thereishope

How about we leave it as is for now. The public is confused enough already.

Tattoomom... I have heard that things like video games and computers can make kids tic more. It sounds like Ibuprofen won't work right now for your son. Like I said, it doesn't rule out PANDAS. I know of others who have said their PANDAS children did not have an easing of symptoms from Ibuprofen. zazuk2010... As for a dosing, my son is about 44 pounds and can take 200mg (per a doctor telling me). As for how often, it varies. Sometimes, I have to give it every 6 hours. Sometimes one dose in the morning is good for the day. I wouldn't do 200mg every 6 hours long term. Try one dose first and see at what time it starts to wear off and from that you will see what your child needs at this time. If he takes liquid meds still, I use dye free Motrin.

I'll tell you right now, my husband will NOT like the BEARS acronym. He's a Packers fan. Seriously, he'd freak out.

I actually like the acronym NSAD because it includes the word "sad". But it may be too much like NSAID. But then, NSAD is helped by NSAID's. NADS...is that a women's wax product for hair removal? I need some of that holiday punch....

I remember this being talked about before and it kind of fizzled out. To be honest, the acronym SINS doesn't settle well with me. What these children experience and do shouldn't be associated with the term "sinning", hinting they are controlling their actions. It may also make an older child think they are sinning. This would be really bad if they have a compulsion to confess, pray, etc. What I have a problem with is PANDAS is so long. People tune you out by the time you get to "neuropsychiatric" and it just confuses them. Then they get really confused when I then start using words like basal ganglia. Now I just say brain. I don't have a suggestion as a replacement right now. I think I like the word "autoimmune" being in there. I think most people understand that word.

I also remember seeing valerian root being listed as a supplement that helps with OCD as cited on the old OCD Foundation website Thanks, everyone. I bought the 3 mg. capsules, so I guess one should be enough! I didn't see the time release version on the shelf, but maybe I'll try that next time. Peglem, do I need to go to a natural foods store for valerian root, or can you find it at like a GNC or Vitamin Shoppe? Is it a tincture or a pill/tablet? And how much do you give your child?

And I'm thinking you are hesistant on PANDAS mainly because of the lack of a documented strep infection. Is that correct? His tics came on around age 5 1/2. Was that shortly after kindergarten shots? Our son, now 8 years old, has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive as a toddler (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then added eye blinking in March of 2008. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. He had strep titers done back in March 2007, 3 months after he had his first explosion of tics and was negative. (ASO was 7 DNASE-B was <60) He saw a Pediatric Neurologist in April 2007 who said it was transient childhood tics/anxiety disorder and recommended counseling and said it may or may not end up being Tourette Syndrome. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had Swine Flu in October and took Amoxicillan during the H1N1 for an ear infection. Ever since, he's started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), shoulder tics, and he wipes his hands on his pants or the couch constantly and he just appears to be very nervous and fidgety. He constantly washes his hands but hates to dry them off. I've noticed him licking his hands this week... that is new. We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders, several blood disorders (his baby sister has an autoimmune-blood disorder), ADHD, Anxiety, & Depression.

What I have noticed as being triggers for my son's PANDAS is most important STREP. Nothing compares to a strep triggered exacerbation. More "minor" triggers for my son are viruses, allergies, stressful situations. When I can tell he is in a scenario that may cause his blood pressure to rise a lot, I really try to pull him out of it. To my knowledge, he has yet to be in the situation of another family member having strep and not him. So I don't know how he responds soley to exposure. I started a thread a while back on enviornmental triggers. Whether they aided in laying a foundation for PANDAS being able to surface in the first place or whether they are a trigger for pre-existing PANDAS. It was a bit ago so there's more to add to the list. http://www.latitudes.org/forums/index.php?...ic=5100&hl= I would also add anesethia as a possible trigger. I don't know if chlorine is on that list either.But I think that's a big one esp with tics. Is chloramide iswhat is the tap water that makes things worse for people?

I would be suprised if his vision changed that dramatically between summer and now. Did the eye dr ever suggest an opthamalogist? They do a more intense eye screening. His eyes are overly dilated or anything, are they? Did they give him eye exercises to do? I have a friend who has one eye that is stronger and she has to do eye exerices every day for the bad one. Just try to make sure he gets enough sleep and try to get him to wear those glasses a little more often. He'll love that:)

Your Christmas miracle has come! You can be testy with your husband. that's okay:)

Welcome. My son was always given amoxicillan for his strep, but I was also not on this forum yet. I would actually notice the worsening continue for 3- 5 days and then start to notice an improvement. I must say, now that I know more, if my son get strep again, I will request something else. I often wonder if recovery would have been faster if he was on something else. My son does not classic strep symptoms either. None of my 3 kids do. His PANDAS symptoms are what brings up to the dr for a strep test. Here s an article that is often passed along that explains how amox and penicillan won't always erradicate strep. http://www.entrepreneur.com/tradejournals/.../169459644.html

One more thing I thought of. When my son had a bad setback during his 3rd strep triggered excaerbation, we took him in for another strep test. It was negative. We were then told it we were seeing waxing and waning and to take him to the psychiatrist. It in fact was his allergies. That's when we learned allergies was a trigger for him. So, to "professionals" it appeared he had OCD and he was waxing and waning, when in fact it was a different trigger we weren't aware of. Once we got his allergies under control he was back in recovery mode and doing better. The worsening of PANDAS symptoms seemed to occur before the physical allergy symptoms surfaced. All he had was horrble red eyes. I guess his PANDAS is more sensitive than the rest of his body was to the allergies.

From what I've experienced myself and have read some kids do have other issues in addition to PANDAS. Whether it be sensory, speech, or another disorder. Some question whether it is from an undetected PANDAS episode that happened early on in life and some say it is just another layer of their child totally separate from PANDAS. So, there is a chance a child has things like anxiety that is part of them, then they have PANDAS in addition to that. For my child, he had/has a pre-existing speech disorder. He also has some quirks that are just him. Also, I will reference to Sammy from Saving Sammy. Even though he has been PANDAS symptom free for quite awhile, I beleive he also has ADD or ADHD. That's part of him. In reference to not having a documented strep test. I am aware of some others like that. Perhaps they never had strep and it was a different original trigger or your child did have strep very early on in life and you just never knew it. Again, many PANDAS children are asymptomatic when it comes to strep and if your child is an infant or toddler, there are 100 reasons you can think of for the behaviors that may have surfaced at that time and you would have never thought of going to the docs, esp for a strep test on a child that seemed healthy. So, would you mind giving me a timeline again. At what age did you notice his first tics? Were they gradual and increased or was an explosion of tics out of nowhere? How would you describe your child when he was a baby or toddler? One more thing...with my son when it is strep triggered, it is a noticeable, obvious start when an exacerbation comes along. It's like an explosion. When it is another trigger like a virus, I am left questionnning and wondering if his PANDAS is being triggered because his viral triggered reaction is more subtle and not as bad. Since he is 6 is why I have a more difficult time distinguishing bet PANDAS and a 6 year old being moody when it is viral triggered. My son does not have tics, it's more emotional, OCD, etc. Finally, when there is a viral or allergy trigger when he is still recovering from astrep triggerered excaerbation, it is obvious. The OCD kicks up. I always feel bad saying this, but it really is different for each kids. We all seem to have overall similarities, but each child has different patterns of healing, different triggers, and severity along with each trigger varies and idifferent symptoms. I'm just fortunate that for the time being I think I kind of know how my son reacts to different triggers at different times.

Perhaps what appears to be waxing and waning as associated with TS or OCD may be the result of a virus, exposure to strep, etc when it comes to PANDAS. Also, during an exacerbation, there are ups and downs where you are making progress then you get hit with a setback.

Have you asked him if his vision is okay? Whether it is blurry or if he's dizzy? Perhaps the squinting and the headaches are related. The reason you are advised not to mix a steroid and Ibuprofen is together it takes a toll on the stomach. I don't know for sure, but I think it would be okay to give him the Ibuprofen now.

Oh, sweetie, I am so sorry. There's still time for a Christmas miracle, right? I've experience 2 very bad, very depressing Christmases before. Only one was as a mother though. All I can say is if you have to, try your hardest to put on that "happy face" for your kids. Really try hard not to let them know you're depressed because of what is going on. You don't want to chance him feeling responsible for your sadness. I want to say be open and honest with him, but kids and teens can carry a lot of guilt even when it does not have any merit to be there. View the holidays as the start of a new beginning for your family. It will all come together. You are in the midst of a turning point. Granted, it may not be resolved right now, but you are on your way. I sure hope you get your Christmas miracle. And its christmas I was sooo greatful 2 days ago singing dancing .I was even happy that my mother in law was comming haha Now I hate everyone and everthing even christ,mas I am a teacher and Im off for the next 2 weeks most people would be happy I wish it wasnt the holidays because everyone is off and no one can help me I am sad Melanie

Why does life have to be such a soap opera? No one would believe this stuff if we told it to them. Little do people know how poorly the lives of children are being handled by some of the medical community.

Oh, man. Hopefully this is just the final stretch of this whole ordeal and all will be better soon.

Personally, I wouldn't go. I know you will get a lot of flack and comments for it, but I wouldn't. I even asked my SIL not to send a package here once that she needed to because her daughter had tonsilitis and was awaiting results of a culture. I said to us it is life and death and I just couldn't chance anything. Also, did the ped already say he/she would give proph amox to the siblings and parents? Even so, they have to be on it for 24 hours for it to kill strep if they did have it and when would she gets the script? It's hard to get a dr to give meds to other children like that. I don't think she realizes how hard it is to get meds sometimes. I could go on and on with scenarios and reason. I worry a lot. Let me know if you want more:)

If it's a reaction to the meds, which it does sounds so to me, hopefully, once they are out of his system completely, things will settle. when I once had a severe reaction to an antibiotic, once I realized the connection and went off of it, I noticed an improvement in side effects within a couple of days. Let's hope it's the same with your son and you'll see improvement soon.

I don't really know what to say. When my son would have rages, I'd also have to hold him down and at their worst, they could last 2-3 hours. When my son was on antibiotics (not Zith) he would worsen for about 3-5 days before any improvement. You say he did "snap out of it" for a bit before the all out rages occurred? I am really trying to think of suggestions here. hm. What antibiotic was he on prior to the Zith? Was he taking a probiotic? Does those webistes where people say they experienced similar things after Zith say how they got back to normal? If you don't try a steroid, give him Ibuprofen for now and try, just try, to keep him calm. Will the tv help? That was one thing that got my son to stop sometimes. It put him almost in a trance.

Maybe you mentioned this and it's too early for me to think. I have all 3 kids at home on vacation and I have all my baking to do and start cooking. It's gonna be a long day! So, back in Sept, do you recall a possible cause and effect for the probelms that surfaced. Perhaps not only in a matter of days but weeks? Did he go on any antibiotics back in Sept? When you think back through life, have you notice an abupt change in him before? Yes.. they said they would. The swab was done today. ADVIL - I gave him 3 yesterday, the first time doing this. (He's 5'8 at 120 lbs) I had given him 2 last Thursday but we didn't see a difference. We noticed that his tics went away with the 3 I gave him. It took about 30-45 mins to kick in but we noticed that his tics did stop. He does a zzzz sound... like he's saying sexy. I gave him two this morning for his headache but we were rushing to go to the doctor.... I didn't catch anything if anything did happen. It's hard giving this kid anything because he doesn't like taking meds. Our appointment with the disease specialist is on Jan 15 but my daughter said that is final exam week. So I need to move it. Not sure if the appointment being so far out is going to impact our diagnosis. We notice his tics come on when he's not doing something that's interesting to him or he's being rushed. He's well aware of the tics. I talk to him a lot. We discuss the obsessive thoughts .. that would be like.. girls... or how he feels the pressure of being popular in school.. the whole puberty thing. We talk about his tics sometimes. I ask if they affect him in school. When we finally went to the doctor it was because he finally confessed (because he feels like a freak for having them) that it was affecting him at school. So here we are. I can say he's a whole lot better now than back in Sept. Just today we noticed he's back to his talkative and whimsical self. I'm just afraid he'll go back to the way he was back in Sept if he gets sick again with a virus/strep.

That's interesting. I remember looking at Buster's PANDAS history in the pinned threads. I believe it starts in the late 70's. Coincidence?

This is the thing about Ibuprofen...it works for some, not for all, even when the child is definitely PANDAS. My son never had tics, but bad OCD. When he was in the middle of a very bad exacerbation, the Ibuprofen did not work. However, when he has flare ups as a result of viruses, it helps tremendously. Like some have said, even with IVIG it seems like tics are the most stubborn symptoms to go. So it does, in a round about way, make sense why they would be stubborn with IB too. When Ibuprofen works at ridding of PANDAS-like symptoms, I think it is a good indicator of PANDAS. When it doesn't work, it doesn't rule out PANDAS. Does that make sense?

By any chance did they do a culture? As for Advil, do the tics go away when on it? With my son, sometimes it takes 1/2 hour to kick in, then begins wearing off at the 5 hour mark.When's your appt with he specialist?