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Everything posted by simplygina

  1. We tried Zoloft & it didn't help enough to warrant dealing with the side effects. The initial dose of 25 mg did seem to help, though looking back I can't help but notice we started during the time of year that he normally starts to improve anyway. We totally got sucked into the "if some helps, more must help more" mentality, even though we really couldn't decide if we were seeing improvement. By the time we got to 150 mg 11 months later, I realized that the Zoloft was actually causing the increase in tics, & sleeplessness, as well as manic talking & him writhing around
  2. I read somewhere that it is a tic but to me it seems like a tic/compulsion hybrid. My son does both.
  3. my sons stutter comes and goes like all his tics. his is starting the sentence with an aaaahhhh, aaaaahhhhh, aaaahhhh, several times before he actually gets the thought out. it isn't every sentence, more like the beginning of a phrase. his titers were all normal. every august we see an increase in all symptoms. we're guessing it is allergies because we've noticed it gets worse every year mid-august, but we've yet to find something beyond waiting it out that helps much. at least this year his overall mood has stayed pretty good which i am attributing to the abx & the fact that he hasn'
  4. my son had his tonsil out almost 2 years ago. it did help curb the chronic strep infections, but last winter we still had several ear & sinus infections. they didn't respond to amoxicillan at all & omnicef only cleared the ear. i wonder if he had strep in the sinuses (we never cultured) because his doctor figured we'd treat it with abx anyway. once we started biaxin he cleared up right away & has been infection free since february. we are currently looking for a new doctor because i want someone who is willing to think outside the box & is interested in solving the PAND
  5. i have nothing helpful to say except we are experiencing the same thing right now. from mid-August until it snows (late October) we struggle with an increase in all PANDAS symptoms. the tics are the most noticeable, but disturbing OCD thoughts & struggling emotionally are also a problem. we've just been using zyrtec, but i really don't think it helps much. i know benadryl does, but i hate to give it to him very often because it does make him tired.
  6. Red dye was the first thing I realized was a trigger for my son's tics. It also makes him more hyper & impulsive. He's really good about avoiding it. I wish he'd be as careful with other artificial colors as well. Caffeine is another obvious trigger for him & he is practically manic for a bit, talking & moving at 100 mph, then crashes. I also notice that after a weekend of camping or vacation where we are more lax about letting him have some junk, there is a definite period of about 3 days for him to detox. The first he will be touchy & emotional, the 2nd he will ju
  7. Could it be an allergic reaction? Something very similar happened to me actually not too long ago after I'd had about a glass and a half of wine. It was really scary. I woke up in the middle of the night because I felt like I was on fire. My heart was pounding & my stomach was really upset. I wasn't sure which end of me to put on the toilet (sorry if TMI). I felt soooo out of it, & kept thinking I must be dying, though it didn't occur to me to call for my husband. For some reason as I was laying on the bathroom floor (half naked because I was sweating buckets) I looked up &am
  8. Blake has never had oil of oregano because she's never been on antibiotics for more than a short period. I anticipate that it will be difficult at first. Putting it in capsules will be better, but we may have no choice. This would be a short term treatment for yeast infections. When the yeast is dead then it's over. I'm wondering how you all know that your child has a yeast issue? We are on daily abx & are taking a 40 billion cell probiotic capsule each afternoon. I haven't seen a difference with DS one way or the other because he never really had digestion problems that were o
  9. Thanks for your opinions & experiences as well. We are going to try zyrtec for the next few days & see if it helps. He has always been one that doesn't seem to notice how his body feels. We've been to the doctor before with a dual ear infection, strep & a sinus infection with him only saying, "my throat feels weird". i didn't realize his sinuses had been a continued problem after we had his tonsils out until we started the biaxin & they cleared up for the first time. he hasn't been sleeping well either, again, which makes me wonder about sinus issues caused by allerg
  10. For the past few years we have noticed my son's symptoms getting worse in August. We always thought it was anxiety about school starting, though he didn't really seem ALL that anxious. Last August is when we noticed he had multiple tics. Here we are in August again, and everything is getting worse again. I had wondered if being on abx this year would change things, but unfortunately it hasn't. He was taking a prophylactic dose all summer, but I bumped him back up to a full dose when I realized we were back in the same spot. He's not anxious about school. He's not sick. The only ex
  11. OK, just realized i accidentally hit the "last" button & replied to a super old post. sorry about that!
  12. we tried zoloft for about 9 months. at 25 mg we noticed a boost in mood & coping skills. over the 9 months we kept increasing but we never really saw other improvement. we realized that it wasn't helping and at a higher dose, was actually making things worse. it took almost another 9 months to wean him completely off of it. at one point he was at 150 mg & it made his tics much worse, plus he was writhing & unable to sit still, manic in that he was a complete motormouth & couldn't sleep. he also gained 15 lbs. in the 9 months. after that i wasn't willing to try another one
  13. It does help to try one thing at a time, but we are all so anxious to see improvement it almost seems cruel to not try something that seems promising. As far as supplements go, we do a bunch & do notice a difference, though nothing as dramatic as when we started abx. My 10yo takes flaxseed oil, the Bontech supplements (magnesium taurate, vitamins A,B,C,D,E, other minerals), tumeric, digestive enzymes, 5htp, inositol & melatonin. We see a definite improvement with disturbing thoughts with the inositol. The melatonin is also extremely helpful for his night time anxiety. The Bonte
  14. My son does too. It's the same with TV or going to the movies. I'm not sure why, but it definitely increases his tics and makes him more emotionally volatile. Sometimes it is worth it (like going to see a movie as a family) but usually it isn't. I love Dr. Amen. I've even read parts of his books to DS to explain why I'm so strict about TV & games. Having a Dr. back me up goes a long way with that kiddo!
  15. it may not be the right antibiotic for him. we tried augmentin but ended up with infections in the ear & sinus even on a strong dose. we switched to omnicef and his mental condition deteriorated to the point that i was truly worried about his mental health. anxiety & rage coupled with major sadness and not wanting to do anything but play his DS in his room. then we switched to biaxin & had a HUGE improvement in 48 hours. i had heard about people seeing this miraculous improvement when they switched abx but i never dreamed it would happen for us. so maybe he would do better
  16. Good point. My son's last strep infection coincided with a dual ear infection & a horrible sinus infection so we did a strong course of azith 2 weeks before the surgery so that probably helped.
  17. That's the part I'm enjoying the most with DS lately. He has really been cracking me up lately!
  18. My son's T & A surgery gave us a year of improvements. He's been far less sick since he had them out. His behavior improved. He started sleeping in his own bed through the night for the first time ever (he was 9 at the time). It didn't cure him either, but definitely improved things.
  19. for us vocal tics are the last to show up during an exacerbation & the first to clear up. for ds his most persistent tic is one where he pushes his stomach in and out. we just started vocals around feb...he may have had 2 days last summer but he also had a retainer then..and there were 2 days in december...maybe retainer.... they may be deminishing..but its taking long and i hate them the most..... right now its a sneeze, cough, popcorn caught in throat, ch,ch sounds how long did it take to clear for your child???? i hate them the most too, though i'm not sure why. em
  20. i don't know a lot about this sorry. i know that my son is on a low dose of zoloft and it has not seemed to have an effect on his tics. maybe it effected your son differently? what kind of withdraw problems did you have as we are hoping to wean DS of it this summer before school starts and once we get him on antibiotics. the effect was so subtle i didn't realize it was affecting the tics. maybe it didn't & is just a coincidence. i don't know, but i'm so glad to finally have him off the zoloft either way. body chemistry is so individual, so my son may have just not been a good fit
  21. So we have finally weaned DS of Zoloft completely. It has taken us since late October! We finally just pushed through the final withdrawal reactions. I think it will be a few more weeks to have it completely out of his system, but I think we are through the worst of it. I wish I had known more about the withdrawal problems associated with SSRIs before we started. It may just be a coincidence, but DS's tics have all but disappeared. Now that I look back I wonder if Zoloft was the source in the first place. Maybe not the source, but made everything worse? He started taking i
  22. for us vocal tics are the last to show up during an exacerbation & the first to clear up. for ds his most persistent tic is one where he pushes his stomach in and out.
  23. i was just going to recommend the same book. he gives information about what supps help & why, plus dosing recommendations. we've had great luck with the Bontech Supplements, which are a blend of stuff and were created to help with TS & OCD, but the main ingredients are magnesium, taurine, & B vitamins. DS also takes fish oil, a high dose probiotic, inositol, SamE, & curcumin.
  24. I always thought it was curious that DS could sleep at friend houses as well. But if you think about it, they aren't sleeping alone. When DS started sleeping on his own in his own room at 9 after his tonsillectomy, I was soooo happy. Since then he goes through bouts of wanting to sleep with someone. Since we won't let him sleep in our room anymore he lets his younger brother sleep with him or he calls the dog into the room to sleep with him. i do think there is a habit component to it, but when the stars aligned or whatever happened after he had his tonsils out, he just started sleeping
  25. it may just take a day or two for his tummy to adjust. my son felt really nauseous the 2nd day. the 3rd day he was a little queasy. since then he has been fine. he eats a lot of bananas, which he says settles his stomach. you could try that?
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