thereishope

Lab 405-271-2133 X47455 Kathy-Alvarez@ouhsc.edu I know it was mentioned on here that the lab was haulting running tests for a bit to catch up, but I do not know if they are up to date now. You can contact them, but be patient if it's a bit for a response. Please post if they are still sending out kits and if they mention a turn around time in completion of running the tests. Thanks!

I was looking something up for a thread and found this mixed in with the search results. Did anyone read this? Is it worth reading? Its 100+ pages.

Here's a couple. I know there have been more... http://www.latitudes.org/forums/index.php?showtopic=11598&st=0&p=97168&hl=vaccine&fromsearch=1entry97168 http://www.latitudes.org/forums/index.php?showtopic=10476&st=0&p=88251&hl=vaccine&fromsearch=1entry88251

Oh, my, you're having a good 2011 so far, huh? I'd at least give the one on a steroid an antibiotic since his immune system may be weakened from it.

Is she biting into any pills that are meant for swallowing or are you crushing up any pill meant for swallowing? I would agree that it sounds like flouride or calcium deposits. My kids have a couple white spots from I guessing flouride. If they are on the back on the teeth, perhaps they were there before and now you are just mroe aware of everything? If you're worried, I say call the dentist and ask. Are they pitted spots?

I'm glad you had a nice wake up this morning! Yes, ADD and ODD can be PANDAS symptoms. My son's PANDAS induced ODD went away with antibiotics and time.

If my son would take pills, that's what I would prefer. My son will only take a liuid. Longer shelf life, possibly no dyes, etc. Doesn't hurt to call or email the doctor for a new script or have your pharmacy call. That depends on the doctor. If you call mid prescription, you are more likely to get them to give a different antibiotic over the phone. He/she may ask for your child to come back in. Now, if they want to see your child again and that visit includes a strep test, politely remind them that she can get a false negative for up to 3 weeks after finishing meds.

I extensively searched for info on this study when I saw they also listed studies that will be enrolling in the future. I didn't see anything. There was a study for IVIG for SC. Could you have looked at that?

Out of curiosity, how much of this do you think is the school error in her not progressing in meeting goals? I can only answer this from what I experienced, and that's the speech part. My 7 year old son has an IEP for speech but in it they list he needs to work on tenses of verbs, pronouns (he/him), social skills (met his goals this year! last year was just out of exacerbation), and he has something else listed as well. He has progressed in trying to meet those others goals in the classroom setting with only a SLP. So...I know every child is different and kids progress at different speeds, but makes you wonder how much of it is possibly the therapists and teachers not giving their all??? One other thing I want to ask about the resource room, I'm a little confused what that is. Kids are suppose to stay in the classroom setting as much as they can and only get pulled out on occassion if the therapist thinks the child is being too distracted or need a lot of one on one help. In our school, they call the child to table in the classroom and work with them or they call that child and intergrate therapy with kids from other classes that have similar goals and they work as a group. btw...my soon to be 10 year old still has errors when with /r/. He doesn't qualify for an IEP (hard to qualify in our district) but he has monthly intervention and when the slp has extra time. /r/ is hard for kids that didn't achieve it "naturally" in their speech. When going into the meeting, ask for the sky, even if you know it's way too much. Then bargain with them. I was able to get more therapy time this way. I also don't know if this website would help you, but it's about special education law, advocacy, etc http://www.wrightslaw.com/

Yeah, I think I'm immune to insults by now. Now when they say "Mom" I say "What did I do wrong now." My son said he hated me, wanted me to go to heaven...you just have to try to separate yourself from that and remember it's not them saying it. I know...a lot easier said than done.It's just words they use to try to convey the anger they are feeling towards what they are going through. They don't really hate you. It like a volcano of emotions (probably not even emotions directed to you) and it erupts with harsh words. They may not know what hate really even is. Like you, I like to be the strong one. I think I wish people would see when I need help and reach out, but I don't think I could ask for it. Unfortunately, due to the front (or whatever you want to call it) that I put up, people didn't see when I was in need, or they just didn't want to get involved. I did find a very good cry when the kids are asleep and hubby at work would actually cleanse me of part of the sadness and even though I'd feel tired after, I would have some renewed energy to fight too. Allow yourself to cry. Realize you are dealing with a type of loss and you deserve to grieve. It hurts more to keep it all inside.

It's kinda sad how we have to get to know our kids all over again and keep in mind they are older now than they were when they first got sick and it may just be part of their age. My question is are there any other symptoms present? What other meds/supplements does she take? Second, does she take Omega 3's? My son actually gets hyper on the full dose listed on the fish oil bottle, but if I cut it down slightly, he's fine. Something to try if she takes it.It may take a couple days to see a difference, if anything should occur.

Thank you for posting this! So are they actively recruiting now? I don't know if "opening the study" means public recruitment begins then or if that's when they start the actual study and they already have some participants.

I said it before, I'll say it again....You rock! Thank you!!!!!!

You need a subscription for the full article. If you have one, can you post a summary? There is some free snippits to read.... Infectious moods: How bugs control your mind http://www.newscientist.com/special/infectious-moods After reading that free part, click on things like "Bugs that cause bizarre behaviour"

He'll be okay. What day is the surgery? I'll send prayers and good thoughts your way.

It's a stressful situation. The surgery needs to be done or leaving it be could cause pain or leaving it be can cause an exacerbation as the wisdom teeth try to push through even more. Again, not all kids have reactions. Does the surgeon know he has PANDAS? He'll wear a mask during the procedure and if you have antibiotics, hopefully you'll have your bases covered. Has he taken any stronger pain meds before? They may give him Vicodin.That's what I was hoping someone would chime in about...if there are any pain meds to be on guard about. You may be able to ward off pain with a combo on Tylenol and Iburprofen (dentist approved), but you may need something stronger.

Good find! Think this through, though. So, it's been taking longer for the body to process the steroid,hence he has more built up in his system. Thinking out loud here....if you stop the keto, how long does that take to fully get out of his system? You may not want to lower the steroid taper right now. By stopping the keto, that is like part of the taper. Follow me? You can continue with tapering down the steroid once the keto is fully out of his system. You actually may want to discuss this with the doctor that gave the steroid and see what's the right couse of action.

PhillyPA, I can realte to only part of what you went through. Like you, I had no support during his exacerbations. I never looked for a forum since I never needed anything of the sorts before for my kids. So, I honestly thought for that time that my son was rare, that there weren't many like him. Boy, was I wrong. I look back and realize if I knew then even half what I know now,his suffering could have been less, his recovery could have been faster and perhaps he would have only had one exacerbation. I hope you know there are people out there you don't even know about fighting to get your son the help he needs and help him to get better.

First, I'm sorry you're going through this! Second, can you break down everything you're giving including what antibiotic he is on? Maybe a timeline on your dosing for the day would help.

Strep caused severe exacerbations. Allergies caused a severe exacerbation when they surfaced very early in recovery. Viruses and allergies that occured later in recovery caused more mild setbacks. Currently,my son does not react to any other bugs or triggers. However, I know in my heart strep would still do it for him.

For those that don’t know my back story, I have a 7 year old with PANDAS. Sudden onset on his 5th birthday. Overall, 3 strep triggered exacerbations and use to also be affected by viruses and allergies. He’s currently in remission (knock on wood) and has been so for over a year. Like many of you, our family, and being a stay at home mom…specifically me, dealt with a lot while my son was sick. I feel I had/have Post Traumatic Stress Syndrome, but I do find it’s getting better. I find that my mind is separating me more from those memories. This is even with me going on here daily, doing the fb page, and talking about PANDAS daily. I still have them, but they seem out of body now. Don’t get me wrong, I still cry, but my mind has also found a way to cope with it and I still worry about him all the time. Now, I actually find myself having to look up timelines and journal entries because I cannot remember all the details. For my son, he doesn’t remember any of it. He knows strep can make him act odd because I told him that. I’ve told him to tell me if he feels like he needs to do things and can’t control it or doesn't know why, but he doesn’t remember (and this boy has an awesome memory otherwise). His mind has protected him. I know this is not for every child, but I am thankful for it. So, I’m not quite sure why I am writing this, but just to share how things can get better, even from the parental point of view.

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Some, not all, PANDAS kids do have setbacks post dental work. I agree with antibiotics. If you start them a few days before and then at least a week+ after. Ask the dentist about Ibuprofen. Not sure if you can take it with dental surgery as it could thin blood. Hopefully, those who have been there will chime in. My son is only 7. He does fine with cleanings, loose teeth, falling out teeth, and did fine with anesthsia with t and a surgery. Does anyone have any pain medication suggestions/warnings for Ozimum?

Okay, some PANDAS kids have frequent urination/bed wetting during an exacerbation. I know that, but I cannot remember why. I know I've heard the reason before, but my memory escapes me this time. Can someone give me an explanation?

Believe it or not, my son had some rages come to a stand still if I turned on SpongeBob. He'd go from tearing my clothes, kicking,hitting to a trance in front the tv.I would pick him up and turn his face to the tv until he realized it was on!That was the first time my kids ever watched SpongeBob...now I can't get the darn show off the tv. I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital! No, the ped does not know about the steroid. I did not think to call her. Thanks Kimballot! Thanks I may call but there may be tears this time!! I can hold him down but he fights me so hard, a couple months ago I injured my neck "wrestling" with him...costed me $1200 at the chiro to fix it (I had a previous injury). I usually ride out the rages, but last night's was 4 hours and tonight I panicked and thought I WON'T LAST THAT LONG! I just wanted someone to inject him and make it stop!