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GatsMom

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Everything posted by GatsMom

  1. Perfect news, K! Congrats and good job taking the time to be observant of the forward motion. Onward and upward!
  2. Lice letters, CNN, FoxNews (and any other scrolling 24 hour media blitz), yard signs in front of grocery stores and pharmacies touting H1N1 vaccines to keep us all from dying of the flu, SSRI ads on tv that list boldly the potential side effects....and on it goes. Fear tactics utilized by advertisers and mass media designed to get us to buy or conform. Most people can put all of that into proper perspective but proper perspective is currently lost on my ds16, adding the difficulty of his life currently.
  3. Over in the autism world there are so many families who see consistent and predictable flares monthly. I never followed those threads far because its not a problem we have but I do know they believe it to be parasites of some kind and treat accordingly. I have a friend locally with a dd10 with PANDAS (not autistic) who also has the monthly fevers. Her care is shifting from a DAN! (the one we used) to Vanderbilt's Neurology Department in the next few weeks, so it will be interesting to see if that organization has something new to add.
  4. Yes, Michael activated charcoal in capsule form for mop off of all sorts of toxic die off. Citrus pectin is another one. You've really got to be careful about taking it far away from meds/supps because it will mop up the good stuff as well as the bad. I know I sound like a parrot about that but its always been stressed that same way to me. However, I know it can offer significant relief from some of the die off symptoms that come from using antifungals when you've got a big overgrowth going on. I don't know if die off is a problem from killing off bacteria like strep with high dose abx though I would think the same logic would be true. Am curious if anyone else has dealt with die off symptoms when killing strep...or is that the sawtooth recovery that I've read here before? Sure hope you're feeling better each day. Gat's mom.
  5. Lotafaith, We saw David Adams, MD in Birmingham for the past several years. I can tell you he has some experience with PANDAS. He's also a DAN! doc which certainly is a great thing if your son is autistic. Dr. Adams is no stranger to working with gut and sensory issues. I, however, was unsuccessful in gaining a trial of abx that so many people have had success with on this board. I did find Dr. Adams to be very intelligent and highly dedicated to his ASD population. I know my son was not his only PANDAS patient. I suspect he'll be at the AutismOne Conference in May and he'll gain even more knowledge on PANDAS. By that time I hope to be able to communicate my son's success with antibiotics back to him for the benefit of others in his practice. Best wishes to you and your family. Gat's mom Dr. Adams started my son on Therabiotic Detox Support by Klaire Labs. I buy it from The Wellness Pharmacy in Birmingham and they ship it to me cold.
  6. I have the same problem keeping my ds16 optimistic or even remotely hopeful that therapies are going to work. His previous exacerbations have been 1-1.5 yrs each with a year or more between them. Half of the last 7 years of his life have been with debilitating anxiety that colors every aspect of his life. How in the world do you keep them trying and hopeful in the face of those statistics?
  7. Welcome Jane, You have reached the right forum and you have clearly found one of the best doctors around for treating this. You are farther ahead of the game then you may realize. You'll find amazing support, optimism, hope and utter genius within this forum. Best of all, the forum will continue to reiterate that you are not alone in any of this. Vickie makes great suggestions (she always does!) regarding supplements. I'll add my 2 cents also by encouraging you to take a minute for appreciation for this forum, for that doctor, the fact that you found both and for how much help there is available now compared to a decade ago. You're among friends. Gayle Gat's mom
  8. Such wonderful news! Great medicine for those of us with older kids. I often wonder if mine can fully recover after so many years of assault that went untreated. I really needed to read this today. Thank you so much for posting! Gat's mom
  9. Maybe it is a big yeast overgrowth if you were battling yeast prior to abx. Possibly a healing regression (herx)? Since you are going to continue forward, I'd sure be pushing fluids, adding epsom salts baths and think about the possibility of a little activated charcoal to mop up the die off. Just be SO careful about keeping that charcoal hours (at least 2 and I'd aim for 4 hours) away from all other meds as it will mop up the good stuff as well as the bad. If you can time it correctly, it can really give relief from those toxic feeling regressions. Were you mycoplasma positive? High strep, too?
  10. Lotafaith, We saw David Adams, MD in Birmingham for the past several years. I can tell you he has some experience with PANDAS. He's also a DAN! doc which certainly is a great thing if your son is autistic. Dr. Adams is no stranger to working with gut and sensory issues. I, however, was unsuccessful in gaining a trial of abx that so many people have had success with on this board. I did find Dr. Adams to be very intelligent and highly dedicated to his ASD population. I know my son was not his only PANDAS patient. I suspect he'll be at the AutismOne Conference in May and he'll gain even more knowledge on PANDAS. By that time I hope to be able to communicate my son's success with antibiotics back to him for the benefit of others in his practice. Best wishes to you and your family. Gat's mom
  11. The book I mentioned was about Streptococcus itself. I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue. Does anyone want to help me? Work in the publishing field? Dr. T I have two contacts, one in publishing and one is an author with six books to his credit. Both are aware of the journey my son and I have been on for the past years. I have emailed them both. Gat's mom
  12. My daughter has ice cold feet. They did warm while she was on augmentin. Not sure what it means. My son has very cold hands when anxious which I always thought was odd because blood flow is diverted toward the limbs in a fight or flight response. He has an awful time regulating his temperature perceptions when in an exacerbation. His hands may feel cold to me, but he's forever complaining of being hot.
  13. Your zinc comment sent me searching....take a look at these-you may be onto something: http://www.ncbi.nlm.nih.gov/pubmed/3896271...ogdbfrom=pubmed http://www.ncbi.nlm.nih.gov/pubmed/1969150...mp;ordinalpos=4 http://www.ncbi.nlm.nih.gov/pubmed/1951946...mp;ordinalpos=7 Good reading! Our DAN! always insisted my son be on a zinc supplement. Not ridiculous quantities but a boost everyday. In my quest to keep his daily pills down, I've back-burnered zinc thinking that because he's home he's not needing it to help ward off opportunistic stuff prevalent in school. I'll bring it back on again, at least 50mg for my 150lb'er. If anyone else is supp'ing zinc, be sure not to use it at the same time as any calcium supps as it will block their action.
  14. Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes. As with every aspect of PANDAS, I think it is important to list the tools and acknowledge that they work differently depending on the severity and stage of the child. We were blessed with great psychological support & were able to use ERP very effectively. But NOT as a cure - as a tool to get through the days. To get to a party, or to touch the playground, or to stop washing till she bled. Or to eat. Just getting through an otherwise impossible day. Once we FINALLY became blessed with Medical help, then we did find that shedding residual OCD was really easy using ERP tools as a support. Maybe she would have shed as quickly - maybe not. She is really good at them now, and during the 2 minor blips, those tools have served her very well. We actually use a version of CBT to deal with all kinds of childhood "woes" now, and it helps her think through a lot of situations. The workbook we used at home to help her understand what was happening to her (which was a huge relief to her) is called "What to do when Your Brain Gets Stuck". Meg's Mom: I will see if I can find a copy of that workbook. I'm all for anything that might help. I only meant that in our experience, we had no luck with the 6 different psychs that we worked with over the years. In some cases, they did far more harm than good. I would love to find one who could really help Gat process the things he's going through and add insight that I may be too close to the situation to see. Can the workbook be used without the guidance of a psych? Vickie: I did mean Freeing Your Child from OCD. I do have both books and found them both to be very good.
  15. Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.
  16. What a great thing to read! Hope springs eternal and there is, truly, strength in numbers. Thanks so much for sharing this and congratulations to both your son and you. Enjoy the end product of your dedication!
  17. While under the care of a DAN! doc during my son's last exacerbation, he insisted on NAC and zinc daily. When my son was better and life got back to good we were permitted to discontinue those supps (there were many we were encouraged not to discontinue...ever). When he started another exacerbation 6 wks ago the DAN! doc started him on Fluconazole (antifungal) which is the route he takes versus abx. He told me after we treated yeast, he wanted my son on 600mg of NAC again. I never have restarted the NAC because we continue to treat with Fluconazole (to keep yeast at bay while treating now with augmentin). Any idea why NAC was to be added after yeast treatment instead of during? Many thanks, Gayle
  18. It is worth a try. I understand the concept of one new therapy at a time but that's hard to stick by when you are suffering, particularly when not all of the new therapies are invasive in nature. Good for you. NAET is another option that we have yet to explore but one that I continue to consider. Interesting, and promising, that you tested positive for the bugs that Dr. K is also treating. I'd call that a step in the right direction. Keep us posted, I think this is very interesting work. Gat's mom
  19. Have never tried but have given much thought to it. I know of another discussion board for parents of autistic kids and while my son isn't autistic I garnered much good information through the years from that group (before I knew of this godsend of a board). They are, as a group, pretty opposed to abx for their PANDAS population and many rely on homeopathy. Pleo San Strep is a remedy that I would like to try for my son. We're currently finally on a good abx trial but I strongly suspect that even if it works perfectly, I will be looking for some maintenance therapy that is gentler to his system and effective in keeping strep at bay. I also work with a herbalist who has been watching all of this through the years who agrees with this theory. Has your daughter had any of the testing that our kids typically have to conclude a PANDAS diagnosis? Gat's mom.
  20. Interesting possible correlation. My son, whose 16, has the "hot" thing going on, too. We just had labs ordered among which are quantitative immunoglobulin levels. If his IGG is low, I'll be looking more closely into thyroid testing. His maternal grandmother has had considerable thyroid issues for years. Thanks for the good information! Gat's mom
  21. I understand your frustration completely and you are certainly not alone. I say get the appointment, the first one he has available. From everything I've read and my experience with Dr. T, I cannot imagine that any of the true experts in this field, Drs T, K, L & B, would tell you they were out of suggestions if the antibiotics you've tried weren't effective. There are multiple options available, abx is just one. Further, your child may not have been on the right abx or correct dose. You are very fortunate to have Dr. K in your network. That's a great sign, jump on it! Gat's mom
  22. Hi Lynn, During this exacerbation, tics are not our big issue...it's separation anxiety and some contamination fears thrown in for good measure. We have the please of being under Dr. T's service so for the first time ever, I'm not trying to convince someone of what's going on with my son. As frustrated/sad/scared to death as I am, we actually have it so much better now than ever before. Just having a great doc adds a layer of hope that we'd always lacked previously. If needed, I'd pull out every big gun in the arsenal to get him back to his life of a few weeks ago. Since he's a good responder to advil, I suspect if needed he might be a good responder to steroids but I want to know we're not dealing with lyme as well before even bringing that up with Dr. T. Historically we have ridiculously high titers during an exacerbation, so I'm really hoping oral abx will pull the trigger for him. He's been through enough...they all have. Thanks so much for your support! Gayle "Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.
  23. "Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.
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