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Everything posted by GatsMom

  1. I think they all know something subconsciously but often the ocd clouds it with so much other static. My son is the the most intuitive person that I know.
  2. This is more of a question really. I have tried to figure out from prior posts but did not find...If a child has been dealing with PANDAS symptoms for a long time, as in our case like 5 years, could it have been from mycoplasma all along? Are we saying that a child could get mycoplasma and it was never caught and treated so that is why they continue with symptoms off and on? And if you test now, it will show past infection? Vickie: There were 7 days when Azith 750mg (once daily) and Augmentin 1000mg XR (twice daily) coincided. We saw a little blip of improvement a day or so into the
  3. This is more of a question really. I have tried to figure out from prior posts but did not find...If a child has been dealing with PANDAS symptoms for a long time, as in our case like 5 years, could it have been from mycoplasma all along? Are we saying that a child could get mycoplasma and it was never caught and treated so that is why they continue with symptoms off and on? And if you test now, it will show past infection? Vickie: There were 7 days when Azith 750mg (once daily) and Augmentin 1000mg XR (twice daily) coincided. We saw a little blip of improvement a day or so into the
  4. That's the first thing I thought of. Further, we tried Azith before Augmentin. 9 days of 500mg followed by 8 days of 750mg and saw no real change. It's too soon to tell with the Biaxin but I think a big gun is needed sometimes...maybe for the older kids?
  5. I have nothing of clinical value to add. I would only add that I think everything you and your daughter (and other family members) are feeling are legitimate and totally understandable given the circumstances. The emotional lability piece of my son's illness is exhausting...and that's just for me, I can't imagine how it feels to be so emotionally fragile from his perspective. Good luck tomorrow, you know she is in good hands.
  6. very, very good news that it seems to be having a positive effect! gat's mom - if i may ask -- was this your first appt with dr. T? did you do the bloodwork prior to the visit or on his order? was it only strep titers and mycoplasma or full immune workup? is that a blood test? is it only a 5 day abx and then nothing? so am i correct that your thought now is that you were trying to go after strep as the root cause and we seeing no effect b/c that wasn't the problem, the abx you were using is effect against strep but not mycoplasma, and now are hopeful b/c you're going after the c
  7. My daughter and I started our own study last night. My son saw me move his charging computer to the kitchen for the night, asked me why and rolled his eyes when I told him. I moved his charging cell phone across his bedroom (instead of on his nightstand). It was also turned off. Unfortunately I haven't figured out how to unplug his tv/game system without it having to reprogram but it, too, is at the other end of his room. Otherwise, there is no other outlet in use and the dimmer switch on his ceiling fan is completely off. Anything unnecessary was unplugged last night, most of it remains unpl
  8. You guys are great, thank you so much. In late fall (always late fall) I started to see some ominous small signs. There was no measurable illness preceeding it. He was already fading fast, then over new years he got a 24 hour bug and all &*^% broke loose after that and that's where we've remained. Typical disease course for him. I'd have bet my house that his strep titers were going to be very high, the presentation is exactly the same as his last exacerbations. I have no clue what to make of this but today (after 3 doses of Biaxin and only half the prescribed amount of yesterdays
  9. Doesn't it feel wonderful when you take a big step forward? Great job, Mom, way to hang in there!
  10. I believe Dr T routinely screens for mycoplasma now. Thank God he did, too. My sons symptoms are EXACTLY the same as his middle school exacerbation. We never tested mycoplasma then but we do know his strep titers were very high. Augmentin will not touch mycoplasma. Azith and Biaxin are abx choices for this. We're hoping for some sign of relief in the next couple days, anything to show we are finally on the right track. It took forever to get all of his labs assembled so we've been throwing a good deal of augmentin into him which he's tolerated pretty well but certainly wasn't helping with
  11. Dr. T seems to think it's mycoplasma only this time. We weren't seeing much of anything with a "Sammy" dose of Augmentin for 16 days. Labs just finally all came back and mycoplasma is a surprise and brought about the therapy change. His ASO is a little elevated, so I don't know if we should be treating that too. Myco p was more out of range than ASO.
  12. Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack. Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life. Thanks very much! Gat's mom
  13. And I appreciate those 2 cents, Carole. He's going to have to stabilize before I can get more labwork out of him. Normally sticks are a nonissue for him but oh boy, not this time. Have an appt to go over his labs with Dr. T this afternoon. We've used Houston Enzymes in the past and it may definitely be time to revisit. Gayle
  14. He had some sensitivity testing via applied kinesiology during his last exacerbation with no major sensitivities. The herbalist that tested him still follows his case and she's convinced the the porousity of his BBB is out of what and a gluten free diet is needed. We were doing well in that regard but have fallen off in the last week when it became more of an "eat anything, just eat something" scenario. He elects to stay away from milk when in an exacerbation as it plays to all of his contamination fears and I've long considered that it must be something that his body does not need or isn't us
  15. Perfect reading material on the morning after a very long night here. Happy birthday and thank you for offering your views, as always they are immensely helpful and motivating to this mom. Gat's mom
  16. In the other current thread about cessation of symptoms during illness, someone mentioned the possibility of remission in symptoms having to do with the ketogenic state that most kids go into when they are sick and not eating. I looked further into that and know that ketogenic diets are often prescribed for kids with epilepsy. Seems burning stores of fat for fuel rather than carbs & protein somehow regulates the electric activity in their brains. If possible, they start those kids with a 24 hour fast to get the body used to burning those fat stores. I could be way off base (am waiting
  17. I was just reading about Manuka honey and hoping I could find some locally. That's a great idea! He does lean toward the single serve, individually wrapped things (a piece of wrapped cheese did go in him today). I'll get the applesauce tomorrow. We normally go through a lot of yogurt but I think he's getting burnt out on it because for weeks its been a staple. If somethings been in the frig for more than a couple days now, he won't eat it regardless of the expiration date. When he does eat, he doesn't like me to make a big deal out of it. I think he's working so hard just to get it down so I a
  18. Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece. He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've
  19. I have a cousin who had a boatload of vaccinations to travel to South America for an educational fellowship several years ago. She has never been the same since. Immediately after the immunizations she had horrible flu symptoms for a week. Through the years since that time she has symptoms that mirror my sons to a frightening degree. She's never been able to talk a doc into pulling titers and her symtpoms occasionally remiss like my sons but she knows the immunizations to head to S. America were the start of it. She had enjoyed fabulous health up until that point.
  20. When we started working with a DAN! 3 yrs ago, he did a trial of a prescription antiviral (similar to Valtrex) on my son. It was disastrous! Within 72 hours of starting it we experienced a huge crash. Now many would call that a healing regression and to stick it out but he was so weak from battling ocd and his inability to eat that I knew he could not tough it out. Later in his recovery, once his gut was in better health (using Rx antifungals to get what our DAN! thought was yeast overgrowth) under control, we tried Olive Leaf Extract for it's antiviral/antibiotic qualities and he did so well,
  21. My ds16 has always been like this, particularly with some of the decisions teens make at this age (smoking, drinking, sex, etc). While I'm glad his mindsets keep him away from bad decisions, I hate thinking it's because the ocd won't allow him to come to the decision based on his own intelligence. We've always wondered why he was so over the top vehement about such things. Thanks for bringing this AHA moment to the forum. It is true, the more information that I read, the more it's clear mine has never fully recovered from his last episode 3 yrs ago AND that his very high functioning sister (22
  22. After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm. Seizure activity was the first thing I thought of when reading your description. I am so sorry for what you are going through. He's so fortunate to have such a dedicated family.
  23. We just yesterday started pricing a heavy bag for his room. Anxiety that leads to panic that goes the step beyond to a full meltdown will have some of the symptoms described above...plus screaming in frustrated anger. He's never punched a wall, directs it to a bed or a chair, hence the heavy bag purchase. He's 16, he would easily put a whole in a wall. Not all episodes of anxiety go this far, but boy when they do it's ugly and frightening. When its over he's exhausted and embarrassed but typically much calmer and it's like a burden has been lifted off his shoulders. Gat's mom
  24. Sandy, So interesting! I once worked in association with an acupuncturist from Thailand. One of the things I can remember about her despite a huge language barrier was that rashes and any eruptions (I'd assume emotional, too) were the body's way of purging. I'm a massage therapist with a clinical practice and emotional purges with my clients, though uncomfortable for them in the moment, are nearly always a bridge to healthier ground. My cousin is a research psychologist and she, too, agrees that emotional releases (specifically the crying I do wrt to my son's relapse and the current state
  25. We've continued to keep in place the supps that our DAN! started us on back when he was 11 (he's 16 now). Our dairy is organic. Moderated amounts of gluten. D3, cod liver oil, vit c, probiotics (therabiotic detox support by klaire labs), kefir, yogurt, melatonin and fluconazole for yeast. he's taking a lot right now in conjunction with augmenting 1000mg xr twice daily (day 14) and advil. He's currently unable to do school. at the point that we see improvement enough to return to school I'll add back pygnogenol, L-tyrosine & P5P for attention and focus. his stomach can't tolerate any more
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