where and I'm left there like "really?" My husband and I have always had a strong relationship, we've really found a great partner in one another, we have the same goals and generally get along great. Actually, the only thing we fight about is my son. So...it would be really terrible for this to tear us apart. I guess there is a part of me that thinks it's easier to just let him go, so it's one less person I have to fight with. Dealing with my son is exhausting enough, I don't have anything left for another fight. Ya know? And, that's not a fair way of thinking, and in the long run would be hurting both of us, but sometimes...it seems like copping out is easiest! I have been taking milk thistle on and off since my gallbladder was removed - for some reason it never occurred to me to give to my son. I'll do that. Thank you! VERY, very interesting about the peanut butter. I will try this!! You just described my son to a T!!! And, he's also been diagnosed with generalized anxiety disorder by one doctor (the one that I think had the most insight) but most recently another doc says he doesn't see any anxiety because his responses are not fear based...he's right they aren't, but I think there is more than one way anxiety can manifest. He does seem to have major anxiety over things. For example when I took away his computer, he freaked out because he was now going to piss off his friends. Apparently they are all playing a game that is hosted from my son's account and if he can't log in, his friends can't play either. This was a major issue for him and he lost it over that. Now, when I was his age, I would have just told my friends "Sorry, guys my mom took my computer away last night," and it would have been over but to him it's the end of the freaking world. And, if i take his keyboard or anything like that, or even a cord, he FREAKS out. Tells me he had it all set up just right and now I have ruined EVERYTHING. Huh? I just took the power cord...but to him it's a major big deal. He tells me to get out of his room all the time because he doesn't want me to touch anything. Picking up clothes off the floor or a piece of paper and putting it in the trash bothers him too.

Sorry just read you go back in 4 weeks. I did do ibuprofen and it worked. Posted in my thread that started out positive but turned into my rant....

This is exactly what happened to us and we alsOnhave sinus infections that will not quit. My son was on the steroids and turned into an emotional, crying disaster. On day 5 I took him off. Within 24 hrs he was great and we had about 9 days I think of an angel child. It was wonderful! My son was back. Well he went from wonderful to monstrous and has been raging for 3 days. When do you go back to dr b? Our appt is not this Thursday but next.

I needed someone to give me the mental ok to keep going with the ibuprofen. I didn't give it to him yesterday and we had another melt down/rage. I'm dosing him before school today and when he gets home and will continue through the week. My husband has slept on the couch the last two nights (he's NEVER done this) and I'm not sure how much longer our marriage will survive this. he puts up with so much but at a certain point will step in when my son is throwing things are slamming things and told me last night he is afraid my son will hurt me. Him intervening, no matter how small (a simple "that's enough" will send my son into overdrive) inevitably ends in my son calling him horrible names or wishing him dead. We've been together for 7 years and he's been very patient, but I think this ###### has become too much for him to handle. He's losing stream and patience and doesn't quite comprehend the ins and outs of this illness or how my son can be ok with his friends and be such a monster at home. It saddens me to think that an otherwise wonderful relationship without any other issues has been destroyed by this, but I fear it has. At the same time, I am going to fight for my child and do what I can to get him well, even if it costs or has cost me my marriage in the process.

Watching now! Thanks.

Also...my pain was always at its worst in the middle of the night. I would wake up from a sound sleep doubled over.

Seekingrelief, would you mind sharing the name of your pediatrician? We are also in RI and I can not find a doc here that believes in PANDAS or will treat my son.

See if they can do hida scan for gallbladder. Ultrasound did not shown anything for me either but wound up having exploratory surgery to have gallbladder removed after two years of pain and multiple ER visits and misdiagnosis. My gallbladder was diseased and one of the worst my gastro had ever seen. Never had any evidence of stones etc but hida scan right before surgery did reveal it was not working properly. So sorry for you guys. How terrible.

I tend to lean towards dcmoms train of thought about it being good to be exposed to some things. I was always the mom that was like "eh, a little dirt never killed anybody" but often my son would be very OCD about washing things off his hands. No germ fears just a "get it off of me" type of thing". Anyway, just wanted to say I feel for you. I can't imagine having such anxiety over germs already and then having to deal with this type of illness. It's like a double whammy! So sorry you are delaing with this.

So this morning DS woke up still very agitated. He was looking for a fight and blaming me for his meltdown last night, telling me how and why it was all my fault. I made him a smoothie and put some magnesium powder in it. I also gave him 600mg of ibuprofen. I realize that's 200mg more than regular dose but felt we are in a crisis right now and wanted to see if helped. I stayed downstairs and out of the way. He came down on his own about 1-1 1/2 hours later to tell me he feels "better" and he's sorry my husband didn't get any sleep before work this morning. He asked me what my plans were for the day and said he may stay in because it's a little cold today. I feel like as small as it may seem that this was a HUGE shift in behavior, simply from ibuprofen. And he also came down on his own to apologize for the same behavior he had just blamed me for earlier. Our appt with Dr. B. is about 11 days away and feels like a lifetime away. I can't wait to see if there are any coinfections involved, but if not I feel we need to get on the fast track in treating this. He's already 14 and I don't want to miss the window of opportunity if there is one... Honest and truly if we had not been already been down the PANDAS path last night he prob would have gone back to the hospital. It was that bad. I have read that after the steroids wear off there can be a big explosion of symptoms. Could that be what happened last night? Any thoughts?

Night from ######!! slamming doors, kicking walls, screaming and cursing at me at 1:00am. I knew it was coming after yesterday morning! WTF. It must have been the steroids for the past 8-9 days that we had that were so wonderful. And, I mean WONDERFUL. The kid was amazing. He was sweet, and happy and smiling and offering to help and not fighting about a single thing. Last night after dinner I just called his name - nicely - and he SCREAMED back at me WHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAT! Argh. It's one thing when they are younger, but 14 years old and a 125lbs slamming your house down and screaming obscenities at the top of his lungs. I don't know how much more I can take, I really thought the neighbors were going to call the cops.

Hmm, last night he was moody and kept telling me to shut up....blah.

It's also used in detoxing. Perhaps, she's detoxing from heavy metals or something else?

This has happened to us probably 10 times over the years, each time it was a night or two in a row and then stopped. His doctors always just said he was growing, too. Though it seems so extreme to wake from a sound sleep screaming about leg pain. I don't remember ever doing that. I have restless legs every night. So annoying!

875mg 2x a day. Could have been the steroids taking effect, too. We discontinued them, but he got in 5 days worth at a pretty high dose, so... Either way. We see results!