fightingmom

Oh, you just want to take all the "fun" out of this don't ya . Seriously though, with all the kids being different metabolically, genetically, vax history, medically history, abx history, etc...there will likely never be a one size fits all *sigh* but we can keep wishing . Well, I bought it anyway. If she cannot take it then I will as my nutrition and energy levels is dismal most times anyway. Yep, I hear ya. At least it won't go to waste if she can't take it. Fingers crossed she tolerates it!

Argh...everything is so trial and error. I really wish we had something conclusive to go on and some more research would be done for these poor kids!!

This is going to sound crazy, but I've been studying human physiology and I'm completely fascinated with the science behind things and "why things work the way they do" -- with that said, I find myself wondering about associations between things at times and I have been wondering something. One of our cats was recently diagnosed with feline stomatitis. Basically, they say it's an inflammation in the tissue of the mouth due to an improper immune response where the body overreacts to the BACTERIA in the mouth. That's the shortened version of it. It's almost like my cat has PANDAS! Here's where I wonder....first, over 50% of the cases are thought to be a result of bartonella. She was tested for this and it came back negative. 2nd...I have read numerous articles stating that the bacteria that typically causes feline dental disease or gingivitis or swelling of tonsils, etc. (which this is like but on a grander scale) is typically streptococcus, bartonella or mycoplasma. This is a little too close for comfort for me. Am I crazy to be wondering if there is a link here?

In the little bit I've been reading on the subject, I've been having that same internal struggle with myself as the conflicting answers you noted above -- hence the reason I asked. I appreciate your response!

I am new to this, so just wondering after reading the ingredients if the streptococcus probiotics are alright?

Thanks to all of you. I take grapefruit seed extract when I am sick. Seems to help. Anything antibacterial in the nose, seems like a great thing for us. Thanks for the info!

Yes!! This is exactly what she does. We've actually had the locks switched on her room for a few years. She is SO good at convincing me that she will calm down when I try to take her to her room, I think I am absolutely not being consistent. Thank you for that advice! Wow. We had even reversed the lock on the door too. But he learned to pick it very easily, or just push so hard on the lever he broke all the bedroom door locks in our house. We have also had two doors come off at least one hinge each.

I found this on his website: Miroslav Kovacevic, MD FAAP Cl. Asst. Professor of Pediatrics Loyola University Stritch School of Medicine Lecturer University of Illinois at Chicago College of Medicine Fellow The American Academy of Pediatrics e-mail drK@webpediatrics.com

Thank you! If you don't mind my asking, what treatment has been working for your DS?

I think he's probably herxing...getting worse before getting better. Probably from the abx, but not necessarily a bad thing. The good thing is that he is crying real tears, and recognizes that he's a mess. I would just keep reassuring him. I know it has also helped my kids when I remind them that it's part of getting better, and that as awful as it feels at that moment, it will pass, and is part of getting better. I can't tell you have many times we have done huge hugs after meltdowns, and also had long laughs at some of the things my DS19 has said during a flair (there's still one that we just brought up again last night...it was absolutely hysterical...wasn't at the time, but afterwards, he said he had no idea why he said it...just blurted it out.) Personally, I think you ought to test him for Lyme and co-infections, too. Herxing is common with lyme, and so many people (not all...I know, I know) on the forum have found that lyme is part of their whole illness. The immune system is really messed up with PANS, so the kids may very well have more than one infection. If it is Lyme, it is important to see a LLMD (Lyme-Literate MD.) You can get more information on the lyme forum, and you can also PM me if you want to. And, many of us are also realizing that we have to treat the immune system as a whole. We, for instance, have been seeing a holistic chiropractor (who tests for and gives us nutritional supplements, and really focuses on the gut and the immune system.) It's important to support as much as you can (in addition to treating the infections.) And....don't forget to take plenty of probiotics to protect his stomach!!! We were told from day 1 to use saccromyces boullardi which can be taken with the abx, but another doc also told us to take an additional one separately from the abx. Thanks for the advice. I can really use it! I'm not sure what Dr. B. already submitted for testing, but I'm going to assume for now (will find out at our appt in 3 weeks) that he probably tested for Lyme, too. They did about 10+ vials of blood on just me, when they did my son's it was 15/16 I think. Not much left on the lab work form was left empty -- and since he specifically said I should be tested for Lyme based on my symptoms, it seems at least it was on his mind. I have so much to learn, i never would have expected a chiropractor to give nutritional supplements or focus on the gut. Today I woke up with a wicked headache and my nose is a bit stuffy. Wondering if maybe I should run over to the walk in clinic for an xray of my sinuses. Thanks for explaining the herxing thing. i have seen that stated before and had no idea what it meant. I sent a few texts to my son's aunt today, who also has PANDAS/PANS kids and she also said she remembers around the 4th day or so that it got worse and then got better again. Then said after steroids, got real bad again. Just wish there was a smidgen of promise that would give me some hope...these last two days are just sucking.

He's been in therapy for 2 years (once a week). Never expressed any of these feelings before. All of a sudden everything he has is crap. I wonder if it's a combo of his symptoms combined with being overwhelmed by the diagnosis. In any case, this is all new as of today...that's why it's weird.

These two statements really struck me when I read your post earlier this morning. I too, felt a glimpse of my old son on Friday and a bit on Saturday. Also, he laughed -- a really feel good, deep down from the gut laugh -- and it made me tear up. I also couldn't remember the last time that I heard him laugh like that. The "NO" thing is rough, rough, rough here too. It's more like if I say something that opposes what he already had in his head, or thought he was going to do, it completely throws him off and he can't handle it. Often he will reply like "Well, I already planned to" or "that's going to mess up my x,y,z". It's just contrary to whatever he had in mind and he blows, too. Exhausting. Truly exhausting. I hope it gets better. That's all I can say. Will be thinking of you.

Right after I typed this he had a major melt down. He needs a hair cut, his hair is disgusting, his shoes are falling apart (his words, they seem fine to me)and are disgusting, he has cat fur on his shorts and it's disgusting. Everything is disgusting. This went on for a half hour, then he asked for money for ice cream - I didn't think I had cash and he flipped out saying his friends get money from their parents all the time and why can't he have money. Just give him something. Anything. "He just wants to be normal like everyone else." --- this seems to be the key to what's really bothering him, I'd suspect. Is this OCD? Anxiety? This is more emotional of a meltdown than I am used to. Usually it's more rage, doors slamming, yelling, etc. this time he was crying tears and when I scraped up the money for ice cream from the bottom of my purse (I rarely have cash on hand) he started cried even more and kept apologizing all the way down the stairs. "I'm sorry, I'm sorry" as he walked out the door, he yelled up "I'm sorry" again. I don't know what to do for him??

Linda, I hope things are looking up today and you are seeing some progress. Jdude, thanks for the well wishes. Today has been an awful day. He got up this morning and was freaking out - insisting that all of his clothes are stained and everything comes out of the washing machine dirty and he's "sick of it". Had a mini melt down before school, changed his clothes a few times and all of them (even though they were just washed) had something wrong with them. Then he refused to take the dog out when he came home from school telling me it is "too bad for me" -- then he decided to go work on a bike project he's had in the shed (that he wanted to order parts and piece together instead of getting a new one like I wanted to from the beginning). Well, apparently, something isn't working to well because he came in the house and came flying into the office to yell in my face that the bike is a piece of crap (I spent $200 on the parts because he wanted to put together his own bmx bike) and it's MY fault. I told him I was sorry he was having a hard time, but I don't know why he's upset with me. Then he told me I was the problem, screamed some more, stomped down the stairs, went back outside and slammed the door. No idea what's going on and feeling very deflated. I'm so tired of being screamed at for nothing.

I'm heading into a class, but I have felt how you are feeling -many times. Will write more later.

Oh and over a week ago he called me the "c" word...

I have seen the dilated pupils a few times but only during the big meltdowns where he ends up a crying mess on the floor. The light has been a big issue though. He refuses to turn lights on even when pouring a drink in the kitchen, sits in the dark in his room and will fight with me about turning on a light even when reading, complains about the sun when driving in car....

yeah...we need a PANDAS version! YES!!

I've never heard of xlear before, my son or I seem to always have sinus infections. I'll have to look into that.

What a powerful documentary. I was brought to tears, I was educated, I was maddened -- all in one sitting. Really powerful. Thank you.

I wish I had advice for you. I just want you to know you are not alone and my heart breaks for your son and your family. Hang in there.

Oh, yes. Totally agree. I shrug off a million attitude like things a day with him because of his age and puberty. But, a lot of the times a simple request - where a certain degree of huffing and puffing or a little snotty comment would be expected at his age - turns into 2-3 hours of major and extreme, door slamming, screaming, temper tantrum fits and him chasing me around the house trying to get things to go his way. No matter how many times I remind him that his argument took far longer then the simple request such as asking him to go through his laundry and give me what needs to washed, etc. Now, that I say all this out loud, I guess we haven't had the real knock down drag on stuff in a few days....so that's probably what you are trying to remind me of. (lightbulb moment ) So, with that said, I guess we are seeing some real progress. Thanks! Thanks for the kind words, too. Sometimes I feel like I failed him. I never have given up and I NEVER will, but it's been such a long road with so many doctors and such hard times, I feel horrible we didn't get to this place sooner! How are things coming along at your house? Hope the trip home was uneventful!

SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad. Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did.

Oh, this is something I have been wondering about for a long time. About a year and a half ago, my son was talking with his older cousin and had disclosed that he takes a lot of advil for headaches. His cousin was smart enough and cared enough to pull me aside and tell me this. I had NO idea he was self medicating with advil. There were times he had headaches and I would give it to him but I did not realize he was taking it on his own. I HAD several bottles, one in each bathroom, one in a kitchen cabinet, etc. -- because I have so many problems with pain from endo, cysts, fibroids, etc. I have taken advil as needed for pain throughout the month and didn't realize it was disappearing any faster because I just grab whatever bottle and take 2 when I need it. WELL....now I am reading all this information on Advil helping with the symptoms and episodes and I wonder if he was subconciously on to something? Maybe it made him feel better in more ways than one. I can honestly say that since I put up all the advil -- and he's no longer giving it to himself, it has been around this time that symptoms exploded even more. The last year has been He##. Things that make you go "hmmm".

I am seeing a lot of waxing and waning. Last night we had a little fit about turning off his computer at MIDNIGHT...I mean come on, I'm not being unreasonable. (But, his friends apparently don't have limits on that, or so he says) However, this morning he got up on his own again, took the dog out, brushed his teeth, typical routine stuff that lately has become a battle or an argument -- not today though. Also, there have been a few things throughout the day that I have noticed him responding quite well to. Just little things, "have to pick up your room before you go meet your friends" type of stuff that has caused major battles in our house before, but he simply complied with. Though about an hour ago he called me just to sort of pick a fight about something small and that seems to be the only reason he called. So...I'm seeing some stuff, just not that miracle on Friday I had experienced. That was strange. He was wonderful and happy and completely like his old self. Not sure where that came from. Thanks for the well wishes on my surgery, it's my 3rd pelvic/abdominal surgery in 15 months. Getting pretty old. And, I only have 4 days to recover as I have an exam on school Monday morning and my professor is less than sympathetic. Not sure how easy that will be, but oh well. It's recently been suggested by my doc and allergist that we begin to travel the roads to explore autoimmune disorder for me as well. Have been having some very weird symptoms and crazy rashes, allergic reactions to nearly everything, even antibiotics and never had these issues before in my life. Dr. B. asking me about Lyme disease triggered me to dig into that a bit and I was very surprised to see how many of the symptoms I have. Will be interesting to see how the tests come back for both my son and myself.