simplygina

We are on day 1 of Biaxin and already we have stomach upset and a headache. We've been religious about the Probiotics, he's been eating yogurt and bananas, I even got him to drink a little ginger tea. He did take a nice long epsom salt bath with some essentials oils and I've been giving him Ibuprofen. He seems a little better but I'm worried since we are only day one and I have such high hopes for this abx. Do the side effects go away or just keep getting worse? Is the XR version easier on the stomach like with Augmentin? Not sure we'll make through 10 days if this is how it is going to be. On the bright side, after a hellish day yesterday, things have gone amazingly well today. It could be that he went snowboarding and is exhausted, but usually that leaves him grumpy, and he's not. I know it is too soon to tell, but I'm feeling hopeful.

We tested negative. .01 Igg and .07 IgM. I was really surprised. After talking with Dr. T and discussing how much worse DS gets when he is sick, he still felt like a trial of Biaxin was in order so we start tomorrow. I will have to tell DS about the cough. I hope his tummy can take it. He's done well both on Omnicef and Augmentin, but after being on a month of abx, I'm worried it will affect it. I've got him taking a high dose probiotic twice a day, hope that's helping. He really likes kefir, so I will keep giving him that as well. I'm hoping for quick results as well. This week has had me in tears far too many times.

I think my son has reread every single Harry Potter book 10 times. I was so proud of him for reading them all, but when he just kept rereading them over and over. I actually hid them for awhile hoping he'd start reading something else. He read a few other books but just didn't get into them. Now he's zooming through the Percy Jackson series.

Talked with Dr. T today. I cannot mention how nice it is to talk with someone who not only knows what PANDAS is, but has the expertise to give me some feedback. He answered a few lingering questions I've had and confirmed what I'm seeing does fit the PANDAS spectrum. I've tried twice to get my pediatrician to switch to a macrolide without success. With Dr. T.'s help we are going to give Biaxin a whirl. How quickly have some of you seen success when switching to the "right" abx? We've got a 10 day prescription. Of course I'd love to be one of those "we noticed a difference within 2 days" cases, but I'm not holding my breath. I'll settle for day 3 We've tried Augmentin and still ended up with a confirmed ear infection and a probably sinus infection. Switched to Omnicef. The ear seems to have cleared but not the sinuses. Hopefully this will do the trick. What I'd like to see improve most is the emotions. He's not mentally in a good place right now. He has zero zest for anything including the things he used to love. He used to be a very enthusiastic eater and would often say, "my compliments to the chef!" about things as simple as spaghetti or tacos. Now everything is just "ok". He used to love snowboarding, riding his bike, and karate. Now he has no get up and go. He'll get totally obsessed about doing something (always something we don't have the right equipment for) and just nag nag nag until we do it and then it never lives up to his expectations. Right now he wants a bmx bike. Before it was fishing. He honestly pestered me for a month. Then he went and was over it in 10 minutes and decided it was boring. I'd like to see some joy, as opposed to obsession about something. He has been enthused about reading a new book series, but it definitely borders on obsessive as well since he's basically holed up in his room for 2 days for each book. He isn't even playing much at recess anymore, so most of his friends are busy playing without him. It's hard to watch him become less and less active in his life. Anyway, I've definitely got some hope right now after a month of total frustration and two weeks of worry. Dr. T. is incredibly personable, polite and knowledgeable without being arrogant. He genuinely seems to care and I felt like he was really listening and assessing our situation. I'm so grateful he took time out his busy schedule to talk with me today. It has really put me in a much better place.

I'm so sorry you are going through this. My heart breaks just reading this. PANDAS sucks!!! The only thing I have to add is to make sure you wean him off the Lexapro very very slowly. It is once of the harder ones to wean off because its half life is short and the body goes into withdrawal very quickly. It's taken since October to get my son down to 25 mg of Zoloft (from 150 mg). This is twice as long as the usual weaning schedule. With each reduction there is a bout of emotional issues. With this last little bit every time we try the withdrawal is severe and we just can't do it. I'm just waiting until he's doing better because right now is the worst I've seen him so far. Wishing you and your son quick turn around!

My son does this too. Like the rest of his behaviors, it seems to cycle in and out. He also has described it as getting stuck.

My son is in the 4th grade. I think kids start to notice pretty young, but around 4th grade they start to worry about looking cool and fitting. My son has been very open and up front about not being able to help it. He just tells kids that something in his brain gets messed up and tells him he has to do it. So far his friends just accept it and the other kids seem to as well. He did have one girl he sat by ask to be moved because sometimes he has to read out loud. I think that is more OCD but it is hard to tell the tics from the ocd sometimes. Anyway, he said he didn't blame her, he knew it could be annoying. His teacher has been amazing about it, which helps a lot I think. As far as I know, no one has really made fun of him. Usually they just ask in that straight forward way kids have, "Why do you do that?" I think the best route to take is just educate your son so he can educate others. We have also done other things to build my son's self esteem. He has taken karate for about 3 years now and is on the tournament team. This has helped him in so many ways. The physical activity (he practices on average 6-8 hours a week) helps the tics tremendously. While he is there, he is so focused he has almost no ocd or tics at all. The support of his coach, who is a fantastic role model, as well as his team is really cool and means a lot to him. He is also confident that he can protect himself if needed, but is also learning the wisdom and discipline of martial arts. And the other kids respect that he is good at something. If there is something your son shows a lot of interest in I would highly recommend helping him become really good at it. I do worry about Jr. High. I guess that is one of the reasons I want to figure out if it is regular TS and OCD or PANDAS. I want the know the best way to help him manage it either way and if it is PANDAS I really want to get it figured out before then. Either way, I'm sure it won't be easy, but we'll deal with it the best we can. My son is an amazing kid. I have moments where I realize how much he is dealing with every day and I'm in awe that he handles it as well as he does.

wow. there is actually a name for this. it looked it up and it completely describes what used to happen all the time for about 2 years. i'm glad i trusted my hunch that is was related to migraines and found his triggers. the magnesium seemed to make it it a lot better. he's only had one episode in 6 months. for a while last summer it was happening a couple of times a month. luckily his episodes never lasted long. the things i've learned from this board!

We've noticed the same pattern and I'm wondering the exact same thing. Since we tried Zoloft assuming it was a day light/seratonin issue, like SAD, and it didn't change anything, now I'm left wondering about strep and allergies.

so don't want to throw thoughts in you don't want, faith - but i feel you are open to all thoughts and then sort through them and do with what you will. . . when i see things you write, i do just think about our experience -- that we had such a horrible experience with azith, where most see good results. our ped at the time was willing to write it off as 'strep over, case closed' and send us on our merry way for years of behavioral treatments. we switched peds, luckily to one who listens, who believed he had a sinus infection, which was confirmed on CT as all six cavities infected and saw 100% improvement on keflex. i'm not trying to convince you of anything - i just really believe that some kids have different reactions to different abx. Just curious how you knew it was sinus infection. Was it obvious or something that was coming and going? keflex is a cephalasporin correct? How long did he take it? The reason I ask is that since my son Myles was a toddler, he has bags under his eyes a lot. Not all the time though. I read in Dr. Bock's book that the horizontal lines under the eyes are a good indication of allergies or nasal congestion, swelling, and increased blood flow to the ethmoid sinuses. did you see that with your son? For mine it is there more often than not, and when he doesn't have them it is a pretty big change in the way his face looks. He's taking omnicef right now for an ear infection. If it is a sinus infection, it will be interesting to see if the lines disappear for awhile. I've been thinking I need to have him tested for allergies as well.

Wow! Thanks Dr. T. I will do that.

I haven't noticed a correlation between weather and tics or moods. I don't think there is one for my son, Myles, but I'm going to keep an eye out for that since around here March goes from warm to big snow storms back to warm quite a bit.

It's so hard to say if the abx is responsible for certain improvements when everything else is so much worse! I did notice something this morning. Normally when you cuddle with him, if you put your arm around his middle, he starts this stomach in and out tic. This was his first tic and appeared with the OCD. Today he didn't do it. He had lots of other stuff, but that one was gone and it is the one that is always present. Somebody talked about their child regressing to the age he first got PANDAS with each exacerbation. I noticed that this week DS is waking up really early again, coming into my room to cuddle and wanting to talk talk talk. I thought we had grown out of that. He started doing that really young. For about a year he's been sleeping later and staying in his room to read or play his Nintendo DS, which seems about right for a 10 year old. I'm not a morning person, so while I missed the snuggles in the morning, I have always hated the non-stop talking. He doesn't even care if you answer, he just talks. He used to get soooo many ear infections as a little guy. Before we put tubes in his ears we were doing abx, a week later he'd have another one so a new abx, over and over. Finally I guess we pulled out the big guns so we could get the tubes because we were driving to the doctor every day for 5 days to get an abx shot. The tubes helped big time with the ears. Then we started all over again with strep. The T & A seems to have helped that too. Interestingly, I just listened to the episode on Autism One Radio with Dr. K. He said the operation seems to help for about a year, then it doesn't. We're at 1 year and 3 months. Whether it is strep or just a virus, overall he doesn't get sick as often as he used to. But when he does I know we will definitely see an increase in symptoms. Definitely possible he has a virus and some bacteria took advantage of that. His ear feels much better now and his head is draining. He told me his throat hurts again, but it looks like it is drainage from the head, especially now that he has a cough to go with it. Fun times.

Well I think that is what we have going one here. I think DS has probably had PANDAS at least two years, but more likely the exacerbation that brought on the OCD wasn't the onset. Looking back he has displayed PANDAS symptoms from about 3 on. Any illness seems to make everything much worse. Would that technically make it PITANDS? I guess that is why I'm beginning to wonder if we should just buck up and go see one of the main PANDAS doctors. The last time we talked our dr. he said that the way he saw it was that if there weren't elevated strep titers, it wasn't PANDAS. I need someone who can look at the whole picture, illness history, behavior history, academic history etc. and connect the dots so we can actually start helping this kid.

well, i figure the omnicef will clear the ear infection and a sinus infection if he has one. I just think it is interesting that he happens to get all 3 at the same time. to me that says the strep is in more than one place, OR he is harboring strep and when he gets a cold the strep is opportunistic.

It doesn't really matter if he's "approved" or not. I have a really really high deductible (DH is self-employed) and until we meet that they don't pay anything anyway. the only year we've ever met our deductible was 2008 when my son was in and out with strep all the time, plus therapy, plus the T & A removal. And we met it the 2nd week of December! (Once I realized we'd met it I got DH in for a vasectomy on the 23rd of Dec. I swear it was pediatrician who did vasectomies on the side LOL. I didn't tell DH that until after Anyway, at this point I think it would be worth it. I'm sick of dorking around.

this is exactly what I think is going on. Well it will be interesting to see the new titer results.

Well as I've posted before, my son was taking Augmentin for 10 days, some improvement, then off for 4 days, then back on. 2 days into the second round his tics and ocd ramped up BIG TIME! Sunday he started complaining of a sore throat. Tuesday morning he complained of his ear feeling clogged up, and he now had congestion in his head. We got in to see the doc and he confirmed an ear infection. He thought the throat looked fine, and it did look better than when I looked at it on Monday. He said he didn't know about a sinus infection but since DS wasn't complaining he didn't think so. I keep reminding him that DS NEVER says it hurts, he just says it feels weird or feels plugged up. He asked if things were improving on the Augmentin and I said they weren't since DS got sick it was all much worse. He could see the visible ticcing and evening up. He gave me Omnicef and we decided to run lyme, myoplasma and I saw ASO and AntiDNAase on the lab form when I checked it as well. We swabbed the throat and he confirmed he would culture it as well. Two days later the ticcing and OCD as the worst it has ever been. He usually cycles through OCD issues and tics. Right now he has every tic I've ever seen and every OCD issue I've ever seen as well. Luckily, his mood is fantastic. He's patient and nice and not at all oppositional. His handwriting is horrendous and I sat down with him to do a basic math sheet last night and he literally could not do it. It took forever. Not only could he not remember his times tables, but he was distracted by EVERYTHING!!! I was doing my best to be patient but I was getting really frustrated by how long it was taking and the simple mistakes he was making. But, again, his mood surprised me. We have had some serious upsets during homework and usually my lack of patience would have started a battle. Last night he just looked at me and said, "You're feeling pretty impatient about how long this is taking, huh?". Which of course helped me suck it up and help him finish it up. Most the results of the blood draw came back today. Test results back so far: Rapid strep: negative (not surprised) Beta Strep Group A Screen: negative (this surprised me) Lyme Borrelia Burgdorferi Abs: .44 Normal Mycoplasma: Igg .01 Igm .07 Normal I was so hoping the culture would come back positive. I think it is interesting that the last few times DS had an ear infection, sore throat and sinus congestion he tested positive for strep. When I was a kid and got strep, my mom always knew it was strep because we didn't have congestion, just a sore throat. I really think the strep spreads to his ears and sinuses. But this time, I think the Augmentin may have cleared the strep in the throat, but not ears or sinuses. Is that possible? But you can't swab ears and sinuses. Unless his strep titers come back elevated I still haven't established a direct relationship between exacerbations and strep. I guess I have established an exacerbation during an illness, but for my doctor that isn't enough. I'm just frustrated because I don't understand why some kids don't show elevated titer responses. how on earth do you know for sure if it is PANDAS then? Did I jump the gun and miss our connection because I put him on abx? I'm not sure how I'm ever going to establish the strep connection. If his strep titers don't come back elevated, I'm going to seriously go crazy. We may just end up using our frequent flyer miles to go see Dr. T. I know my crappy insurance won't pay for it. I'm tired, I'm confused and I'm broke. I honestly don't care if its PANDAS or TS/OCD. I think he fits the PANDAS profile to a T, but I just want a doctor that knows what to do if it is, to agree with me or tell me it's not. I don't want to have to educate and prove it. I need a vacation without kids where I can just forget about all of this for awhile.

Mine did for several years. I am just realizing this is another piece of the PANDAS puzzle. Now that I think about it, it began the same time his other symptoms did as well. We finally concluded it was a stomach migraine. So many other people have mentioned their kids have cyclical heachaches and others mention their kids have floaters, all signs of migraine. It seems migraines are another thing that goes with PANDAS. He'd get dizzy, tell me his tummy hurt, about an hour later he'd say his head was starting to hurt, he would be totally green, then he'd puke, feel better and fall asleep. It really only ever happened at night and tended to be on the weekends. We finally figured, after I did some charting, that it happened after eating something like salami (nitrates), which he was eating on Friday afternoons at his grandmas house, or if he'd played a ton of video games or if he saw a high action movie, like Transformers. Usually, if I catch it quick enough and give him Ibuprofen it helps. My doctor also told me that Benadryl helps, so if the Ibuprofen doesn't knock it out in about half an hour I add a dose of Benadryl and send him to bed. Seemed to help sometimes, but I always knew once he threw up he'd feel fine. Since magnesium really helps migraines as well as tics I started giving him 500 mg day in October. Since then it has only happened once, after he went to see Avatar in 3D. That time I gave him Ibuprofen and he took an epsom salts bath with rosemary and lavendar essentials oils. That worked really well.

Hi yes, we had my son under the care of one of the early PANDAS researchers dr Tanya Murphy for over 6 months(2000/2001) when he was newly diagnosed TS as, altho we have a clear family history of TS and my son had mild tics and other neuro stuff from infancy, his sudden and dramatic onset of severe tics and OCD and depression just after his 10th birthday made me want to check re PANDAS, which I had read about on the net, in a piece about dr Murphy my son has never had strep infection that we are aware of, and all the cultures and titres etc indicated to dr Murphy that he was not PANDAS, tho they didnt rule out PITAND, as he was +ve for epstein barr (no mono) he also seems to react negatively to prescription antibiotics so not a treatment option, tho as mentioned above, he has been on assorted natural antimicrobials as supps and dietary additions for many years Thanks for the info!

my TS husband(in his 60s) had massive tic triggers and other alarming reactions to the steroids and altho he didnt get as psychotic as clonidine made him he had a "nuts" element to his reaction tho it was more massive panic/fear/phobia kind. he still feels (a year + later) the steroids altered his cognitive focus as well as the elevation of his TS tics, some that he hadnt had since childhood as an aside, and something I have posted before on the TS forum here, altho my husband has genetic TS/ OCD etc (considered "bad habits, moodiness & eccentricities" when he was a child, his grandad and dad had them too)...he does have a vague recollection of the stories his mom told of him nearly dying from a strep infection/fever as an very young child, and that he had it so bad, his grandmother put him in a tub of ice water to control the raging fever. His mom and dad are deceased now, so I cant try to get more info on that, but I wonder if that strep ? scarlet fever could have been what "triggered" my hubby's TS etc I realize your son is grown and doing really well, but did you ever consider PANDAS? I've noticed in several posts you say that his TS/OCD is the regular kind because both your DH and other family members have it too. But PANDAS also seems to run in families. At the age your son and DH are its obviously neither here nor there. Just curious. I guess I'm still looking for clues to whether we are dealing with PANDAS or not.

Here's a link I found with a lot of information. Still reading it and trying to comprehend it. One interesting this I did catch was how inflammation seems to be key. http://www.textbookofbacteriology.net/S.pneumoniae.html My basic question is: Does this strain of strep cause the strep titers to rise and would the ASO and AntiDNAase tests detect it? My son has had several instances where he has had strep, ear infections and a sinus infection all at the same time. This leads me to believe that the strep is causing the ear and sinus infections as well instead of him having a viral cold and a strep infection at the same time. He was taking Augmentin but while on it came down with a sore throat, an ear infection and his sinuses are totally gunked up. We switched to Omnicef. The doctor didn't say he had a sinus infection, he just said if he did the omnicef would take care of it, which it has in the past. We did a a 48 hour culture and the results are due back today and we reran his ASO and Anti-DNAase. I wonder if this will show up? I'm trying not to freak out, but our local paper had an obituary on Sunday of a guy in his 30s that died from strep that had gone septic. Seems like this is the strain that would do that. Yikes!

I think sometimes just putting pressure, or stimulating a certain area causes certain tics. For instance, my son does a stomach tic (pushing it in and out) when we cuddle in bed and I put my arm around his middle. Also, when he has a cold the regular sniffing turns into tic sniffing but goes away a week or so after the cold. Drainage from a cold will also start a vocal throat clearing tic that goes away with the cold as well. Maybe as he gets used to it the tic will go away.

A few kids don't tolerate them well. You could try a different strain of probiotic. Also see if the one you are using has a milk base. If it does, try one without.