simplygina

My son doesn't seem to have a raise in titers. He's had strep a bajillion times though. I think for some kids either they don't mount an immune response correctly, or it is erratic and difficult to time a titer test to capture the full picture.

i would guess he's coming down with something. allergies may be a contributing factor to opening the door for something to start brewing though. but it could be some other exposure or a virus. the last exacerbation my son had in february came after exposure to gasoline fumes and a dusty moldy cabin. i couldn't believe that he was going downhill so rapidly. 2 days later he had a sinus infection and ear infection even though he was on full strength Augmentin. i think the inflammation caused by the exposures let whatever pathogen it was (i suspect strep but his rapid was neg.) really get growing and had is immune system freaking out and not working very well. like Chemar mentioned, it seemed to be a number of things that all together were just too much. in 24 hours everything cleared up with Biaxin (after 10 days of worsening on Omnicef) and he was better than before. sorry you are going through this. i hate the guessing game and the waiting. pure torture.

My son's handwriting is never great, but during bad times it is AWFUL. One time in 2nd grade I was passing the copy room and heard his 1st grade teacher ask his 2nd grade teacher if his handwriting was still awful. She laughed and said she'd never seen worse. It wasn't said in a mean way so I didn't take offense. It really was HORRIBLE his entire second grade year. It's something I usually mention at the first teacher meeting before school starts. At the beginning of this year (4th grade) they took placement tests to determine their class for language arts. DS has always been at the top and placed in the highest class. This year the testing coincided with his brother having a strep infection as well as a whole bunch of other kids (DS may have also had strep but I didn't know much about PANDAS then and didn't think to have him tested as well. Both kids are always asymptomatic and DS has had his tonsils removed so I assumed he didn't have it.) He was placed in the middle class because his writing sample looked like a pre-schoolers. Even I was shocked. The rest of his scores were still high but it was so bad I had him evaluated for a learning disability. Of course it took two months for the specialist to finally get to evaluating him and by then his handwriting was OK. She seemed to think I was nuts until she saw the testing papers. I tried to have him moved up to the higher class but it was already over-crowded. Now I'm glad because he has the higher L.A. teacher for math and they really don't get along very well. He loves the teacher he has and she has been really good for him in a lot of ways. Now that he is on abx he is actually getting an A in handwriting, which totally blows me away. His cursive is MUCH better than his print so that may be part of it. I can also tell when things are bad because bedsides the horrible handwriting, he also breaks multiple pencil leads and is totally resistant to writing. His math abilities also drop quickly. During the horrible testing week he tested into the remedial math as well even though he has always tested into to the highest class there too. Now he's doing really well and his teacher is amazed even though I told her from the beginning he didn't belong in low math. The abx have made a really big difference in his schoolwork and his willingness to do homework.

Is he trying to be funny? Silliness is a common PANDAS behavior. I watch kids at my gym's daycare twice a week and there is a 3 year old that also blurts out random words that he thinks are funny. It's totally him trying to funny because to him and several of the other younger kids, IT IS funny.

I could haven written your post myself. Even still there are things that I just can not tolerate. DS has to touch things and even amount of times with each hand until it feels "just right". Most the time I just watch and wait because it is never more than about 10 seconds. But sometimes it is ME that he is touching over and over and I HATE IT!!!! Sometimes I muster up the ability and patience to say, "I love to be touched by Myles, but not by OCD", which works and is kind. But sometimes I end up barking, "STOP TOUCHING ME LIKE THAT! YOU KNOW I HATE IT" which also works, but makes me feel like a total creep. After reading all the OCD books for kids, I know the right way to handle stuff like that is to casually mention that OCD sure is being a pest today. That usually gives him the ability to "Talk back to OCD" and work at regaining control. The past week I have really noticed him doing his own ERP and CBT on the touching. It is amazing how quickly it works once they really decide to tackle a compulsion. I try to be pretty honest with my son. If I lose it I will always go back and apologize and explain how worried I get and that sometimes it just comes out as angry but it isn't angry at him even though it seems that way. I tell him I can only imagine how hard it is for him and that he's doing a great job and I love him no matter what. I promise to try harder and not wait until I explode. I'm always amazed at how forgiving he is and how understanding. He's 10 now and actually gives me really good advice about how to manage my emotions and reminds me to take breaks to recharge my batteries. At least I know the therapy and talks and books have sunk into his brain! I am also increasingly worrying about my younger son. He's so different personality wise that it is hard to tell. And he's only 7 so figuring out what is age appropriate is hard too. He's very laid back and doesn't get crabby like his brother. He gets emotional and cries. He has started worrying about germs more, but that could be the result of his brother and his teacher always harping about germs. He is 7 and will go for months without wetting the bed, then wets it every night for a few months. He has also struggled with encopresis for 3+ years, but does have periods where I think it is going away, only to return. This week he had a rash on his bottom that looked like Scarlitina to me. He also had a strawberry tongue. He's had the rash in the past and I always just treated it with creams and didn't even think about it. This time I realized that it might me strep and goggled it. I took him to the InstaCare and they told me they NEVER see scarlet fever anymore and he looked so healthy. I explained he's always asymptomatic for strep. They wouldn't even swab for strep. Luckily they could see I was pretty serious and did give me a Rx for abx. It will be interesting to see if his hands or feet peel in the next week or so. I've been documenting it so I at least have a record of it. I've decided to keep a journal for each kid with their illnesses and other concerns I have about their health. Piecing together my older son's medical history has been really hard so I'm trying to make that easier going forward for both of them. I've decided that when I do the CamKinase II test for my older son, I'm just going to do the younger one at the same time. One of Dr. Cunningham's assistant's told me to just do 1 vial of blood for each kid and send them together. I need to quit procrastinating and just get that done! I guess my gut tells me there is something there and I just need to trust it.

We parents definitely go through the stages of mourning don't we! I spent the better part of my son's Kindergarten year crying. I didn't know what was wrong, I just knew something was. I felt like a failure. I mourned the loss of the child I thought I would have and the mother I thought I would be. In second grade I spent the year worried sick. I didn't know if the OCD would take over his life. I projected all sorts of disasters into his future and mine. I worried he'd be made fun of, never have a girlfriend, never get married, not be able to work, live with us forever, be depressed, do drugs to self-medicate, commit suicide, etc. This year the tics started. Then I was angry. Why us? Why him? How the h*** am I supposed to deal with this? I'm the one with horrible ADD that is just starting to figure out how to put a normal life together. Why would God give me a kid that needs someone to keep his life stable and organized and calm? What a joke! I still worry that he'll be picked on and have trouble dating. I worry that he is missing the chance to learn the age appropriate lessons most kids learn naturally because his brain is not working right. I worry that he'll be the guy with TS that yells F*&% all the time. Yeah, yeah, all the cliches about "what doesn't kill you makes you stronger" and "I've learned so many things that maybe it's all for the best" are true, but most of the time I don't want to hear that because all of this is HARD!!! And I wouldn't choose it! I'd definitely pass this little adventure up if given the choice. I worry and lose sleep over it. I cry for him but truthfully I also cry for myself. I rage at doctors, at myself, and sometime God for the unfairness of children suffering. I get mad at DH when he points the tics out to me because somedays I just want to live in denial and pretend that everything is perfect. But in between the days of worry and anger and sadness, I'm beginning to have to the days of acceptance, more and more often. I cycle between the 5 stages of grief every single month, sometimes all in one day!

We quit using the Bontech Supps a few months ago to see if we did better on individual supplements without the taurine. I decided to give them a try again this past week just to see if they did help and it is so much simpler too. I have to say I have noticed a real reduction in tics this week. The Biaxin has really helped the mood and a good portion of the OCD but it didn't seem to decrease his most common tics at all. So in our case, the taurine, which is usually a tic reducer for most, definitely does help.

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I haven't read all the replies but I just want to tell you that my son leads a really normal life. He goes to public school, is on a karate team, does summer camps, has lots of friends that are very accepting of his "quirks" and does well in school with teachers who really like him. Most people don't even know he has issues until I tell them. We just have periods that are harder. I think I'm the one that takes it the hardest of all. I don't believe isolating him is good for him mentally and things have never gotten so bad I've considered doing a specialized education plan for him. We just take it one day at a time. I don't know when or how he'll get "all better", but as long as he is happy I really think that is all that matters. He's 10 now and I can say that for us it started at least when he was 5 but probably earlier than that. Since we started taking abx a month or so ago things have more or less continued to get better so I'm hopeful but I try to not project too much into what will happen in the future because I just don't know. I do think that more is being learned everyday and the more kids that are recognized as having PANDAS the more we will have the experience to find out what works for these kids. Good luck. This board has been a life saver for me.

He sounds a lot like my DS was at 3. The growling progressed to scratching at one point. We did something we said we would NEVER do and started driving him around at nap time or at bedtime because we couldn't get him to settle down in his bed and we were both so worn out by the battles. Don't let whether or not he's intelligent color things. Smart kids seem to fall under the radar just because they are smart. I can't say it is PANDAS, but it could be. At 3 my son didn't have OCD or tics. He was just difficult and defiant and sensitive and just a little off. I'd do a phone consult with Dr. T. or Dr. K first to see what they think. A trial of abx to see if it helps is where most of us start. The Cunningham test will also give you info. If his Cam Kinase II levels are in the PANDAS range you'll know it is more than a "phase".

I believe my DS, who is now 10, had his "sudden onset" a few months before his 3rd birthday. He also began biting kids at the daycare. The other major "sudden" symptom was the extreme noise sensitivity. Since DH tends to be rather anxious, I figured he just inherited that from his dad. I knew things weren't right with him but I thought it was just an extreme case of terrible twos brought on by not loving his daycare and me being pregnant. I knew I'd be having the baby soon and quitting my job to stay home so I figured it would resolve itself. But he got kicked out first. My sister watched him for the last 2 months and he did do better. I think by and large because he wasn't exposed to so many germs. For the next year he was home with me and the baby and did much better, though he was not an easy child by any stretch of the imagination. Again, I just thought it was the strain of potty training and the new baby plus changing his routine. He did really well during his two years of pre-school. He didn't get sick very much and I would have to say that the year he was 4 was one of my favorite years so far. I think DS probably started having PANDAS issues at around 2 after tons of ear infections. We are that typical family that went the psychiatric route with little to no results. What ticks me off is that I started asking about PANDAS when DS was diagnosed with OCD at 8 and have asked both doctors and therapists with no one thinking it was a possibility because they didn't know anything about it and didn't take the time to find out. He's 10 now and we've been dealing with all of it for about 8 years. Basically my son's entire childhood has been tainted by this stupid illness. It's only when he's doing well that I remember that he was such an easy baby and is actually very charming and has a fantastic wry sense of humor because for so much of his life he has been impatient, angry, impulsive, short-tempered and sharp tongued. I've always known that he will be OK eventually though because underneath it all he really is an amazing person with a huge heart and a strong spirit. We're not there yet but we'll get there.

I had an eye opening experience like that last summer. We went to see a reptile exhibition at the local library. The little room they were doing the presentation in had about 20 aquariums full of snakes and lizards. The snakes were all really active and moving. I wouldn't say that snakes is a big fear of mine, but watching them all move around with so many moms and kids packed into a smallish room was started to make me feel weird. First they showed the boa constrictors and were walking around letting kids touch them. Fine. I've done that before. But then the presenter keeps telling the kids to sit still because snakes are instinctual and sudden movements may activate them. He is also telling us that he almost was squeezed to death by one of them several years ago but he was lucky and managed to get the snake off of him. I'm looking around the room at all these kids, from babies up to teens thinking, "wow, what if one of the snakes did go crazy?". So then he goes into his rattlesnake part because we live where there are rattlesnakes. And I think to myself, "he would never walk around with a rattlesnake with all these kids" and then he reaches into the aquarium, bare handed, pulls out the rattler and tells us that it isn't devenomed. I'm looking around the room to see if anyone else thinks that might be a bit dangerous but all the moms are smiling and the library personnel seem fine. He's telling us what to do if we ever get bit, which is basically get to the nearest hospital ASAP and expect to be really sick for a long time, as he's walking around a room full of families with a live rattlesnake. My stomach started to feel horrible and I felt like I was in the Twilight Zone or something. I told me kids I had to use the restroom and asked if they wanted to come. Neither did, they were enjoying the show. So I walked out and tried to take deep breaths and calm down so I could go back in, but I never could make myself return. I just sat outside the room and read magazines. The interesting thing was, I knew I was over reacting, but I didn't feel like I could control it. That is when I understood how OCD and anxiety must make my son feel. Part of his brain knows he doesn't have to do the compulsion or that the obsession is ridiculous, but he can't help himself because his fight or flight response is so strong and he is so physically uncomfortable. Logic is total of no value at that point. When it was over I 'fessed up to my boys that I had gotten freaked out and told my PANDAS son that I understood his feelings a little more and acknowledged how hard ERP must be for him and that he was doing a great job. It was such a strong reaction for me, i don't think I'll ever forget it.

I do give my son the adult dose of both. I'm actually considering buying a very high dose supplement. I know some parents do with good success.

Most people here seem to think the XR version (same thing as ES?) is much kinder to the stomach and actually works better. There is some thought that the lower dose of clav acid is better for kids as well. I don't know if you've read Saving Sammy, but XR is what he used. You can still take it twice a day and it actually lasts longer in the system so the benefits are more long lasting and consistent. Augmentin doesn't seem to protect my son at all though. He still manages to get ear and sinus infections on it. Lots of people have great success with it though. We are doing Biaxin and to protect my son's gut we take two high dose probiotics each day as well as drink kefir or Danactive Immune boost yogurt drink.

I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep.

usually Benadryl. It doesn't seem to make him overly tired and I buy the generic dye free formula. I've given him Zyrtec as well but it doesn't seem to work as well for him. I hate that it only lasts 4-6 hours because I'm not very good at remembering to get him the next dose. He usually gets one in the morning and one before bed when I can remember.

I had to hound him a bit after the first round to get the refill called in. Keep trying. I think he is crazy busy and overwhelmed.

Each time we have refilled my son's generic Biaxin Rx, the pills are from a different manufacturer. I remember reading somewhere that generics are not usually exactly the same as the name brand drug, and some people don't do as well on the generic. My son did fantastic on the first round, I switched pharmacies and he hated the smell of the pill during the second round (actually made him throw up one night), so I switched back to the first pharmacy but still got a different manufacturer. Both the 2nd and the 3rd round haven't been quite as successful as the first which I've just assumed is "sawtooth" recovery, but maybe it's that one pill actually works better than another? Can you request generics from a certain manufacturer? It would be interesting to see if getting the same pills as the first round resulted in the same improvements.

We are a few days into our 3rd course of full strength Biaxin. Is Biaxin something he can stay on full strength for a long time like the "Sammy Dose" of Augmentin? or do we need to go to a prophylactic dose soon? We've got one more refill and then I will need to contact Dr. T. again to update him and decide what to do. Those who are using Biaxin, how long have you been taking it and what are your plans? Gains have been good though some back sliding this past week or so. He's had a really runny nose which I think is allergies because I've got them pretty bad myself. His mood has stayed overall dramatically better, though he still has a few cranky moments. He's doing much better in school too. Many of his OCD and tics are gone but those that remain are still very strong. I guess I'm not expecting 20-something days on abx to completely fix it all. I wish! I've added a new supplement called Wellness Formula from Source Naturals. It has a combo of herbs, antioxidants, vitamins and minerals that are supposed to help balance out the immune system. I'm hoping that it will help transition to a smaller dose without a relapse. We'll see.

My son is also on Biaxin and we had also been improving until this week. Mood is still good, but his tics are much worse than they have been. He almost never wakes up with tics, they usually increase as the day goes on, but the past few days they have been pretty constant from the time he wakes up until bedtime. Even some of the ones that were gone for awhile. I need to track all the stuff. Too bad I'm the one with ADD!

I knew my husband and older PANDAS son are because they get so cranky. I didn't realize I was until I had my blood sugar tested a few years back and I was right on the line of pre-diabetic. I changed my diet big time, lost 40 pounds and now I'm not as much. I realized after reading "Little Sugar Addicts" that my younger son is too, but like everything else, he just presents it totally different than my other son. He just keeps coming into the kitchen every 10 minutes and is like a bottomless pit filling up on crap. And he tends to drink his calories. If I'm good about having a hearty after school snack, he doesn't get that way.

My son gets snappy when he is hungry, but so do I It is very common for blood sugar to affect your moods. A good book to read is "Potatoes, not Prozac", you can probably find it at the library. The author conquered depression by controlling her blood sugar through diet. Easy read and worth the time. It will give you some ideas on what you can do to keep his levels even. Basically, some protein, some fat, and COMPLEX carbs at each meal, and no snacking. I read her book about kids, "Little Sugar Addicts" which is really what got me thinking about boosting his protein amount. I just can't find much that he likes. It's very frustrating. I'm going to check them both out again and see what I can come up with. We were doing smoothies in the fall. Maybe now that it is warmer we should try getting back to that. I need ideas for him to take in his backpack so when he has activities right after school he has something to snack on.

I think we will eventually find, and already are beginning to find that disease in general is a state of inflammation. There may be a genetic or lifestyle factor involved, but inflammation seems to play a role in almost every sdisease/disorder I can think of.

Hey all, just wondering, how many of you have noticed hypoglycemia being a factor for your kids? I've always realized that DS gets really grumpy when he's hungry, but it has just been this year that I've been really trying to maintain his blood sugar. I notice a huge increase in tics when he's hungry and he will often get headaches if he goes too long without eating. He has math just before lunch and he struggles with focus. I think it is partially because his blood sugar has dropped. His math teacher was amazed at how well he is doing on his standardized tests because he struggles with the timed tests she gives them in class. I asked her what time they test. It's right after lunch. Well no wonder he is doing better! His teachers have said they would be willing to let him have a healthy snack in class. I just don't know what to send that he will actually eat. I know he does better when we can get him to eat protein with each meal and some fat. He doesn't eat very much at any given time usually and if it is all carbs he will be headed downhill within 1 1/2 hours. The problem is he likes so few protein foods. He mentioned becoming vegetarian not too long ago, which would be fine with me except he won't eat nuts, beans, tofu, eggs or cottage cheese. I told him we could try later but for now he needs to eat meat. He's also never been very good at regulating his physical states. When he was younger I would notice he'd be running in circles or standing weird and ask him if he needed to go to the bathroom and you would see a light go on in his head. It just hadn't registered somehow. He didn't know if he was hot or cold or tired or hungry either. He'd just get crabby. Luckily, it seems to just be hunger that is an issue now. The rest he's pretty good about. If any of you do notice a difference with swings in blood sugar and are making dietary changes to keep the blood sugar level stable, I'd love to hear what works for you.