Jump to content
ACN Latitudes Forums

GatsMom

Members
  • Posts

    220
  • Joined

  • Last visited

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 Augmentin but it was very slight and faded quickly. The big eating disturbances happened after that. His labs showed ASO of 206 with a top range of 145 so I'm praying that the 16 days of Augmentin were enough to take care of that leaving us with mycoplasma to deal with. Dr. T knew prior to putting him on Augmentin that he had been on Azith 500mg and told us to continue on for 10 days or so at 750mg. When he started to decline after a few days, I suspected it was either yeast or him unsuccessfully adapting to both abx at the same time. Dr. T agreed to d/c Azith at that point. We've been treating for yeast with Fluconazole 100mg all along at least once per day, sometimes twice when I can get enough food in him. As far as whether he could have had a mycoplasma through his other exacerbations, I have no idea. In elementary school he was completely undiagnosed, more tics same horrible anxiety and panic. Middle school was diagnosed but only after 6 really bad months and even then wasn't treated with high dose abx. We tested strep titers from the info I found online (NIH and such) but never thought to test for other pathogens and neither did the DAN! doc we were seeing. So, it's hard to tell looking back if he had one pathogen and multiple pathogens. All we know for sure is that 4 years ago he had high strep titers and all of the symptoms he currently has now with low strep titers and positive myco p. It's a puzzle. Oh, and just to muddy the waters a little more, during the first months of the middle school exacerbation prior to actual diagnosis we were, at the insistence of our beloved school district, dragging his kicking and screaming little body into that school everyday. It's completely possible that the strep is something he picked up after his decline, secondary to whatever caused this in the first place. We look back at titers and say it was strep but given this new info and timeline, I have to wonder if the strep last time wasn't simply a co-infection he picked up during high strep season while we were still dragging him into the school in his horribly compromised state. ugh.
  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 Augmentin but it was very slight and faded quickly. The big eating disturbances happened after that. His labs showed ASO of 206 with a top range of 145 so I'm praying that the 16 days of Augmentin were enough to take care of that leaving us with mycoplasma to deal with. Dr. T knew prior to putting him on Augmentin that he had been on Azith 500mg and told us to continue on for 10 days or so at 750mg. When he started to decline after a few days, I suspected it was either yeast or him unsuccessfully adapting to both abx at the same time. Dr. T agreed to d/c Azith at that point. We've been treating for yeast with Fluconazole 100mg all along at least once per day, sometimes twice when I can get enough food in him. As far as whether he could have had a mycoplasma through his other exacerbations, I have no idea. In elementary school he was completely undiagnosed, more tics same horrible anxiety and panic. Middle school was diagnosed but only after 6 really bad months and even then wasn't treated with high dose abx. We tested strep titers from the info I found online (NIH and such) but never thought to test for other pathogens and neither did the DAN! doc we were seeing. So, it's hard to tell looking back if he had one pathogen and multiple pathogens. All we know for sure is that 4 years ago he had high strep titers and all of the symptoms he currently has now with low strep titers and positive myco p. It's a puzzle.
  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 correct bacteria? That is my thought ...that we were treating for strep (which historically we had) while waiting for labs to come in only to find a high mycoplasma which necessitated an abx change as Dr T said mycoplasma will never respond to augmenting (penicillins and cyclosporins). My hope is (and the math of it all would support it) that we're now treating the actual bacteria he has. His ASO was a little elevated so I don't know if that will be addressed in time or not. Clearly our biggest prob right now is mycoplasma. This was our first appt with Dr. T. It was done in the form of a phone consult. We can't get my son in the car to drive to town right now, traveling to NJ from TN absolutely could not occur. The mycoplasma panel was one of 8 tests that Dr. T ordered (which included ASO, AntiDNAse, Streptozyme). I believe he was trying to rule out Lyme, Epstein Barr too. ASO was high, myco p IgG & IgM were high. Quantitative IgG & IgM were high. Gat's on 10 days to start of Biaxin but there are refills and I think even if we had a remarkable recovery in 10 days, we'd be looking at some kind of additional therapy. He is a very sick kid. The steroid burst is scheduled for 5 days. Gat has been an advil responder all along, so I'm happy to finally be trying steroids though we're going about them a little slow. Even beyond his work as our physician, I can't say enough about Dr. T as researcher and man truly concerned about the welfare of our kids. He doesn't have to do any of it, he could turn a blind eye to it like so many do. We've gone from no doc for the better part of 8 years who would listen or understand to one of the true experts, so despite the current state of our lives, I'm forever reminded of that blessing. Hope that helps.
  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 unplugged this morning. He's on a new abx that is really better aimed at his particular infection so it might be that but I'll add that he's up today hours before he would normally be and hungrier than usual (both are good things for him!). Thanks so much for posting this and bringing your success to our attention! Gat's mom
  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 steroid) he was up and wide awake at 7:30 this morning...and grumpy because he said it was too light in his room to go back to sleep. I beg to differ. I wake him out of a sound sleep around that time each day to get his first probiotics into him and he rolls right over and goes back to sleep. He's been sleeping 12 hours everyday for weeks now. Hard, deep sleeps that are difficult for him to wake from. He has a really hard time falling asleep at night and it was nearly 1a before he was out last night. Even after 6 hours of sleep, he looks more clear and focused and his color looks better than in days. I'm electing to go light on the steroids because he is so sensitive to anything stimulating right now. There are others (first cousins of mine) for whom steroid use can trigger panic attacks, a fact I didn't know until giving one the daily update about Gatlin. Further, he's hungrier so far today than he's been in two weeks. God love the Turks or anyone else who puts time into this research! Thank you so much for the links and any other pearl of wisdom that comes to you that you can share with me (and know that I often reduce them down to a sentence or two and throw them at him as another encouraging fact) Gat's mom
  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 his appetite and refusal to eat. We're the proof that different organisms can produce an exacerbation, in at least this kid, just like PANDAS. Gat's mom
  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 using properly. Vickie: I know exactly what you mean about offering food. I try my best to limit myself in my offering and not chase him down with it because it only makes things worse for him. Last night, we had a meltdown of epic proportion from midnight til nearly 2a. This came as a complete surprise because superbowl sunday is just a great day for him. His dad came over and they had a great time watching the game. I listened from other parts of the house and he sounded just like my son again. In an effort to get him to eat and enjoy it I made one of his favs, cream of potato soup (a lot of milk, a lot of cheese). He had seconds. Then 5 hours later it all fell apart. The thought trigger was all of those *&^% ads during superbowl for aspirin therapy for heart attacks. (and the patients in the ads who were going through their lives normally when boom, they nearly died from an MI). I knew at the time that those ads were coming too fast for him to process! I understand the thought trigger, but what made him trip to that level and did last night's dinner choice have a role in it. I'm looking into the similarities between gf/cs and the ketogenic diets to try and find some middle ground. In my own work, I recognize the value in certain diets when the body is in crisis as a means of leveling the playing field for optimal recovery. I would have no trouble believing that the thyroid is somehow involved (my mom has had a pesky thyroid for years). He had no exercise at all yesterday and I'm sure that didn't help. His dad is bringing a weight bench over for him to use, hopefully that will spur more physical activity which is usually not a problem for him. I appreciate all the help. I'm worn out. Gat's mom
  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 to hear from my epilepsy expert on this) but I know my son's food refusal isn't 100% ocd. There is an element that is contamination fear and of course the biggy, fear of throwing up BUT he maintains that he has no appetite particularly in the first few hours after he's awake after his 12 hour nightly sleep. For several days now he goes about 14-16 hours without eating (10-12) of that he's alseep. Everyday by about dinner time, he starts to come around and almost always eats a decent dinner. I'm a firm believer (through my work) that the body is constantly seeking homeostasis and possesses innate abilities to right itself. I do recognize that sometimes things get bigger than the body can regulate on its own...like strep in our kids. I understand (and fully appreciate) the need and benefit of all outside therapies but is it possible these fasts (that seem painless for him) are part of his healing? I will continue to offer food. I, too, sometimes have success with putting out a platter of options for grazing. (did this for superbowl tonight and he did great) Single serving sizes and smoothies/shakes, too. I really appreciate the great ideas from everyone and, as always, it's so good to know we're not alone in this one. Much like the 12 hours per night of sleep he's claiming, I'm wondering if a few hours of ketogenic therapy per day is part of the way his body's trying to heal. Does this make even the slightest bit of sense to anyone else or do I just need a big glass of wine? Thanks much!
  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 always downplay it and, like you said Vickie, clean up any evidence later. I have been trying to remind myself all day that we've been here before and his beautiful appetite returned once before, surely it will again. Please keep those ideas coming! Thanks so much!
  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 only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing. Many thanks Gat's mom
  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, shedding old ocd behaviors quickly. Many kids with an ASD test high on HHV6, which supports the DAN! stance on antivirals. We will surely revisit olive leaf extract when I can get him eating consistently again. I do think antivirals (Rx or natural) are a useful therapy but I also believe the patient should be somewhat stable and even then utilize the old battle cry from the DAN! world...go in low and slow.
  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) had a big episode herself at age 11. We were nowhere close to seeing it for what it was and a psychologist quickly diagnosed her ocd yet a few months later, it passed and never returned to that degree again. Thank Heaven for this forum and these doctors.
  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 of our life) is highly therapeutic. Further, on a bad day, my son's most lucid, relieved moments are after a meltdown. All seem to point in the same direction. Where do you live? My son is 16 also and completely unable to do school for the past 3 wks. Thank you for your very interesting post! Gayle Gat's mom
  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 than what's we're currently doing. The last 3 for attention and focus really helped last time once we got anxiety and intrusive thoughts under control.
×
×
  • Create New...