simplygina

I spent about a year trying to figure out if a few of my son's behaviors were OCD or tics. It wasn't until this past Fall, when he reacted to his brother's strep with a bunch of very obvious tics (throat clearing, groaning, repeating others, neck jerks & shoulder shrugs) that I realized they were, in fact, tics. However, like others have mentioned, they are all mixed up with his OCD. for instance, he will have a tic, but since his main OCD compulsions are having every thing even & doing things until they feel "just right", he will continue to do the tic voluntarily until his OCD is satisfied. on the flip side, sometimes things start as an OCD issue but end up being a tic that he can longer control. It is hard to tell with him sometimes because his OCD usually isn't based on an obsession to begin with (he doesn't worry that someone will die or get sick for instance if he doesn't do a certain thing). It is more tic like in the sense that he just feels like he has to do it or it is extremely uncomfortable (he gets a "weird" feeling in his tummy). For a while he had to walk with even steps & do a twirl every so often. The stepping this was definitely OCD, but I still don't know if the twirl was a tic or OCD. Either way, OCD & tics are really very similar in the sense that it is an overwhelming urge to do something that there really is no reason to do. one is more a thought & the other physical urge, but both are a kind of broken switch causing an urge to do something over & over again. once the compulsion or tic is complete, the tension is released (momentarily...sometimes like 1-2 seconds, sometimes much longer) until the broken switch tells the individual it needs to do it again. I've heard it called Tourettic OCD & it definitely fits my son's behaviors.

I'm considering trying to go gluten free this summer. I have known for years that I feel better without grains but I'm wondering if it could be gluten specifically i'm sensitive to. The more I read about food allergies & sensitivities, the more curious I get. My skin is the worst it has been ever. Worse than it was as a teen & I'm over it! My PANDAS son is doing well right now, but I'd still like to wean him off the Biaxin or at least reduce the dose. And I want to find the root of what is inflamming his system & throwing off his immune system. My younger son's encopresis is flaring up again & I am so sick of dealing with it! His belly is so distended regardless of how often he has a BM. I found a new Naturopathic docter I'm going to try for all of us. I need someone who doesn't think I'm nuts & who is willing to look for root causes, not just treat symptoms. We are also going to do the blood draw (finally!) for both boys on Monday to run the cunningham test. I'm so curious about the results. Since we have gone mostly dairy free, my husbands digestive complaints have almost disappeared. Every time he does have some dairy he gets sick. He isn't sure he wants to admit that it is dairy, but I see a pretty consistent connection for him. I'm not sure if it has helped me or my boys, but I figure it probably isn't hurting either. We are definitely a family of "apple" shapes that are on the hypoglycemic side, so reducing grains would probably be good for all of us. I'm going to focus on gluten specifically for the summer & see if it makes a difference for any of us. Anyone had experiences to share?

So I mentioned it once before, but I swear my son does better on one generic of Biaxin than others. Each time we go to the same pharmacy, we cross our fingers that it will be from one particular manufacturer because 1) it doesn't have a taste or smell, and 2) I think it works better. But the dang pharmacy refuses to order from one particular manufacturer for me. Frustrating! Has anyone else noticed this? It must have to do with binding ingredients or something. Is there a way to see all the ingredients in a Rx?

We're in the same boat exactly. DS started taking Biaxin 500 mg twice a day at the end of February. So we've been on it more like 90 days. We've seen a huge difference, HUGE. Not 99.99%, but like 90%. But I would say his overall mood & coping ability has been 99%. Soooo much easier to live with! We have tried twice now to bring the dose down & within 4 days things were really bad again. We tried the every other day with ibuprofen as well. Didn't work. First the mood went. Inflexible, snappy, & just not happy. Then the OCD got worse. He's back to touching things even ALL THE TIME again. And the tics getting worse as well. This week we tried just skipping one dose of 4 (am, pm, am, skip) & things are a little better, but not as great as before. So I'm going back to the regular dose today. So far DS has had zero gut problems beyond feeling a little tummy ache the first day he took it. I give him a probiotic with 40 billions cells every day. In Saving Sammy, every time they tried to bring the dose of Augmentin XR down, Sammy would get worse. They ended up keeping him on the high dose for 3 years before they were able to slowly bring it down. Not that the doctor wanted to or planned to keep him on the high dose that long. She did try to bring him down several times, but realized that for some reason he needed to stay on the high dose. Beth gave him culturelle to keep his gut healthy. I realize that Augmentin & Biaxin are in different drug families, but wouldn't the risks be about the same? The worry being that you are damaging the gut? If the child is soooo much better on the high dose, and declines RAPIDLY when the dose is brought down, I think it indicates that they still need to be on it. I'm thinking that is what needs to happen for my son. I don't want to cause problems for him down the line, but I don't want to go backwards either. My sister took a high dose of e-myacin thru her teen years for acne & has major gut problems now, though the doctors have never said it was the abx that caused the gut problems. But that was before probiotics. IVIG really isn't an option for us cost wise, so right now all my hopes are really that we can replicate Sammy's success with high-dose abx. I'd love to hear others thoughts on this because I feel a little stuck right now. He NEEDS this abx, but I'm scared to cause problems down the line. But I don't want fear to dictate my decision. I want to base it on facts & what works for my child.

So far the doctors seem to think the length of time the child has had PANDAS doesn't make it any harder to treat. My son's first known exacerbation was when he was 6. But looking back, I don't think that was the initial one. So I'm thinking my son has probably also had it around 6 years. We've seen big gains on the antibiotics. Like he is almost "normal". As parents we all go through different stage of grieving, often more than once. Realize that there is hope & while it is normal to feel sad or angry, there is more and more information & research going on all the time. I'm very optimistic that in the next few years we will have some answers & more treatments to help our kids. I also think that with the research showing more and more than "mental" disorders are physiological in nature, insurance will begin to cover more treatments, making things like IVIG within reach for families that need it.

Our local news ran a story last night about a a University of Utah researcher that has found a link between the immune system & mental illness. More specifically, he found that compulsive behavior, such as hair pulling, can be linked to a cell called a microglia. " They found people and animals afflicted with behavior disorders have deformed microglia cells. So, instead of treating mental illness the way doctors traditionally have -- with medication to alter brain chemistry -- they tried a new approach by treating the immune system. The researchers used a procedure on the mouse that's commonly practiced on cancer patients -- a bone marrow transplant. 'That cured the disease permanently,' Capecchi says. 'All the hair grew back, all the lesions were healed, and the mouse no longer removes the body hair'. Here is the link, if anyone is interested. http://www.ksl.com/index.php?nid=148&sid=10947928 I don't love the idea of a bone marrow transplant, but I do love that researchers are finally proving that mental illnesses are really physical illnesses at their root. I wonder what implications this has for PANDAS.

all the things you mentioned are definitely issues for my son as well. it is amazing the difference between when he is doing well & when he isn't. the writing has been particularly troublesome for him so he avoids it if at all possible. this is my kid that used to spend hours at 4 years old making invitations & greeting cards for everyone he knew, including all the neighbors. he also struggles with retracing letters & numbers. i can't figure out what makes him want to do it because they all look equally bad to me he did tell me he finally made it through his timed multiplication test because he just told his ocd he wasn't going to be doing any erasing or retracing. he said the first few lines were a struggle but by the end he was fine. he had over an extra minute at the end of the 5 minute test. it does make me wonder if he is in the lowest math class because the ocd trips him up & makes everything so hard that he just comes across as not so good at math. he does really well on the standardized tests, which are all done on computer now so he doesn't have to write anything or feel like the little circle has to be filled in perfectly. i've avoided putting an IEP together for him because he is doing pretty well anyway, even his worst isn't all that bad. but maybe i should if it meant he could take all the tests on the computer & skip writing all together. it certainly would be interesting to see how & what it would change about what he's doing in school. maybe i'll teach him to type this summer so i have the option for next fall.

maybe for some, but i don't think that is my son's issue. i think the most PANDAS related reason, at least for DS, is that it just doesn't seem to stick in there which seems to trigger an anxiety response for him. when he just isn't "getting it", and he's going thru a rough period & has fewer coping skills, he just falls apart & quits trying. during times he's doing better, he tries a lot harder. he's a word person anyway, and learns very contextually, so if it is just rote memorization, he struggles. he's a lot like me, if he is practicing a particular concept everyday, he can do it, but it just doesn't stick for some reason. i've always had to make up little stories & tricks to remember math concepts.

my son has "just right" ocd & likes things to be even as well. there isn't an obsession fueling the need. his body just feels weird if things aren't "just right". and like most ocd issues, they logically know it doesn't make sense & that it really isn't life or death. they just can't stand the way their body feels & the thought bombarding them over & over, so they do it. don't go out of your way to make things even for him because you are worried he'll freak out, but don't insist on things being odd either. you do your thing the way you always have. then if it starts to become an issue, voice it by saying something like, "it seems like you are struggling with 3 minutes, though you agreed to it. is it because it is an odd number?". by putting it out there for him it makes it easier for him to realize if it is the issue, and easier to talk about. then ask him if he really needs it to be 2 minutes, or if he can manage 3. If he can't, change it. If he thinks he can, help him through it & praise him after. we have worked on it several times in therapy. basically, the time to work on it isn't while he's freaking out. when it gets bad, and he agrees to work on it, we "practice odds". for instance, he like to touch things an even amount of times with both hands (feet, elbows, etc.). so we touch it once and then sit with the discomfort. we talk about ways he can distract himself. we do something else, but all the while i am watching him to see if he does go back and even it up. once he sits through the discomfort (a funny feeling in his tummy), the next day isn't as hard. it usually only takes about 5 times before he has gotten over the issue, for the time being. if it is an even amount of "things", say eating an odd number of grapes, i give him 7 grapes & put the rest away. then work through the discomfort. i have also spent a lot of time with him working on his positive self talk. teaching him to remember to tell himself that he can do it. he is strong. he is in charge. he makes the choices, not ocd. i've also helped him to remember to take deep breaths anytime he feels stressed. we are still working on it, but he does use these things to help him. our issue has always been getting him to decide he actually wants to work on it. he will say he does, but will either give me a hard time about taking the time to do it, or he will go back & even it up. if he doesn't make it through about 3 days in a row, i tell him to let me know when he's ready to try again. i don't know what makes it click for him, but if he isn't ready, it doesn't matter how many times we try. if he is, it goes quickly. now that he's older, sometimes he just decides and does it on his own. it seems like we have two times he can work on it. one is if we catch it really early on and he isn't very entrenched in the habit yet. the other is when it gets really bad & he is just plain sick of it. unfortunately it manifests itself it soooo many ways. and we have to work through them as they come up. and many come back even though we've gotten rid of it for a time. one really tough one was the even numbered steps. then he started adding a twirl after a certain number of steps. i guess he realized that a) it was taking forever just to get anywhere, and he was embarrassed by needing to do it at school. since my son's ocd didn't become obvious until he was 8, i can't really give you any tips on working with someone younger than that. i would imagine it would be the same concept, but tailored to the thought process of a 5 year old. the book "talking back to ocd" has been helpful for this, as well as working with a therapist skilled in using ERP techniques.

We don't have wireless controllers and my son is definitely worse off after playing. It is somewhat better when he plays on our flat screen versus the old TV, but regardless it affects him. TV, computer, DS & movies all affect him negatively.

I don't know about the allergy test, but I do know that my son does not tolerate Omnicef well emotionally at all. My son ramps up in the Fall. He doesn't really show signs of allergies but I think it has something to do with them because it is the same time of year every year. Also, my son's major form of OCD is the evening up thing. What your son does is pretty much what mine does, if he bumps one arm against the doorway he goes back to bump the other one. If he taps me with one hand he has to tap me with the other. My son has also gone through periods of aggression & insisted it was an accident. I finally realized he meant he couldn't help it. He did the clawing scratching thing a lot in Kindergarten. I'm so glad he has grown out of that one but his little brother has a nice big scar across his forehead for us to remember it by. I don't know how old your son is, but my son did mellow out a bit on the aggression at around eight. Taking karate has also really helped him with discipline and it gives him somewhere "legal" to work through his aggression as well. The one thing that has really changed my son's overall disposition has been Biaxin. His ability to be patient, cope with frustration and be more flexible overall has improved tremendously. Like a miracle drug. Unfortunately he can't continue to take it full dose any longer because we're worried that it could cause damage to his gut. We're weaning him off and I'm starting to notice he isn't handling things as well. Not sure what we will do long-term because now that I know how happy he can be, I don't want to go back! Don't you just love the guessing game we all get to do?!

You can't feel guilty about knowing this! How on earth would you? Isn't that why we go to doctors? You were a good mommy for finding him the right doctor who is now helping him. Surgery is always scary, but it will be fine. And then the infection will be gone as well as the headaches! I think my son's issues also revolve around the sinuses. the interesting this is that he really doesn't present with sinus problems, i.e. constant congestion or runny nose. however, i have noticed that when he does get a virus, or allergies, or major exposure to something that irritates his respiratory tract, he comes down with strep. most kids who have strep don't have accompanying congestion in the sinuses. when i was a child i also had strep a lot and the first thing my mom would ask was if my nose was stuffy or runny. if it wasn't, she'd take me in for strep. if it was she figured it was drainage down the back of my throat. i've also found a few of the he webmd type websites that state congestion doesn't normally accompany strep. well for my son, it does. ds had strep so often, and his tonsils were always, always so large that after i kept inquiring about them our pediatrician decided we should meet with an ENT. the day before the ENT appt. ds told me his throat felt weird (he always said "weird" with strep, never that it hurt), otherwise he seemed fine. i sent him to school but a little voice was nagging me that it was strep AGAIN. he called mid-morning because he'd forgotten his library books and i asked if his throat felt better. he said he felt fine but it still felt weird. i decided to run him to the express clinic. and it turned out to be strep (which the N.P. was sure it wasn't because ds felt fine) plus double ear infections. the next day at our ENT appt. he confirmed the strep throat, ear infections & told us ds had a bugger of a sinus infection as well. taking the tonsils out helped tremendously for about a year. this february we the same thing happened. he told me his throat felt weird. the next day his ears hurts, and then the sinus infection set in. we went to the dr. who ran a culture that came back negative, but ds was already on full strength augmentin, so i think that, plus the lack of tonsils, is why he didn't have strep throat. but i'm positive he had strep causing the ear infections & sinus infection. we switched to omnicef, which cleared the ears but made ds an emotional and mental nightmare, then Dr. T. prescribed Biaxin & his sinuses cleared up FINALLY. my theory is that he had intracellular strep lurking in the sinuses. whenever an opportunity arose it would go to town in the sinuses, ears & throat. i'm really curious about this muecocele though. ds has complained the last year or so about a pain in one eye about once a week. that same eye also bounces around a bit when we do the neurological reflex test stuff at the doctors. he just got glasses with a really minor prescription, but i figured it was enough that maybe it was causing his eye to become fatigued. but the glasses haven't helped. this really is something i should check into. I love this forum! I love that we can all share what we are learning and help each others kids! I wonder if i should make an appt. with the ENT or a neurologist? i'm over his pediatrician lately. he hasn't come out and said i'm nuts, but he sure isn't jumping on board with me to figure this all out either.

Biaxin has been our wonder drug, but it didn't get rid of the tics completely. Mainly we have seen a huge change in mood and reduction of OCD. The tics are fewer than before, but he definitely still has days that they are very much present. Makes me think there is more than one thing causing the symptoms, possibly allergies.

In a word, Nope. DH has struggled all along accepting that something just wasn't right. Even now, he just pretty much lets me deal with it. I've come to accept it for the most part. For some reason he just can't deal with it and there is no way I'm going to be able to make that happen if he just isn't in the right mental place. At least he is not longer in complete denial like he was for the entire first year we were dealing with the OCD.

Like the others, DS only shows symptoms for a few days. The last time his brother had strep things were pretty bad for maybe 5 days. I think it was longer than 2-3 because strep was going around so he was exposed to more than just his brother over the week. He may have had it himself, since he is pretty asymptomatic, but I don't think so considering how quickly he improved compared to the last time he was actually ill himself.

thanks guys! sometimes you just gotta vent!

I realize some of you have had far worse issues when dealing with your children's schools, but my son's math teacher is driving me bonkers! I have explained to her since the beginning of school about the ongoing process of dealing with my son's OCD/TS/PANDAS. She doesn't seem to hear a word I say! First of all, he should not be in her remedial math class. He has always placed in the top percentage of the class in math. During the week they did placement testing my other son had strep and DS definitely reacted. His testing scores were abysmal. When I told the principal I wanted him retested, I was totally placated and given the brush off. By Christmas his teacher was acting as if she'd seen a miracle because he was at the top of the class. Wow! Really! ([Please read with dripping sarcasm). We talked about his OCD and TS. We also talked about certain triggers. All she wanted to know was if he was medicated or not. By January we were beginning to realize we were dealing with PANDAS. By February he had another exacerbation and we started doing testing and abx. Of course his math abilities suffered which made her even more convinced he belonged in her class. I explained all about PANDAS to both his homeroom teacher and his math teacher. I could tell I was talking to a wall. I also asked if anyone had known strep at the time and if they would let me know in the future as well. His homeroom teacher has been more than willing to share with me but his math teacher told me she is too busy to keep track of who has what illness and which parent needs to be notified. At the last parent teacher conference in early April she was again amazed by his improvement. She was positively giddy showing me how he is testing at the top of the grade in math. I explained how well the abx seem to be working. Again it was like talking to a wall. She just doesn't hear anything! I'm sure she is just thinking about how this reflects on her teaching ability. We also talked about how he seems to be hypoglycemic and since math is right before lunch, he might do better with a snack at the beginning of class. She was all on board until I looked over the approved list of snacks, which were all simple carbs. When I asked if he could have something else, something with more protein, she told me absolutely not, he needed to follow the approved snack list like everyone else. No exceptions. Anyway, what has me so pissed off right now is: today DS earned a treat in class for doing well. She gave out pixie sticks. And she gave him a red one. He looked at it and said he couldn't have a red one. She got all offended and told him if he was going to be picky he could just give it back. He tried to explain that red dye #40 is a tic trigger for him but he said she wouldn't let him speak at all and was all miffed at him the rest of the class period. So he ate it and has had to deal with the increase in tics all day. This is something I have talked with her about several times already! Here is my son trying to be smart about his own health but faced with an authority figure that should know better pressuring him to do what isn't best for him. It just really burns me up! And the kicker is that she had a child with tons of health problems that eventually died around the age of 19. You would think she would understand that some kids have special issues. But she is the most inflexible person I have ever dealt with. I just keep reminding myself we only have 3 1/2 weeks to go until summer and I will never have to deal with her again. I still can't decide if I'm going to send her an email though.

My son's last exacerbation in February happened while he was on 875 mg Augmentin twice daily. First he said his throat hurt. The next day he said his ears hurt too. We went in to see the dr. and also go the "no way it could be strep" talk. he did culture and the culture did come back negative. However, he had a very nasty ear infection as well as really nasty sinuses so we switched abx to tackle those. Omnicef did clear the ear infection but not the sinuses. After we started Biaxin his sinuses finally cleared. I don't know for sure if the ear and sinuses were a strep infection, but I'm thinking they probably were based on how quickly my son went down hill. The dr. was surprised that he still got such a nasty ear infection on the Augmentin, but when I got copies of his medical records and looked back, my son has a history of Augmentin not clearing ear infections or strep infections and having to try something else. At the age of one he had so many ear infections back to back we ended up doing rocephin shots for a few days to get him clear enough to do the ear tubes.

There have been so many times DS has indicated he hates the pills or doesn't feel like taking them. I always say, "You don't have to if you don't want to. It's up to you" and he so far has always replied that he knows they help and it is worth it. It is the same with the blood draws. He was so upset about the idea of having to do another one for the CamKinase II test but told me he wants to know the results, so he'll do it. So I do think it is a control thing. At the same time, he seems a little worried about what kind of parent that makes me if I can't be trusted to MAKE him do what is best for him. I just tell him he is getting old enough (he's 10) to make some decisions for himself, especially ones that are about how he feels, and that my job as a parent is to teach him how to grow up and make good choices, which seems to satisfy him most of the time. Would I really let him quit taking the abx if he didn't want to? I don't know because it has helped so tremendously. Luckily I haven't had to find out yet! The rest of the supplements I would probably let him take a break to see what happened.

That's what I was afraid of. I hate having to decide medical decisions based on money!

DS is far more sensitive to others emotions and non-verbal signals when he is doing well and far less when he isn't. Right now he's doing well and I would say seems really normal about it. There have been times in the past when it seems like almost nothing is registering. I think it is absolutely related.

DS complained a bunch at one point. I realized, after questioning him, that the taste and smell of the refill we got was different because we'd switched pharmacies and they used a different manufacturer. When we went back to the original for the next refill he was fine. could that be an issue? Different abx entirely so perhaps that's the problem as well. If the new abx isn't working as well, I'd definitely see if switching back to Augmentin helps. We started with Augmentin with some improvement but ended up needing to switch because he still got an infection. His dr. wanted to go with Omnicef as his second line treatment. That particular abx made EVERYTHING worse. I had never seen DS so full of rage and hopelessness and it really scared me. 24 hours on Biaxin produced a totally different child and made such a huge positive difference I wouldn't have believed it if I hadn't seen it. It wasn't that the Omnicef wasn't working, it was actually increasing the problems. It is so individual for each child. I wouldn't wait to finish the course after watching how much worse the wrong abx made things for us.

DS definitely has several different tics that he seems to cycle through. He often has two going at the same time, though they are still relatively mild and most people don't notice them. With his last exacerbation I knew things were headed south quickly when he started doing pretty much every tic we've seen all at the same time. He's got a neck tic going right now that is bugging him, though is better than it was last week while his brother was sick.

DS complained a bunch at one point. I realized, after questioning him, that the taste and smell of the refill we got was different because we'd switched pharmacies and they used a different manufacturer. When we went back to the original for the next refill he was fine. could that be an issue?