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Everything posted by simplygina

  1. I'm doing the test for both of my boys. My boys are also night & day. But I've been worried about my youngest for awhile now too. His behaviors are different, but still fall in line with PANDAS behaviors. We've always struggled with encopresis & enuresis with him & for years I would tell my husband how weird it was, and how totally emotionally draining it was for me that his brothers OCD issues were bad at the same time he was constantly having accidents. Nothing like having a germophobe living with a kid that is constantly pooping his pants! And lately, I've think I've no
  2. 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 OC
  3. 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
  4. 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?
  5. 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
  6. 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
  7. 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 mou
  8. 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 multip
  9. 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 c
  10. 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 start
  11. 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.
  12. 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 & ins
  13. 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
  14. 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.
  15. 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.
  16. 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.
  17. thanks guys! sometimes you just gotta vent!
  18. 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
  19. 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
  20. 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
  21. That's what I was afraid of. I hate having to decide medical decisions based on money!
  22. 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.
  23. 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.
  24. 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.
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