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Everything posted by GatsMom

  1. Mine does that with benedryl! Mine does well on Loratidine 10mg. He also did well a few years ago on Singulair that was given more for immune modulation than actual allergies but certainly helped with his seasonal stuff as well. Over on the MB12/Valtrex yahoo group today a mom (one of the brilliants, too) reported big success with her son's PANDAS symptoms with Ketotifen (an anti-allergy/antihistamine with secondary effects on the adrenergic system. I called our pharmacist whose been watching my son's journey for 5 yrs to ask her about it. She says from what she can see it's not availab
  2. You may want to think about adding zinc, too. If you child is a low methylator (and honestly, I'd bet most PANDAS kids are) she will be deficient in zinc on a good day. It will help lessen the severity of cold symptoms. Try to give it away from other supps, particularly calcium. My son is 16, 125lbs and I dose 50mg before bed along with his melatonin and probiotics. Zinc was one of the first things our DAN! put into his lineup years ago and even when times are good, I add it and vit c back through the winter months. HTH
  3. I'm sure sorry you're having a rough week but I, like many, think you are one amazing young woman! Oh yeah and p.s. my nearly 17 yr old PANDAS son saw your pic and is suddenly way more interested in latitudes and the copious amounts of reading I do on his behalf than ever before...go figure!
  4. Would you mind sharing the mg strength on all the components of this bedtime cocktail as well as the age of your child? Many thanks.
  5. Our DAN! originally put my son on Amanditdine stating it was an "old antiviral". I would have to attest to its efficacy as my son had the mother of all herx's after 72 hours on it. Later, when his overall health improved, OLE pulled a big trigger for him.
  6. My son is an ibuprofen responder. Hope that took the edge off for your son. I've learned to substitute vit c and/or zinc drops sometimes to at least get a little nutrition into him. At one time I even used gummy multivitamins. He always preferred a mint and I know the peppermint soothed his stomach which was always an issue, too.
  7. I sure needed to read this...especially this week. Thanks you great moms!
  8. I think we know each other from the other forum...? I don't have older kids but I am always shocked when I read something that is so earily similar to some of the thoughts I have had. I have told my husband several times over the last couple years that sometimes I just want to get in my car and drive away and not come back for a month. And guess what, one day over the summer I did just that (except i just went to my mom's, she and I got in a fight about whether or not my kids had pandas , and I was back home within 24 hours...sigh!). So unlike me to just up and walk out of the house, leave th
  9. I know the feeling, like PANDAS is sucking the life out of you... It seems you are giving all you've got in terms of treatment. It is so draining, the mental stuff... They want you there, they want you to support them, their need is real, but you look at them and you know it doesn't make any sense. They know it doesn't make any sense, but they can't help it, and you can't help them, cause no matter what you say or do, it doesn't help. I HATE THAT. So frustrating... My original PANDAS ds, now 13, is doing better now that we started Lyme treatment. My dd10 I'm pretty sure has PANDAS an
  10. Like everyone, I'm so sorry you, your child and your family are going through this. Like Emmalily, my son whose 16 is tripped up often with a gag reaction. Also like your son, he spits when the gag reaction is at its worst and it will often be the catalyst to a full blown panic attack. While he's better now, there was a day when he was highly sensitive to tags/seams/rough clothes/heavy blankets or coats. Just writing to tell you that bad as it is, you aren't alone and there are people here who will understand to the point of giving you understanding of his condition.
  11. Whats the dosage you use your yourself? I actually happen to have this product in our arsenal, bought originally for me more than a year ago. It's still in date so I can start it today as I take nothing else but a multi and omegas.
  12. Appreciate you input! What abx are used for lyme? Do you work with a LLMD? Thanks very much!
  13. I keep coming back around to Lyme. We have not tested thru Igenex, only labcorp. My ds16 is positive for strep titers and mycoplasma p. (or at least he was in april). Thru winter and spring we did 7 weeks of Azith 500 right into 6 wks of the Sammy dose of Augmentin XR right into 10 days of Biaxin CR once the myco was discovered. His gut was a train wreck. he was so, so sick. Homeopathy and TCM helped stabilize him after the abx nightmare. For homeopathy we saw the great and powerful Michael Payne. He was difficult to talk to, relied too heavily on zyto BUT he did put Gat on a remedy called Psy
  14. I'm searching for that email now but you really hit the nail on the head. For a few weeks I have an overwhelming feeling that it might be my time to get off the train. For the last five years and intensely during this last until very recently I somehow find the strength to go another day. I've always been so thankful for that tenacity but now it's nearly gone. Career and financial ruin, all nurture going out, nearly none coming back in, and a kid who's recovered enough to break away when he's motivated for short periods of time but not recovered enough to grant me my life. I work in the fringe
  15. Amber, did the 5-htp give her any stomach upset as she started on it?
  16. This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped. In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to
  17. I'm interested in this as well. We're on our third big trial of GABA in the last 5 years and I still can't see a difference. Have read recently that L-theanine is the better choice because it's more usable by the body.
  18. We've had a very similar recent course except we've not done ivig. Healing summer after a horrific winter. 3 weeks back to school after seeing pretty impressive results with Truehope protocol (which I still believe has significant merit) then a huge crash out of nowhere 4 wks ago. Hasn't been back to school since. In the last 10 months we've tried everything but ivig (homeopathy, TCM, diets...everything). I started reexamining the pieces of the DAN! protocol he was on in middle school (that turned things around steadily) and found all elements we used supported methylation. Have you considered
  19. truehope.com Pretty amazing story of how the product came into being. I've known about it for 5 years, since my son's last exacerbation. Paula swore by it for her son. Back in the day I didn't try it because we were just starting on the DAN! protocol and truehope seemed to simply duplicate much of the DAN! and I didn't have the money for both. It's never left my heart, though. Our current exacerbation is in its 8th month. He responds clinically to abx but has huge gut problems from them. We've had some success with TCM and homeopathy and dietary changes (a combination of all 3) but we had stil
  20. We're in the middle of week four for my son whose 16 and a junior. He missed second semester of sophomore year. He's pushing hard to get in the school everyday but more often than not he gets it done. Everyday that he does is another victory under his belt and he thrives on those. All the while, most of his friends still don't know and we only let a teacher in the loop when we absolutely have to. School admin knows but they keep quiet. He either blends in really well or not at all...very little middle ground. We just do our best to breathe through the days when he can't get in the door. I know
  21. Anyone in this group who was once part of that group remember Paula or know a way to contact her? Her son would be about 18 now. She was a big fan of Truehope in her son's recovery and we're having significant success with it now for the past 40 days or so. I'd love to reconnect with her if anyone has contact info they could share. Many thanks, Gat's mom
  22. I have nothing to base this on except my gut and my observations. My ds16 is a PANDAS kid. We are 8 months into a horrific episode. He never "comes down with" strep and never displays outward symptoms of strep so it's always an unhappy surprise when he backslides. Even though his titers support PANDAS, each of his 3 exacerbations have coincided with some other event (or stress) in his life. Age 8 and age 11 they were emotional stressors and life changes. This time, however, all was really good. The only thing going on was that I had 10 yr old carpet pulled out of my house and laminate flooring
  23. Hey Karen (and Misty), Do you think it would help if you were doing something prophylactic in nature? Would that help ease your mind that you are giving him an edge and not just sending him back as just another kid who may or may not contract a strep when it passes through? I'm not necessarily suggesting an Rx antibiotic but how about olive leaf extract (a natural antibiotic/antifungal/antiviral)? Also keep in mind that you probably have other protocols in place that will give him an advantage over his peers when it comes to contracting anything opportunistic...like exceptional probiotics
  24. We're just one case and others may disagree but in our house when he drops a behavior and picks up another, the new behavior is usually slightly less restrictive. Historically, that trend continues and eventually all behaviors dealing with the fear are dropped. Mine has the food contamination fear, too.
  25. Emmalilly, We need to talk. We're staring down the barrel at at least another semester at home. This should be his junior year. Sweetie, I'm so sorry you're sitting this semester out but you've got such an exceptional head on your shoulders that I know you will find things to do with your time that are way more than time fillers. A blog from the PANDAS patient perspective in your age group would make an outstanding read and you have the writing abilities to do it. I can assure you, I'd make sure Gat read it. I have clients in my practice that struggle with going on disability for their
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