simplygina

We tried Augmentin and saw some initial improvements but DS still came down with an ear infection and a sinus infection on a pretty high dose. After going through his medical record I realized that he has had some other times where he came down with other infections while taking it. We then tried Omnicef. It did kick the ear infection but didn't touch the sinuses. We also had the absolute worst 10 days with daily emotional meltdowns and depression accompanied with rage. Prior to that he was pretty stable and when we went off we started to see him stabilize again. Then we tried Biaxin, which is clarithromyacin, a cousin to azithromyacin. With this we have seen remarkable improvements very quickly. His sinuses cleared up in about 24 hours. He's been taking it about 3 weeks now. His mood is soooooo much better and there is a noticeable difference in the amount of OCD and tics he is experiencing. I'd say about 50%. He seems to either have allergies or a cold right now and does have a corresponding increase in symptoms, but it is minor. The last cold he caught at the beginning of February put us into a full blown exacerbation, so I think the Biaxin is holding off whatever tends to grow in his ears and sinuses (my guess strep). We haven't done the test yet, but I plan to get the blood drawn this coming week and send it off. There isn't much doubt in my mind at this point if it is PANDAS or not, but having the test results will give us more information I guess.

Exactly what I was thinking. None of my behaviors have ever been soooo over the top that anyone else would ever think twice about them beyond being my particular quirks. My son's symptoms are definitely worse than mine, beyond what a parent could just rationalize away as quirks, but they still really aren't bad. Most people don't even realize he has tics or OCD. And while most people would agree that he is emotionally an intense child, he is well liked by kids and teachers alike. And as he's grown he has learned how to manage much of it. Even if we didn't do anything, I tend to think he'd be functioning just fine as an adult. But since we have started the Biaxin and noticed such an improvement, especially in mood, I do hope there is a way to help him get from here to adulthood in a happier, more normal state.

Sorry, I haven't read all the responses yet so forgive me if I'm repeating what someone else has said, or have missed something. My son felt this way on Omnicef. It immediately went away after we stopped the 10 day course. He would tell me he wanted to kick holes in the walls, rip the room up and scream. I was really worried about a total mental break down. Have you tried stopping the Augmentin to see if she returns to a more normal state?

I thought Dr. T. treated Lauren Johnson? Just curious.

OK, now I'm starting to wonder about myself. When DS was diagnosed with OCD I looked at my husband and myself and our families and it was obvious that we both had some OCDish behaviors ourselves. I figured he inherited from us. Now that we are looking at PANDAS I've wondered how our behaviors fit in. Did we predispose him to PANDAS? Or could I possibly have it as well? I had tons of ear infections as a toddler and strep quite a bit as a child myself. Other than that I was almost never sick except for a bad virus in my teens (probably EBV) and a horrible sinus infection at 20. I almost never got colds until college. Anyway, I remember about a year or so ago I would realize I was piano playing with my fingers whenever I felt stressed or was deep in thought. It was just on my right hand, like i was doing a quick piano trill. DS had started doing this and I assumed I had just sort of picked it up from him. It went away after a few weeks once I became conscious of it. Maybe we were both reacting to strep at the time? As a kid I couldn't manage to sit on a seat without falling off. My parents were very kind and used to just laugh when I would wiggle myself off the chair at dinner. Now I wonder if I was having choreoform movements. My mom told me when she was a kid she would put her hand out the car window and pretend to jump the telephone poles with her hand. One day she realized she felt like she HAD to do it. She decided to stop and did, though she says she STILL has the urge sometimes. I went through a period at around 20 years old after a bad breakup with my long time boyfriend. I was a part-time receptionist and my job was extremely boring and I was alone in the office a lot. I would feel every single hair on my head and pull out the ones that didn't feel smooth enough. I did this for a few weeks. One day I looked down at my desk and saw this huge pile of hair and realized I was going to be bald if I didn't stop. I also thought how weird it would look if my boss were to come in and see a huge pile of hair on my desk. It was really hard but I didn't do it anymore. Even now when I'm stressed I realize I am feeling around in my hair. When I find a courser one I still have the urge to pull it, but I won't let myself. And the skin picking. I've been a skin picker since Jr. High. My mom used to pick at our skin as well. It's worse when I'm stressed. It's like I go into a trance and pick away. Mostly it is at blackheads on my face, which come out and don't leave a mark. I do tend to pick pick pick at bumps on my arms though until they scab. Thankfully I don't usually have a lot of bumps on my arms! And if I've picked something to a scab, it is almost impossible for me to leave it alone. Lately I've been very judicious with the Neosporin because it helps things heal so much quicker. I've been pretty lucky in the scarring department. If I see a blemish popping up it is about all I can do to leave it alone. I've noticed that a bad day with my son ends up with me sitting on the bathroom counter picking at my face for an hour. We lived in a house that had no counterspace in the bathrooms, just sinks, and I did much better there. A big countertop just calls me to climb on up, sit down and pick awhile. The bathroom at my parents house is especially luring for me. My husband hates it. He has made me promise to never pick at our son's faces. Now that DS is getting a few blackheads, it's hard. But since I know he has OCD, I would hate to cause him to start picking too. DH is a nail biter/picker. He bites and picks at his nails until they bleed. They always look so sore and red. And of course it is worse under stress. DS was doing this during his last exacerbation but has since stopped. For awhile in college I was a compulsive list maker. Thankfully my family always just joked about "Gina's lists" and were amazed that I would just tell them to throw them away when they found them. They weren't actually about recording things I guess, more a need to get thoughts down. One day I realized I was using the lists to fool myself into believing I was doing something, when in actuality most things never made it past the list. I made a vow to not make lists and to simplify my life to the point that I could remember all the the things I had to do in my head. I went years without making lists. As a parent and homemaker I definitely have to make lists now, but I've made computerized ones so I don't need to do it very often, lessening the urge to start up again. I get the urge when I read books that have a lot of good information in them. I always thought that this was an attempt to get past my ADD. Now I realize it has components of both disorders. As teenagers, my friends and I used to touch the ceiling whenever we went over railroad tracks and say the name of the boy we had a crush on. Kind of a magic spell to make him like us I guess. I kept doing this even after I was married. Then I had to add the name of my first son. After I had my second son and realized I was muttering these names like something bad would happen to them if I didn't say ALL of them, I quit. Mostly I don't even think about it anymore, but sometimes I do and remind myself it is silly and move on. My PANDAS son does something similar by making sure he says the name of everyone in the family when he gives his good night "I love you"s. Including the cat and dog. Or if he says he loves the dog, he has to tell me he also loved the dogs we've had before that have died. I remind him that a feeling is in his heart whether he says it or not and he doesn't have to list them all out. Nothing bad will happen and it doesn't mean he doesn't feel the love. He's beginning to see that and understand it. There is definitely a habit/comforting component to it all. Especially the skin picking. In one of those strange, twisted ways, it was a bonding time with my mom. I must get some oxytocin boost or something when I do it. These things are very soothing and satisfying and seem to be "fixing" something. Sort of like meditation because my mind just lets the thoughts come and go and I feel very relaxed when I'm done. It wasn't until I realized that they really didn't actually fix anything that I have managed to kick most of them. Apparently, these kinds of behaviors need to be tackled with Habit Reversal therapy. Here is a link I found that explains it. http://www.acne.org/habit-reversal.html. ERP works well too. I haven't kept track enough to know if they are linked to illnesses or get worse when my son's symptoms get worse as well. I'm definitely going to start taking note. Anyway, I wonder if any of the rest of you notice PANDAS like behaviors in yourself?

If I have my son put his arms straight out and close his eyes, his fingers only move a little, but if I have his put them straight up in the air, the fingers movements and his hands waving in the air is much more noticeable. Also, they really have to splay the fingers out. I didn't realize that was part of the test the first time I had him do it. I haven't had him do it for awhile, I think I'll check again today. Also, according to Swedo's lecture at the autism conf. a few years back. This is normal until the age of 6 or so. My younger son that I've been worrying may also have PANDAS is barely 7 and he definitely does this. My older son, at his worst couldn't sit still on a chair. He would wiggle and writhe around, flip upside, put his feet all over the place, etc. I don't know how he was in school, but I would watch him at the therapist office, and be amazed that he really couldn't seem to help it. Once we got his Zoloft tapered to 50 mg, it stopped. I think it was definitely choreoform movements and one of the studies I read here or over at PANDAS CENTRAL confirmed that SSRIs activate CamKinase II.

So, you clear her, and then she resumes carriage at a later time? She'll stay clear if there is no more exposure (like over the summer, or in the spring if there are no strep notices). Last school year she had a couple of positives...she was definitely clear in the fall/summer at the start of school, then we got a strep notice in Oct...positive, then she was clear after tx 2-3 weeks later, then another strep notice in Dec, positive again, then we cleared her and she stayed negative the rest of the year (even after I got strep in April!). I know my nieces were having trouble with strep and they finally realized it was my nephew that was carrying it. From what I remember they just gave him abx and the whole issue seemed to clear up. My youngest son is definitely asymptomatic but I don't know about a carrier. He has had several throat swabs and cultures in the last 2 months that have come back negative but sometimes he has that streppy smell. He's the one with major gut issues so I'm beginning to wonder if he isn't carrying it someplace else. How can they tell if you are a carrier? Will most just have a positive throat culture? I've been wondering about myself as well, though I've had a negative culture in the last month too. It's tempting to take everyone of us, including the dog to have every orafice swabbed and cultured. Sorry to be so graphic but I'm only half joking!!!

Angela, I've read that Celexa and Lexapro are the two with the worst withdrawals because their half life are so short. Most people have to taper very very slowly. My son's tics do get a little worse with each withdrawal but then improve again, which is how I know it is due to the withdrawal as opposed to him actually needing the Zoloft. And the fact that when I return him to the former dose they and his mood and physical symptoms get better within a few hours. Since your daughter is really suffering, I'd keep her on the Celexa until she's in a better place. Dealing with PANDAS and withdrawal is just too darn much for anyone. Like I said, I had planned to wait until summer to go off completely, but I just forgot to cut up the Zoloft and add them to his pill case. He woke up this morning happy as can be. He was tap dancing through the entry way this morning while waiting for his brother instead of growling about being late and then decided that he would take his camera outside to take some pictures of the birds. I completely credit the overall change to Biaxin. At any dose of Zoloft he hasn't been this happy in a long time. Spring always helps too. I think we are going to stick with the 12.5 mg of Zoloft until later this Spring or until school is out. I've read that often a very low dose is more effective than a higher dose. That may be the case for my son. As long as he isn't gaining weight and acting like he has worms in his pants I'm fine with him taking it. I just want to know that it is doing something positive for him. I'm quite relieved to know that it IS the Zoloft and that the Biaxin is still working its wonders. He seems to be coming down with another URI. We'll see if the Biaxin keeps it from turning into an ear infection and/or sinus infection with the accompanying downward spiral. Then again, it could be allergies. I really need to get him into an allergist. I need more money to pay for all these tests and doctors visits!!!!

I have the kit for the Cunningham test, we just haven't had the funds to do it yet. I guess testing them both would make sense, then I would know if I'm really seeing things with him or if I'm so paranoid I'm imagining them. I will email them again tomorrow to see if I could get a reduction in price if I do them both at the same time. Certainly doesn't hurt to ask!

Very intriguing. I will definitely keep this in mind!

Thanks guys! I have had the same thought, that the Biaxin is what I thought Zoloft was going to be. So far his stomach is OK, and we are giving lots of probiotics. Hope it stays that way. After 2 full strength courses with improvement, I'm wondering if we should start a prophylactic dose, especially since we are headed into spring and summer, which are always better for him. When I picked him up from karate this evening, the 12.5 mg seems to have kicked in and he was in a much better place than he has been the last few days, so I'm sure it is withdrawal we are dealing with. He even told me he's been thinking that he really wants to improve his diet so his body is healthier and can heal faster. Up to this point he has been going along very grudgingly and eating the junk whenever he could get away with it. He asked me put restrictions on his tab at the snack bar at his karate school and wants to start packing a lunch. That really surprised me. I think we are just going to have to take this last little bit really slowly. Right now we have 100 mg pills I've been quartering. Cutting them down to 1/8 is getting hard so I may have to have his doctor call in a prescription for 25 mg pills that we can halve to make it simpler. Especially because we may end up having to taper even further depending on how things go. He also had the zapping in his head when we did the first taper. Because my sister had gone off it a few years earlier, I knew what it was, but it was still scary. It only happened one day though. I wish someone had explained to me just how hard it is really to get off. I only vaguely remembered my sister saying she went through withdrawal. She didn't really elaborate until I told her I was going to taper him off. Then she told me it was the two worst weeks of her entire life and she truly thought she'd have to take it forever because she couldn't imagine going on feeling that horrible. That made me even more sure that we had to get him off. I wish she would have told me that when I mentioned we were going to start taking it! She thought it was just her experience though. Now I've read enough to realize how common it is. I've taken Wellbutrin two different times and tapered off so easily. I guess it works a little differently though. I really hope tomorrow is a better day!

My son is on day 16 of Biaxin. The first 10 days were nothing short of miraculous. We were off for 2 days waiting for a refill with noticeable backsliding. He started again last Tuesday. I realized on Wednesday I had forgotten to add the 25 mg of Zoloft he is still taking to his morning meds/supps. I figured he was doing so well we would just go with it and see if we can finally get off of it for good. The drug has done nothing to improve is OCD and has caused weight gain. We realized it was the cause of some of his symptoms (non-stop wiggling/writhing, manic behavior with worsening of some tics) so we have slowly been tapering him off with the only noticeable differences being positive. With each 25 mg I've tapered he has had a few days of minor withdrawal symptoms (headache, tired, a little more emotional) which I was prepared for. However, every time we try to cut out the last 25 mg he goes through major withdrawal. This is our 3rd try. I was going to wait until summer but figured since we'd already forgotten a few days, we should just go with it. Not sure that was the best idea. The past 4 days he has been VERY emotional and exhausted. He has no coping skills or patience. Finally, after a long hard weekend with my husband out of town and 6 more days until his return, I cut the 25mg in half and gave it to him this afternoon. He called me earlier this evening from karate in tears because he didn't like the way an older girl talked to him. He just isn't handling life at all. He's got a karate tournament this weekend and I'm really worried that he isn't going to be able to handle it. I am so frustrated! I want him off! He asked me on the 3rd day if he was off the Zoloft and was glad when I said yes. I hate the idea of him taking a mind altering drug that doesn't help him. I hate that he is addicted to something we thought would help and no one told me how hard it would be to get off of it. It's tempting to keep him on it indefinitely if the withdrawal is so difficult, but I know that doesn't really make any sense! I'm going to continue with the 12.5 mg because we obviously need to take this last taper more slowly but I don't want to go back up to the full 25 mg. It's been 4 hard days already, we may as well push through. When I handed him the little bit today, I could tell he was disappointed but a little relieved at the same time. Poor kid. And to top it off, I'm only assuming it is the Zoloft withdrawal. It could be the Biaxin just isn't working anymore. It could be the old sawtooth progress thing. He could be getting sick again. Maybe one of the rest of us is harboring something. I don't really know! I'm just assuming that it is this because it is similar to before and it is the only changed variable (that I know of and have control over). It's so hard to see your child behaving so normally and feeling so much happier for a time only to see it slip away. I have to believe it is better for him overall to get off a drug he doesn't need, I'm just kicking myself for inadvertently changing anything because things were going so well, though the 2 days off didn't help either. I'm really so tired of dealing with the years of emotional ups and downs tonight. I just want him better.

I haven't. I just assumed they were from soiled underwear or wetting his pants. I guess the next time I see one I will definitely have it checked.

Boy howdy do I know where you are coming from. My younger son, the one that up until recently I didn't think had any PANDAS symptoms has struggled with this since he was 2 as well. He's 7. Until I realized it was a medical condition I was losing my mind! I was so sick of cleaning underwear! It was really hard on our relationship until I read something and realized that he truly couldn't help it. I still hate it, but I can deal a little better with it now. I finally started giving him glycerin suppositories every other day if he hasn't gone on his own to keep things moving and to make sure he wasn't having accidents at school. Prior to finally trying the suppositories we were doing the Mirlilax/fiber routine doctors prescribe. It just didn't work for us. The suppositories are also nice because it gives us some control. If we are headed out for a long day, or he is going to a friend's we make sure he goes before so there aren't any accidents. Since he is getting bigger, I guess he'll have to start doing it on his own soon. It works for us, but I keep wondering if we are making it so the true problem isn't addressed. He's got to learn to go on his own at some point! Lately I've been wondering if he has PANDAS as well but is displaying it differently. He is VERY different from his brother. They are like night and day. He is totally asymptomatic when he gets strep. Prior to my older son's last exacerbation in February, my younger son was going on his own just about every other day. Then he stopped and started having accidents again as well as wetting the bed again. He had gone well over a month without having a nighttime accident. Now he's wetting the bed almost every night. It is so frustrating because he can go for a decent length of time with no accidents, and then we are right back to square one again overnight. He's also always had rashes on his bottom that I always thought came from the accidents. He also goes through phases where he doesn't want to play away from home and is really sensitive and cries a lot. Normally he's really easy going and tough, though he has always been a homebody. What has really made me start to wonder is that he is counting all the time. He also has favorite numbers and will do things that amount of times. And just recently he's been refusing to share water bottles or eat other people's food because of the germ issue. I've been telling myself the number thing is because he's in first grade and really beginning to understand math and the germ thing is because his teacher is constantly telling them how dirty and germy things are. But now I wonder. He had a throat swab not too long ago that was normal though. My doctor already thinks I may be too stuck on the PANDAS thing for my older boy, I don't see how I would ever get him on board with the younger. Maybe I will start with an allergist. I know he has seasonal allergies, but I've always wondered if milk didn't play into the encopresis somehow. He had reflux really bad as a baby as well and has always struggled with constipation. He loves milk. Both boys do and every time I talk about seeing if we feel better without it they are totally against it. If I had a doctor that could tell us they were having issues with milk, it would certainly help. I don't know anything about clostridium difficile. Is it common? How do they get it? What are some other symptoms?

Our experience has pretty much mirrored yours. We're on day 16 of Biaxin and the mood changes have been dramatic, starting in the 2nd. DS says he feels like he has less OCD and tics as well, but I'm still noticing there are a few very persistent behaviors going on. Mainly he has to touch things an even amount of times on both sides and will continue until it feels just right. I guess considering that some kids can do this for hours, and he only does it for less than a minute, I shouldn't complain but it is definitely still there. His main tic seems to also have an ocd component. He says he feels like he can see lines and needs to get them all evened up by shaking his head. He also has a tic where he looks far to one side, then he shrugs and looks over his shoulder. Usually it is only once, but at night when he is tired he can also do it several times. I keep telling myself, if we maintained this level of improvement, especially in his mood, I'm OK with that. But honestly I'd really like to see it all disappear. I keep reminding myself to be patient and that it will take some time to heal.

we ran out of biaxin and by day 2 he told me he could feel things sliding back down again. I definitely noticed an increase in irritability, ocd and tics. We've been back on for a day and a half and I've noticed an immediate improvement again. I don't think it is a coincidence at all!

Neither one of my kids has "normal" strep. I can usually tell by a sound they get or a smell. My PANDAS son would say, "my throat feels weird". He said it didn't hurt, just felt weird. My younger son always says he feels fine. Last time we were at the grocery store and I noticed the different sound of his voice. He insisted he was fine. I remembered that the store had just opened an Express Clinic so we went in for a swab and it was positive. The N.P. was totally doubting me because his throat was only mildly inflamed and he said he felt fine. Now that my PANDAS son has had his tonsils out, he doesn't get that weird sound anymore. This last exacerbation he had an ear infection, a sore throat (on augmentin, rapid was neg.) and a sinus infection. I could smell strep. 2 days on Biaxin and the smell was gone. I just don't think titers tell the story for so many of these kids. Especially when you realize you've probably been dealing with PANDAS for at least 5 years, possibly more like 8.

Did you find out from an allergy test? Or are you doing the elimination diet? Is going dairy free helping your daughter? I'd love to hear more about how you and your daughter are handling it. I've thought for a long time that both my boys and myself are likely having trouble with dairy. My PANDAS son has the typical history or a million and one upper respiratory infections since 6 weeks old (he's 10). My younger son has always had GI issues. When he was a newborn he was failure to thrive while I breastfed and had the most horrendous gas! When we switched to formula he had GERD for the first year. I tried switching to soy but it didn't help either. He has always been severely constipated and we have struggled with encopresis as a result. Even now (he's 7) I generally have to administer a glycerin suppository every other day to help him have a bowel movement. I suspect he has IBS, which my sister has and I'm pretty sure I do too. He has the standard seasonal allergies as well. Both LOVE milk based foods. Ice cream makes me ill almost immediately, though I don't see an immediate problem with milk or yogurt. It seems to be anything that is both dairy and high fat will do a number on me. I have been struggling with adult acne for about a year now and wonder if milk isn't the culprit, though it seems to be hormonally related as well. I'm guessing dairy messes with my hormones. I don't mind milk alternatives, and since we've gone exclusively to organic dairy products, the price really isn't much different. My boys however are extremely resistant to trying dairy free for awhile. Both claim to hate any of the milk alternatives I've bought. II would just go dairy free myself, expect I hate buying both diary and dairy alternative items. When I have some more money I plan to have us all allergy tested. If I had a doctor's authority to back me up, I think they would be more responsive. I've also wondered about gluten. I know I feel better on a low grain diet and suspect my husband and PANDAS son would too. Both tend to be rather hypoglycemic, which is definitely a trigger for PANDAS problems for my son. My husband also gets really grouchy if he hasn't eaten in awhile and I become a carb addict if I eat too many.

It's great that she is willing to do the ocd "homework". my son will for a time, but if it involves writing he hates it. But ever bit that we do helps. I think the exercises in the workbooks are good for anybody! I'm an avid journal keeper and it really does help get it all out, plus it makes and solidifies connections for me. I've noticed with my son that he tends to improve in the spring. we've had 3 different therapists, and by the time school gets out all 3 of them have felt we've made such significant progress that we can take the summer off. Then school starts and it all goes to ###### again and I am calling the therapist frantic for an appointment. I used to think it was waxing and waning until I noticed the specific pattern. Now, at least for my son, I think of it as high exposure times and low exposure times. For awhile I equated it with sunlight. Now I think the biggest contributor is kids not being sick. His worst times seem to correlate with when strep infections peak. I'm sure the sun, getting outside and moving around and all of that is a bonus as well. He's doing really well right now on the Biaxin, which made such a dramatic, rapid improvement, but part of me thinks that I have to realize that part of the improvement is due to it being Spring. I will know for sure if he is still taking it when school starts again in the Fall and he maintains the improvements. I'm so glad she's doing well right now. I know how happy I've been recently watching my own son's progress. Life is just easier. I've missed having the fun times with him. He's such a great, sweet, helpful, funny kid when PANDAS is trampling his "real" self.

My son came down with an ear and sinus infection (and I think strep, but the rapid was negative because he was on abx) while on augmentin. It just doesn't seem to do the job for us.

My son, who just turned 10 went did the same thing with Pokemon. He grew out of it and gave all his cards away. Then during this last exacerbation he was totally into it again. i was worried he'd get teased at school, plus Pokemon has always been something I just couldn't get into at all. He'd go on and on about this one and that one and I'd be thinking-I DON'T CARE!!!! Since we started the Biaxin it is gone again and I have to say I am really glad!!!

I was going to say the same thing. usually red ears are indicative of an allergy. a rapid would come back negative anyway because of the abx. how long has he been on the keflix? my son had a rash like that several times like that when he was on amoxicillan.

We had titers done and they were all normal too. Not surprising since he hadn't had a strep infection or obvious exposure for at least 6 months. Unfortunately our doctor is one that doesn't understand PANDAS very well yet and figures if it is PANDAS, he should have a titer response. If there isn't an active strep infection, no need for antibiotics. Lyme and mycoplasma were normal as well. If you haven't done so, I would highly recommend doing a phone consult with one of the big PANDAS docs. It was such a relief to talk with someone who knew at least as much as I did and more about PANDAS and knew that after more than 5 years with this dang disorder, titers didn't mean much anymore. I've seen such a huge response on Biaxin there is no doubt in my mind that it is PANDAS any longer, and having a knowledgeable doctor agree with me is totally worth any cost associated. And if he gets worse, I know where to start.

Zoloft was activating my son some and I didn't realize it. I don't think it did anything at all for his OCD. He also gained 15 pounds in less than a year, which is a lot for a 9 year old. Since he's been down to the 25 mg, the he has lost a few pounds and grown a little so he is only about 5 lbs overweight now for his height. Just take it slow and expect a few bumps in the road. Glad to hear the Biaxin has helped so much!